Fibromyalgia Thread

[toocherie]

Talking with some ladies on another board it appears that there are quite a few of us with fibro--and I know others have posted on this board about it as well. I thought it might be good to share our ups and downs with this disease and new developments.

Welcome!

I was diagnosed about thirty years ago by a rheumatologist who was on the cutting edge of the disease. At that time it was called something else (which I can't recall) but he did the point test and told me I had it. I was re-diagnosed a year or so ago.

I also have OA so the medications I take for that seem to help the Fibro. I need more exercise (I know, I know) and when the weather changes I have a lot of pain.

What type of symptoms do you get and how do you relieve them?

[Boo Bear]

:wave2: I'm Bridgette, I'm 24 and I was diagnosed a little under 10 years ago when I was 15

I suffer from chronic headaches among many other things.

Another thing that could possible be attributed to fibromyalgia is reoccurring stress fractures in my feet. In my right foot, where it primarily happens, it's in my second metatarsal and gradually happens when I wear shoes without arch support in combination with being on my feet for long stretches of time.

During seasonal changes into the colder months I get severe joint pain in my hips, wrists, spine and ribs.

Right now I'm having a lot of trouble with my chest area radiating through to my back. I keep thinking that I need to take my rescue inhaler but it doesn't work. When I take an anti-inflammatory like ibuprofen it helps a little.

I've taken Lyrica but it made me really agitated so it wasn't worth it. As of right now I just cope. I also break a Loritab in thirds and take that when needed. I usually don't take more than 1/3 a day.

I just began Topamax for the headaches and it's REALLY helping. So the headaches are probably more migraine than Fibromyalgia.

I continue to have chronic severe pain at the base of my skull more than anything else. It is constant and rarely ever subsides. There are days where I struggle with the pain over control of my life. I always get through.

[toocherie]

Bridgette: I've also had repeated stress fractures in my feet. and now my feet are "morphing" (I don't know what else to call it) and the toes are turning in while the rest stays normal (which makes shoe buying a real pain!)

Other than Mobic, Advil and occasional prescription painkillers I just cope too. Rain is awful. The day or two before I'm really in pain--I am my own barometer. The other weird thing is that when I lived in Utah I always knew when it was going to snow because my nails would all snap off!

[Boo Bear]

Bridgette: I've also had repeated stress fractures in my feet. and now my feet are "morphing" (I don't know what else to call it) and the toes are turning in while the rest stays normal (which makes shoe buying a real pain!)

Other than Mobic, Advil and occasional prescription painkillers I just cope too. Rain is awful. The day or two before I'm really in pain--I am my own barometer. The other weird thing is that when I lived in Utah I always knew when it was going to snow because my nails would all snap off!

Yeah I'm my own barometer too. Usually when its about to storm I feel like my eyeballs are going to pop out :eek:

[toocherie]

Omigosh--so humid here--threatening rain--and I ache all over! Of course, that hasn't stopped me from clothes shopping, puppy shopping, tomato plant shopping and cat food/litter shopping. So far the only thing I wasn't successful at was the puppy shopping (but I have an appt. with a breeder at 4 p.m.)

I've found with fibro you just have to push through the pain . . . .

[arminnie]

Yeah I'm my own barometer too. I have a friend who will call and say "How are you doing?" Sometimes when I automatically say "Fine" -she will reply "No you're not - the weather is changing so I know you feel awful like I do."

[Boo Bear]

Omigosh--so humid here--threatening rain--and I ache all over! Of course, that hasn't stopped me from clothes shopping, puppy shopping, tomato plant shopping and cat food/litter shopping. So far the only thing I wasn't successful at was the puppy shopping (but I have an appt. with a breeder at 4 p.m.)

I've found with fibro you just have to push through the pain . . . .


Keep at it Cheryl, you'll find your corgi! (I read that somewhere, right? or did I dream that?)

[goofy4mykids]

Hi Im Kim and I was diagnosed about 3 years ago. I take Evail for the pain and that seems to help. I also had Cyber knife Radiation on my brain in 06' so complications from that can make it hard. I push forward and thank the lord I am here.. I have a DS 9 who has Asbergers Syndrome and a beautiful DD 4. I am tired of being tired all the time... I feel bad when I tell the kids or DH I dont feel well enough to do something or that it hurts when the kids want to hang on you... any advice on how to get through the bad days without feeling like you are letting your love ones down?
TIA-I am glad you started this thread!!:grouphug:

[Boo Bear]

Hi Im Kim and I was diagnosed about 3 years ago. I take Evail for the pain and that seems to help. I also had Cyber knife Radiation on my brain in 06' so complications from that can make it hard. I push forward and thank the lord I am here.. I have a DS 9 who has Asbergers Syndrome and a beautiful DD 4. I am tired of being tired all the time... I feel bad when I tell the kids or DH I dont feel well enough to do something or that it hurts when the kids want to hang on you... any advice on how to get through the bad days without feeling like you are letting your love ones down?
TIA-I am glad you started this thread!!:grouphug:

Nice to meet you Kim. I'm sorry that I have no advice for you about not letting your loved ones down, as I'm still trying to figure that one out for myself. I've never heard of Evail... what is it like? Any side effects?... Duh! What doesn't have side effects?! *sigh* It's been a tension headache filled headache for me today and yesterday. It hurts badly behind my ears today especially. :grouphug: to everybody. Keep staying strong!

[toocherie]

Hi Im Kim and I was diagnosed about 3 years ago. I take Evail for the pain and that seems to help. I also had Cyber knife Radiation on my brain in 06' so complications from that can make it hard. I push forward and thank the lord I am here.. I have a DS 9 who has Asbergers Syndrome and a beautiful DD 4. I am tired of being tired all the time... I feel bad when I tell the kids or DH I dont feel well enough to do something or that it hurts when the kids want to hang on you... any advice on how to get through the bad days without feeling like you are letting your love ones down?
TIA-I am glad you started this thread!!:grouphug:

Hi Kim--welcome to the thread. Could it be Elavil that you are taking? I know that Elavil is a commonly prescribed drug for fibro--it has been used for many years. I guess when it gets bad for me I try to be happy with the things that I CAN do--and I'm thankful for that. I'm sure your family understands and that they would rather have you not in pain.

[toocherie]

I have a friend who will call and say "How are you doing?" Sometimes when I automatically say "Fine" -she will reply "No you're not - the weather is changing so I know you feel awful like I do."

Yeah--it's really weird--especially when its going to rain. Just ache all over.

[bookwormde]

I know this is not a practical solution for most people but a best friend and business partner actually moved to Florida (west coast island) and it made all the difference in his quality of life.

bookwormde

[Momelie]

ROFL!!! I live on the west coast of FL, and while I really do better here than I do at our other place in TN, remember that FL has the rainy season in the summer - every single day!!!!! And yes, the fibro is an absolutely accurate barometer, I can always tell the minute it starts to fall!

[goofy4mykids]

ooops! Sorry It is Elavil that I am taking! We moved to GA a year ago for the warmer weather... I love it.

[stampin_fool]

HI Everyone,

I was diagnosed about a year ago and have been on Cymbalta for about 5 months with no relief in my symptoms. I am going to the doctor tomorrow to hopefully get her to give me something else to try so I am glad that I ran across this thread. I also take hydrocodone for the pain and that doesn't really help at all either. Like some of you said, I am tired of being tired and I am tired of being in pain to the point of tears some days. For those of you on the Elavil, what kind of side effect have you seen and has it helped you at all for the pain? We also live in GA but this winter has been so cold I don't think it has helped at all. Thanks.

Ronda

[goofy4mykids]

Hi Ronda! I have been on Elavil for over a year.. It has helped a great deal It took about a month before I felt any relief. It is also a Antidepressant. I started out on 50 mg and now take a 100mg about an hr before bed. Side Effects :it helps you sleep which is a good thing and it also helps with my headaches. I still am in pain daily (feel like I have the flu) the Elavil helps me manage it.

Today with the rain was a bad day... I get real snappy with the kids when I am in pain.

This was my first winter in GA, Im glad the weather here is not supposed to be this cold.....Although it was better than NJ!!

[stampin_fool]

We moved here from MA six yrs ago and it has been warmer than there. This is the first year I have been freezing during the winter. It certainly doesn't help the fibro. Does the Elavil help with the Fibrofog. I wouldn't mind if it helped me sleep since I can't seem to do that at night. Now during the day, I could fall asleep at the drop of a hat! I will have to ask my doctor about this tomorrow. Thanks for the info, I appreciate it!!!

Ronda

Hi Ronda! I have been on Elavil for over a year.. It has helped a great deal It took about a month before I felt any relief. It is also a Antidepressant. I started out on 50 mg and now take a 100mg about an hr before bed. Side Effects :it helps you sleep which is a good thing and it also helps with my headaches. I still am in pain daily (feel like I have the flu) the Elavil helps me manage it.

Today with the rain was a bad day... I get real snappy with the kids when I am in pain.

This was my first winter in GA, Im glad the weather here is not supposed to be this cold.....Although it was better than NJ!!

[goofy4mykids]

Ronda

I couldnt say about the fibro fog cause I have other issues with the brain, ie swelling and some scar tissue.

Good luck today at the Docs!

Kim

[michelle9343]

I was diagnosed with Fibro 3 years ago and lupus 2 years ago. I am currently taking way too many meds and everytime i go to my rhumy he just wants to add more....My biggest triggers are stress and being over tired. I use to be the energizer bunny now I am much more like eeyore!!!!
My feet, ankles and hips hurt the most and my headaches are horrible....I started going to a massage therapist but it cost way too much and it was only temporary relief.
It is really amazing how debilitating Fibro can be.

[Boo Bear]

Just checking in today. I hope everybody is having a better day today. I've been having a hard time the past couple of days. My core is still very sore from my sternum straight through to my spine. I am still short of breath and I have a pinching pain at the base of my skull that even the narcotics or naproxen won't soften. Nothing new for me really, but it's dampening my spirit because I finally have a free stretch of days to work around home to prepare for my move westward.

WHEW! Ok, I feel better now that I got that out... Now I'm going to go get to work! :yay:

HI Everyone,

I was diagnosed about a year ago and have been on Cymbalta for about 5 months with no relief in my symptoms. I am going to the doctor tomorrow to hopefully get her to give me something else to try so I am glad that I ran across this thread. I also take hydrocodone for the pain and that doesn't really help at all either. Like some of you said, I am tired of being tired and I am tired of being in pain to the point of tears some days. For those of you on the Elavil, what kind of side effect have you seen and has it helped you at all for the pain? We also live in GA but this winter has been so cold I don't think it has helped at all. Thanks.

Ronda

I was put on Cymbalta once and I just couldn't deal with it. I felt like I was crawling out of my skin so I went off of it. I am happy with my anti-depressants so I'm not sure if I should try something else?

I'm exhausted with the hydrocodone option as well, I take loritab because it has less APAP than the vicoden ex. Sometimes it gives me digestive upset too. :sad2:

Hi Ronda! I have been on Elavil for over a year.. It has helped a great deal It took about a month before I felt any relief. It is also a Antidepressant. I started out on 50 mg and now take a 100mg about an hr before bed. Side Effects :it helps you sleep which is a good thing and it also helps with my headaches. I still am in pain daily (feel like I have the flu) the Elavil helps me manage it.

Today with the rain was a bad day... I get real snappy with the kids when I am in pain.

This was my first winter in GA, Im glad the weather here is not supposed to be this cold.....Although it was better than NJ!!

I'm happy that your new home has been better for you during the winter. I know what you are talking about with the flu like symptoms. Sometimes I feel drained as though I have a fever or the flu. Hang in there!

I was diagnosed with Fibro 3 years ago and lupus 2 years ago. I am currently taking way too many meds and everytime i go to my rhumy he just wants to add more....My biggest triggers are stress and being over tired. I use to be the energizer bunny now I am much more like eeyore!!!!
My feet, ankles and hips hurt the most and my headaches are horrible....I started going to a massage therapist but it cost way too much and it was only temporary relief.
It is really amazing how debilitating Fibro can be.

Massages help me too, but they're a band-aid and it is frustrating not to be able to find a permanent solution. I got a deep tissue massage and it was HORRIBLE but the relief lasted awhile longer than a regular massage.

[toocherie]

Just checking in today. I hope everybody is having a better day today. I've been having a hard time the past couple of days. My core is still very sore from my sternum straight through to my spine. I am still short of breath and I have a pinching pain at the base of my skull that even the narcotics or naproxen won't soften. Nothing new for me really, but it's dampening my spirit because I finally have a free stretch of days to work around home to prepare for my move westward.

WHEW! Ok, I feel better now that I got that out... Now I'm going to go get to work! :yay:



I was put on Cymbalta once and I just couldn't deal with it. I felt like I was crawling out of my skin so I went off of it. I am happy with my anti-depressants so I'm not sure if I should try something else?

I'm exhausted with the hydrocodone option as well, I take loritab because it has less APAP than the vicoden ex. Sometimes it gives me digestive upset too. :sad2:



I'm happy that your new home has been better for you during the winter. I know what you are talking about with the flu like symptoms. Sometimes I feel drained as though I have a fever or the flu. Hang in there!



Massages help me too, but they're a band-aid and it is frustrating not to be able to find a permanent solution. I got a deep tissue massage and it was HORRIBLE but the relief lasted awhile longer than a regular massage.

It's funny--I get massages often and people are always jealous--what they don't understand is that with fibro it HURTS to get a massage--but I also am unable to move without regular massage. I am having fibro fog today--not sure why--maybe the new puppy is stressing me!

[Boo Bear]

It's funny--I get massages often and people are always jealous--what they don't understand is that with fibro it HURTS to get a massage--but I also am unable to move without regular massage. I am having fibro fog today--not sure why--maybe the new puppy is stressing me!

I agree, they are mostly painful. I'm sorry you're having a rough day, puppies can be stressful but they're so cute! Bella has such a sweet face but it also says "I am up to no good!" :laughing:

I'm having a much better day altogether. My mind has been sharp and focused. I went through every single stack and file of paper in my home it seems and I purged a lot of old bills and everything from before January 2009. I have two huge boxes... one labeled recycle and the other shred and each are full. It took until 3pm :eek: but I got it done! Then I strong-armed through my scrapbooking room and pulled a bunch of things to sell on ebay, made a backdrop, photographed, and now I'm about to list everything on ebay. Provided all of my campuses don't burn down in the fires, I'll have student loans and DL trips to pay for! :cool1:

I'm sad to hear Cheryl is having a crummy day, I hope everyone else is having a better one!

[Stacerita]

Just checking the thread out and offering support. :)

[toocherie]

Omigosh--took a little tumble Thursday night and yesterday was awful. Felt like I had been hit by a mack truck. Had my regular massage and lived through it--but it was really painful, especially when she worked on my left shoulder (which I unfortunately used to break my fall!) Doing better today--not nearly as sore all over--now if my fat lip will go away!

[Boo Bear]

Omigosh--took a little tumble Thursday night and yesterday was awful. Felt like I had been hit by a mack truck. Had my regular massage and lived through it--but it was really painful, especially when she worked on my left shoulder (which I unfortunately used to break my fall!) Doing better today--not nearly as sore all over--now if my fat lip will go away!

:hug: OUCH! Does heat help at all? Well, not for the lip but for the soreness from the fall. I'm sorry you landed on your face! :eek: That doesn't sound like a little tumble :scared: Take care of yourself and get some rest!



The weather here is rather temperamental today.... typical for Indiana in May. It can't make up it's mind. It rains and thunders when it's sunny! I did have an "ah ha!" moment just now though. Somedays I get these headaches that are unlike any other. They're right on the crown of my head and they aren't sinus or visual, and they only happen when I have my overall/general fibro annoying pain. I stopped, took a deep breath and tried to find the source. I began to massage my temples trying to find the source of tension and then it dawned on me.... I have been furrowing my brow.... it's really that simple! Silly, really. Goodness. How silly I must look when I'm out and about and my fibro gets the best of me... I walk around with a furrowed brow and people must think I'm so mean! :rotfl:

[toocherie]

Yeah--it was between my face and the wood floor--and the wood floor won!

That is funny about the furrowed brow--like my shoulder=-the problem is this teeny tiny muscle--I wouldn't even have known it was there but for the pain.

[Boo Bear]

I never take those teeny tiny muscles for granted. Why is it that the smallest ones that feel like they're THIS BIG?!

[Boo Bear]

I hope everybody is hanging in there and that Cheryl's shoulder and face are doing better ;) Right now my feet are tingling and asleep from the Topomax and it is absolutely killing the stress fracture problem areas, especially in my right foot. Ouch!

[goofy4mykids]

Hi Bridgette , I just started the Topomax Yesterday. Do you have any side effects? TIA Kim

[Boo Bear]

Hi Bridgette , I just started the Topomax Yesterday. Do you have any side effects? TIA Kim

Yeah I have a couple. I have a funny fruity taste in my mouth but it doesn't last forever. Then my appetite is slow. My feet and hands tingle. Thats about it.

[toocherie]

I never take those teeny tiny muscles for granted. Why is it that the smallest ones that feel like they're THIS BIG?! I don't know--you think it's going to be some big two inch across muscle and it turns out to be the weeniest thing. sometimes my massage therapist has trouble finding them--but when she does--YOWZA!

I hope everybody is hanging in there and that Cheryl's shoulder and face are doing better ;) Right now my feet are tingling and asleep from the Topomax and it is absolutely killing the stress fracture problem areas, especially in my right foot. Ouch!

The pain from the fall has subsided--thanks. Unfortunately, it looks like I really did a number on my front tooth when I fell--saw a specialist dentist yesterday and have to go back in two weeks and see if I need a root canal!:mad:

[Boo Bear]

I just went and had cranial sacral therapy and it changed me. I finally feel like there is hope!

[ireland_nicole]

Hi- I haven't officially introduced myself on this thread; I'm Nicole, I'm 35, and I've had fibromyalgia for 9 years, since just after my DD was born. I've tried different meds, not had full relief of course with any... as far as symptoms, have the typical pain that gets way worse w/ weather changes, particularly bad in my ankles, hips and wrists/hands but in bad weather, just feel like I got hit by a truck. The Rheumy says he knows there's something else autoimmune going on, too but can't figure out what it is. My labs are always all over the map, but nothing consistently off, I get a lot of low grade fevers, a lot of numbness in my hands, feet and sometimes face, and am having increasing swelling in my hands and a lot more muscle cramps where the muscles just kind of seize up. Moved to TX 3 years ago, and that has helped quite a bit, haven't had a bad flare (flat on my back 3 -7 days unable to even turn w/o agony) since I started 3xweek chiropractor about 6 months ago; also get massage 1-2 x month (like the rest of you, it hurts so bad, but helps keep the muscles supple.) I am really sensitive to drug side effects, so at the minute I take two aleve every morning (doesn't help w/ fibro pain, but seems to help some of the muscle spasming and keeps my fingers moving a bit) And I still have a drug called Zydol that I used to take when we lived in Ireland that hasn't expired yet. I only use the big drugs maybe once or twice a month when it gets so bad I can't function. I have two kids with special needs and a husband who travels a lot, so I have to keep going.
Thats about it; sorry to be so long!

[toocherie]

Hi Nicole! I've seen you post on Disabilities before but didn't realize you had fibro (or if I did I had forgotten it!)

We have many of the same symptoms--the muscles seizing up--I have that quite a bit in my hands. I call it "morphing"--because my hand will twist into a weird shape (and it hurts like you know what). I have probably had facial issues for 20+ years--how do yours manifest? I know that 20+ years ago I started feeling like the right side of my face felt "funny"--almost like it was hollow. We've done CT scans and all and can't find anything. It comes and goes. A year or two ago I had a lot of swelling on that side and my doctor could only figure it was a swollen parotid gland--so I got prescribed hot compresses and lemon drops--LOL.

It actually rained this morning here in SoCal--which explained why I was up in pain last night--yep, I'm my own barometer too.

I haven't heard of the medicine you mentioned--Zydol is it? Is it only available in Ireland or is it available here in the U.S.?

And are you originally from Ireland or were you living over there temporarily? It must be quite a switch to be in Texas!

Welcome!

Cheryl

[Boo Bear]

Welcome Nicole! I'm sorry to hear you're having so much trouble too, you sound very strong willed though. I've been getting a lot of low grade fevers too, but my core temp is usually 97.3 instead of 98.6 so a 99.5 degree temp feels like hell to me. Hang in there!

[ireland_nicole]

We lived in Ireland for 5 years, oy, the pain... it's cold and damp most of the time, so not exactly optimum conditions LOL. There were also very few services for our children there, so we had to move back to the states 3 years ago. We chose TX because it was warm, there was a good grad school nearby, DH could get a job, and there was a children's hospital. We like it here, and my fibro is better than it was. As far as my face, yep it's a transient numbness; but I also started getting ocular migraines last year where my vision would suddenly blur (lot's of fun while driving) and of course my hands are numb whenever I grasp anything. But I get by, when necessary on an ECV, I told my DH I'm not the energizer bunny he married, but at least I'm still a Timex- I take a licking but keep on ticking!

[toocherie]

But I get by, when necessary on an ECV, I told my DH I'm not the energizer bunny he married, but at least I'm still a Timex- I take a licking but keep on ticking!

LOL--that's the spirit! I think too often people take the way out that "I hurt, therefore I'm disabled, so I'm not going to contribute to society--I'll just sit at home and nurse my wounds"--I hurt all the time --but I still go to work everyday, see friends and family a lot and help with charitable causes. And of course go to Disneyland! LOL

I even did most of that before I had my double knee replacement surgery (arthritis issues)--talk about pain . . . . but I still went to work everyday but cut out the "extras"--i.e., didn't push my energy level so didn't go to shopping malls, didn't go to Disneyland, didn't go anywhere that took a lot of walking etc. How could I justify doing "fun" stuff at all if I didn't do the normal life sustaining things like have a job or maintained my family? It's like someone who is on disability for a bad back and yet goes out and hoes their yard or moves furniture--KWIM? You have to pick and choose what limited energy you can expend.

Now after the knee replacements I can walk pretty far, but because of the fibro and arthritis other places (my feet are morphing as we speak) still have some limits I have to self-impose. (LOL--my podiatrist can't believe I walk as much as I do!)

I also use an ECV sometimes--usually when on a multiple day trip--if I'm just going for one day I usually try to get by without it (unless I'm having a bad flare).

I imagine two special needs kids take a lot of time and energy--kudos to you for keeping going despite your fibro. And to Bridgette for getting her degree and going on to her graduate program. Go girls go!

[toocherie]

We lived in Ireland for 5 years, oy, the pain... it's cold and damp most of the time, so not exactly optimum conditions LOL. There were also very few services for our children there, so we had to move back to the states 3 years ago. We chose TX because it was warm, there was a good grad school nearby, DH could get a job, and there was a children's hospital. We like it here, and my fibro is better than it was. As far as my face, yep it's a transient numbness; but I also started getting ocular migraines last year where my vision would suddenly blur (lot's of fun while driving) and of course my hands are numb whenever I grasp anything. But I get by, when necessary on an ECV, I told my DH I'm not the energizer bunny he married, but at least I'm still a Timex- I take a licking but keep on ticking!

I noticed that you are going to WDW in August--have you been there that time of year before? Does the humidity make your fibro worse?

[ireland_nicole]

Actually, we go in early September (I know this year is moving fast) and the heat and humidity are exactly like here; I figure I'd rather be in pain at WDW than at home LOL. Plus, I do use the ECV when there, whether I hurt or not at that minute, because I know if I take a full day without it I won't be able to walk at all the next. I tend to use it to get to each major area and then walk around that bit, then move on... and sometimes DH will drive it for a little while so I can stretch my legs while pushing the stroller... now that I think about it, I'm sure there are people who might see us and thinking we're "faking it" but oh well...

I have to say, it's great to be around a group of people who are open about their challenges, but refusing to just lie down and accept defeat. Too often in my life I meet people at one extreme or the other, and it's hard to deal with that kwim? So, thanks! for starting and continuing this thread, especially for gals that are optomistic realists!

[toocherie]

Actually, we go in early September (I know this year is moving fast) and the heat and humidity are exactly like here; I figure I'd rather be in pain at WDW than at home LOL. Plus, I do use the ECV when there, whether I hurt or not at that minute, because I know if I take a full day without it I won't be able to walk at all the next. I tend to use it to get to each major area and then walk around that bit, then move on... and sometimes DH will drive it for a little while so I can stretch my legs while pushing the stroller... now that I think about it, I'm sure there are people who might see us and thinking we're "faking it" but oh well...

I have to say, it's great to be around a group of people who are open about their challenges, but refusing to just lie down and accept defeat. Too often in my life I meet people at one extreme or the other, and it's hard to deal with that kwim? So, thanks! for starting and continuing this thread, especially for gals that are optomistic realists!

Yep--that's me. Don't let it get you down but also deal with the challenges. And I do the same thing with the ECV--because experience has shown if I walk about the park all day I won't be able to move much the next day either-- and have been concerned that people think I'm faking--because I will drive to each major area and then walk around. I'm sure they're thinking--look at that fat lady on that scooter--she's too fat to walk around Disneyland. I am just WAITING for someone to actually say something to my face--I figure it's just a matter of time--and then I will pull up my capri leg and show then my surgery scars--LOL!! I am actually looking forward to our warm SoCal weather--little humidity--so I just feel better with the warmth and all--I sometimes use an electric blanket even in the summer just to keep myself warm.

(Of course, can't use it now that the new puppy chewed through the cord--oh yeah, need to get that fixed . . . . ) :lmao:

Glad you found us Nicole--wish you were local because Bridgette is moving out here and we're going to be celebrating her birthday at DL in July!

[Boo Bear]

Glad you found us Nicole--wish you were local because Bridgette is moving out here and we're going to be celebrating her birthday at DL in July!

Agreed! I can't wait to hang out with everybody! (I wish I had 2 of me each day until I move though... packing is a nightmare)

[toocherie]

Hi everyone~! I hope you are all doing well. The past two days have been cool and cloudy here so I've had a bit of trouble with my hands and feet but otherwise ok.

I found that quote in the siggie of one of the gals on my Vegas trip thread. It says:

"Run if you can, walk if you must, crawl if you have to but don't give up." - Dean Karnaze

I think this is a great theme for us!

[goofy4mykids]

Had a doctor apt this week Neuro... my MRI looks good! yea me!!! I have the clearance to start the gym and get this I can fly !!! I think I was crying I told the doc that I feel like Peter pan!! LOL!! I have been grounded for years.. feels sooooo good not to be in that red zone any more!!! :cool1::banana:


I know What I will celebrate!!!!:cloud9::woohoo::woohoo:

[Boo Bear]

Hi everyone~! I hope you are all doing well. The past two days have been cool and cloudy here so I've had a bit of trouble with my hands and feet but otherwise ok.

I found that quote in the siggie of one of the gals on my Vegas trip thread. It says:

"Run if you can, walk if you must, crawl if you have to but don't give up." - Dean Karnaze

I think this is a great theme for us!

I hope the weather gets better so you can get to feeling better!

What a great quote!

Had a doctor apt this week Neuro... my MRI looks good! yea me!!! I have the clearance to start the gym and get this I can fly !!! I think I was crying I told the doc that I feel like Peter pan!! LOL!! I have been grounded for years.. feels sooooo good not to be in that red zone any more!!! :cool1::banana:


I know What I will celebrate!!!!:cloud9::woohoo::woohoo:

That is great news! Way to go!



I had my 2nd cranial sacral therapy session last night and it went well. I'm in pain still, but it's much much MUCH better. There's hope for me!

[Brightsy]

Hi!
Thought I'd come say hello and all.
I just got told today that I have fibro.
The rheumatology doc sat down with me and went over all my blood tests (all basically normal or close to where they should be) and did a physical exam. He said fibro fits my symptoms and my history. He said a lot of the little things I'd had going offkilter over the years that they couldn't figure out were most likely because of the fibro. (mysterious infections, odd aches and pains that seemed to have no real source, the headaches, the fatigue, etc...)
So... I dunno how I feel about it all yet.
My BFF said after I told her (she was dx'd some 7 years ago) "Stop copying me!" LOL

[ireland_nicole]

Hi everyone~! I hope you are all doing well. The past two days have been cool and cloudy here so I've had a bit of trouble with my hands and feet but otherwise ok.

I found that quote in the siggie of one of the gals on my Vegas trip thread. It says:

"Run if you can, walk if you must, crawl if you have to but don't give up." - Dean Karnaze

I think this is a great theme for us!

Wow, I love this qoute!!

Had a doctor apt this week Neuro... my MRI looks good! yea me!!! I have the clearance to start the gym and get this I can fly !!! I think I was crying I told the doc that I feel like Peter pan!! LOL!! I have been grounded for years.. feels sooooo good not to be in that red zone any more!!! :cool1::banana:


I know What I will celebrate!!!!:cloud9::woohoo::woohoo:
Congrats! That is awesome!!
Hi!
Thought I'd come say hello and all.
I just got told today that I have fibro.
The rheumatology doc sat down with me and went over all my blood tests (all basically normal or close to where they should be) and did a physical exam. He said fibro fits my symptoms and my history. He said a lot of the little things I'd had going offkilter over the years that they couldn't figure out were most likely because of the fibro. (mysterious infections, odd aches and pains that seemed to have no real source, the headaches, the fatigue, etc...)
So... I dunno how I feel about it all yet.
My BFF said after I told her (she was dx'd some 7 years ago) "Stop copying me!" LOL

Well, at least now you're a member of a very exclusive club;:flower3:

[goofy4mykids]

I am leaving 2morrow for a long awaited trip .... and I am in sooo much PAIN!!! I havent slept for the past two nights... I ve been cleaning and ding laundy and my hands and toes lock up?! It is so painful and I have to pysically make them straight. I am so upset with myself cause I think I may have over di it the past few weeks... (Ive been helping church, VBS etc...) I am due for my period UGH!!! I am just a wreck!!

[Brightsy]

I don't have any thing but kind words and hug...:hug:

[ireland_nicole]

I am leaving 2morrow for a long awaited trip .... and I am in sooo much PAIN!!! I havent slept for the past two nights... I ve been cleaning and ding laundy and my hands and toes lock up?! It is so painful and I have to pysically make them straight. I am so upset with myself cause I think I may have over di it the past few weeks... (Ive been helping church, VBS etc...) I am due for my period UGH!!! I am just a wreck!!

well, you did what we all tend to do, which is try to keep going no matter what. can you rest today at all? Definitely rent an ECV, from an offsite vendor if possible so you have it accessible all the time. You may have to take it easy and medicate, but you'll still be on vacation- YEAH! Sending :grouphug: prayers and pixiedust:
Nicole

[brighteyes]

I know this is not a practical solution for most people but a best friend and business partner actually moved to Florida (west coast island) and it made all the difference in his quality of life.

bookwormde


YAY!! Now I have an excuse to move to Florida!! :rotfl2::rotfl2::cool1::3dglasses LOL Just kidding.

I am living here in Canada, and am far worse in the winter and when it rains. Although this summer I seem to be progressively getting worse. :confused3 I am 40, and have had fibro for at least 3 years now and diagnosed about a year ago.

Last year I started taking Evalil as well as Lyrica for the pain and sleep issues. Without the Evalil I wake up every hour. :headache: I recently thought it was not working anymore as I seem to very exhausted ALL the time. Well I went off it for a week to see and I had the worst pain of my life. All over achiness, and extrememe pain in my arms, wrists, shoulders, so bad I cried myself to sleep many nights. Needless to say I went back on it.

My symptoms are extreme fatigue, pain in joints, muscle pain, and sharp shooting pains in my legs, chest, and ribcage. I also have extreme pain in my calf muscles that prevent me from walking at times. That is the worst. I once had to spend two days off work after going for a 10 min walk because my calf muscles tightened up so bad I could not walk.

When in a really bad flare, I just lay down, try not to move a muscle, and apply as much heat as I can for as long as I can. Usually within a day or two the pain lessenes to a degree where I can somewhat continue with my life.

I have learned that now if I work for 3 hours or 6 or do an errand and it tires me out, I come home and take a nap. If others think that I sleep too much, well so be it, it is what I need to function. I do not make apologies anymore. My DS13 knows I need to take care of me, and lets me nap.

Steph

[brighteyes]

I am leaving 2morrow for a long awaited trip .... and I am in sooo much PAIN!!! I havent slept for the past two nights... I ve been cleaning and ding laundy and my hands and toes lock up?! It is so painful and I have to pysically make them straight. I am so upset with myself cause I think I may have over di it the past few weeks... (Ive been helping church, VBS etc...) I am due for my period UGH!!! I am just a wreck!!


Hi there. I know how you feel, I tend to overdo things as well, especially before a trip. I have had to take a day or two to rest in my room while at Disney, but at least I was at Disney. What I have done that helps me, is to just hang out at my resort room, take a swim in the pool, the water helps while loosening up those muscles in a gentle way. Get a good night's sleep, and hopefully you will feel better in the morning. :wizard: I am cheering for you.

Stephanie

[IvyandLace]

Hello, all! :wave: I was diagnosed with Fibro in 2005 after being on long-term disability from my Labor and Delivery nursing position d/t back issues. I have had multiple medication changes since my diagnosis but have been blessed to find a wonderful Rheumatologist who was the one to diagnose me. (I live in North Carolina.) I now take an anti-inflammatory for OA in my knee, Tramadol for pain three times/day, Tizanidine (Zanaflex) for muscle spasms three times/day, Lyrica three times/day, Cyclobenzaprine (Flexeril) for muscle spasms at night along with Trazodone to help me sleep more soundly. I have some severe sleep issues that are still going on but the Trazodone and Cyclobenzaprine definitely help. To be honest, once I was started on the Zanaflex and Cyclobenzaprine, I started to feel more "human" and was able to start working full-time again. The muscle relaxers made that much difference.

I get joint pain, fatigue, some "fibro fog" which varies from day-to-day, and muscle spasms with my Fibromyalgia. In 2007 I developed constant right shoulder/rib pain that was severe enough to place me on long-term disability again. Since that time, I have found that getting a 90-minute deep tissue massage at least two times/month helps tremendously. It is very expensive though so I don't always make it.

I now work at home which is such a blessing as my shoulder pain was aggravated by the physicality of my other nursing positions. However, I am very nervous about my job at this time, mainly because I have been out on medical leave ever since I pulled a muscle on the side of my neck approximately 6 weeks ago which caused me to have severe headaches. It has since faded but my fibro then acted up and I now have a virus which has knocked me down again. I have a *really* good job with EXCELLENT benefits so I must keep it.

I am married to a wonderfully supportive man who has been married to me for almost 12 years. We do not have children but are discussing the option. I must first get my weight under control and am seriously considering having weight loss surgery. What I'd like to ask each of you is this (and please feel free not to answer if you don't want to)-Have any of you chosen not to have children based on Fibro? If you do have children, would you have done anything different if you knew then what you know now?

Thanks...I'm excited to find a group on the DIS that knows exactly what I am going through.

IVY :flower:

[brighteyes]

[QUOTE=
Have any of you chosen not to have children based on Fibro? If you do have children, would you have done anything different if you knew what you knew now?

Thanks...I'm excited to find a group on the DIS that knows exactly what I am going through.

IVY :flower:[/QUOTE]

I would have still had my child knowing what I know now. Although sometimes I feel that I am not as bad as some other fibromites, but that is all up for interpretation isn't it?

I have been a single mom from the beginning, and would still have my child knowing that I would develop fibro. It is a struggle to get everything done, and most of the time, I don't get everything done...but I have learned to accept that. I hope that helps.

I usually think my teenage son doesn't get it or doesn't care, he's not too helpful around the house and does not seem to have an understanding when I am in a deep flare, however, when we went to Disney last Christmas, I had difficulty walking due to my calf muscles seizing and severe pain in my arches even though I had orthodics on. Well who was my helper, taking me by the hand and leading me through the crowds, and letting me lean on him when I was limping. He also did not complain when I couldn't walk anymore and went back to our room early. I love him for that!! :hug::hug: That to me was worth it's weight in gold!

Stephanie

[tiggspring]

Wow I'm so glad I found this thread. I have had Fibro and a host of other diagnosis for 15 years now. Have to make dinner now but I'll try to get back soon. Sending pain free vibes to all :goodvibes !!!

[toocherie]

Welcome and so glad you posted! I have been having a busy summer and was just thinking I needed to check in with everyone.

I have been seeing a homeopathic doctor and taking some natural medicines--the jury is still out--my hope is to be able to reduce the prescription drugs I take and have more energy--and it does seem like my energy has increased. So, time will tell.

[ireland_nicole]

Hello, all! :wave:* I was diagnosed with Fibro in 2005 after being on long-term disability from my Labor and Delivery nursing position d/t back issues.* I have had multiple medication changes since my diagnosis but have been blessed to find a wonderful Rheumatologist who was the one to diagnose me.* (I live in North Carolina.)* I now take an anti-inflammatory for OA in my knee, Tramadol for pain three times/day, Tizanidine (Zanaflex) for muscle spasms three times/day, Lyrica three times/day, Cyclobenzaprine (Flexeril) for muscle spasms at night along with Trazodone to help me sleep more soundly.* I have some severe sleep issues that are still going on but the Trazodone and Cyclobenzaprine definitely help.* To be honest, once I was started on the Zanaflex and Cyclobenzaprine, I started to feel more "human" and was able to start working full-time again.* The muscle relaxers made that much difference.* I get joint pain, fatigue, some "fibro fog" which varies from day-to-day, and muscle spasms with my Fibromyalgia.* In 2007 I developed constant right shoulder/rib pain that was severe enough to place me on long-term disability again.* Since that time, I have found that getting a 90-minute deep tissue massage at least two times/month helps tremendously.* It is very expensive though so I don't always make it.I now work at home which is such a blessing as my shoulder pain was aggravated by the physicality of my other nursing positions.* However, I am very nervous about my job at this time, mainly because I have been out on medical leave ever since I pulled a muscle on the side of my neck approximately 6 weeks ago which caused me to have severe headaches.* It has since faded but my fibro then acted up and I now have a virus which has knocked me down again.* I have a *really* good job with EXCELLENT benefits so I must keep it.* I am married to a wonderfully supportive man who has been married to me for almost 12 years.* We do not have children but are discussing the option.* I must first get my weight under control and am seriously considering having weight loss surgery.* What I'd like to ask each of you is this (and please feel free not to answer if you don't want to)-Have any of you chosen not to have children based on Fibro?* If you do have children, would you have done anything different if you knew then what you know now?* Thanks...I'm excited to find a group on the DIS that knows exactly what I am going through.* IVY :flower:

Hi! I have two kids and developed fibro between them. I didn't know at the time that both were going to have significant special needs. So that factors into my thinking. On the one hand, I had no idea to what depths of exhaustion I would sink and my kids require constant supervision and attention, there are days that I'm in agony and exhausted but taking a nap is not an option. On those days, I do wish a bit that there was a return policy to be completely honest. On the other hand, they are so amazing, and I can't imagine them not being in the world. I think one thing I definitely would have done is space them out more. and I would have bought a one story house b/c the stairs are soooooooo hard.

I'm in the process of having to go back to work for financial reasons, and I'm not sure how that's going to play out. I'm thiking I'll probably go back into home care nursing, because then at least there's not as much heavy lifting.



Welcome and so glad you posted!* I have been having a busy summer and was just thinking I needed to check in with everyone.I have been seeing a homeopathic doctor and taking some natural medicines--the jury is still out--my hope is to be able to reduce the prescription drugs I take and have more energy--and it does seem like my energy has increased.* So, time will tell.

So glad you're feeling a bit better; keep us posted!

[breyecutie]

Hello Everyone! I was diagnosed at 19 with Fibromyalgia. My senior year when I was 18 it was very painful. I was sick and hurt so bad. I went to many doctors and they would tell my mom and I that I was crazy. I had senior release and I would come home and be so tired and have to take naps. Then I found a doctor to listen to my problems and told me that I had it. They gave me antidepressant and some muscle relaxers. Now at 29 the muscle relaxers do not work. My pain now is very more intense since I have gotten older. There are some days that I can not move and my skin hurts to touch. Now in Dec. 08 I was diagnosed with Type 1 diabetes. I take 4 shots a day. I am so thankful that I have a very good supportive family that I have because there are sometimes I do not know what to do with everything going on.








:)My first disney trip will in October!!!!:)

[brighteyes]

[QUOTE=ireland_nicole;33099852]Hi! I have two kids and developed fibro between them. I didn't know at the time that both were going to have significant special needs. So that factors into my thinking. On the one hand, I had no idea to what depths of exhaustion I would sink and my kids require constant supervision and attention, there are days that I'm in agony and exhausted but taking a nap is not an option. On those days, I do wish a bit that there was a return policy to be completely honest. On the other hand, they are so amazing, and I can't imagine them not being in the world. I think one thing I definitely would have done is space them out more. and I would have bought a one story house b/c the stairs are soooooooo hard.

I'm in the process of having to go back to work for financial reasons, and I'm not sure how that's going to play out. I'm thiking I'll probably go back into home care nursing, because then at least there's not as much heavy lifting.


Wow Ireland, I can only imagine! I know the exhaustion I feel and I only have a pretty self sufficient 13 y/o. And both having high needs is a kicker especially if you are already exhausted.

I hear you on the stairs, I have enough trouble getting up and down my stairs gracefully on my own.

I have found this is definately a progressive illness. My pain is a lot worse than previous years, and I found this summer to be especially exhausting (even though I hardly worked). I have one more year of college to go ( I went back again - to try to get a better job) and I am finding I am dreading it because the last 2 yrs have been tough. I have pretty much slept my whole summer away.

I feel like that is my theme - any spare minute I have I sleep. I don't even have the energy to make dinner after I come home from work. I have to rest for 3 or 4 hours to get the energy to make a quick dinner. Is this common with you all as well?

[toocherie]

Well I'm not Ireland Nicole, but yes exhaustion is a hallmark of the disease. I am also recently not feeling great. However, at the suggestion of a homeopathic doctor I stopped eating grains and dairy for a couple of weeks and felt much better! Then I "fell off the wagon"--big mistake. the past couple of days have been awful! I'm back on the eating program again and hoping I'll get some zip back soon.

[tiggspring]

Hi everyone. :wave2: I finially made it back. This last week has been one of those weeks that I just couldn't think so waited to post. My name is Bonnie and I have had Fibro for 15 years. My official diagnosis in FMS, CFIDS, Chronic Toxoplasmosis and complicated migraines but I have a lot of bizarre symptoms:confused3 and my disease acts a lot like MS with good and bad days and symptoms taking turns as to which will be worse day to day or month to month.

I was diagnosed six months after my marriage to DH :hug: and two years after an injury at work. I was a milue therapist at a children's psychiatric hospital and was attacked by a kid. That was not unusual but we were short handed and it took 20 minutes before I got assistance in a restraint and I hurt my right shoulder quite bad. Next day had my first migraine, six months later my Fiancee (DH) noticed I would have trouble speaking and I would crash after eating out. 9 month later I stopped working my second job and switched my primary job from nights to days. By the time I was diagnosed I was doing home therapy and had crammed my week into t-thur so I would only work a few hours at the ends of the week so I could sleep in four days. Almost two years to the day of the incident I was diagnosed and put out of work by my Dr because I could not remember basic things like how to fill out my time sheet and how I drove to places :scared1:. For the next 2 years I saw 10+ doctors and tired 20+ med's and got to the point of crawling to get from room to room when alone and sleeping 16-20 hrs a day. Once I put an end of my guinny pig days things improved:).

I now take a lot of supplements use visualization ,do relaxation techniques and more recently I use custom aroma therapy. I'm on vicoden, ativan , flexeril, excedrin migraine all prn because if I use anything too long I get adjusted and then it is hell to get off of it. It took me a year to get off ativan. I only went back after a severe episode and found I could take it occasionally and not get dependant again. I was very athletic but now exersize is out. Doing anything consitantly put me right back to bed. But on good days I do try to take walks and do fun things with the kids. Gotta grab life when you can.:cool1:

I'm really looking forward to having place to share treatment ideas, give a support to newbies to the disease and a place to grumble on those days that are not so good. Sending pixi dust and no pain vibes your way!pixiedust:

[tiggspring]

brighteyes

I would give you the same advice my Dr gave me. Have your kids :love1:. If we find a way to treat or cure the disease and your too old to have kids then you will regret it. If you have kids you will always find a way to care for them. It may be hard but its a lot harder to have kids as you get older. She also told me most of her Fibro pt's went into some sort of remissions. That was true for me each pregnancy. It brought a 75% remission:dance3: at around 4 months that lasted 6 months post pregnancy just long enough to care for a newborn. My Drs joke I should just stay pregnant because I love it so much:woohoo:! I will say though, each time my full blown symptoms started to come back I would cry because it was like seeing a train coming at you that you could not stop from running you down:worship:. It is also harder when you have an older child that does not nap anymore. My migraines are triggered by sounds, light and lack of sleep so that is an issue with kids. We have from time to time had nanny's come in to help especially with housework which kills me. My husband also took full paternity leave and was able to work from home when my symptoms were bad (he is a social worker). If you have a plan it will be worth it. Although some days I say "what was I thinking!!" :crazy2: LOLROTF

[toocherie]

Bonnie--glad to see you back and to see your positive attitude!

As for me, I've been doing pretty good the last few days on my low-gluten diet, then "splurged" on a roll for brunch. Interestingly, I am now having pain in my feet that I haven't had in several days. So--no more bread for me!

[ireland_nicole]

Do you go completely GF? Or how much do you reduce? And how long did it take to see a difference?
Thanks

ps;
:grouphug: and Welcome! to all the "newbies"

[tiggspring]

Thanks toocheri! afraid not to positive today my mind is with me but my body is screaming:scared1:. It is hot and VERY humid in Pittsburgh today and we dont have AC! Our house doesn't need it but a few days a year so its not worth putting in but ugg! :sad2:
On a better note I had an Eye appointment because I had developed an occasional blind spot in the center of my eye which is a new symptom. I have complicated migraines and have had foggyness and loss of vision from the side for 14 yrs now. ( Oprah had half a face one day! ) I also have difficulty speaking sometimes from these "Auras" that never coincide with the headache ..go figure. Dr says eyes perfect especially for my age but I have a "bad brain"..well duh!::yes:: Anyone else have these symptoms?

On the Diet note If I go almost carb caffeine free I feel alittle better but I find it impossible to stick with something that means I'm stuck with eggs or grapefruit and other citrus as my main breakfast options. Caffeine also helps my pain med's work better. Does the Gluten free diet restrict all carbs?

Well hogged the thread long enough pain free vibes and pixie dust to all!pixiedust:

[Nitewarrior]

who would think you are researching Disney and you find people who suffer just like you do. I am 55 and have suffered for better that 25 years. I started with the headaches and paralaysis of the face joint pain and fatigue. next was diabetes now i have problem with the tendions in my feet retracting and the arches are falling. So I am here for support. we leave for Disney in 2 weeks and I a, so scared I will not be able to do this

[tiggspring]

Hi There Nitewarrior!
I know what you mean I was terrified I would ruin my kids first trip to Disney with a Major crash.

If you have a very specific plan geared to your needs you should be fine. I used Ridmax and don't think I would have survived without it. It allowed me to plan which rides to go on when so that we had the least amount of walking and waiting in line. Only twice did we wait more that 5 minutes in line last May :cool1:. I hear tour guide Mike is good too. Don't forget to get your Guest Assistance Card in case you need help in line etc. I cannot stand for long periods and have great difficulty with temp extremes so I had one in case I ran into trouble with an outdoor line or extremely long line. Luckily that was not a problem because of ridemax. I don't know If you have started packing but I was done packing two weeks before we went and spent the majority of those two weeks in bed. Last year we tried three times to go on vacation and I had to cancel the day before each trip because by the time I was done packing my body was done! This year I didnt allow anything to be scheduled for those two weeks and let everything go an I made it!:dance3:

Have a great trip look foraward to hearing how it went!

[Tweevil]

I just found this thread and am glad I did....

I am 38 have fibro amongst other issues and am living in constant pain. I have been on lyrica through to hydrocodone and am currently on cymbalta (I just cut down the dose to one a day). I have terrible nerve issues (neuorpathy) and it is exhausting at times. I live in fear that this is going to make me lose my job and push through during the day only to crash at night... I am a single parent so that is not an option for me.

I have investigating bypass to help with weight loss as that should help my symptoms and despite my efforts to be proactive with exercise and diet it never works. I have gained over 100 punds in the last 18 months.

That feels good to get it out there... no one in my life to really talk about it with - my son is 10 and I do what I can with him and we look forward to WDW because I actually feel better when I am down there - maybe it's the weather or pixie dust but I do feel more like the old me.

It's nice to meet all of you.

[toocherie]

That feels good to get it out there... no one in my life to really talk about it with - my son is 10 and I do what I can with him and we look forward to WDW because I actually feel better when I am down there - maybe it's the weather or pixie dust but I do feel more like the old me.

It's nice to meet all of you.

Hi Valerie--it's nice to meet you too! My name is Cheryl . . . . .

just fyi--bypass is not necessarily going to help--honestly I had it in 2001, don't eat that badly and have never completely lost the weight. I know I need to exercise . . . . . but it's hard.

I have had fibro since college days and have good and bad days. I think I have a "milder case" than some of you but have also struggled with fatigue the past couple of years. If your doc hasn't done it, please have him/her check your labs--it turned out I was anemic from the bypass and that was part (but not all) of the cause for the fatigue.

Anyway, welcome and I'm glad you've found this community.

Cheryl

[brighteyes]

brighteyes

I would give you the same advice my Dr gave me. Have your kids :love1:. If we find a way to treat or cure the disease and your too old to have kids then you will regret it. If you have kids you will always find a way to care for them. It may be hard but its a lot harder to have kids as you get older. She also told me most of her Fibro pt's went into some sort of remissions. That was true for me each pregnancy. It brought a 75% remission:dance3: at around 4 months that lasted 6 months post pregnancy just long enough to care for a newborn. My Drs joke I should just stay pregnant because I love it so much:woohoo:! I will say though, each time my full blown symptoms started to come back I would cry because it was like seeing a train coming at you that you could not stop from running you down:worship:. It is also harder when you have an older child that does not nap anymore. My migraines are triggered by sounds, light and lack of sleep so that is an issue with kids. We have from time to time had nanny's come in to help especially with housework which kills me. My husband also took full paternity leave and was able to work from home when my symptoms were bad (he is a social worker). If you have a plan it will be worth it. Although some days I say "what was I thinking!!" :crazy2: LOLROTF


Well I probably would consider having more if I wasn't single. I have been single for awhile so the probability of a pregnancy happening soon is pretty close to nil. :rolleyes1 Ha, I'm just saying. :laughing:

What I was saying is, that as a single mom, it is my number one worry that I continue to support myself and my DS. Additionally, I am in college to try to ensure a better job for the future - because I am really scared that I will not be able to continue to work one day. :eek: I have one more year of college left and it is the hardest program - besides nursing - and it has been really hard on me. My illness has progressed two fold since being in college the last two years. I am really dreading this last year. :sad2:

I wish I would have had more but it is not in the cards for me.

[brighteyes]

[QUOTE=tiggspring;33182825]Hi everyone. :wave2: I finially made it back. This last week has been one of those weeks that I just couldn't think so waited to post. My name is Bonnie and I have had Fibro for 15 years. My official diagnosis in FMS, CFIDS, Chronic Toxoplasmosis and complicated migraines but I have a lot of bizarre symptoms:confused3 and my disease acts a lot like MS with good and bad days and symptoms taking turns as to which will be worse day to day or month to month.

Hi tigg,

Just a thought because I have a friend with MS. have you had an MRI to rule out MS? My friend tells me often that some of my symptoms mimic hers.

She has also told me to up my vitamin D levels to really high. I can't remember how high but she said her doc does research on MS and other similar diseases and found that high levels of vit D can slow or sometimes halt the progression of autoimmune diseases. I don't think fibro is autoimmune? or is it? I can't remember??

Take care, I hope everyone has a relatively pain free day. :goodvibes

[tiggspring]

Brighteyes,

I'm afraid I had a major brain hiccup :rolleyes: I meant to post the encouragement to go ahead with children to IvyandLace and posted your name instead! Thing is I remember changing the post name because I thought I got the post mixed up. Thanks for making light of it, :rotfl:

I have had two MRI's one 14 years ago when I started having migraine auras at separate times form my migraines. They still cant tell me why. I mean the definition of an aura is a warning sign yet I get them without the headaches and If I can quickly stop a migraine with Excedrin, Ice and rest I will often lose my speech or have sight difficulties to replace it?? :confused3I had the second MRI last year when my "brain hiccups" ,as I affectionately call all my memory and verbal slips, became more pervasive than my pain or fatigue symptoms. Since my pregnancies my constant symptoms were pain, fatigue and migraines with one usually being worse than the others for 6 month cycles or so then they would switch. My long list of others symptoms would pop up randomly and last for anywhere from a week to 6 months. 18 months ago we noticed the cognitive stuff was much worse and I figured it would ease in six months. The Dr thought since it was so long since my last MRI we should double check for MS but the MRI found nothing. I find it interesting that when I'm pregnant ALL of the cognitive stuff goes away. I can even read Novels again! By 6 months post its gone. I read somewhere that a pregnant mothers brain shrinks at about 4 months pregnancy and stays that way until about 6 months post. They think it has to do with hormones, water retention and biological base for bonding. :idea:Wish they would study that more!

[tiggspring]

Hi Valerie!
On the weight front I have to agree with Cheryl I would move slowly on the surgery. I don't eat much at all and gain 15-20 lbs each time I have a Major crash. 100 lbs total from my original weight. Only after my kids could I lose weight about 75 lb.

Last winter I tried an over the counter sleep aid with Tylenol that I got for free figuring what would it hurt. I slept a little better and lost 1 lb every time I took it! Well I'm not going to stay on sleep aids and risk getting addicted or not hearing my kids at night so since I have had better luck with supplements I tried meletonin. Wouldn't you know I lost weight. Lost 35 lbs over 5 months by drinking more water and using meletonin! Only problem is I needed to stop taking it every 4 days or so because my legs hurt so bad. my guess is because I don't move as much when I sleep. The research I read also said not to take it for long periods. Since I have been off it I went to WDW and promtly crashed when home. Gained 18 lbs back although 7 of those I got from my trip to Disney from eating around the world! At least I EARNED those pounds:banana:Lots of studies are now saying sleep disturbance is a contributing factor in weight gain. If that is a problem for you then you might want to see if finding a sleep solution helps you lose weight.

Well speaking of sleep I really should try to get to sleep again before dawn! I agree with you It feels good to finally have a place to talk about this stuff. Sending pain free vibes and Pixie dust to all!pixiedust:

[brighteyes]

Hi Valerie!
On the weight front I have to agree with Cheryl I would move slowly on the surgery. I don't eat much at all and gain 15-20 lbs each time I have a Major crash. 100 lbs total from my original weight. Only after my kids could I lose weight about 75 lb.

Last winter I tried an over the counter sleep aid with Tylenol that I got for free figuring what would it hurt. I slept a little better and lost 1 lb every time I took it! Well I'm not going to stay on sleep aids and risk getting addicted or not hearing my kids at night so since I have had better luck with supplements I tried meletonin. Wouldn't you know I lost weight. Lost 35 lbs over 5 months by drinking more water and using meletonin! Only problem is I needed to stop taking it every 4 days or so because my legs hurt so bad. my guess is because I don't move as much when I sleep. The research I read also said not to take it for long periods. Since I have been off it I went to WDW and promtly crashed when home. Gained 18 lbs back although 7 of those I got from my trip to Disney from eating around the world! At least I EARNED those pounds:banana:Lots of studies are now saying sleep disturbance is a contributing factor in weight gain. If that is a problem for you then you might want to see if finding a sleep solution helps you lose weight.

Well speaking of sleep I really should try to get to sleep again before dawn! I agree with you It feels good to finally have a place to talk about this stuff. Sending pain free vibes and Pixie dust to all!pixiedust:

Tiggspring, no problem on the mixup I know how it can be. :rolleyes1

On this weight issue, I will have to agree 100% that lack of sleep will cause weight gain. In the summer of 2007, I weighed 160, then lost 35 lbs. :banana: I felt much better on my trip to Disney. Then I started college that fall, and by 2nd semester I was in constant pain, and sleeping for one hour at a time. 1st semester I spent many nights awake doing homework, by the winter I said who cares if the homework is done, I am sleeping, and I could not sleep for more than an hour. I would wake up at LEAST five times per night and be awake for about 1/2 hour to an hour each time. Needless to say I was exhausted. I think by March I had gained at least 40 lbs and weighed about 170. Then I quit smoking and gained another 10. Then I started my meds and gained about another 20 -30 lbs. :scared1:

I did my Weight Watchers again this past spring and NOTHING. I can't even lose a pound! I am sleeping better - (I mean I am not waking up to the point of being alert) due to my amitryptyline. I am however still not sleeping properly. I am hardly ever in deep sleep. I had a sleep study done, and they found that in 5.5 hours I had 29 "arousals". Meaning whenever I came close to stage 4 and 5 sleep I came back out of it. Shheesh! No wonder I am exhausted all day long.

I went off my ami cause I didn't think it was really working and hoped that I could try to lose some weight, but OMG what a mistake! I was in the worst flare of my life, for that whole week, I cried myself to sleep every night. I NEVER want to go through that again.

So my question is - How have any of you managed to lose weight? I am so scared to go for a simple walk. The last time I did a 5 min walk each way, my calf muscles siezed up and I could not walk for 2 days!! I am really at a loss here and want to lose weight.

In my first year of college for my psych class I also did a paper on fibro, to prove if it is a real disorder or imagined! Ironically enough, my arugement was a study that was done in which one group was deprived of deep stage sleep and woke the next morning with fibro symptoms. In stage 4 and 5 sleep, the body released chemicals that help the muscles and body repair itself from the day and restores our body for the next day. I was going to try to prove my thesis by showing studies with meds like lyrica, but found the study on sleep deprivation.

Sorry for the long post, but I believe so much that this is an issue because the dr. at the sleep lab said, I do not have sleep apnea, but many people with fibro have difficulty sleeping but cannot come to a conclusive reason why myself and others have such poor quality sleep.

I hope my long post made sense. :idea:

[Earstou]

who would think you are researching Disney and you find people who suffer just like you do. I am 55 and have suffered for better that 25 years. I started with the headaches and paralaysis of the face joint pain and fatigue. next was diabetes now i have problem with the tendions in my feet retracting and the arches are falling. So I am here for support. we leave for Disney in 2 weeks and I a, so scared I will not be able to do this
Rent a ecv! I did that my last trip when I celebrated my 50th birthday. Was apprehensive about doing it, but not anymore. It increased my ability to enjoy the parks sooooo much, and my family didn't have to wait for me this time (I was the one waiting for them to catch up!).
Really, the memories of my previous trip consist of me telling my family to go do what they wanted, while I either waited on a bench in pain, or dragged my aching body back to the hotel. Not fun.

[toocherie]

Rent a ecv! I did that my last trip when I celebrated my 50th birthday. Was apprehensive about doing it, but not anymore. It increased my ability to enjoy the parks sooooo much, and my family didn't have to wait for me this time (I was the one waiting for them to catch up!).
Really, the memories of my previous trip consist of me telling my family to go do what they wanted, while I either waited on a bench in pain, or dragged my aching body back to the hotel. Not fun.

Absolutely agree with this post--especially for a multi-day trip. I can do one day--if I can take it easy the next--for example I went to Disneyland and walked on Saturday this past weekend, but didn't do anything on Sunday. But if I'm at DL or WDW for more than one day I rent an ECV. It just makes the trip so much more pleasant and I'm not wiped out all the time.

[yoopermom]

Hi! Just diagnosed "officially" last week, but after watching my DF battle it the past fifteen years, I wasn't too surprised, unfortunately. I have had a CPAP machine for my sleep apnea the past five years, and was retested recently only to fifnd that my setting is ok. I'm one of those "odd" ones who can get through the day as long as I sleep 10-11 hours at night (and often take a nap), but am in big trouble if I sleep less! I would suggest a sleep test to anyone who hasn't had one yet. As to the weight loss surgery, I had lapband done two years ago, lost 50 lbs (when I still felt good), but since my fibro symptoms have started (9 months ago) have gained them back +. So don't assume it'll be an easy answer. Since my diagnosis I have made a firm commitment to going to the Y every day. On great days, I walk on the treadmill and swim, on ok days I use the exerbike and swim, and on bad days, I'm lucky to be able to float around in the water and gently stretch. But at least I'm trying! I do have an apt. with a p/t who specializes in fibro, so hopefully she'll have some good ideas. Nice to meet y'all!
Terri

[ireland_nicole]

who would think you are researching Disney and you find people who suffer just like you do. I am 55 and have suffered for better that 25 years. I started with the headaches and paralaysis of the face joint pain and fatigue. next was diabetes now i have problem with the tendions in my feet retracting and the arches are falling. So I am here for support. we leave for Disney in 2 weeks and I a, so scared I will not be able to do this

I agree w/ the other ladies, please rent an ECV; if you're having the find of pain you are already, I don't see how you can try to walk the average 6-10 miles/day w/o at the very least, a pretty big flare. I use TourGuidemike and his plan is a lifesaver for me, plus, I try to build in rest.


Question: I have tried Lyrica and Cymbalta, but they made me feel so nauseaous and dizzy I had to stop. Has anyone found a med that helps at all that doesn't cause this?

[RNMOM]

I've been on the DIS forever but never come over here. I'm glad I did. I am also a Fibrofemale. My name is Cordia and I am 55. I started first with psoriatic arthritis about 4 years ago and then started having flu like symptoms and fevers. Yep, fibro. I have actually had several pressure points for many years but ignored them.

Sleep. Ahh blessed sleep. I worked night shifts for many years and can't get off that schedule. I love being awake at night and hearing all the night sounds like the tree frogs and crickets. It is deafening tonight. Oh yeah, the racoons that visit our garbage cans every night too. Dang pests.

I take flexaril as I am on effexor already and my Rheumy didn't want to add more to that. I did try amytriptaline for a couple weeks but no benefit from it. I also tried topomax as I guess it helps some but not me. I have lots of knee, ankle and hand pain. Due to the arthritis I have a couple fingers and toes that are swollen nearly twice normal size. It is painful and especially when I wake. I use compression gloves and that helps some. I try to stick with my darvocet but occassionally take a vicodin. I became allergic to NSAIDS and they were what helped me the most. I miss my aleve. :mad:

It is too cool to run the a/c and I always hurt more when the windows are open. I love the fresh air but I feel like someone beat me up. Money vs. pain. What to choose??? Really I choose the fresh air most of the time.

It is nice to have some friends who understand. Thanks for listening. :lovestruc

Added: Yes, get the ECV. I have owned mine for 3 years now and I get out to the mall and movies and craft fairs and things I have had to miss for years. I can't handle getting it out by myself so I am still limited to having someone in the family with me but I still have freedom I need. I have used one at WDW for the past 4 trips and love it.

[tiggspring]

Hi ladies!:wave2: Glad to see the thread getting so active!

Its 3:30am EST and I'm still awake!:laughing:

I have never done a sleep study. Have thought about it but after all the 13 dr's and their "guinea treatments" made me so sick 15 yrs ago:worship: I stopped experimenting and started to focus on coping. (dont get me wrong most were really trying to help!)

Did the sleep studies give you any practical information or did they just reinforce what you already knew? I dont sleep well and I know that not just because I'm awake late or dose in and out of pain but I RARELY dream anymore. My husband used to love to hear about my dreams because they were doozies::yes:: I even used to sleep walk. One night my mother found me packing my clothes :upsidedow Now I never remember dreaming. Any thoughts?

I'm considering Myofascial Trigger Point Therapy. Has anyone esle tried this?

Just found an expert:surfweb: who teaches at the only school specializing in it and he is close enough for me to drive to if my husband is in the position to drive me home should I have an unexpected attack. I recently read that some of the trigger points supposidly create some of my weirdest symptoms like the heart attack and stroke like sysmptons that have no cause. I doubt my insurance will cover it so if I can figure the money and travel I'll try.

Well pain free vibes, sleepy bugs and pixie dust to all!pixiedust:

[tiggspring]

Oh I forgot...Brighteyes what are you studying? I can't imagine going back to school, Fibro and a DS. The fact you are floating all this is proof you rock!:cool1:
My youngest got early admission to Kindergarden this year and it is a releaf because I dont think I could handle another year 24/7. She is a wonderful sweet girl but at 4 about to turn 5 she is busy. My husband goes back to school this year and without his help I'd be sunk with one still at home. Your in my thooughts as the school year begins.:hug:

[Earstou]

I did a sleep study 2 years ago. Found out I wake about 8 times an hour, but I don't have sleep apnea. Also had pulmonary function test done at the same time.
I have progressive muscle weakness due to Chiari, and it is now affecting my lungs :scared1:, so that is probably why I'm not sleeping well.
Also due to the breathing problems, I have to be careful of medications. So many knock me out, and I can't take anything that might suppress my breathing.
Weird thing, I had a neck fusion 3 years ago. Since that time, my fibro has been much better! I still get occasional flares, weather still affects me, and I hurt any time I really exert myself, but I don't have the daily overwhelming pain like I used to.

[brighteyes]

Question: I have tried Lyrica and Cymbalta, but they made me feel so nauseaous and dizzy I had to stop. Has anyone found a med that helps at all that doesn't cause this?


When I first went on my Lyrica, it made me feel like this and after about a week or two it went away, HTH. :goodvibes

I was taking 50 mg twice daily. :goodvibes:goodvibes

[ireland_nicole]

Hi ladies!:wave2: Glad to see the thread getting so active!

Its 3:30am EST and I'm still awake!:laughing:

I have never done a sleep study. Have thought about it but after all the 13 dr's and their "guinea treatments" made me so sick 15 yrs ago:worship: I stopped experimenting and started to focus on coping. (dont get me wrong most were really trying to help!)

Did the sleep studies give you any practical information or did they just reinforce what you already knew? I dont sleep well and I know that not just because I'm awake late or dose in and out of pain but I RARELY dream anymore. My husband used to love to hear about my dreams because they were doozies::yes:: I even used to sleep walk. One night my mother found me packing my clothes :upsidedow Now I never remember dreaming. Any thoughts?

I'm considering Myofascial Trigger Point Therapy. Has anyone esle tried this?

Just found an expert:surfweb: who teaches at the only school specializing in it and he is close enough for me to drive to if my husband is in the position to drive me home should I have an unexpected attack. I recently read that some of the trigger points supposidly create some of my weirdest symptoms like the heart attack and stroke like sysmptons that have no cause. I doubt my insurance will cover it so if I can figure the money and travel I'll try.

Well pain free vibes, sleepy bugs and pixie dust to all!pixiedust:

My sleep study showed I did have Sleep Apnea. The first question the dr said was, you have a serious chronic pain condition, dontcha? I was like, um yeah... apparently something in our delta waves is totally different? It's late, so I'm not completely sure; but anyway, the mask really does help; i don't wake up nearly as much at night, and am not falling asleep at red lights either. I do take nuvigil, and that helps me stay more alert, too.
I tried the Lyrica for over 2 weeks with no improvement in symptoms, so I think it's out for me.

[Christine9125]

My name is Chris and I was found out 4 years ago I had Fibro. Just felt achy all the time. Now the doc has me on 2 different pills, plus a sleep pill. My symptoms are good, going to the gym 3 days a week, but I am always tired. I had the sleep test and I do have sleep apnea. I still do not feel rested.

[brighteyes]

Oh I forgot...Brighteyes what are you studying? I can't imagine going back to school, Fibro and a DS. The fact you are floating all this is proof you rock!:cool1:
My youngest got early admission to Kindergarden this year and it is a releaf because I dont think I could handle another year 24/7. She is a wonderful sweet girl but at 4 about to turn 5 she is busy. My husband goes back to school this year and without his help I'd be sunk with one still at home. Your in my thooughts as the school year begins.:hug:


Hi Tiggspring,

I replied to your question the other day, but don't know what happened to it? I must have been having a really sleep deprived day... I will respond tomorrow too tired now...:upsidedow

[brighteyes]

Oh I forgot...Brighteyes what are you studying? I can't imagine going back to school, Fibro and a DS. The fact you are floating all this is proof you rock!:cool1:
My youngest got early admission to Kindergarden this year and it is a releaf because I dont think I could handle another year 24/7. She is a wonderful sweet girl but at 4 about to turn 5 she is busy. My husband goes back to school this year and without his help I'd be sunk with one still at home. Your in my thooughts as the school year begins.:hug:

Sorry tiggspring,

Still recovering from a painful flareup after cleaning all the tree sap from my car on Saturday. :scared1: Needless to say, that after all this, I am taking my car to a pro and paying them to wax it for me.

I am taking social services in school. It is just a diploma program but wholly intense. It's brutal. II want to be an Educational Assistant in a Special Ed class. I will lean more to the behavioural side of things as working with severely developmentally challenged children and those with autism would be very physically challenging.

My diploma will be equivalent to an EA diploma or a Child Youth Worker. So I am just lucky it worked out this way, cause I just decided that I don't want to counsel people. Apparently, I am good at it, but don't want to do it. :rotfl:

I say Kudos to you for taking care of a young one. If my DS was that young now, I don't know how I would cope. :confused3 At least now when I am in a bad flare, I don't have to look after DS so much cause he is 13. I wish sometimes he would take care of me sometimes, but that doesn't look like it will happen anytime soon. :rotfl: So enjoy your rest, you deserve it. You sound like an awesome mom!!

The biggest challenge about school is I tend to get OCD when I am so busy with school and that makes me focus on school the most and I don't take care of myself properly. I procrastinate and then I am doing things last minute and they take waay longer cause then I obssess over it. Let's just say, I am a mess. :eek: So I don't get enough sleep or eat properly, and never excercise. I don't do that now, who am I kidding? :rolleyes1 So it takes it's toll, I am hoping I can pull it together a little more this year. On the upside my marks are awesome, all A+ and one b.

I guess I am saying I make it harder on myself which is not good. Only one more year.:banana:

[brighteyes]

I am extremely overwieght and need to lose about 90 lbs!! :scared1: Wow. That was really hard to say. Just two short years ago I weighed 130 now I weigh 210 or so.

Anyway, my question is, What type of excercises if any do you do? My calf muscles are very painful and feel like they are not long enough. So should I start walking a few minutes a day?

I would like to get an elliptical machine but don't know if that's a possibility right now. I am in such bad shape and from the fibro that any thing as little as carrying something a little bit heavy puts me in pain for at least a day!

I am really still upset about all this. Is this normal, I am still pissed off, I guess you could say that I can't do what I used to be able to. Have any of you come to accept your illness?

Anyways, I don't want to just let this incapacitate me, don't want to gain any more weight and want to be able to move without pain.

Any advice??

[Christine9125]

I am extremely overwieght and need to lose about 90 lbs!! :scared1: Wow. That was really hard to say. Just two short years ago I weighed 130 now I weigh 210 or so.

Anyway, my question is, What type of excercises if any do you do? My calf muscles are very painful and feel like they are not long enough. So should I start walking a few minutes a day?

I would like to get an elliptical machine but don't know if that's a possibility right now. I am in such bad shape and from the fibro that any thing as little as carrying something a little bit heavy puts me in pain for at least a day!

I am really still upset about all this. Is this normal, I am still pissed off, I guess you could say that I can't do what I used to be able to. Have any of you come to accept your illness?

Anyways, I don't want to just let this incapacitate me, don't want to gain any more weight and want to be able to move without pain.

Any advice??

I have been going to a gym, the elliptical is much harder for me then just the treadmill-they advise against it. They are also coming up with a workout for me due to my fibro. I meet with the trainer tonight, I will let you know how it goes.

[brighteyes]

I have been going to a gym, the elliptical is much harder for me then just the treadmill-they advise against it. They are also coming up with a workout for me due to my fibro. I meet with the trainer tonight, I will let you know how it goes.

Thanks, that would be great! I thought the elliptical because there is no impact. Walking is very painful for me. Let me know how it goes. Good luck.

I used to go to physio but just did stretching for my whiplash but no excercise that would help me lose weight, that's for sure.

[TLSnell1981]

I am extremely overwieght and need to lose about 90 lbs!! :scared1: Wow. That was really hard to say. Just two short years ago I weighed 130 now I weigh 210 or so.

Anyway, my question is, What type of excercises if any do you do? My calf muscles are very painful and feel like they are not long enough. So should I start walking a few minutes a day?

I would like to get an elliptical machine but don't know if that's a possibility right now. I am in such bad shape and from the fibro that any thing as little as carrying something a little bit heavy puts me in pain for at least a day!

I am really still upset about all this. Is this normal, I am still pissed off, I guess you could say that I can't do what I used to be able to. Have any of you come to accept your illness?

Anyways, I don't want to just let this incapacitate me, don't want to gain any more weight and want to be able to move without pain.

Any advice??

You may try to find a water aerobics class for arthritis patients. The water is warm and helps ease the pain. I started feeling better as I started to lose weight...it helped quite a bit. I rarely take pain meds as this adds to the weight issue.

I still get ticked at times. I try not to stress over it...makes it worse. They hardest part is that not many folks understand what we go though. I've had a pretty good summer, but the weather's changing and I've overdone it a bit. So, today I'm doing nothing. I've learned to read my body. I know I'm going downhill when I get irritable, my memory gets foggy and I'm tired, tired, tired.... Pace yourself, do what you can and then rest.

You're not alone!:grouphug:

[ireland_nicole]

I have an eliptical at home at it has been good for me; It definitely is less impact than other machines, which I find helpful. Mind you, I am still only up to about 5 minutes at a time on it, but I've worked my way up from about 30 seconds. I use it at least a couple of times a day and I find that it seems to be keeping me a bit more limber. I also walk with a friend who has RA, so we don't get frustrated w/ each other when we only manage a few blocks or have to go slower sometimes. I used to do yoga, but can't fit it into my schedule right now. I have a Wii fit that I still need to try out. I also swim when I can but the pool needs to be heated, otherwise my muscles "seize up". I try to do gentle stretching, too in the mornings even though it hurts because it seems to make that tight painful feeling go away sooner if that makes any sense. I have also gained significant weight since my dx, and get frustrated, because I know that's making it worse, but I can't seem to lose any. It has leveled off, but I'm still up over 80 lbs.

[tiggspring]

Hi Guys!

Beautiful day her in Pennsylvania I'm hoping to get some juice out of the good weather since last week was a nightmare for me. 5 straight days of continuous migraine:eek:. Every time I thought I might get it down to "just a headache" I would need to bend over to do something, the kids would yell, etc and I was right back to Ice packs and bed. Even increased my pain med's I was so desperate. I admit I sat on the couch and cried for about 10 min on day five. Just couldn't take it any more. All my kids now in school for first time (Including my big baby DH LOL) so I slept the first two days too tired to even be sad about the change. With the sleep and the weather changing things seem to be improving. Sorry to hear about your bad spell Brighteyes. If misery likes company than you had lots of comapny from me!:laughing:

[tiggspring]

Regarding the weight thing it is one of the hardest things to deal with. On a day I can appear "normal" I'm still not looked at the way I used to be because I'm fat. I too was 130lbs size 8-10. Like I have said before every crash brings 15-20 lbs. I'm now up 17 from May because I crashed after returning from Disney. I have been as low as 160 after my son was born. Last fall I had gotten up to OMG dare I say it 235 lbs!:scared1: Then from Oct to May I had gotten out of a insomnia mode started using meletonin and losing a little weight . lost a total of 50 lbs. I got into a size 14 bathing suit for the first time in 6 years! People started to look me in the eye again. Ever notice how when your weight goes up to a size 16 or above people don't look at you the same as the did when you were a size 8 or 10? For me It is the sleep not the exercise or eating that causes weight gain.

I have a Pilate's Machine that I like and have tried on and off. I need support when I do exercises. When I'm good its great. however, when I'm bad I always have to decide what do I want more exercise or to take the kids to the park or watch a soccer game or go to a museum. I cant do it all so I use my daily activities as my exercise. My Dr told me to do that many years ago when I bought a treadmill. She warned me I would probably over do that and I may be better becoming more functionally active.:thumbsup2

[tiggspring]

Guess I really need to "talk" after the last week LOL!

As far ar the accepting my illness goes well that's a yes and no. :upsidedow I have learned to ride out most of my symptoms. I tell people its like being in childbirth. If you fight it the pain gets much worse if I use relaxation, imagery and creative planning of med's and energy I do better. I am very good at accepting that if we go to a museum I may need to leave early because I'm tired. We now become members of anyplace we like to go so the pressure is off of me to stay.

I do have great frustration with my weight, my memory/concentration issues and not being able to work because they affect how people look at me and how much I contribute to the world around me now. I come from a family with a Puritan work ethic. There is no excuse not work. to this day I'm always on the lookout for some career I can pursue when "I get on my feet". My husband used to call me Tigger because I bounced from one commitment to another without a misstep and I really miss those days. Most of all I really hate looking dumb and the memory stuff makes it pretty hard to look put together sometimes.

I have tried to look a the silver lining to all this. The only thing I have come up with is that I never would have been able to stay home with my kids if I didn't have the Fibro. While I have not been the Mother I have wanted to be I have been here for everything. I am hoping my kids will look back and not think about the days I yelled and was grumpy but at the fact that I was hear every day fighting to care for them and keep things "normal" As far as acceptance It does get easier but I think we need to get mad once in awhile to keep fighting. Getting mad:mad: for me is about being hopeful that I will get better someday and frustrated that its not right NOW! Hang in ther Brighteyes we know where your comming from!:grouphug:

Pain free vibes:goodvibes and Pixie dust to all! pixiedust:

[Christine9125]

You may try to find a water aerobics class for arthritis patients. The water is warm and helps ease the pain. I started feeling better as I started to lose weight...it helped quite a bit. I rarely take pain meds as this adds to the weight issue.

I still get ticked at times. I try not to stress over it...makes it worse. They hardest part is that not many folks understand what we go though. I've had a pretty good summer, but the weather's changing and I've overdone it a bit. So, today I'm doing nothing. I've learned to read my body. I know I'm going downhill when I get irritable, my memory gets foggy and I'm tired, tired, tired.... Pace yourself, do what you can and then rest.

You're not alone!:grouphug:

I also agree with the water aerobics, I try to do them when ever I can, just go to a pool

[Christine9125]

I have an eliptical at home at it has been good for me; It definitely is less impact than other machines, which I find helpful. Mind you, I am still only up to about 5 minutes at a time on it, but I've worked my way up from about 30 seconds. I use it at least a couple of times a day and I find that it seems to be keeping me a bit more limber. I also walk with a friend who has RA, so we don't get frustrated w/ each other when we only manage a few blocks or have to go slower sometimes. I used to do yoga, but can't fit it into my schedule right now. I have a Wii fit that I still need to try out. I also swim when I can but the pool needs to be heated, otherwise my muscles "seize up". I try to do gentle stretching, too in the mornings even though it hurts because it seems to make that tight painful feeling go away sooner if that makes any sense. I have also gained significant weight since my dx, and get frustrated, because I know that's making it worse, but I can't seem to lose any. It has leveled off, but I'm still up over 80 lbs.

I can walk longer using the treadmill then the elipter is why I like it, I am like you, can only do about 5 minutes elipter vs 35-40 on the treadmill

[brighteyes]

Thanks everyone for the replies and the support. I too feel I gained weight when my sleeping was at it's worst. I just feel so pathetic that I can't move for two days cause I washed my car. OMG are you kidding me? That is what I feel like. :sad2: Being a single mom for my whole DS's life, I am pretty independent, so that really bugs me.

I would post pics from my first WDW trip to the second if I knew how. Just a span of 16 months. You all would be :scared1: really shocked. I know I am overweight, but I can only see my stomach. So when I walk by a window and catch my reflection that is my reaction. :scared1:

I have orthodics and even with those in I get shin splints if I walk less than a block and my calf muscles seize up, sometimes for days. I am hoping an elliptical will get me limbered up a little bit and lose the weight. My knees are in pain with the slightest movement.

Do you all find when you are having a bad flare of fibro fog, that you are swollen up. My eyes, my face, everything puffs out on those days. My employer was like :eek: "What happened to you?" So I got sent home.

All the best to you out there. I'm glad to know you can all relate, but sad that you all can relate.

:hug::hug:

[brighteyes]

I have an eliptical at home at it has been good for me; It definitely is less impact than other machines, which I find helpful. Mind you, I am still only up to about 5 minutes at a time on it, but I've worked my way up from about 30 seconds. I use it at least a couple of times a day and I find that it seems to be keeping me a bit more limber. I also walk with a friend who has RA, so we don't get frustrated w/ each other when we only manage a few blocks or have to go slower sometimes. I used to do yoga, but can't fit it into my schedule right now. I have a Wii fit that I still need to try out. I also swim when I can but the pool needs to be heated, otherwise my muscles "seize up". I try to do gentle stretching, too in the mornings even though it hurts because it seems to make that tight painful feeling go away sooner if that makes any sense. I have also gained significant weight since my dx, and get frustrated, because I know that's making it worse, but I can't seem to lose any. It has leveled off, but I'm still up over 80 lbs.

Do you mind me asking what type and model elliptical you have. I looked at some today but don't know which ones are good. I am short so I am sure that plays a role too in which kind to choose.

The front part of my ankle where my foot meets my leg already hurts from being on them today in the store. That was only a few minutes each one. :rotfl:

I know stretching helps I used to go to physio, but now t hat I've stopped stretching hurts, evne though I know it will help.

I didn't know if overweight people could do yoga. :love::confused:

[tiggspring]

Yes I swell up with the heat ,fatigue and flares.I tried the flat belly diet and the sassy water was good for this but kind of a pain to make so I haven't been making it consistantly.

Toocheri how is your geutton free diet going? Has it helped with the water retenton?

Ireland nicole doent the eliptical hurt your hips? Mine hurt just thinking about it.lol

I will post the sassy water recipe next time I'm on my computer. Its easier to post plus I have to find recipe. May be a few days before I'm back on.
Pain free vibes and pixie dust to all!

[DisneyMim]

I just found this thread and am so glad I did!!

I have fibromyalgia also. It's been five years now and it took me a long time to accept the reality of it. When I finally did I realized that I could not do some of the things that I have always done, BUT there was still plenty of things that I could still do. I try very hard to just concentrate on that. Like all of you I have been to doctors, specialists, etc. and have tried different things. With me it's worse in the cold and when the weather changes. I get migraines too, although the hormonal ones stopped after I went through menopause. My migraines usually are related to weather and sometimes stress (which my doctor tells me to avoid, HA HA). I am not on any pain killers for the fibro, except exedrin migraine which helps. I also have high blood pressure and am on pills for that. I try to walk and exercise and that helps. I am constantly telling myself to keep putting one foot in front of the other and I have been able to do it, but know that a lot of people aren't as lucky as I am.

I loved reading everyone stories and hope and pray that all of you are well and get better and better every day. It really helps to know that you are not alone. Thanks for this thread. I will use my Disney ending...

Enjoy The Magic!!

[brighteyes]

Yes I swell up with the heat ,fatigue and flares.I tried the flat belly diet and the sassy water was good for this but kind of a pain to make so I haven't been making it consistantly.

Toocheri how is your geutton free diet going? Has it helped with the water retenton?

Ireland nicole doent the eliptical hurt your hips? Mine hurt just thinking about it.lol

I will post the sassy water recipe next time I'm on my computer. Its easier to post plus I have to find recipe. May be a few days before I'm back on.
Pain free vibes and pixie dust to all!

I almost bought the flat belly diet book. Are you on the flat bellydiet? Does it work? I already drink a TON of water a day, usually 8-10 glasses day. I am already on my 6th glass and it's only 1:00. I do not go anywhere without my water.

My big thing that I cannot live without is my xlarge coffee a day. Only problem I have two large sugars and cream in that cofee. :eek:

I am on water retention pills. And the amitryptyline makes me sooo thirsty but the water pill makes me pee all day. lol

[brighteyes]

I just found this thread and am so glad I did!!

I have fibromyalgia also. It's been five years now and it took me a long time to accept the reality of it. When I finally did I realized that I could not do some of the things that I have always done, BUT there was still plenty of things that I could still do. I try very hard to just concentrate on that. Like all of you I have been to doctors, specialists, etc. and have tried different things. With me it's worse in the cold and when the weather changes. I get migraines too, although the hormonal ones stopped after I went through menopause. My migraines usually are related to weather and sometimes stress (which my doctor tells me to avoid, HA HA). I am not on any pain killers for the fibro, except exedrin migraine which helps. I also have high blood pressure and am on pills for that. I try to walk and exercise and that helps. I am constantly telling myself to keep putting one foot in front of the other and I have been able to do it, but know that a lot of people aren't as lucky as I am.

I loved reading everyone stories and hope and pray that all of you are well and get better and better every day. It really helps to know that you are not alone. Thanks for this thread. I will use my Disney ending...

Enjoy The Magic!!


Welcome to the boards, we are all learning so much from each other. When no one else can relate to what we are going through, it is helpful to know there are others here to talk to.

It is true that you have to keep walking. My mother suffers from horrible migraines. I used to have hormonal migraines though not as bad. I found once I went on the depo for b.c. that it took my migraines away. Before that for 15 years I LIVED on ADVIL migraine. Now, no more migraines. :banana::banana: I should have went on this years ago.

I think many of us suffer from high blood pressure. Mine has been creeping up for about 4 years now. About the time I started having my first FM symptoms.

The nurse where I used to work said that if you are in pain, it will raise your bp! On the days I am in a lot of pain, my bp skyrockets. I think FM and BP go hand in hand. Losing weight didn't help, quitting smoking didn't help, and they were at a loss as to why it didn't come down.

Wishing everyone a great weekend and pain free days :wizard::wizard::wizard::wizard:

[DisneyMim]

Thank you so much for the warm welcome brighteyes. You know, you got me thinking. My high blood pressure started around the time my fibro started! Yes I had put it together in the past, but after reading your post it makes so much sense now. I also think that taking so much pain stuff hasn't helped either. When I was first diagnosed with firbo I was talking to someone who said it was strange that my firbo started right around the time that my husband was diagnosed with cancer. Coincidence? Maybe, but who knows.

Anyway, I hope everyone has a wonderful Labor Day Week-end. And a pain free week-end. Wishing I was still in WDW. I got back 8/25 and miss it already!!

Enjoy The Magic!!

[brighteyes]

Ohh I am so jealous!! Hope you had a wonderful trip!

Well so many meds to can quicken your pulse. This summer one of my docs who was checking my blood pressure and not happy noticed my pulse has been quite high for some time. So on went all the cardiac tests, etc.

Turns out my heart is healthy, it's just all my meds make the pulse speed up. It's just such a pain - all the meds and all the tests. :sick:

But I am finally decluttering my roon, one paper at a time. :guilty:

[tiggspring]

A beautiful week here in PA! Yeaterday I had my first truly good day in a long time. Did a lot of running around and found a new dinning room table that we have need for several years at 80% off. Cant beat a day when you feel good and save money!:cool1:
Brighteyes yes the flat belly diet did work somewhat for me even when the sleep thing was still going on. I also had minimal success with the fat flush diet. I could lose about 10-20 lbs on these which ment I yo-yo’d. when ever I crashed I gained 20. Dieted lost 20 which is frustarating as you know. That being said , these are the only diets that have helped me lose any weight. That was before I found the melatonin diet LOL!:lmao: Basicly the olther two are low carb, no caffenine, no sugar diets. I seem to be very sensitive to carbs and since this eliminated about 95% breakfast foods I find it hard to stick them. I like the Flat belly diet because it includes what she calls mufa’s which includes things like nuts and chocolate with every meal. If I can eat chocolate it’s a good day.

Here is the recipie for Sassy water :
2 liters of H2O
1 tea fresh grated ginger root
1 medium cucumber peeled and thinly sliced 1 med lemon thinly sliced
12 mint leaves
I tend to put all the ingredients in a gallon of water instead of 2 quarts and let it steep longer. I use mint tea in place of the fresh since it can be hard to find fresh in good condition.

Nice to see you Disneymim:welcome:

I've got a menapuse question for you. I'm perimenapusal and have never had PMS of any kind. In the last year I have noticed that the time of my cycle that many woman complain of PMS my Fibro is flaring more. especially the intestinal issues. DId this happen to you or is this another one of my personal fibro tricks?

[Indiana Rose Lee]

Hi! Do you all mind another newbie? I was diagnosed 20 years ago, and have had my ups and downs! I, too, have migraines, weather, and hormonal primarily. My pain isn't so bad now that I am on both Lyrica and Savella. Still adjusting to the Savella, and having nausea and insomnia off and on. But, in general, my attitude towards life has greatly improved. Over the years I've tried every anti depressant out there, to try to help with sleeping, and mild SAD. This one is changing my life, though.

I haven't read back to see if there is a purpose to Sassy Water, but it sounds really yummy! I have an abundance of mint, too. I need to get it picked and dried this weekend.

Looking forward to getting to know you all, and will go back and finish reading the thread!

[Indiana Rose Lee]

[QUOTE=tiggspring;33182825]Hi everyone. :wave2: I finially made it back. This last week has been one of those weeks that I just couldn't think so waited to post. My name is Bonnie and I have had Fibro for 15 years. My official diagnosis in FMS, CFIDS, Chronic Toxoplasmosis and complicated migraines but I have a lot of bizarre symptoms:confused3 and my disease acts a lot like MS with good and bad days and symptoms taking turns as to which will be worse day to day or month to month.

Hi tigg,

Just a thought because I have a friend with MS. have you had an MRI to rule out MS? My friend tells me often that some of my symptoms mimic hers.

She has also told me to up my vitamin D levels to really high. I can't remember how high but she said her doc does research on MS and other similar diseases and found that high levels of vit D can slow or sometimes halt the progression of autoimmune diseases. I don't think fibro is autoimmune? or is it? I can't remember??

Take care, I hope everyone has a relatively pain free day. :goodvibes

oh my! Do not up your vitamin D too high! I did that once. I started having horrific pain in my legs, and cramps. I eventually found our that vit D decreases the mangnesium level (or makes it hard to absorb) and that not only cause my leg pain, but also death!:scared1:

eta: Hope you don't mind me saying something about this!

[brighteyes]

[QUOTE=brighteyes;33281877]

oh my! Do not up your vitamin D too high! I did that once. I started having horrific pain in my legs, and cramps. I eventually found our that vit D decreases the mangnesium level (or makes it hard to absorb) and that not only cause my leg pain, but also death!:scared1:

eta: Hope you don't mind me saying something about this!

Not at all! I take calcium with magnesium with vit d3 and take an extra unit of vit d3. The pharmacist said we only need about 1200 units of vit d3 a day.

But that seems to conflict with your comment about vit d3 and magnesium. I wonder why then, the two are combined in one vitamin. :confused3

I have not read the research on the vit d3 reversing autoimmune disorders but the pharmacist did say something about it.

I would not recommend anyone just take something based on my comment, I always check with my dr or pharmacists before taking any vitamins.

Hope everyone has a good weekend. :goodvibes:goodvibes:goodvibes

[Indiana Rose Lee]

Actually it makes sense. Your cal/mag keeps you from having the problems I had! I'm glad. I was so miserable and for awhile we had no clue what was causing it.

[DisneyMim]

tiggspring, I first started having fibro problems right around the time I started menopause. I didn't have too much premenopause stuff. I have had migraines since my pregnancy with my son (and I tell him he is still giving me headaches, he just turned 21!!). Every month for years I had really really bad migraines that sometimes lasted for 6 days. It was horrible. Meds helped at times, but not always. Anyway, when I hit around 51 (I am 56 now) I started having menopause symptoms that lasted about a year. Then it just stopped. At the exact same time my fibro started. My migraines changed at that time too. I don't get any from hormonal stuff, but when the weather changes or I am stressed or tired or the migraine villian just decides I'm getting one they happen. Sorry for going on and on, but I'm trying to see if any of this will help you. I can see that maybe your fibro pain would get worse monthly, just like a hormonal migraine. Problem is fibro is such a wierd thing. It can come on for various reasons, getting worse at different times of the month, year, etc. I live in NE and the cold really bothers me, for example. What I do think and again it is from my own personal experience, is that once you go through menopause a lot of women stop having hormonal migraines. Maybe everything is all tied in together.

Just a real quick thing on vitamin D. All I know is that when I am out in the sun I feel better. The last time I went to the doctor he tested me for vitamin D and said I was fine. I also have heard that too much is not good for you, but you need some.

Hope at least some of this helps. Hope everyone is having a good week-end and you are all pain free!!

[brighteyes]

Just a real quick thing on vitamin D. All I know is that when I am out in the sun I feel better. The last time I went to the doctor he tested me for vitamin D and said I was fine. I also have heard that too much is not good for you, but you need some.

Hope at least some of this helps. Hope everyone is having a good week-end and you are all pain free!!


See, that is precisely why I think I should live at DisneyWorld. :dance3::dance3: I still had a bit of a crash there due to my calf muscles but I was still at Disney. The cold bothers me A LOT, I hate it, hate it. I crash bad in the winter.

:goodvibes:goodvibes:goodvibes:goodvibes:goodvibes

[RNMOM]

Hi all! :goodvibes I have actually been feeling better the past couple days.

I just wanted to jump in here and comment about the vitamin D comments.

Vitamins A,D,E and K are all fat soluable vitamins. They're slower to be eliminated by the body and can get you in trouble much faster than the other vitamins which are water soluable and can be excreted in the urine much more quickly. This is all assuming your kidneys function normally. I just want to comment that any vitamin or mineral taken in excess can actually be very harmful and even deadly so please just speak with your MD before you begin taking anything more than a basic multi-vitamin suppliment.

I used to be very good about taking my vitamins but am lax these days. I don't have any good reason but I take so much other medicine as it is but I just popped my multivitamin as I type this.

[cosine4]

Hello all,
I am new to this thread but not new to the Dis. I have recently been diagnosed with fibromyalgia, but have been dealing with the symptoms for years. The past couple of years I have gotten significantly worse. I used to live for playing ice hockey, roller coasters lots of out door activities but just got to the point where I couldn't do it anymore. I suspected that I had it based on conversations with my mom who also has it and having similar problems.

I just started taking Savella but have not gotten up to the full dose yet. It isn't covered at all by my insurance (because they obviously know more than my doctor does). Has anyone had any success with this medicine? What about other non-fibro meds other than pain killers (which is the only thing that currently gets me through the week).

Right now my relief comes from massages, stretching and ice/heat.

[Indiana Rose Lee]

Hello all,
I am new to this thread but not new to the Dis. I have recently been diagnosed with fibromyalgia, but have been dealing with the symptoms for years. The past couple of years I have gotten significantly worse. I used to live for playing ice hockey, roller coasters lots of out door activities but just got to the point where I couldn't do it anymore. I suspected that I had it based on conversations with my mom who also has it and having similar problems.

I just started taking Savella but have not gotten up to the full dose yet. It isn't covered at all by my insurance (because they obviously know more than my doctor does). Has anyone had any success with this medicine? What about other non-fibro meds other than pain killers (which is the only thing that currently gets me through the week).

Right now my relief comes from massages, stretching and ice/heat.


I would cry if I had to go off Savella. It has made my life so much better. The pain is better, and my outlook has improved tenfold. I went from an achy half empty kind of gal to a zipadeedoodah half full kind of gal. I haven't given up Lyrica, but the combo is allowing me to do so much more than I've done in years. That said, about once a week still (7 weeks into it) I still have some wicked nausea. It is still worth it, though, imo.

Try contacting the makers to see if you can get it discounted or free. Most companies have some such program.

I hope you find relief and a discount!

[brighteyes]

Hello all,
I am new to this thread but not new to the Dis. I have recently been diagnosed with fibromyalgia, but have been dealing with the symptoms for years. The past couple of years I have gotten significantly worse. I used to live for playing ice hockey, roller coasters lots of out door activities but just got to the point where I couldn't do it anymore. I suspected that I had it based on conversations with my mom who also has it and having similar problems.

I just started taking Savella but have not gotten up to the full dose yet. It isn't covered at all by my insurance (because they obviously know more than my doctor does). Has anyone had any success with this medicine? What about other non-fibro meds other than pain killers (which is the only thing that currently gets me through the week).

Right now my relief comes from massages, stretching and ice/heat.

Hi, and welcome. This thread has been active lately. Regarding non-fibro meds, I take amitriptilyne (sp?). (I also take Lyrica). I thought this summer it wasn't working as well as it used to, and was told it was responsible for weight gain, so I decided to go off of it. Never again, I was in so much pain, much more than I ever was before I even went on it. So I guess it was working. :)

Ami is actually an anti-depressant in larger doses. But in smaller doses is used for the pain of fibro and helps with sleep. I currently take 30 mgs nightly. Hope that helps.

[toocherie]

I would cry if I had to go off Savella.

Hi ladies--sorry I haven't been around much lately, but have been engaged elsewhere.

I am going to have to check into Savella--haven't heard of it before.

And Indiana Rose Lee--welcome!

[Indiana Rose Lee]

Hi ladies--sorry I haven't been around much lately, but have been engaged elsewhere.

I am going to have to check into Savella--haven't heard of it before.

And Indiana Rose Lee--welcome!

Thank you for the welcome! I'm excited to find this thread and group!

Savella is new, but when I saw my doc yesterday for a med follow up he said that the reviews that he has had for it are similar to mine. It is an antidepressant that affects the norepinephrine levels rather than seratonin levels. That said, insomnia can be an issue. I've dealt with it just a bit more than usual.

[LauraAnn630]

This is crazy. I went to the Cleveland Clinic. My doctor there said he is not prescribing Lyrica because all of his patients on it gained weight and said it wasnt helping them. He never mentioned Savella.

I was really really hoping a Cleveland Clinic doctor would help me! I went in and told the doctor how terrible I felt and it was so bad at times it was effecting the quality of my life.

I was diagnosed with fibro years ago and not one single doctor has done anything to help me. They tell me to take long hot baths.

I have been lucky over the summer but winter is approching and Im worried the fibro and sarcoidosis will stop me dead in my tracks again.

[Indiana Rose Lee]

I was diagnosed at the Cleveland Clinic also. They tried me on the first antidepressant to sleep that didn't work.

I did gaind weight on Lyrica. When I take it I want to snack more than real life. I just keep my snacking options limited to avoid weight gain, now. Plus, the Savella has helped that. A mild nausea keeps me from eating.

eta: I sound like I'm advertising the stuff. Not. I am usually antimed and think the pharmaceutical companies are evil.

[cosine4]

Hi, and welcome. This thread has been active lately. Regarding non-fibro meds, I take amitriptilyne (sp?). (I also take Lyrica). I thought this summer it wasn't working as well as it used to, and was told it was responsible for weight gain, so I decided to go off of it. Never again, I was in so much pain, much more than I ever was before I even went on it. So I guess it was working. :)

Ami is actually an anti-depressant in larger doses. But in smaller doses is used for the pain of fibro and helps with sleep. I currently take 30 mgs nightly. Hope that helps.

I tried amitriptilyne as well as nortriptilyne (not sure if they work similar or just sound similar :) ) and both made me so tired that I couldn't function and didn't help with pain noticeably.

I saw the weight gain info on Lyrica and am cautious about trying it because I am down 70 lbs from a couple years ago and still have to work hard to keep it off.

[tiggspring]

Its so great to see so many new posters!:welcome: I've been off the boards for a few days because I was feeling good and wanted to take advantage of it and keep off the computer and be out and about. This week my kids started all their after school activities and now as my grandma used to say I'm POOPED!

On the medical end I finally got a blood test that was ordered by the Endocrinologist in March. It required I be at my lab two mornings in a at 8 am exactly row and the closest lab my insurance will cover is at the edge of my "driving zone" and DH couldn't get two am off in a row. So on the back burner it went. Anyway, it was a cortisol test where on the 1st am I got baseline and second day you take a cortal steroid and compare your reaction to the baseline. The day after the 2nd test I gained 4 lbs and my face swelled up. Couldn't figure out why then got a little excited when I realized I had taken the meds 36 hr before. I was hoping it was confirmation of Cushing disease. Which is not a great thing to have but at least there are vwery effective treatments (brain surgery:scared1:) and there is no doubt you are really "sick". Well the labs came back normal. Tell me how I can have a reaction to the drug and labs still come back normal:confused3?

Well glad to see you all here. Its great all the support and tidbits of information you can get this way.
Sending pain free vibes :goodvibesand pixie dust your waypixiedust:

[brighteyes]

I saw the weight gain info on Lyrica and am cautious about trying it because I am down 70 lbs from a couple years ago and still have to work hard to keep it off.


After my nightmare going of ami. I do not want to try going off the Lyrica. I did notice when I was off the ami, that I was still exhausted, not quite as much as usual, but not enough to make me go through the pain of being off it.

[tiggspring]

Oh I meant to thank Dismim for the info on the migraines. I had my first migraine the day after my work injury and it progressed into fibro over 2 years. I know my usual triggers are fatigue and loud noises so the perimenopausal stuff is new. The last year or so. Maybe menopause will help but if my mother is any indication I'll have to wait another 10 years.

Indiana rose thanks for the vitamin D warning I take magnesium for leg pain and do have a lot of leg pain at night so I'll take it easy on that one!

It sure is a small world. I noticed several of you mentioned Cleveland clinic. My husband is going to Case Western Reserve right down the road. I think I also saw somone mention New England. I was born in rhode island and DH in Mass. Only moved down here so we could afford to raise a family on one main income. Dont miss the cost of living, traffic or the awful barametric changes:scared1:. I do miss good sea food, current top 40 music and the ocean.:upsidedow

sending painfree:goodvibes vibes and pixie dustpixiedust:

[tiggspring]

A little vent here. Dad comming to visit. So last few days I have been preparing and He put a little pressure on me to do more than I should. Now he is about to arrive and I can feel a major crash comming on! Wish he had just left things alone and let me enjoy the two days a year we get to see him!!! Ahhh! Well, Wish me luck! Hope eveyone has a productive weekend.

[DisneyMim]

tiggspring, good luck with your Dad. I have been helping my Mom a lot lately and I understand how it can add to your stress level! You are very welcome about the migraine info. Our weather has turned cold in Ma the past couple of days and I have had a migraine on and off, so I feel your pain.

I wish everyone a wonderful week-end and hope you are all pain-free.

[brighteyes]

I am wishing you pixie dust that you do not have a major crash. I know how it is when you overdo it. I hope you do get to enjoy your Dad's visit.

Wishing YOU a painfree and feel good weekend. :wizard::wizard::wizard::wizard:

[brighteyes]

I took the plunge,I bought an elliptical! It will be here on Saturday. It was a lot of money that I cannot really afford right now but I have an urge to be on an elliptical. I have an urge to go for walks too, but am scared of the pain.

So I have to use it once I get it!! I am sure it will only be a few minutes at a time but I am hoping it will help with my muscle pain.

Hope everyone is well.

[Indiana Rose Lee]

Good for you! My dad heard the guy who originally came up with all of the info on cardiovascular exercise, and his belief was that one should start with just a couple of minutes. do that for a few days, then add a minute. And so on. It has worked with me. It was so hard not to overdo, and keep it short when I 'knew" that I could do more. It has helped me a lot.

[ireland_nicole]

Brighteyes: Congrats!!!

Tiggsprig (sp?): sending pixie dust and prayers that you'll feel well for your dad's visit.

[MTNest]

Dear Tiggspring, I am sending you good wishes and an extra helping of strength. I wish I could give you sage advice, but I, personally, could never say no to my wonderful, sweet mother - which is maybe a piece of the puzzle of what gave me fibro. in the first place. The good news is, though, I have no regrets, as she has now passed. As I say, "the good news is we were close....the bad news is - we were close". I guess you could do what I do now with my family - when I'm done, I tell them I'm done. They know there's no negotiating with that. Good luck!

[tiggspring]

I want to thank everyone for the good wishes. We had a nice visit. No pressure:). I do feel like I've been hit by a bus but that will pass in a few days. Its funny how bringing in a person who is not with me everyday can really through my pace off even when they dont mean to. Plus I really want to ejoy myself so I over do.

On the med side my endocrinologist said my labs where fine but my GP just called and said my vitamin D was very low normal just a point or two within range so he wants me to take suppliments ASAP. So much for seeing a specialist. she should have caught that with my condition.

Congrats on the purchace Brite eyes:thumbsup2

Sending pain free vibes and Pixie dust to all!pixiedust:

[brighteyes]

well tiggspring, I feel your pain. Now I have really overdone it and am having great difficulty walking. :sick: I had a very busy weekend, spring cleaning. I know it is delayed but I have not been feeling for awhile.

Saturday, I was moving bedroom furniture to accomodate my new elliptical Bringing that up piece by piece was no picknik. Then today moving everything around my basement so that my lil sis can take my old couches to college.

Now I can barely walk. I just had a shower for an hour, but am going to bed. Hopefully I feel better tomorrow. Well it had to be done, have had too much junk in my house for too long. That is the bright side.

Hope you alll had a good weekend. The elliptical is not together yet, maybe next weekend.

Have a good week.

Stephanie

[tiggspring]

Hey Stephanie good to here from you. I was about to do a roll call since hadn't seen a post from anyone all week. Hope all's well with everyone else on the Fibro board!

Sorry you are having a rough weekend brighteyes:(.I know it feels good to get things done but payback ...well you know how that goes.I'm still feeling a little water logged myself but bouncing back like all Tiggers do :tigger: whoohoo!

I will admit I'm looking at the next few months with a bit of dread. Fall is my favorite time of year. Love the weather and the colors but it means commitments and lots of them. I have two kids born in October one week apart and I learned to decorate cakes before my oldest's first birthday so that means planning two cakes and birthdays. Don't get me wrong I love doing the cakes. It is my true gift to them. Things may come and go but they will always remember these cakes even if they take 3 hours or so to make and are eaten in about 10 minutes! We are lucky that all the family is up north so the birthdays are just us but I still want them to have a great time. Then of course thanksgiving, Christmas and all the pageants, scouts and athletic stuff and my oldest was born two weeks after Christmas so it seems like there is not a quiet week for four months. At least this year I can nap everyday without worrying weather I can get a little rug rat to sleep too!

Sending pain free vibes:goodvibes and Pixie dust to allpixiedust:!

Bonnie

[brighteyes]

Wow tiggspring, that is A LOT going on. Birthdays are wonderful, but the planning everything can be very exhausting. You must post pics of your cakes!! I don't bake!! And yes, nap every day -- take advantage of it!!!! I did all summer and it was wonderful. :)

I know I will be very busy for the next four months as well. I am told we have a crazy semester at school. We do have a lot going on. I am not even organized at this point. I know the due dates for a lot of my stuff, but some of it, I am not understanding the assignments yet! :confused: I have not opened a book yet!! :scared1:

I am just so tired since going back to school -- and last week I was out every night afterschool till at least 8:30 at night!! Misc. appointments and errands. So time to buckle down now. I don't think I will be going to my volunteer placement tomorrow. I am awake again cause of the pain. Can't sleep. I wish there was a full body heating pad --- I don't mean like an electric blanket either. Like a huge heating pad that fits on your bed. that would ease my pain right now. LOL Ok off to bed again. Night all....

Pain free to all of you!!!

[Indiana Rose Lee]

Can you imagine pain free? The thought boggles my mind, sometimes.

How is the elliptiptical going? After all of that moving, have you been able to try it?

We are refinancing, and have been doing all of the stuff that should have been done. I swear this weekend I would bend over and then spend 5 minutes trying to figure out how to stand back up!

[brighteyes]

Can you imagine pain free? The thought boggles my mind, sometimes.

At this point, I cannot really imagine pain free. :sad2:


How is the elliptiptical going? After all of that moving, have you been able to try it?

After everything I did, all that was accomplished was getting all the pieces upstairs. I had a friend help me pick up the box. There was one very heavy piece and my DS helped me carry it up. It was very very heavy. I think this is what contributed to my pain as well. So it is not together yet. :rolleyes1 hopefully in the next few days. But first I have a paper to write once I get better.

We are refinancing, and have been doing all of the stuff that should have been done. I swear this weekend I would bend over and then spend 5 minutes trying to figure out how to stand back up!

I know exactly how that feels. I can barely wallk around my house. Let alone up/down the stairs to use the washroom. I think I am staying in bed with the heating pad.

[cosine4]

I just started Cymbalta, I am still on the 1st step (30 mg). Could be a huge coincidence but so far it has been working pretty good!:thumbsup2

[TinkerBean]

I just started Cymbalta, I am still on the 1st step (30 mg). Could be a huge coincidence but so far it has been working pretty good!:thumbsup2

I'm also on cymbalta (I'm up to 120mg) and I really found that it has helped with daily living...

Guess I should introduce myself.

I am a 43 year old stay at home mom to 2 kids. I was diagnosed with fibro 3 years ago after I suffered a particularly bad flare. I have been struggling with it ever since. My mom was a long time sufferer and I eventually lost her to suicide 6 years ago. It's hard knowing that I have the disease that so plagued my mom.

I had tarsal tunnel surgery 2 1/2 weeks ago (think carpal tunnel - but in the ankle) and today is the first day that I am up, dressed and made up. My poor husband has had to do *everything* and I mean everything for me. Even having to come home just to meet ds12 to get him off the bus.

I think it takes me much longer to recover (this was general anestetic) from even simple proceedures. I am not used to being this tired, the fatigue is overwhelming. I used to be *very* active and was a go, go, go type of person. You know, "Hey - I think I'll re-landscape the whole back yard" in a day kind of person. Now I can't even get dinner on the table for my family.

I have gained about 80 pounds since my dx and am *very* frustrated with my weight loss efforts.

I am happy to have found this thread and have been lurking for some time. It's nice to have a place to post where everyone understands what you are going through.

On a more positive note I am trying to be kinder to myself and celebrating the small accomplishments. I try to do things in small chunks of time and have enlisted the help of my children, ds vacumns for me and dd9 will dust and help me tidy the house and bring stuff up and down the stairs for me (we have a 3 story house which can be challenging on some days) and dh is a sweetheart and has really stepped up to the plate these last few years. I don't know what I would be without him.:love:

Sending everyone positive energy:goodvibes

Rhonda

[tiggspring]

Hey Brighteyes how you doing today?:flower3: Since you love your heating pad like I do did you know that Walmart sells an extra long one that is almost the size of a body pillow. I got mine last year and I use every inch!

Cosine4 Glad to hear you have something that is working for you. That must be very encouraging!:thumbsup2

Indiana Rose lee
I absolutely HATE all that financial stuff and the stress it causes. Don't envy you in that process. Hope all goes as you plan! I cant imagine a day without pain either. But I do fondly remember what it was like after I was headache free for the first time in 2 years. I danced around my living room and felt like I was flying. I think it would be like that for a day or two! At least my headaches now may last several days but not several years!!! That was really awful:scared1:

Welcome Tinkerbean!!!!:welcome:

Looks like you and I are in the same place in our live re age/kids/dh and fibro. Your kids are just a little older than mine. I'm so sorry to hear about your Mom. That must have been so hard for you.

Sending pain free vibes :goodvibes and pixie dust to all pixiedust:

[tiggspring]

Hey ireland nicole just noticed your DS and DD are close in age to mine too. How long have we both been posting on this thread an I just noticed that?..Real case of DUHHHH!:laughing:

[tiggspring]

Warning this is a little long even for me.:lmao:

Since we have all been dealing with flares for one reason or another I was wondering what tricks everyone has come up to make life easier. He is a list of some of the things I do:

I have a pair of "grippers" on every floor of my house so I can pick up and reach things without killing myself.

DH bought me a hot wax treatment set up so I can warm up my hands and feet

I used to do 30 day gourmet freezer meals with a friend. Every month we would switch off cooking multiple chicken or beef meal then freeze them . once we swapped we would have 16 to 20 meals put up in our freezers for days when we couldn't cook. I buy 20 lbs of chicken or beef on BOGO and save a ton on groceries too. I was able to do this alone last Sept and didn't worry about cooking till DEC. I find this very hard to do alone though.

Did you know that you can cook a whole frozen chicken and it comes out perfect? :banana:I had to do this with a turkey one thanksgiving one year when the turkey didn't unthaw and found out from butter ball you can cook it frozen. this is great when I cant cook but have plenty of time at home to cook the chicken. I always use a meat thermometer when I do this.

I bet most of you use crock pots

This past spring we bought my brain..oh I mean phone. DH and I both have blackberries and have the calendar set up so he can send me his appointments and I can do the same. each appointment has an alarm so I don"t forget....sometime still do LOL Also this year I use the kitchen timer and phone alarm clock to remember to get the Kids etc. I get a little lost with time and If something distracts me well I might not meet the bus which for the next five years I have to meet at 6:45am, 8:30am 3pm and 4:15pm. Our bus stop in 1 1/2 miles away and it all wooded and we have a bear! The bus co. thinks my kids should walk even in the winter. I think they are NUTS!!! DH does first trip most days thank God!!:worship:

I have a basket that fits on my stairs that I'm supposed to use to bring things up and down. Thing is I always overfill it then leave it there..

I found these great socks at JC Penney that have arch support built in which feel really good on my feet. they were in the men's dept. When my feet really hurt those crazy colored, shaggy type socks that are in the Jr section are warm and really lite.

Just started puting my vitamins in little bags. sort them out in muffin tins and then use the tin liner to just slide the pills in the bags. I tried to use those pill containers but many of the pills would absorb humidity. I never can consitanty do these pills week to week. heres hoping this helps us stay on track with suppliments! Why didnt I think of that before?

I have 3 slaves...ah Kids DD fold laundry, DS puts away dishes and DD picks up shoes and things on the floor since she is still short!! Did I really admit to this? :rotfl::rotfl::rotfl:

I used to have a Nanny when I could afford it. She would watch the kids and do dishes, fold laundry:laundy: and anything else she could fit in while I slept upstairs. She is a good family friend now. We have tried several times in the last year or so to replace her but nobody wants to work. My DD 10 does a better job with the laundry and DS does better job putting away dishes. I don't expect perfection just adequate.

Any other ideas everyone:idea:?

Sending pain free vibes:goodvibes and pixie dust to all pixiedust:

[brighteyes]

Hey Brighteyes how you doing today?:flower3: Since you love your heating pad like I do did you know that Walmart sells an extra long one that is almost the size of a body pillow. I got mine last year and I use every inch!

Cosine4 Glad to hear you have something that is working for you. That must be very encouraging!:thumbsup2

Indiana Rose lee
I absolutely HATE all that financial stuff and the stress it causes. Don't envy you in that process. Hope all goes as you plan! I cant imagine a day without pain either. But I do fondly remember what it was like after I was headache free for the first time in 2 years. I danced around my living room and felt like I was flying. I think it would be like that for a day or two! At least my headaches now may last several days but not several years!!! That was really awful:scared1:

Welcome Tinkerbean!!!!:welcome:

Looks like you and I are in the same place in our live re age/kids/dh and fibro. Your kids are just a little older than mine. I'm so sorry to hear about your Mom. That must have been so hard for you.

Sending pain free vibes :goodvibes and pixie dust to all pixiedust:

OMG!!! Really????!!!!!!!!!!!!!!!:dance3::dance3::banana:: banana::banana: Before I get too happy I should check my Walmart. I am in Canada! We might not have it here. I will check right after school tomorrow. I was just telling my friend that they need to invent a body sized electric heating pad!!

I am feeling better now, can move and walk without it being excruciating. I missed two days of my school placement. I knew I would probably be sorting and folding big bins of donated clothing so I knew there was no way I could handle that.

Welcome everyone!!! :cheer2:

Now I have to work on a paper I have due in two days.

Night all. Have the best day you can!!!

[tiggspring]

Bright eyes your responce to the heating pad made me
:lmao::rotfl2::rotfl::rotfl::rotfl2::lmao:

Just did a quick check for you online. If you go to walmart site or amazon you can buy them for $19- $25 us dollars which should be a discount to you with our economy! They are called King size and are about 24 inches long. I typed in extra large and found them. ENJOY!!!!:cool1:

[tiggspring]

Be carful just noticed some are only 18 inches long not 24.Some smaller ones have massage.MMMMMM

[brighteyes]

Be carful just noticed some are only 18 inches long not 24.Some smaller ones have massage.MMMMMM


Awwww...darnit!!!!!!!!! After thinking about it all day at school, and running my errands after school and rushing to get home to re-start my paper for the third time so I can finish it tonight I TOTALLY FORGOT! :guilty:

Well maybe if I have a good portion of it done early enough I will sneak out. I am pretty tired though, so first I will need a nap. My eyes are shutting as I type!!

I also wanted to see if they have any good food scales there, otherwise I may just order them both of amazon. Would I have to pay duty on that,and would it be a lot??

I am trying to decide between the Biggest Loser scale or a WeightWatchers scale. HA can you tell I am on a health kick?

Just pray for me please that this lasts until at least I get my elliptical put together. :worship:

Have a good day all. :banana::wizard:

[TLSnell1981]

Popped in to moan and groan. It's rained and rained and rained and I HURT. I've been so lucky the past five months and now UGH! I've had two social events in the last five days( and did I mention nonstop rain?) I've overdone it and I'm exhausted. It stinks.

[brighteyes]

Popped in to moan and groan. It's rained and rained and rained and I HURT. I've been so lucky the past five months and now UGH! I've had two social events in the last five days( and did I mention nonstop rain?) I've overdone it and I'm exhausted. It stinks.

I really hope you feel better. I know how it sucks. I just came out of a three day painful flare. Rest up if you can, and know that we are all sending pixie dust. (or LOTS of meds, if that doesn't work)
Rain does seem to have an effect on me too, does it for anyone else??

Take care, and get better sooon. :wizard::hug:

[tiggspring]

TLSnell1981

I dont know where you live but I'm with you. Had a good day until about 3pm it went from about 60% humidity to 97 right now!!!:scared1: add to it that my super smart son came home with a 57 and my little one some point over the week emptied her ballet bag so we coulnd find her shoes until her class was over and this eve just....:headache: I'd do anything to get out of my skin if you know what I mean. ...Well feel a little better getting it out.

Hang in there TLSnell1981

Sending pain free vibes:goodvibes and pixie dust to all!pixiedust:

[brighteyes]

WOOOO HOOOOO!!!!!!!!!!!!:dance3::dance3::banana::banana: :rotfl2::rotfl2::cool1::yay:

Ok so I may be a LITTLE bit overexcited, I just completed my first paper of the year. It was an easy one, but I did start it over three times. But I only checked it three times. I have a little OCD when it comes to papers. I procrastinate, (which I did this time too. :rolleyes1) but I only checked it three times and I am leaving it. That is a record for me. HA HA

I hope I get a good mark. It is a little longer - but oh well. This is big for me - usually I leave it so last minute I am really up all night, or am checking it for hours and hours. This time I am not, in an effort not be OCD about my marks. So pray it works out for me. popcorn::popcorn::

Have the best day you can. :wizard:

[Indiana Rose Lee]

Yeah on the first paper! What are you studying?

[brighteyes]

I am taking Social Services. It's a two year program, so I am in my last year. But I did an extra year before that to increase my chances of being accepted into the program.

It is not hard, cause I love the material, but it is A LOT of work. But I don't want to be a counsellor or therapist, or social worker but want to work in the school system.

I was always wanting to be working with children in some aspect. Last year I had the chance to work in a classroom with kids who had mostly behavioural issues. They were pretty high functioning kids.

I was scared away from it a few years ago because a lady who is an Educational Assistant told me she spends most of her days holding down children who are having behavioural issues. She works with a lot of children who are autistic. Then someone else told me that is not what should be happening, and that she must not be doing a good job with her kids. So that scared me off working with autistic children. I did not want to be judgmental I just didn't know anything about it.

I have since met a few children with autism and they are just kids, nothing to be scared of. I just want to learn more about it, because I know that every child on the spectrum is different.

Sorry to go on so long, I just am so excited to be done school and hopefully get a job!!! I could also work as a child/youth worker in a school. :banana:

[TLSnell1981]

I really hope you feel better. I know how it sucks. I just came out of a three day painful flare. Rest up if you can, and know that we are all sending pixie dust. (or LOTS of meds, if that doesn't work)
Rain does seem to have an effect on me too, does it for anyone else??

Take care, and get better sooon. :wizard::hug:

TLSnell1981



Hang in there TLSnell1981

Sending pain free vibes:goodvibes and pixie dust to all!pixiedust:

Thanks ya'll. It's always good to have folks who understand.... It's nice to have a support system.

Best wishes to everyone!:goodvibes:goodvibes

[brighteyes]

Tsnell,

are you feeling any better today?? have you tried using a heating pad?? I just went and bought an xlarge on thanx to the advice of tiggspring. what do you do when you get a bad flare to help you through the pain. Not that anything can really ease it until it lessens on it's own.

anyway, I hope you are feeling better soon. you will find me on these boards more as I procrastinate with homework. :rolleyes1

[TLSnell1981]

Do I have a heating pad? I have 'em in every size, shape and color!:lmao: I normally have massages regularly, but I haven't had the time. DD hasn't been able to drive, so.... I'm going for a B12 tomorrow....they usually help some.

[EDuke98080]

Hi All! Great thread. I have had fibro for years and recently found that eliminating gluten from my diet has led to an amazing imporvement in my pain level. (Also completly eliminated the stomach aches I have had for 30+ years) One of the things I have found is that people with Celiac disease have a high rate of fibro and that improves when gluten is eliminated. worth looking into if anyone also has any gastrointestinal symptoms too.

Does anyone have any suggestions for help settling down at night to get to sleep at a decent hour?

Thanks! Erika

[TLSnell1981]

Hi All! Great thread. I have had fibro for years and recently found that eliminating gluten from my diet has led to an amazing imporvement in my pain level. (Also completly eliminated the stomach aches I have had for 30+ years) One of the things I have found is that people with Celiac disease have a high rate of fibro

Thanks! Erika

Hmmm....it's funny, in an odd way. I've noticed how much my diet can affect my fibro and Celiacs seem to keep coming up in conversations. Maybe, somebody's trying to tell me something? I guess, it couldn't hurt checking into it.

[brighteyes]

Hi

Does anyone have any suggestions for help settling down at night to get to sleep at a decent hour?

Thanks! Erika

About 30 - 40 mg of amitryptyline a few hours before bed. :cool1: Before I started taking that I would only sleep for an hour at a time. Very frustrating.

But I still don't get to sleep at a decent hour, but once I do I am out like a light.

Sorry I couldn't be of more help.

[toocherie]

I wish I knew of a way to sleep better--if you find one let me know~

LOL!

[EDuke98080]

It is very comforting to know there are others out there like me although I don't wish this one anyone. Sometimes the pains make me so frustrated wondering if there is something else wrong? Get really tired of trying to do something like yard work or a longer walk and then to suffer for weeks after makes me feel useless. I just hate it! Ok vent over - thanks for listening :goodvibes It is better than it has been since they found the Celiac and the gluten is eliminated so I am lucky for that! Does anyone else own stock in Icey Hot? I never leave home without a stick of it (in a baggie as it will melt in the car). DH says I smell like a walking Icey Hot Stick EW! Als o the not sleeping thing works well for EMH at the Parks when they start at midnight LOL.

[tiggspring]

Welcome newbies! Can't make it fancy tonight since I'm posting from my phone and can't get smilies to work this way.:-(

Erika
Melatonin helps me and I lose weight! The downside is if I take it for more than a few days my leg pain is awful.Maybe becuase I sleep so soundly I don't move. I haven't taken it since May because if I take things too long they stop working. Planning to start it again soon so I can lose the weight I've gained since we returned from WDW.I crashed when we got home and gained my usual 15-20lbs!

Brighteyes glad you found the extra lg pads up there in Canada! I was wondering do you get messages etc covered in Canada? I would love to try accupunture,massage and pressure point therapy but can't afford it and last time I checked it wasn't covered by insurance.

Pain free vibes and pixie dust to all!

[ireland_nicole]

Hey ireland nicole just noticed your DS and DD are close in age to mine too. How long have we both been posting on this thread an I just noticed that?..Real case of DUHHHH!:laughing:
ummm, that's ok, I hadn't noticed yours either, I'm in too much of a fog by the time I mosey on over here LOL.

I am taking Social Services. It's a two year program, so I am in my last year. But I did an extra year before that to increase my chances of being accepted into the program.

It is not hard, cause I love the material, but it is A LOT of work. But I don't want to be a counsellor or therapist, or social worker but want to work in the school system.

I was always wanting to be working with children in some aspect. Last year I had the chance to work in a classroom with kids who had mostly behavioural issues. They were pretty high functioning kids.

I was scared away from it a few years ago because a lady who is an Educational Assistant told me she spends most of her days holding down children who are having behavioural issues. She works with a lot of children who are autistic. Then someone else told me that is not what should be happening, and that she must not be doing a good job with her kids. So that scared me off working with autistic children. I did not want to be judgmental I just didn't know anything about it.

I have since met a few children with autism and they are just kids, nothing to be scared of. I just want to learn more about it, because I know that every child on the spectrum is different.

Sorry to go on so long, I just am so excited to be done school and hopefully get a job!!! I could also work as a child/youth worker in a school. :banana:
Just wanted to say, as the mom of two kiddos with special needs, one w/ ASD, I'm glad you took the time to learn more and I appreciate your positive attitude, and also I wanted to reiterate that you're absolutely right. If you've met one kid with autism, you've met one kid with autism. There are so many differences, so many variables, there's no specific course or prognosis; each kiddo really is unique, and one intervention, etc. will definitely not fit all. The great thing is that you also have the opportunity to learn so much, to be challenged to think creatively, and to connect with some really cool kids.


On a side note, after a reasonably pain reduced summer (very hot and dry; just the way I like it) we are in a sudden very sodden cold snap. If I can somehow figure out how to drag my butt up the stairs (why, oh why was I seduced by the coolness of our house= next time I really am only looking at one stories) I'm envisioning getting up close and personal with my heating pad... well, at least we know what we'll all be doing tonight LOL.

[Indiana Rose Lee]

I worked with kids for a long time, and esp. like the SBD group! Working with kids is beyond rewarding.

I take melatonin, but have never lost an ounce.

[tiggspring]

Indiana rose lee,
So sorry melitonin didnt help you. I'm hoping that last spring wasn't a fluke. I let you know when I go back on it and we'll see if it works this time.:upsidedow

Bright eyes glad thigns are so exciting DH and I just loved our days working at the Childrens Psych hospital. :cool1: I got to work with every age and problem imaginable. Some days were really heart breaking. But I LOVED EVERY MINUTE OF IT!!! If I hadnt gotten hurt I never would have left. Your absolutely right Indiana RL every child is different no matter what there diagnosis. It is sometimes hard for professioals to remember that!!!

[Tinker'n'Fun]

:hippie:

[TLSnell1981]

Can I join your group??

Diane.

:hug: You came to the right place. It's nice to have folks that understand what you're going through.

[toocherie]

Can I join your group??

Diane.

Hi Diane and welcome! I haven't been around as much as I should be because I've been going to Disneyland too much--two weekends in a row (a friend was visiting from Texas--we stayed at the GCH!), she stayed at my house during the week, and then after she left on last Monday (the 21st) I went to the grand opening of the new Villas at Grand Californian on Wed. the 23rd (which was beautiful--so excited--we stayed in a studio). I came home with a cold and ear infection and backache from the beds! LOL

So I am just now returning to the "land of the living"--other than the back issues haven't been having too much trouble lately but we are supposed to have drizzle and rain by Monday so time will tell.

Hope everyone's having a great week!

Cheryl

[tiggspring]

Now class:teacher: lets all say the word of the week "TIRED"!:lmao:

Between Girl Scout Weekend and everthing else I'm tired, tired, tired! Did make it to my first Girl scout sleepover in three years! Found out two days before either I drove or I couldn't go there was't enough room. After a full day in bed and an evening working it out so that I would have an adult in my van I drove and got to go. Other moms car only held 5 and she smoked..which would have killed me. She rode in my car (no smoking) and agreed to drive home if I couldnt make it..problem solved. Miss the days when I would have just drove wtih abandon!

Toocheri, what a great reason to be off the boards!:) I have never been to California or Disneyland hope to get there some day.

Tinker'n'Fun :welcome: Sorry you are having such a hard time. I put a stop to all the medical intervetions after two years. They never helped and always seemed to cause complications. I cant imagine having fibro , the spine stuff and lung complications. My MIL had COPD so I know how hard those lung things are to manage. You are one tough cookie! I have found that everyone here has a good idea of where you are comming from and the things that we dont understand we are willing to listen and learn! We're all pulling for you!:grouphug:

Have you ever tried Garlic suppliments for the stomach problems? I had severe acid reflux when I first got sick. They had me on 3x the recommended dose of Zantac with no luck. I heard about garlic and figured ..at least it can hurt me. After about 6 months my reflux was gone. Never had it again. That's when I went more suppliments less meds. Just a thought.

Well my son's 8th birthday is this W/E and I have a 3d Star Wars helmet cake to create. Its always a little nerve racking until its done! Wish me luck!
Sending pain free vibes:goodvibes and pixie dust to allpixiedust:

[Indiana Rose Lee]

do you use a non smelly garlic supplement?

[tiggspring]

do you use a non smelly garlic supplement?

I use garlic gel caps with parsley. Parsley is supposed to eliminate smell. I prefer the gels becuase I'm concerned that powder will be less effective. I beleive when I first tried this back 13 yrs ago I could only find powder caps. The theory behind the garlic is that it is an antibacterial agent so if you have issues with bad bacteria it will kill them. Doesnt hurt that its good for your heart too!
My DD and DH have stomach problems too and find that yo-plus helps quite a bit. Activia and others have not. Yo-plus has fiber too dont know if thats the difference for them.:confused3

Here's to happy tummy's;)

[tiggspring]

Hey that was my first Quote post!! It only took me 3+ years to figure out how to do that. Gotta love the keenly observant fibro brain:rotfl:

[Indiana Rose Lee]

LOL, thank you for the info, and congrats on your first quote.

[brighteyes]

Well I have missed you all, and made it through this week of school!! I just had another research paper that kicked my butt. It was so frustrating, hope I get a good mark. It shoulda been an easy one but for some reason I made it difficult on myself.

Well after rushing out the door to school on morning and having a flat, and my paper and the rain I am again sore, sore, sore, and have a 7 hour day of cpr training tomorrow. :scared1: I am dreading it, cause once I am down on the floor, I won't be able to stand back up again. Seriously it is difficult cause of the weight and pain.

AND I STILL DO NOT HAVE MY ELLIPTICAL PUT TOGETHER :headache: My friend came last weekend to help me and a part doesn't fit, so I have spent the week playing phone tag with the part dept. (they are closed when I get home) and today booked an appt for them to come NEXT FRI :sad1::sad1:

So I will catch up on everyone's reading and just thought I would say my new Xlarge heating pad is my new boyfriend. I will never spend another night without it.

But someone here said they own a heated mattress pad?? Does it get really warm? How is it?? I think I want one of those. :laughing:

Hope everyone is having a good day and has a good weekend and pain free vibes (or as close as possible) I will check in tomorrow to catch up and read.

:dance3: This is me in my MIND. :lmao:

[EDuke98080]

But someone here said they own a heated mattress pad?? Does it get really warm? How is it?? I think I want one of those. :laughing:

The heated matress pads are wonderful. Worth the investment. Having a really hard time forcing myself to do stuff these days. So achy.... Just want to sit and be a lump but really need to get more exercise.

:upsidedow

[brighteyes]

Thanks for the response. I think I will be putting one on my christmas list. I still have not had time to catch the thread up, so perhaps this long weekend. I still have one more paper due on Wed. :upsidedow

But definately a heated mattress pad, would make my life wonderful. Although I am not sure I would want to leave my bed this winter. It is only fall and I am so achy and sore I just want to be a lump too. :goodvibes Ha Ha well I already am a lump, a rather round one, if I might say so. he he :lmao: But hopefully the treadmill will be put together this friday I have a service guy coming to replace one of the parts, the screw does not fit the holes.

Hope everyone has the best day they can. :grouphug:

[Indiana Rose Lee]

LOL, your heating pads sound so nice, but I am also fighting perimenopause and hot flashes from the savella!

[Tinker'n'Fun]

:hippie:

[Indiana Rose Lee]

tiggspring, how did your cake turn out?

[ireland_nicole]

Hi Y'all; just wanted to check in w/ ya. Pain is tolerable; thankfully it doesn't get cold here except for a few weeks, but pretty achy due to a lot of rain (although we're in a major draught, so I'm ok w/ the achiness LOL).

I'm under a fair bit of stress at the minute which isn't helping; DH has thankfully kept his job so far, but evryone had to take a 25% pay cut over a year ago; couple that with 3 extended hospitalizations (2 for 1 kid, 1 for DH) and the fact that most of the kids therapies aren't covered... well, suffice it to say, we went from being ok financially to being 25k in debt. I've been seriously looking for work for 3 months, but so far haven't found anything. It looks like I'm going to have to go full time just to find something. At least I interviewed yesterday for a job that might work; it's a computer job at a nurses salary working 10-7 and I can work from home after 6 months. At this point I'm hoping I get it as we could be debt free (except for mortgage) again after about 6 months. DH says that if I want to quit after that it's ok. I'm just so frustrated; there are a lot of jobs I know I can't physically do, heck even the one I used to love (I was a Hospice nurse, but can't lift that much anymore or manage being on call through the night)... I guess I'm just having a pity party moment, so I appreciate you indulging me and I promise I'll get up now, put on my big girl pants, and get back to appreciating the fact that I'm still here.

[TinkerBean]

:hug:Vent away - that's what we are here for. I hope you find something soon.

Rhonda

[EDuke98080]

Thanks for the insight on the garlic, I will check it out. The weather is changing here, so aches and pains are here for a while. My internal clock is backwards right now and I am up all night, sleep til noon. I am starting to work on that tonight. Off the computer in a little bit. Hopefully asleep by 1 or 2, and I am getting up at 7 to take DH to work. This will give me the car to go out tomorrow and hopefully put me to sleep even earlier tomorrow night... Yikes that's a confusing post, sorry....

Hope everyone is having a good week. Gonna google the garlic now!

I am on the same mixed up sleeping schedule! My DH complains about it as he is tired early and we never get to spend time together. I can't tell you how much better I felt afer reading you post. I am not alone and it's not just me! THANK YOU!!!!!! I hope you have success with turining things around, I have trouble with that. I seem to get my best sleep from 7 Am to 11:30 AM :upsidedow

[EDuke98080]

LOL, your heating pads sound so nice, but I am also fighting perimenopause and hot flashes from the savella!


I think I am headed that way soon! LOL

[Indiana Rose Lee]

I think I am headed that way soon! LOL

Well, it is an interesting roller coaster ride!

[Tinker'n'Fun]

:hippie:

[brighteyes]

Hi Y'all; just wanted to check in w/ ya. Pain is tolerable; thankfully it doesn't get cold here except for a few weeks, but pretty achy due to a lot of rain (although we're in a major draught, so I'm ok w/ the achiness LOL).

I'm under a fair bit of stress at the minute which isn't helping; DH has thankfully kept his job so far, but evryone had to take a 25% pay cut over a year ago; couple that with 3 extended hospitalizations (2 for 1 kid, 1 for DH) and the fact that most of the kids therapies aren't covered... well, suffice it to say, we went from being ok financially to being 25k in debt. I've been seriously looking for work for 3 months, but so far haven't found anything. It looks like I'm going to have to go full time just to find something. At least I interviewed yesterday for a job that might work; it's a computer job at a nurses salary working 10-7 and I can work from home after 6 months. At this point I'm hoping I get it as we could be debt free (except for mortgage) again after about 6 months. DH says that if I want to quit after that it's ok. I'm just so frustrated; there are a lot of jobs I know I can't physically do, heck even the one I used to love (I was a Hospice nurse, but can't lift that much anymore or manage being on call through the night)... I guess I'm just having a pity party moment, so I appreciate you indulging me and I promise I'll get up now, put on my big girl pants, and get back to appreciating the fact that I'm still here.


Well for anyone pity parties are sometimes in order. I hope that if you get this job -- and that it will work for you. I understand that dilemma, needing a job you can do.

I was just speaking about this such thing today, regarding therapy, etc for children with special needs and how do parents do it??

Sometimes we have so many things on our plates that it is hard to put on our big girl pants. It sounds very stressful for you. I hope things improve and that you start to feel better soon. I don't believe that you are having a pity party. Sometimes things suck and we just have to say it.

We are here to listen and support you. :hug:

[ireland_nicole]

Well for anyone pity parties are sometimes in order. I hope that if you get this job -- and that it will work for you. I understand that dilemma, needing a job you can do.

I was just speaking about this such thing today, regarding therapy, etc for children with special needs and how do parents do it??

Sometimes we have so many things on our plates that it is hard to put on our big girl pants. It sounds very stressful for you. I hope things improve and that you start to feel better soon. I don't believe that you are having a pity party. Sometimes things suck and we just have to say it.

We are here to listen and support you. :hug:

Thanks, I really apreciate it. I didn't get the job, but the recruiter said hopefully the next one... apparently positions open up anywhere from weeks to a couple of months apart. So the good news is, I don't have to work on Monday- which is great, because I have two teacher conferences, an ARD meeting, an appt. w/ a new psychiatrist for DD, and she starts hippotherapy... had no idea how I was going to manage if I was working on Monday, so that's covered. The bad news, of course, is no money. I did a wedding cake last weekend, have a birthday cake next, and am making friends a couple of halloween outfits for their kids, so that will bring in some, plus I'm giving a friend sewing lessons and I'm thinking about selling some of my old gold from boyfriends in high school and stuff so we have Christmas money. I'm sure we'll figure something out

In the meantime, thank you guys for your prayers and well wishes. I appreciate the pixie dust and am sending pain free vibes to all of you fibro sisters.

[EDuke98080]

Last night was pretty much the same. I finaly fell asleep around 3am, and DH woke me at 6:30 to take him to work. I came home, did stuff around the house and took a nap from 10:30 - 12:00. I feel terrible this afternoon. Hopefully I will be tired tonight. If not, tomorrow I will have to sleep in and try again another time.

I am sorry you felt so horrible after getting up early. The same thing happens to me and no matter how tired I am I get to sleep around 3. I like your signature things - had a breast biopsy in July - everyine needs to have their mamos. Thanks for the reminder!

[Tinker'n'Fun]

:hippie:

[tiggspring]

Hi Guys!

Should be making 2nd cake but wanted to check in instead. Thanks for asking about the cake. I'm hoping to figure out how to post picks today and let you see.

DH just sent me an article from NPR that points to a retrovirius as the cause for Chronic fatigue syndrom. Since many of us have the dual diagnosis of CFDS and FM thought you might want to take a look. http://www.npr.org/templates/story/story.php?storyId=113613955 I

I was lucky a few days this week and fell asleep early and slept all night!!!!:cool1: Blissfully unaware of my pain all night. Lost 2 lbs too! Last night Dh needed to go to bed really early so I fell asleep on the couch now my neck hurts. Hopefully tonight when I can be in bed watching TV I will have another great night sleep. I'm really hoping this a new normal sleep cycle because my body clock has been fighting me ever since we got back from WDW in May. Like most of you my body likes to sleep somwhere between 3am and 11am.

[tiggspring]

I'm under a fair bit of stress at the minute which isn't helping; DH has thankfully kept his job so far, but evryone had to take a 25% pay cut over a year ago; couple that with 3 extended hospitalizations (2 for 1 kid, 1 for DH) and the fact that most of the kids therapies aren't covered... well, suffice it to say, we went from being ok financially to being 25k in debt. I've been seriously looking for work for 3 months, but so far haven't found anything. It looks like I'm going to have to go full time just to find something. At least I interviewed yesterday for a job that might work; it's a computer job at a nurses salary working 10-7 and I can work from home after 6 months. At this point I'm hoping I get it as we could be debt free (except for mortgage) again after about 6 months. DH says that if I want to quit after that it's ok. I'm just so frustrated; there are a lot of jobs I know I can't physically do, heck even the one I used to love (I was a Hospice nurse, but can't lift that much anymore or manage being on call through the night)... I guess I'm just having a pity party moment, so I appreciate you indulging me and I promise I'll get up now, put on my big girl pants, and get back to appreciating the fact that I'm still here.
Ireland Nicole. Sorry sorry to hear about you stresses I think all of us have been or are currently where you are now. Money is difficult here too. We had mold problems that required us to move and Bat problems that required rabies shots a few years back. My DH began teaching at a local University to make extra income, then began doing supervision on the side and occasionally works for attorneys and does public speaking on the side when a new bill comes in. I'm not sure how he manages the 80+hours he is now working and doing class work for a PhD. It really drives me crazy that I can't get out and work. We left New England so he could be home with me and the kids. But as you know Ireland its not just the medical bills, it the gas to get there, unexpected meals out, babysitting etc. Last year DH and I had 20 Dr and medical procedures between us (he has glaucoma) and most times a day out for a procedure was $150 for childcare for three kids etc and that was before our co pay! We know that the PHD is key if we are ever going to get out of this mess and have the kids go to college but we miss him terribly. Helping with college is out since we have never been able to get ahead because of medical bills. If he gets a Professor job then kids go to school free and as long as he can speak he can work. Speaking-teaching is much easier than mental health and pays better too. It seems he may never really retire. Now the IRS has refigured our taxes for the last several years and it looks like we are $10,00+ in debt to them because he worked so hard to get us caught up. I find myself dreaming about the IRS! (at least dreaming means I'm really sleeping ) The whole situation is so frustrating:mad: Hopefully when I work on our taxes this week I will find out they are wrong but i'm almost afraid to look with all his different income sources and deductions it a big job and we could not afford a accountant the last several years but should be able to next year:cool1:

On the one hand it is good to know that we are all in the same boat. At least we know its not our fault. On the other hand sometimes it feels like all of us that deal with medical issues are all on the titanic!:scared1:

Sounds like you are a great mom and wife. Juggling your kids medical issues as well as your own all the while looking for work. Hang in there we are all pulling for you:grouphug:

Sending Pain free vibes:goodvibes and pixie dust to you all pixiedust:

[tiggspring]

On a lighter note here is Nathan's Stormtrooper cake. It would have looked better if I used fondent instead of regular icing but my kids hate fondent.
Also a little off topic but for those of you who might be planning a trip to WDW I got a 7 days for 5 promotion in my email this week!

http://i965.photobucket.com/albums/ae134/tiggspring/Nathansbirthdayandgarfieldcomeshome.jpg

[ireland_nicole]

Ireland Nicole. Sorry sorry to hear about you stresses I think all of us have been or are currently where you are now. Money is difficult here too. We had mold problems that required us to move and Bat problems that required rabies shots a few years back. My DH began teaching at a local University to make extra income, then began doing supervision on the side and occasionally works for attorneys and does public speaking on the side when a new bill comes in. I'm not sure how he manages the 80+hours he is now working and doing class work for a PhD. It really drives me crazy that I can't get out and work. We left New England so he could be home with me and the kids. But as you know Ireland its not just the medical bills, it the gas to get there, unexpected meals out, babysitting etc. Last year DH and I had 20 Dr and medical procedures between us (he has glaucoma) and most times a day out for a procedure was $150 for childcare for three kids etc and that was before our co pay! We know that the PHD is key if we are ever going to get out of this mess and have the kids go to college but we miss him terribly. Helping with college is out since we have never been able to get ahead because of medical bills. If he gets a Professor job then kids go to school free and as long as he can speak he can work. Speaking-teaching is much easier than mental health and pays better too. It seems he may never really retire. Now the IRS has refigured our taxes for the last several years and it looks like we are $10,00+ in debt to them because he worked so hard to get us caught up. I find myself dreaming about the IRS! (at least dreaming means I'm really sleeping ) The whole situation is so frustrating:mad: Hopefully when I work on our taxes this week I will find out they are wrong but i'm almost afraid to look with all his different income sources and deductions it a big job and we could not afford a accountant the last several years but should be able to next year:cool1:

On the one hand it is good to know that we are all in the same boat. At least we know its not our fault. On the other hand sometimes it feels like all of us that deal with medical issues are all on the titanic!:scared1:

Sounds like you are a great mom and wife. Juggling your kids medical issues as well as your own all the while looking for work. Hang in there we are all pulling for you:grouphug:

Sending Pain free vibes:goodvibes and pixie dust to you all pixiedust:

Oh gosh, honey I'm so sorry for what you're going though. Dealing with the IRS is such a nightmare scenario. Funny, my DH has glaucoma too. My husband used to work the kind of hours of your DH, but thankfully, in his current job he's home a lot more which is a God send. Part of me is relieved that someone else can understand the financial pressures and constnat feeling like you're sinking under the debt, but mostly I really wish no one else had to deal with all of this. Sending you pain free vibes, and hopes of another good night of sleep- stay off the couch!

On a lighter note here is Nathan's Stormtrooper cake. It would have looked better if I used fondent instead of regular icing but my kids hate fondent.
Also a little off topic but for those of you who might be planning a trip to WDW I got a 7 days for 5 promotion in my email this week!

http://i965.photobucket.com/albums/ae134/tiggspring/Nathansbirthdayandgarfieldcomeshome.jpg

Awesome job!!! I am crossing my fingers that that promotion heads our way, too... The cake looks great!

[tiggspring]

LOL Thanks!;)

I was just told on another Thread that the promo is on the WDW web page. Also my travel agent was able to book us for the Poly in May. Its good on all levels although the promo says just budget. Also my agent said that she thinks it will go back to 7 for 4 and she will just slide us over when it does. Dont know if we will be able to go but we can always cancel but you cant get the deal if you wait. Hope this helps you go.:thumbsup2 We decided last year after only 2 vacations in 10 years that the bills will always be there but we never know how much time we've got and the kids..well they dont stop growing just because the bills come in.

Have a great weekend!

[tiggspring]

Just checked and WDW site is not posting this offer. It is good for april through June 2010. Here is a post I made on another thread.


http://www.disboards.com/showthread.php?p=33893762#post33893762

[tiggspring]

It's me again. :rotfl: Made it through another birthday. Today was a beautiful day. We went to a local festiville then had Katies party. Here is the cake you asked me to share. ireland_nicole how did yourr cakes come out? Please post some pix!

http://i965.photobucket.com/albums/ae134/tiggspring/Katiesbirthdayfortdays2009013.jpg

[brighteyes]

Wholly yummy!!!!! Well apparently I am having trouble sleeping now. It is 2:24 am and am wondering if I should start yet another paper. LOL I don't think I will....:laughing:

Yummy cakes, those all look awesome! I want to eat them all up!! popcorn::popcorn::

Well I missed one of my Thanksgiving dinners the other day cause my son was really wearing on my last nerve on Friday night to the point I was in tears. So I called my Dad and told him he needed to take my son away before I had a nervous breakdown. :eek: He said yes --- I think he could tell I was on the edge. So I had a peaceful day until he came home grumbling again.

And now my DS is too sick to be annoying, I have been catering to him all day, High fever :sick: Really high, cough, etc. So not sure if I will make it to my Dad's Thanksgiving dinner tomorrow.

The bright side is that my DS is too sick to argue with me about nothing which is allowing me to regain my sanity. :upsidedow

Hope you all have a good day tomorrow. The best day that you can :goodvibes

[EDuke98080]

The cakes are awesome! What talent you have! Thanks for sharing them. I am so sorry for the financial difficulties that people are experiencing these days. It is such a hard time for many. Glad you booked that trip, sometimes ithelps to have something to look forward to:yay:. Hope everyone has a good sleep and pain free day tomorrow.

[tiggspring]

The cakes are awesome! What talent you have! Thanks for sharing them. I am so sorry for the financial difficulties that people are experiencing these days. It is such a hard time for many. Glad you booked that trip, sometimes ithelps to have something to look forward to:yay:. Hope everyone has a good sleep and pain free day tomorrow.

Thanks for the complement , you too brighteyes! I always see all the flaws. My husband thinks I'm crazy when I say they are "ok". They were yummy. It was my DMIL chocolate cake recipe which everyone always insists on but it crumbs up when you frost it. Because these two cakes were 3D it meant they took 4 lbs of frosting each decorate!!! Major sugar rush:woohoo:. I had to scrape off some of the frosting so my kids wouldn't be going nuts for the week.

Alas the fun was not meant to last. At 11pm Sunday we heard a loud crash and then our two "supposedly sleeping" kids running down the stairs. My DS decided he wanted to reach something and climbed his 4 ft high bookcase. When the shelves came crashing down he was left with a 10inx8inch scrape on his chest/abdomen and he caught the corner of the bookcase with his left side full force. Needless to say we packed everyone up and rushed to the closest children's hospital an hour away. Our hospital here stinks I actually filed a complaint against them just before my DD was born and within a month the state had sanctioned them! Their children's unit primarily medivacs to the children's hospital anyway and our insurance says the local hospital is out of network soo...off we went. I worked med/surg for ten years so I wasn't worried too much but he definitely needed to be checked out before morning. He is fine. very lucky though. It would have been much worse if we didn't have all bookcases and chests straped to our walls! He has a very high pain threshold so he was even doing gymnastics today! I however needed to sleep all day today to makeup for the disruption. Luckily that seems to have done the trick!:banana:

Ahh the adventures of parenthood!:rotfl:Hope everyone had a great weekend!

Sending pain free vibes:goodvibes and pixie dust to allpixiedust:

[EDuke98080]

Just checking in with my fibro buddies..... how are all of you faring this week? It's cold in MA and I'm feeling it!

Stay warm and pain free!:goodvibes

[Tinker'n'Fun]

:hippie:

[EDuke98080]

Just checking in also. Went for my monthly Drs. visit and he put me on a new sleeping med. Not sure what it is yet since he forgot to give me the script and they had to call it in. Its not a narcotic, so I am assuming it is an antidepressant with sleepiness as a side effect...

All else looked okay and he gave me an antibiotic for sinuses and refilled all other drugs.

I am going away for the weekend to college shop with my daughter, hopefully it won't be too much, except we are looking in NYC and that never means an easy trip with shopping and all;);).

Hope your sinuses feel better. I found college visits exhausting when my daughter was looking. Too much to absorb. We went to NYU to look and Fordham. The little shops around NYU were fun to poke around in. I hope you enjoy the weekend and the time with your daughter too. I chuckled when my email showed a new post - I thought I was the only one still awake. Time to shut off the light and try to sleep. :guilty:

[brighteyes]

Well I am still awake. :eek: I really try not to be at this time of night, but due to my DS being sick all weekend with the flu and my biggest migraine ever today, I am still doing homework :scared1:

I am panicking actually. Friday I have a big exam worth 30 % of my mark and I don't get the material. it's too much to absorb. And I have an event for my student volunteer tomorrow night which means studying all night tomorrow night.

It's nights like this that I wonder why I am doing this???

[toocherie]

Hello everyone--woke up with a flare and pain all over. Then the dog's leash got wrapped around my feet and the next thing I knew I was on the floor!

Now I am really beginning to feel the effects of the fall . . . .but the GOOD NEWS is I'm going to Disneyland! And the Mickey's Trick or Treat Party tonight--even if I have to crawl to get there!

[ireland_nicole]

It's me again. :rotfl: Made it through another birthday. Today was a beautiful day. We went to a local festiville then had Katies party. Here is the cake you asked me to share. ireland_nicole how did yourr cakes come out? Please post some pix!

http://i965.photobucket.com/albums/ae134/tiggspring/Katiesbirthdayfortdays2009013.jpg

Great job on the cake! Here's the wedding cake from last weekend; the bride didn't want traditional, so we made hand dipped cake bites (over 400 of them). There were 4 flavors; Mojito w/ white chocolate, Orange chocolate with dark chocolate, Amaretto w/ milk chocolate, and CocoLoco (coconut cake w/ chocolate buttercream) covered also in milk chocolate. Without further ado:
http://i446.photobucket.com/albums/qq188/ireland_nicole/065-1.jpg
http://i446.photobucket.com/albums/qq188/ireland_nicole/067-1.jpg

I forgot to take pics of the birthday cake, but we have another order tonight, so hopefully I'll get pics of that.

Thanks for the complement , you too brighteyes! I always see all the flaws. My husband thinks I'm crazy when I say they are "ok". They were yummy. It was my DMIL chocolate cake recipe which everyone always insists on but it crumbs up when you frost it. Because these two cakes were 3D it meant they took 4 lbs of frosting each decorate!!! Major sugar rush:woohoo:. I had to scrape off some of the frosting so my kids wouldn't be going nuts for the week.

Alas the fun was not meant to last. At 11pm Sunday we heard a loud crash and then our two "supposedly sleeping" kids running down the stairs. My DS decided he wanted to reach something and climbed his 4 ft high bookcase. When the shelves came crashing down he was left with a 10inx8inch scrape on his chest/abdomen and he caught the corner of the bookcase with his left side full force. Needless to say we packed everyone up and rushed to the closest children's hospital an hour away. Our hospital here stinks I actually filed a complaint against them just before my DD was born and within a month the state had sanctioned them! Their children's unit primarily medivacs to the children's hospital anyway and our insurance says the local hospital is out of network soo...off we went. I worked med/surg for ten years so I wasn't worried too much but he definitely needed to be checked out before morning. He is fine. very lucky though. It would have been much worse if we didn't have all bookcases and chests straped to our walls! He has a very high pain threshold so he was even doing gymnastics today! I however needed to sleep all day today to makeup for the disruption. Luckily that seems to have done the trick!:banana:

Ahh the adventures of parenthood!:rotfl:Hope everyone had a great weekend!

Sending pain free vibes:goodvibes and pixie dust to allpixiedust:
Do you put your cake in the fridge before you frost it? That should help with the crumbiness. Also, if you put a real thin "crumb coat" first and then refrigerate again it helps. So sorry to hear about your DS, thank goodness he's ok.
Hello everyone--woke up with a flare and pain all over. Then the dog's leash got wrapped around my feet and the next thing I knew I was on the floor!

Now I am really beginning to feel the effects of the fall . . . .but the GOOD NEWS is I'm going to Disneyland! And the Mickey's Trick or Treat Party tonight--even if I have to crawl to get there!

Oh no; I sure hope you feel better tonight; maybe you can get an ECV and wear fairy wings with a sign that your pixie dust ran out before you landed.;)

[stampin_fool]

Hi Ladies,

I haven't been on here since this thread started and have just read through the whole thing. I didn't see this mentioned so I thought I would share with all of you about the new medication I was put on about three weeks ago by a rheumatologist. After my visit with him we had a long talk and I told him that I really didn't want to try Lyrica because of weight gain issues and that it hadn't been around for very long. He mentioned another medication that had been successful for people called Gabapentin. Apparently this has been around for a long time and was originally used to treat seizure patients but more recently used on Fibro patients to help with the nerve pain. He said that it would cause some fatigue (which is already a problem for me) and that he would start me out at the lowest dose possible and that I should follow up with my regular doc to adjust the medication as needed (this could be done every two to three weeks until the right dose is found). Well I have to say that last week, before our trip to Disney, I was pain free for several days!!!! The combo of Davacet, Gabapentin, and Cymbalta (one pill every other day) seemed to work pretty well.

Right now I am not pain free but I know that is my own fault as we took a short trip to Disney (me, my youngest special needs son, diagnosed with autism when he was 3, my other son who is 21 and his girlfriend). My oldest did most of the pushing of the stroller but was in a big rush around the park eventho I tried to explain to him that this was not good for me. I am sure that the excitement was just to much to contain as I have turned him into a Disney freak like myself, LOL! So for the last two days I have been really paying for my fun but do feel somewhat better today than I did yest.

Sorry to go on so long! Just thought I would share the medication info as it might help some of you like it has helped me. I know that it is still early in taking this and I may have to up the dose eventually but I felt so good the week before we left, I was amazed at the difference!!!

BTW, the photos of the cakes are awesome!!! My son would love the storm trouper one!

I am going to try to stay up to date with this thread now that I remembered it and am caught up (even if I can't remember half of what I read, LOL)! I will also post as to whether this med keeps working or not.

Hugs to everyone and hope you all are doing well and coping with the weather changes!!!

Ronda

[tiggspring]

Hi Guys I was up all night too!!:surfweb: but I was working on those taxes uhhg!:headache: Your good wishes must have helped because it was a few thousand less than it looked originally! We still will be making a payment about the size of our car payment for the next few years but since we just paid that off last month at least things wont be any worse than the have been.;)

Did sleep till 2 this afternoon. The nice thing is that for the past week or two when I sleep the bed actually feels good to be in. Usually I have two body pillows 3 regular and a wedge for under my arm and I'm still not quite comfortable. Feels good to sink into bed with little pain for a few hours.:thumbsup2

Speeking of pain how did your day go Toochie? Here's hoping that Disney magic melted the pain away!:upsidedow

Stamping fool Great to see you again.:wave2: I'm shying away from med's but that new one you are on is one I've never heard off so I'm really interested.

Bright eyes. Hang in there my DH feeling panicky too. Staying at a hotel for the next two days because he is 5oo pages behind and has to work on his project which is the one and only grade you get in a PHD class. Truly pass or fail at that level.

Finally Ireland_nicole . All I can Say is WOW. :worship:That's great !! See... that is why I don't make cakes for other people! My cakes are good for home but not for selling to other people. I do put the cake in the fridge and inbetween icing too. Both cakes had a lot of places where I used icing to build up an area like the entire nose area of the unicorn where a extra piece of cake would have slid right off.


Sitting by the fire soaking up the warmth and sending Painfree vibes :goodvibesand Pixie dust to allpixiedust:

[stampin_fool]

Stamping fool Great to see you again.:wave2: I'm shying away from med's but that new one you are on is one I've never heard off so I'm really interested.



Tiggspring here is some more info on Gabapentin: Gabapentin is frequently used to treat various types of Neuralgia. It has been found to be effective in prevention of frequent migraine headaches,[6] neuropathic pain[7] and nystagmus,[8] and is prescribed off-label (that is, without formal regulatory agreement) for these conditions. Gabapentin is widely believed to help patients with post-operative chronic pain (usually caused by nerves that have been severed accidentally in an operation and when grown back, have reconnected incorrectly) and nerve pain associated with spinal cord injury. It may be effective in reducing pain and spasticity in multiple sclerosis.[9], and has also had success in treating certain instances of Complex Regional Pain Syndrome.[10][11]

It is not uncommon for the prescription of Gabapentin to occur in a mental health context. It has been investigated as a mood-stabilizing treatment for bipolar disorder with the potential therapeutic advantage of having fewer side-effects than better established bipolar drugs such as lithium and valproic acid although numerous trials have shown that it is not effective. Gabapentin has limited usefulness in the treatment of anxiety disorders such as social anxiety disorder and obsessive-compulsive disorder, in treatment-resistant depression, and for insomnia.[12][13]

Additionally, Gabapentin has been prescribed to menopausal patients being treated with anti-androgenic compounds to reduce the incidence and intensity of the accompanying hot flashes[14]. It has occasionally been prescribed for treatment of idiopathic subjective tinnitus, although a double blind, randomized controlled trial has found this ineffective.[15] Gabapentin may help deepen sleep, positively affecting stage 4 sleep, and reducing arousals during the night [16].[citation needed] It could potentially be helpful for both sleep onset and sleep maintenance.[citation needed] Gabapentin is sometimes prescribed for RLS (Restless Legs Syndrome). Finally, it may be effective in treating akathisia - a rare side effect of typical antipsychotics that causes severe agitation and anxiety.

Hope this helps.

Ronda

[Beccabunny]

I've been taking Gabapentin for years (brand name Neurontin). I'm not sure how much it helps with my fibromyalgia, for which it is prescribed, but it sure helps with Restless Leg Syndrome. I only take it at night, as it tends to make me dizzy. Maybe it would help more with fibro if I could take the daytime dose as well. It definitely helps me get a better night's sleep.

[stampin_fool]

I've been taking Gabapentin for years (brand name Neurontin). I'm not sure how much it helps with my fibromyalgia, for which it is prescribed, but it sure helps with Restless Leg Syndrome. I only take it at night, as it tends to make me dizzy. Maybe it would help more with fibro if I could take the daytime dose as well. It definitely helps me get a better night's sleep.

I take one pill in the am and one at night. I haven't noticed any help in the area of sleep unfortunately. The doc told me it would make me sleepy but it hasn't. I also take a sleeping pill at night which used to work but hasn't been helping a whole lot lately. But if I don't take it I don't sleep at all so I guess I should be happy with the few hours of sleep a night that I do get. Not sure why I can fall asleep during the day but around 9pm I become wide awake (even if I don't nap during the day).

Ronda

[tiggspring]

Ronda
I know how you feel! My Body much prefers sleeping from 3am til noon. Its like my biological clock is turned around. Alzymers patients have something called sundown syndrome. They get much more confused starting in late afternoon and stay awake most of the night. If Fibro is a brain disturbance that might explain it but who knows :confused3

As far as Gabapentin I'm going to have to look into this more. Just texted DH and he was lecturing about this drug in his diagnosis class for social workers Monday night (go figure). Maybe he didn't think of it for me because I have had strong reactions to antidepressants...he just texted me again. Gabapentin can have significant side effects when coming off (i.e. seizures). When I first went on Ativan I took it everyday and coming off it was horrible. Took me months going down a 1/4 tab at a time. That being said I now can take it as long as I don't take it everyday for more than a week or so. It stops working then anyway. DH is going to talk to Psychiatrist at work and see if it can be taking short term according to DH I shouldn't need a baseline blood level so this might work for short periods when I have significant pain at night.

I'll have to add this to the list of things to discuss with my Dr in November. I planned on asking if I can have the viral test mentioned in the NPR report. It will be nice to have something productive to talk about with the Dr. instead of the usual "i hurt, I'm tired, I cant think"

Thanks Ronda and Beccabunny for the great info:thumbsup2

[DisneyMim]

WOW!! The cakes are beautiful!! Making me very hungry!! LOL!! You are very creative!!
Yes it is very cold in NE. My fibro has been acting up more so as it does with the weather. I call it my "Mary Poppins" syndrome. You know, when the wind changes. Also my migraines tend to get worse too.

I hope all of you have a pain-free week-end coming up or at least as little pain as possible. Looks like a nasty weather week-end in NE.

[Mermaid02]

Hi everyone! YooperMom directed me to you guys! I was diagnosed with Fibro and OA yesterday- the doc also ordered blood work for RA and Lupus.

Any info you guys could give me is MUCH appreciated!

[tiggspring]

Hi everyone! YooperMom directed me to you guys! I was diagnosed with Fibro and OA yesterday- the doc also ordered blood work for RA and Lupus.

Any info you guys could give me is MUCH appreciated!

Loreli so glad you found us!!! :welcome:Living with Fibro is a very long learning process. I have been living with it for more than 15 years and I still am learning news ways to manage it and the possible causes for my illness. If you look at all of the posts on this thread you will find that is true for all of us. But you are definitely in the right place. I have found this board much more positive than other sites. Maybe its the pixie dust! pixiedust:

Since Fibromyalgia and Chronic fatigue syndrome are both diagnosis giving when everything else is ruled out it means lots of tests. If you think you will need to leave work for disability payments do whatever testing they need first. Besides the medical testing you may want to have cognitive testing done if you have a decreased ability to concentrate over time. I chose to have this test taken in the first year to prove my cognitive limitations.

Your first priority needs to be to get stable and if that means out of work or modifying work then try not to fight it. You can always return to work but if you fight leaving (as I did) you will get much worse much faster. This is a time when you need to put yourself 100% first for awhile. I'm afriad that is something I dont do very well!:laughing: Some of the things you may want to rule out are MS, Lyme disease, thyroid issues, allergies. I'm sure some of the other posters can suggest several others.


You may want to keep a journal of your symptoms, what the weather was like, food you ate, activities, medication and supplements etc. It is very important that you learn how your body and your illnesses are effected by everything. While FMS and CFIDS patients have similar symptoms i.e. headaches, Pain, fatigue etc. we all express's them in very unique ways with very unique triggers so you will know your body better than anyone ..especially Dr's. If something doesn't feel right then its not right.

I would advise you to be careful of medications many of us are very sensitive to medications. I need to start at very low dosages and work my way up. I was tried on more that 20 medications my first year as the Dr's wanted to "fix me" with every visit . This was a huge mistake and made me much, much sicker. Try whatever makes sense to you but remember your body no longer likes changes. So try or add new things cautiously. Many Dr's are in such a hurry to make you feel better that they make you worse. That is true for physical therapy too. Constantly having new goals will usually backfire as eventually you will push too far and Crash. If you go back through all our posts:surfweb: you will find many medications, exersizes, suppliments,diets etc that we have tried with varried success and failure. I just learned of a new medication for me the other night!

Finally be patient with your self and have a sense of humor:upsidedow. Every day will be an adventure! I never know what life is going to throw at me from day to day so I have learned to be very flexible and grab life whenever it is in front of me:dance3:. Having a good day? Try to go to the park and not do the laundry:laundy:. Know what is important to you and do that first you will only have so many energy dollars each day. Do you want to spend them meeting an obligation you do not enjoy or doing something fun with your loved ones? Do you really need to do that medical test this week knowing you will be too tired to go to that party or can it wait one more week? The medical stuff literally ate up all my functional time the first two years. I was desperate to find an answer and the Dr's were throwing everything known to man at me. The result? The first two years were hard and when I said "stop!! "Things improved greatly. If you can learn the art of saying no and "maybe later" then you will have a much more productive and happy life with fibromyalgia. Fibro can be a blessing in disguise. I was a true A personality (still am) but the fibro has forced me to say no to things I would have felt compelled to do and to look at my life and find the joy and true priorities

I know this illness can be scary and very debilitating at times. If you know your body and know what you want to accomplish you will control the Fibro it will not control you. Oh and ask us lost of questions :confused:and vent away here as much as you like!!! Its very freeing to complain without pressure to feel better.:grouphug:

Sending Painfree vibes:goodvibes and Pixie dustpixiedust: To ALL!!

[Tweevil]

Hi everybody!
Long time no see :) I have just gotten back from WDW and I want to tell you it was glorious! I truly think the weather has a lot to do with it. As long as I took it easy and did not try to do rope drop I was good.

Now that I am back into the same old grind I am finding my symptoms getting worse. I have decided to go off my meds and be "plain" again to find out what's going on with me. I am dropping the cymbalta, pain meds, and all that. I am just taking my ulcer meds and see where I land. :rotfl2:

I slept all day today and it felt good, well while I was doing it, now all the stuff I was supposed to do is still undone but that's ok. I have to go to work tomorrow to prep for a staff meeting I forgot about (doh!) but I think I will be there by myself which won't be stressful.

I also wanted to touch base regarding my sleep test. I do have mild apnea but I have MAJOR PMMD (periodic muscle movement disorder) I never heard of that before! It's not restless leg but I guess groups of muscles that like to scrunch up and prevent me from hitting REM> I have ZERO REM sleep. No wonder why I am always tired! It said I had PMMD every 15-20 seconds. I guess my muscles like to move around even when I don't want them to...

My pain has been manageable since I decided to go off of it all - I have been trying to sleep and have a Dr. appt soon to talk about the PMMD and the CPAP peeps are coming to show me the new machine. I am not looking forward to that but it helps me sleep I think I could manage the pain better.

I hope everyone is doing well!:hug:

[tiggspring]

Hi everybody!
Long time no see :) I have just gotten back from WDW and I want to tell you it was glorious! I truly think the weather has a lot to do with it. As long as I took it easy and did not try to do rope drop I was good.

Now that I am back into the same old grind I am finding my symptoms getting worse. I have decided to go off my meds and be "plain" again to find out what's going on with me. I am dropping the cymbalta, pain meds, and all that. I am just taking my ulcer meds and see where I land. :rotfl2:

I slept all day today and it felt good, well while I was doing it, now all the stuff I was supposed to do is still undone but that's ok. I have to go to work tomorrow to prep for a staff meeting I forgot about (doh!) but I think I will be there by myself which won't be stressful.

I also wanted to touch base regarding my sleep test. I do have mild apnea but I have MAJOR PMMD (periodic muscle movement disorder) I never heard of that before! It's not restless leg but I guess groups of muscles that like to scrunch up and prevent me from hitting REM> I have ZERO REM sleep. No wonder why I am always tired! It said I had PMMD every 15-20 seconds. I guess my muscles like to move around even when I don't want them to...

My pain has been manageable since I decided to go off of it all - I have been trying to sleep and have a Dr. appt soon to talk about the PMMD and the CPAP peeps are coming to show me the new machine. I am not looking forward to that but it helps me sleep I think I could manage the pain better.

I hope everyone is doing well!:hug:


Glad you had a great trip!!:cool1: Its a bummer when you have a great trip and have to comback to reality:sad2:I have never heard of PMMD before either. It definately sounds like a possible reason for what many of us go through to sleep at night:headache: Thanks for the update!

Loreli , just saw you on another posting and noticed you are a pediatric nurse. Its amazing how many of us on this thread have a medical or psychiatric backgroud,or in my case both. I was a nursing tech for ten years mostly while getting my psych degree. then worked in a Childrens pysch hospital and community mental health. I liked the med stuff so much I still temped on the side for extra income. Our OP Toocheri is a nurse and bright eyes is in social service in Canada and I know I'm missing somone. Hopefully I didnt just have a brain hiccup and get something wrong. :rotfl:

[ireland_nicole]

Glad you had a great trip!!:cool1: Its a bummer when you have a great trip and have to comback to reality:sad2:I have never heard of PMMD before either. It definately sounds like a possible reason for what many of us go through to sleep at night:headache: Thanks for the update!

Loreli , just saw you on another posting and noticed you are a pediatric nurse. Its amazing how many of us on this thread have a medical or psychiatric backgroud,or in my case both. I was a nursing tech for ten years mostly while getting my psych degree. then worked in a Childrens pysch hospital and community mental health. I liked the med stuff so much I still temped on the side for extra income. Our OP Toocheri is a nurse and bright eyes is in social service in Canada and I know I'm missing somone. Hopefully I didnt just have a brain hiccup and get something wrong. :rotfl:

you didn't forget me, but I'm a nurse too (I've been home w/ my kids w/ special needs for 8 years, but am trying to find work.) My former niche was in Hospice.

[Momelie]

And me, former ER nurse, now living a new life a full time mom and part time humanities professor!

[tiggspring]

you didn't forget me, but I'm a nurse too (I've been home w/ my kids w/ special needs for 8 years, but am trying to find work.) My former niche was in Hospice.

Yep it was you I had forgotten;). I remember reading it when you were discussing job prospects add Momelie to the bunch that makes six of us at least. (hi Momelie:wave2:) :idea: Maybe they should do a study on professional backgrounds it may make the viral theroy look more likely. Lord knows the things I was exposed to in the hospital all those years. They never figured out why my toxoplasmosis levels were literaly off the charts and still extreamly high but at least mesurable after treatment and 15 yrs.

Pain free vibes:goodvibes and Pixie dust to all!pixiedust:

[brighteyes]

Even more ironic, in my first year of school I did a psych research paper on if fibro was real or imagined.

At the time, I had only begun to have my symptoms, so dr. were thinking more lupus at the time.

Anyway, having never done a research paper before, my proof was weak, I was only going to focus on the effects that lyrica and neurontin had in clinical trials. In my paper I had mentioned that sleep issues play a part in symptoms of Fibro and I found a study that showed that subjects that were deprived of REM sleep showed symptoms of Fibromyalgia.

Ironically, at that time, my sleep was becoming next to impossible. I would only sleep for one hour, awake for one, sleep for one, awake for one, I was exhausted. Fast forward two years later, and here I am, had a sleep study which showed no REM sleep, diagnosed with Fibro, and on lyrica. Go figure. :confused3

Even funnier, I did another paper on bipolar, and that self awareness is a key factor in leading a better quality of life. My mother asked to read my paper - I said no way --- SHE IS BIPOLAR and displays no self awareness.

Stephanie

[tiggspring]

And me, former ER nurse, now living a new life a full time mom and part time humanities professor!

My DH working on PHD to become Proff. His teaching is so much less stressful than mental health. I know he will miss the adreniline moments, I know I did, but it will be nice to settle down. A career servie firm just rated professor in the top 5 least stressful jobs. We hope so:) Congrats on the career change:thumbsup2

[tiggspring]

Even more ironic, in my first year of school I did a psych research paper on if fibro was real or imagined.

At the time, I had only begun to have my symptoms, so dr. were thinking more lupus at the time.

Anyway, having never done a research paper before, my proof was weak, I was only going to focus on the effects that lyrica and neurontin had in clinical trials. In my paper I had mentioned that sleep issues play a part in symptoms of Fibro and I found a study that showed that subjects that were deprived of REM sleep showed symptoms of Fibromyalgia.

Ironically, at that time, my sleep was becoming next to impossible. I would only sleep for one hour, awake for one, sleep for one, awake for one, I was exhausted. Fast forward two years later, and here I am, had a sleep study which showed no REM sleep, diagnosed with Fibro, and on lyrica. Go figure. :confused3

Even funnier, I did another paper on bipolar, and that self awareness is a key factor in leading a better quality of life. My mother asked to read my paper - I said no way --- SHE IS BIPOLAR and displays no self awareness.

Stephanie


LOL:rotfl: on DM my mother has no awarness skills and hates for anyone to be happy. When we went to WDW I called and left a message on her phone the day we left and said we would not be answering our phones because DH surprised me with a little trip. We gave her no details because she would have said something to try to ruin it.Truely a misery loves company kind of gal. We all call her Eyeore and she doesnt mind or get it :lmao:. You have my sympathies:hug:

Looks like two years ago your self concious was trying to tell you something. Wish mine had I was completely in denile until the day I was put out of work. :sad2: Hope you are feeling a little less overwhelmed this week. My DH took two days in a hotel and SEEMS to have chilled a bit. He cant wait for Dec. 16th!

[brighteyes]

My DH working on PHD to become Proff. His teaching is so much less stressful than mental health. I know he will miss the adreniline moments, I know I did, but it will be nice to settle down. A career servie firm just rated professor in the top 5 least stressful jobs. We hope so:) Congrats on the career change:thumbsup2

Not only less stressful, but just as valuable as being in mental health. I know my profs have made all the difference in the world during these three years I have been in school. What they have shown me and taught me have been invaluable and could not have imagined being where I am if it were not for them.

All of my profs are amazing, and I have learned all very different things from each. :hug::teacher:

[brighteyes]

LOL:rotfl: on DM my mother has no awarness skills and hates for anyone to be happy. When we went to WDW I called and left a message on her phone the day we left and said we would not be answering our phones because DH surprised me with a little trip. We gave her no details because she would have said something to try to ruin it.Truely a misery loves company kind of gal. We all call her Eyeore and she doesnt mind or get it :lmao:. You have my sympathies:hug:

Looks like two years ago your self concious was trying to tell you something. Wish mine had I was completely in denile until the day I was put out of work. :sad2: Hope you are feeling a little less overwhelmed this week. My DH took two days in a hotel and SEEMS to have chilled a bit. He cant wait for Dec. 16th!

Dec 16th is my freedom day too. I cannot wait. Last Christmas me and DS went to WDW. It was the best t hing ever but so tiring to go back to school. I did not tell my mom we went as she misses me so much, but I finally told her and hoped that she would understand that me and my DS needed to have a visit to WDW> I think she understood. I may go and visit her this summer if finances allow. I have not seen her for 7 years. The average is 5 but last visit was very very stressful for both my DS and me.

This break, I plan on doing nothing, excpet cleaning my house.

Growing up, I used to think my mom was just bitter and miserable but the last ten years, she has steadily declined and it was very clear that she was very ill. While I love my mom, it is very hard to deal with her, but I don't see her often as she is in British Columbia and I am in Ontario. That is a blessing in some ways, though, as it would be very difficult to have her so near me. Her state has been better in the last year as she is in an open home type setting that is monitored by nurses and she sees her dr regularly, so I should go while she is doing fairly well.

My friends think I should go to Disney again though for my own sanity. It will be hard to see her, but I should go again. If my mother could deal with the crowds I wuold tell her to meet us at Disney. :)

[tiggspring]

Dec 16th is my freedom day too. I cannot wait. Last Christmas me and DS went to WDW. It was the best t hing ever but so tiring to go back to school. I did not tell my mom we went as she misses me so much, but I finally told her and hoped that she would understand that me and my DS needed to have a visit to WDW> I think she understood. I may go and visit her this summer if finances allow. I have not seen her for 7 years. The average is 5 but last visit was very very stressful for both my DS and me.
This break, I plan on doing nothing, excpet cleaning my house.

Growing up, I used to think my mom was just bitter and miserable but the last ten years, she has steadily declined and it was very clear that she was very ill. While I love my mom, it is very hard to deal with her, but I don't see her often as she is in British Columbia and I am in Ontario. That is a blessing in some ways, though, as it would be very difficult to have her so near me. Her state has been better in the last year as she is in an open home type setting that is monitored by nurses and she sees her dr regularly, so I should go while she is doing fairly well.

My friends think I should go to Disney again though for my own sanity. It will be hard to see her, but I should go again. If my mother could deal with the crowds I wuold tell her to meet us at Disney. :)

I know exactly what you mean. I need to go back too. It has been 7 years. After 42 years I'm learning to put myself and my DH and kids first so we will go back to WDW on this great deal and if we can go back in the summer. I have realized when I take them into consideration not only do I lose but so do my kids. LAst trip my oldest DD begged to come back even though we stayed at a beachhouse blocks from the ocean! Its sad but they have never put me first and it has only been the last few years that I realized that no matter what I do I cannot win their love. They are too self absorbed in a variety of ways. I had a conversation with my DF recently and he didn't remember that I managed to gradute from college in three years despite working full time, taking care of DH1 while he was sick, in remission, then dying from Hodgkins disease then leukemia. How do you not remember that your 20 something daughter was mature enough to do that literally all by herself?I'm not bashing my family they did the best they know how but I finally got "when people show you who they are believe them!"


My family has come here several times but I find that when they are on my turf their "issues" Dm, DF, DSM are much more manageable. When I go home there are three families all with very different and major disfunctions. Which was good in that as a kid I thought they were all nuts:rotfl:. I have my own and truely unique disfuctions to pass on to my kids! My family is much more lovable from a distance. I can enjoy a nice conversation and when it goes south find a diplomatic way to get off. Visiting is a lagistic (3 state) and emotional nightmare. Not good for FMS as you know.My trip to WDW was the first time I truely made a clean break without feeling guilty. It only too 41yrs and a husband with a Psych background to convince me it was OK:rotfl2: I'm not took hard headed.

I'm with your friends go to Disney then to Mom's for long weekend:thumbsup2. Ask yourself a year from now will she appreciate the time you sacrificed with DS? If yes see her first. If no WDW then quicke trip back home . I realize as our parents get older these decisions can have consequences but your sons not going to be home much longer either. For those of us who care about everone its a no win situation in the guilt department:guilty: Thats MHO for what its worth.:hug:

[brighteyes]

I know exactly what you mean. I need to go back too. It has been 7 years. After 42 years I'm learning to put myself and my DH and kids first so we will go back to WDW on this great deal and if we can go back in the summer. I have realized when I take them into consideration not only do I lose but so do my kids. LAst trip my oldest DD begged to come back even though we stayed at a beachhouse blocks from the ocean! Its sad but they have never put me first and it has only been the last few years that I realized that no matter what I do I cannot win their love. They are too self absorbed in a variety of ways. I had a conversation with my DF recently and he didn't remember that I managed to gradute from college in three years despite working full time, taking care of DH1 while he was sick, in remission, then dying from Hodgkins disease then leukemia. How do you not remember that your 20 something daughter was mature enough to do that literally all by herself?I'm not bashing my family they did the best they know how but I finally got "when people show you who they are believe them!"


My family has come here several times but I find that when they are on my turf their "issues" Dm, DF, DSM are much more manageable. When I go home there are three families all with very different and major disfunctions. Which was good in that as a kid I thought they were all nuts:rotfl:. I have my own and truely unique disfuctions to pass on to my kids! My family is much more lovable from a distance. I can enjoy a nice conversation and when it goes south find a diplomatic way to get off. Visiting is a lagistic (3 state) and emotional nightmare. Not good for FMS as you know.My trip to WDW was the first time I truely made a clean break without feeling guilty. It only too 41yrs and a husband with a Psych background to convince me it was OK:rotfl2: I'm not took hard headed.

I'm with your friends go to Disney then to Mom's for long weekend:thumbsup2. Ask yourself a year from now will she appreciate the time you sacrificed with DS? If yes see her first. If no WDW then quicke trip back home . I realize as our parents get older these decisions can have consequences but your sons not going to be home much longer either. For those of us who care about everone its a no win situation in the guilt department:guilty: Thats MHO for what its worth.:hug:

I know, I totally know what you are saying. Yet, I feel that although everytime I go see my mother it brings back all her issues of being with my Dad. She resents the fact that he remarried and had kids and she never did. In all fairness to her, he was an *** to her, but in his defence he knew he could never make her happy. He was right, she is not happy, I believe that is what has caused her mental state to deteriorate to bi-polar.

Obviously there is more to it than that, but she is always the victim. And her bitterness comes back everytime I go see her. She does not see that I appreciate all she did for me. She raised me till I was 16 while my father was out partying. They separated when I was 5. But through her bitterness she does not see that I appreciate her, she thinks I idolize my father. Ha, my father refused to help me ever again financially if I went to Disney last year.

I told him, I do not know if I will be able to walk for much longer, or what is wrong with me, so I am going while my son and I can take advantage. He has always told me to wait for everything. Wait till my son gets older so I can date, wait till my son gets older to get a job, wait till I pay off college to go on vacation, wait wait, wait.

Now I am a 40 year old single mom who hasn't dated in many many years, cause I was always trying to better myself, always working. Now I feel like it's too late to find someone to get married, and I am sick. I was really worried when they t hought I had Lupus cause I thought what the hell did I wait for?? To get sick?? That is also what prompted me to go back to college, that I never did what I wanted to all along, cause I didn't have the courage.

SO I told my Dad, sorry you feel that way, I am not waiting any more. Don't help me ever again but just because I am a single mom, and not rich, does not mean I cannot go on vacation. Besides, I have not needed his help financially for years. My dad has a maid, house paid for, car paid for, and does not get my life. He never will. So I have not asked for his help since. and will not, even if my child and I are starving, I would not ask him for help. And my Dad says it is not my job to worry about my mom, but she is ill and I will always worry about her. But my grandma is there to help take care of her, but I don't know what will happen to my mom when she goes.

My mom understood why I went to Disney even though she misses me so much. Bless her. But she is at the other end of Canada, so it's not as easy to go for a weekend. I wish, then it would be no question, I would do Disney in a heartbeat. It's almost a quick Disney trip what it would cost me. And although it will be painful and stressful, I will try to go to Disney next year I hope or the year after.

Ahh...sorry for the long long vent, Now that you all now me very well, can you tell all that ticks me off. I say love your family, but live for yourself. :love:

I think we all have similar stories, we all have fibro, not an easy thing. We have all had to adjust our lives accordingly. This has taught me though, don't wait till tomorrow to be happy or go on that vacation, etc etc cause tomorrow might never come. I think I would not have gone to Disney for a second time with my son, or gone back to college if I had not gotten sick. Do it today!!!:grouphug:

Stephanie

[tiggspring]

Stephanie totally understand:hug:

As far as dating goes the good men who will stand by you appreciate a strong woman who keeps their sense of humor when they are down. One thing I will say about Education and Social work fields is that the men are much more open to what life throws in a woman's way. You will not need to be so focused on your son as these years pass and you know what you want. Perfect set up to meet Mr almost perfect :woohoo:

[brighteyes]

Yeah, I am not worried, I am just saying, I fell into that waiting trap. Now it's not so much an issue. My focus is school and getting a better job that I love. And then if it happens, great, if not, great.

HA HA. I am not looking to get married, just a guy to go to Disney with!! :banana: Or move to Florida with me. :cool1:

[tiggspring]

Yeah, I am not worried, I am just saying, I fell into that waiting trap. Now it's not so much an issue. My focus is school and getting a better job that I love. And then if it happens, great, if not, great.

HA HA. I am not looking to get married, just a guy to go to Disney with!! :banana: Or move to Florida with me. :cool1:

Yep if he doesn't like Disney and staying up late throw him back!!:rotfl:
If you cant find something at Disney to love you must be a miserable person!

[brighteyes]

Yep if he doesn't like Disney and staying up late throw him back!!:rotfl:
If you cant find something at Disney to love you must be a miserable person!

LOL You got that right for sure!! Oh and one more, you forgot -- he has to cook me dinner. :lmao:

[toocherie]

LOL--I must have missed quite a few posts but I TOTALLY agree with the sentiment of the foregoing posts! He's not worth it if he can't love Disney!

As for me, I have been a busy girl and dealing with a flare on top of it. Of course, I guess I can't complain because my 'busy' is Disney related--was at Disneyland last Saturday for a puzzle/quest/scavenger hunt thingie. It was HOT (weather wise). But we had a lot of fun.

Now I'm double-packing--for this weekend--another trip to Disneyland with a few of my Dis Diva friends, and then the following week my Mom and I leave for WDW!!!!! We ship our luggage, so have to have it done and to Fed Ex by this Thursday!!!! So I am doing laundry and trying to figure out what to wear on both trips.

I am so lucky--I have great friends who are house/dog/cat-sitting for me while I'm gone. I am truly blessed--and try to remember that when I wake up in the a.m. in pain!

I hope everyone is doing well and I'll try to catch up later!@

Cheryl

[brighteyes]

LOL--I must have missed quite a few posts but I TOTALLY agree with the sentiment of the foregoing posts! He's not worth it if he can't love Disney!

As for me, I have been a busy girl and dealing with a flare on top of it. Of course, I guess I can't complain because my 'busy' is Disney related--was at Disneyland last Saturday for a puzzle/quest/scavenger hunt thingie. It was HOT (weather wise). But we had a lot of fun.

Now I'm double-packing--for this weekend--another trip to Disneyland with a few of my Dis Diva friends, and then the following week my Mom and I leave for WDW!!!!! We ship our luggage, so have to have it done and to Fed Ex by this Thursday!!!! So I am doing laundry and trying to figure out what to wear on both trips.

I am so lucky--I have great friends who are house/dog/cat-sitting for me while I'm gone. I am truly blessed--and try to remember that when I wake up in the a.m. in pain!

I hope everyone is doing well and I'll try to catch up later!@

Cheryl


I am coming to live with you so I can hide in your luggage. :beach:

[tiggspring]

LOL--I must have missed quite a few posts but I TOTALLY agree with the sentiment of the foregoing posts! He's not worth it if he can't love Disney!

As for me, I have been a busy girl and dealing with a flare on top of it. Of course, I guess I can't complain because my 'busy' is Disney related--was at Disneyland last Saturday for a puzzle/quest/scavenger hunt thingie. It was HOT (weather wise). But we had a lot of fun.

Now I'm double-packing--for this weekend--another trip to Disneyland with a few of my Dis Diva friends, and then the following week my Mom and I leave for WDW!!!!! We ship our luggage, so have to have it done and to Fed Ex by this Thursday!!!! So I am doing laundry and trying to figure out what to wear on both trips.

I am so lucky--I have great friends who are house/dog/cat-sitting for me while I'm gone. I am truly blessed--and try to remember that when I wake up in the a.m. in pain!

I hope everyone is doing well and I'll try to catch up later!@

Cheryl

Will you adopt me??? PLEEEEZE!

Have a great time!

[tiggspring]

SOOO tired the last few days. Droped kids off for school then straight to bed. Slept til 1pm!!!! Now I've been up since 4 am when my DD5 woke me up. Now can't stop thinking-worrying about things.

Sending pain free vibes,sleep and pixie dust to all!

[tiggspring]

Sorry double posted from phone.figured out how to edit but not remove.

Sending pain free vibes,sleep and pixie dust to all!

[ireland_nicole]

SOOO tired the last few days. Droped kids off for school then straight to bed. Slept til 1pm!!!! Now I've been up since 4 am when my DD5 woke me up. Now can't stop thinking-worrying about things.

Sending pain free vibes,sleep and pixie dust to all!

:hug:

[Lachesis00]

Subbing as my sister has Fibromyalgia. I like to keep up on new treatments and what people are doing. :)

[stampin_fool]

SOOO tired the last few days. Droped kids off for school then straight to bed. Slept til 1pm!!!! Now I've been up since 4 am when my DD5 woke me up. Now can't stop thinking-worrying about things.

Sending pain free vibes,sleep and pixie dust to all!

I am so sorry and hope that you are feeling better really soon.

Just curious, is the time turn around a symptom of this? I have noticed that a lot of us have a hard time sleeping at night but could drop to sleep for hours during the morning and early afternoon. I haven't seen this on any info the docs have passed along but do find it rather funny that a lot of you are experiencing the same sleep patterns as I do.

Hoping everyone is having a pain free day!

Hugs to everyone!

Ronda

[brighteyes]

I am so sorry and hope that you are feeling better really soon.

Just curious, is the time turn around a symptom of this? I have noticed that a lot of us have a hard time sleeping at night but could drop to sleep for hours during the morning and early afternoon. I haven't seen this on any info the docs have passed along but do find it rather funny that a lot of you are experiencing the same sleep patterns as I do.

Hoping everyone is having a pain free day!

Hugs to everyone!

Ronda

I have never heard it quoted that the turn around is, however, lack of quality sleep is definately. I think what happens is, eventually after so long without a good sleep during normal times, that eventually, our bodies just get so tired that we have to nap.

If I sit down for a min to rest, there comes a point in the day where my eyes just start shutting and I nap not always by choice, sometimes only for 10 mins though, but I fall into a deep enough sleep that I am apparantly talking in my sleep after about two mins. My son yells at me for it, cause he can't hear the tv. :happytv:

I am trying tofight my way out of that sleep pattern of 3 - 12 from when my son was sick. My body wants to stay up till at least 3 or 4 am which makes it difficult to get thru school the next day. :eek: You would think the next night would be an earlier night but not so.

I really think there is something to this 3 am thing. I find that when I am about to experience a big flare, the sleep goes out the window, even with my meds.

Does anyone else find disturbance in their sleep before or during a flare?

BTW I handwrote 6 pages of my exam today and I aced it on 3 hours sleep!:banana:

[brighteyes]

SOOO tired the last few days. Droped kids off for school then straight to bed. Slept til 1pm!!!! Now I've been up since 4 am when my DD5 woke me up. Now can't stop thinking-worrying about things.

Sending pain free vibes,sleep and pixie dust to all!

I hope you can get some sleep soon. :wizard: And I hope you can stop worrying- thinking about things too :hug:

[tiggspring]

And I hope you can stop worrying- thinking about things too :hug:[/QUOTE]

Thanks for the good thoughts and Hugs Bright eyes and ireland_nicole and Ronda :thumbsup2. I am still so tired. Everyday this week went straight to bed when the kids got to school and slept all day:sad2:. The kind of sleep where you try to wake yourself up and you just cant get your body to respond. For me I think it is my new Fibro-PMS thing. This has been happening on?off for the past two years when I'm out 7 -10 away from my cycle. I would rather deal with the pain. I can fight through the pain, how do you fight falling asleep sitting up? The last few days I cant even fight it from 8pm-3 am my prime awake time. Now my son is home with what looked like the flu. He has sll the symptoms but they are very mild. Maybe it is a 24hr bug. I hope so because he has a Boy Scout camping trip and I dont want him to miss it.

Rhonda I have seen this with everyone I know with FMS-CFIDS. Its like our bodies become nocturnal. I know I have mentioned this before but alzymers patients have sundown syndrome where they are much more active and symptoms worse from say 3pm to late morning. I wonder if a part of the brain that is misfiring with them is also involved in our nocturnal tendencies?:. I am still so tired. Everyday this week went straight to bed when the kids got to school and slept all day:sad2:. The kind of sleep where you try to wake yourself up and you just cant get your body to respond. For me I think it is my new Fibro-PMS thing. This has been happening for the past two years when I'm out 7 -10 away from my cycle. I would rather deal with the pain. I can fight through the pain, how do you fight falling asleep sitting up? The last few days I cant even fight it from 8pm-3 am my prime awake time.

Bright eyes Congrats on the exam party: I know how you have been stressing about all that work.

ireland_nicole How are you holding up I know you were a little stressed out awhile back. The job hunt still on? How are your kids doing?

I was going to ask Cheryl how she is doing. We all know how she is doing since she is in WDW:woohoo:. She didnt even let Brighteyes hitch a ride in her luggage or adopt me in time to go. Thats a firend for ya;)

[tiggspring]

Subbing as my sister has Fibromyalgia. I like to keep up on new treatments and what people are doing. :)

Rachel :welcome:

If you look back several pages you will find information on some of the medications some of us are trying. A NPR link to a story they did linking a virus to the disease ( I plan to be tested my next Dr. visit) can be found on pg 13. :surfweb:A medication I had never heard about until a week ago pg 14. Posters results of sleep studies etc is mixed in with alot of stories and support so it may take some time to ferret it out. Don't hesitate to aks us anything everone here is GREAT:thumbsup2

[stampin_fool]

Subbing as my sister has Fibromyalgia. I like to keep up on new treatments and what people are doing. :)

Hi Rachel,

Hope your sister is doing well. I recently was put on Gabapentin and it really seems to be working well. I haven't had any really bad pain since a couple of days after I started this, with the exception of my short trip to WDW but that was my own fault as well as my older son who wanted to practically run through the parks. We were only there for four days and he was trying to get in everything in those few days. When we got home (and on the way home) I pretty much crashed for a few days. Now that I have recovered from that I have been doing pretty well with this new med.

Hope your sister is able to find something that works for her!

Ronda

[stampin_fool]

BTW I handwrote 6 pages of my exam today and I aced it on 3 hours sleep!:banana:

I have a hard time writing for any length of time now and can't imagine writing 6 pages! Your hand must be killing you!

[tiggspring]

I have a hard time writing for any length of time now and can't imagine writing 6 pages! Your hand must be killing you!

I know what you mean. My hands hurt constantly even on good days and I can't feel the tips of my fingers either. I do this neat little trick where I poke my fingertips with the tip of a steak knife. It completely freeks people out LOL:lmao:. I cant imagine writing that much either. Great job Bright eyes:cheer2:

[ireland_nicole]

Hi y'all; just wanted to let those of you who have been praying and sending pixie dust for me that I think I got a job today:cool1: It's as a private duty nurse with a pediatric homecare agency; the staff was all amazing, they have fantastic training and best (and worst) of all is that all the nurses are per diem- downside is no guaranteed income/upside I get to have total flexibility on hours. The nurses I had a chance to talk to today (the field nurses are in the office for compliance) all said they never offer to work a shift they don't get; and the company is paying for all the training, so I figure if they're putting that investment in, they're planning to get some work out. Because my background is pediatric and adult hospice, I'll probably be primarily working with families in that situation. They even said today that we need to "rush" i.e. shorter time calender days but longer time each day because they have a family coming on service that lives right by me and is in a hospice situation. I expect it to be emotionally draining, but rewarding, and I am over the moon about the flexibility to be able to take care of my kids needs and their average 4-5 dr. visits per month. Just wanted to check in and say "thanks"- also, I have another job interview (2nd) with a local homecare. Technically I could do both, so I'm trying to be open and see what comes of it.

[tiggspring]

Hi y'all; just wanted to let those of you who have been praying and sending pixie dust for me that I think I got a job today:cool1: It's as a private duty nurse with a pediatric homecare agency; the staff was all amazing, they have fantastic training and best (and worst) of all is that all the nurses are per diem- downside is no guaranteed income/upside I get to have total flexibility on hours. The nurses I had a chance to talk to today (the field nurses are in the office for compliance) all said they never offer to work a shift they don't get; and the company is paying for all the training, so I figure if they're putting that investment in, they're planning to get some work out. Because my background is pediatric and adult hospice, I'll probably be primarily working with families in that situation. They even said today that we need to "rush" i.e. shorter time calender days but longer time each day because they have a family coming on service that lives right by me and is in a hospice situation. I expect it to be emotionally draining, but rewarding, and I am over the moon about the flexibility to be able to take care of my kids needs and their average 4-5 dr. visits per month. Just wanted to check in and say "thanks"- also, I have another job interview (2nd) with a local homecare. Technically I could do both, so I'm trying to be open and see what comes of it.

Yea!!!:cheer2: I'm so happy for you! Just dont forget to take care of you:hug:

Except for my first year, I did all agency work and I LOVED it. I had to work full time take care of DH1 and go to School full time. I did not need a nurse manager getiing all upidy when I needed time off for a chemo treatment or a final exam. If you are open you will get to do so much.

I usually had three agencies that I worked with. One that was my primary and I gave them first dibs and made them my priority. The other two were my back ups and they knew it. If they really needed somone they would call and see if I could squeeze them in. When I needed work I would just see what they had available. There is always a shortage of temps.

I did spend months and in one case a year full time on the same case or hospital Ward. I would never go to full time staff position for medical again. In psych you need to develop relationships but in medical much of your care (except hospice and elder care) is short term. With the forementioned they keep the same staff for continuity for both PT and their timesheets so dont worry you will get to bond with your families. I always felt so honored by the hospice families that let me "in" but it is painful too. keeps your life in perspective;)

[ireland_nicole]

Amen, sister! I always felt the same way about "my" families; I felt so privileged to be allowed into their lives at such a vulnerable and intimate time, and really appreciated the blessing of knowing each and every day that what I did made a difference. This agency is like your primary, I think. All homecare, all pedi, all by per diem RN's. So we're not doing the "fill ins" for the primary, we are the primary (except when you don't want to be; just getting in extra shifts, etc.) The only salaried positions are the case managers. From what the nurses were telling me, their goal is to provide continuity in staffing. Especially with complex kiddos, and being in their home, having the same people as much as possible is really better for everybody. I'm almost afraid to think it will actually work out, but I'm finally starting to feel excited about it. I'm really lucky in that the more I am able to work, the quicker we'll get out of debt, but in terms of "making it" month to month, everything over $5-600 is "gravy" toward paying down debt faster; so there isn't a huge amount of pressure to get the 50 hours/week. I think my dream scenario would be to work 3 10 hour days with one family, and then pick up a couple extra shifts a month. The agency said this is definitely doable, and they manage it all the time, so we'll see how it goes. Thanks so much for your post; it's definitely comforting to know that the whole agency thing is workable in the long term. I'm already on the list for another agency, but it's definitely not well run, and the whole thing is not something I want to do on a regular basis. This place is different, they're definitely a team, it just felt "right"

[tiggspring]

One downside to temping is that some nurses wont trust you at first. I once had a Nurse follow me around on a oncology ward. After about two hours I finally asked her what was up. That week she had another temp who she had asked to empty a foley bag. When the nurse walked in the room the girl was attempting to take apart the central line:scared1::scared1::scared1:!
Needless to say she didnt know hat she was doing:sad2:.

On the other hand I got to do extensive rounds on the burn unit, open heart surgery in the 80's when it was just comming into its own, Aids patients before all the new drugs. The oportunities I had and the families I met were amazing. The huge upside was that I found that when you become like "staff" sometimes they underappreciate you like staff. At that point you can ask to be reassinged to another facility and when you go back to where you were working lo and behold they treat you well again without any confrountation etc..

Can you tell I LOVED :lovestruc working?

Congrats!party:

[tiggspring]

Amen, sister! I always felt the same way about "my" families; I felt so privileged to be allowed into their lives at such a vulnerable and intimate time, and really appreciated the blessing of knowing each and every day that what I did made a difference. This agency is like your primary, I think. All homecare, all pedi, all by per diem RN's. So we're not doing the "fill ins" for the primary, we are the primary (except when you don't want to be; just getting in extra shifts, etc.) The only salaried positions are the case managers. From what the nurses were telling me, their goal is to provide continuity in staffing. Especially with complex kiddos, and being in their home, having the same people as much as possible is really better for everybody. I'm almost afraid to think it will actually work out, but I'm finally starting to feel excited about it. I'm really lucky in that the more I am able to work, the quicker we'll get out of debt, but in terms of "making it" month to month, everything over $5-600 is "gravy" toward paying down debt faster; so there isn't a huge amount of pressure to get the 50 hours/week. I think my dream scenario would be to work 3 10 hour days with one family, and then pick up a couple extra shifts a month. The agency said this is definitely doable, and they manage it all the time, so we'll see how it goes. Thanks so much for your post; it's definitely comforting to know that the whole agency thing is workable in the long term. I'm already on the list for another agency, but it's definitely not well run, and the whole thing is not something I want to do on a regular basis. This place is different, they're definitely a team, it just felt "right"

This agency sounds perfect. Just keep an agency or two in your back pocket for the slow times that will inevitably come. That messed up agency will most likely have work available during slow times because, well because they are messed up. It may frustrate you that those clients dont get as good of care as your usual families but you will get some work to help your family and you can give them great care while your there. :) Some of my clients decided to leave the lesser agency because my care was better than they were used to and they decided to make a switch. Of couse I could not "take" them with me to my primary agency. just encorrage them to complain to managment and interview different places until they were happy.

[brighteyes]

Hi Rachel,

Hope your sister is doing well. I recently was put on Gabapentin and it really seems to be working well. I haven't had any really bad pain since a couple of days after I started this, with the exception of my short trip to WDW but that was my own fault as well as my older son who wanted to practically run through the parks. We were only there for four days and he was trying to get in everything in those few days. When we got home (and on the way home) I pretty much crashed for a few days. Now that I have recovered from that I have been doing pretty well with this new med.

Hope your sister is able to find something that works for her!

Ronda


Hi Rachel,

Welcome Rachel. There are a number of different meds. I have been taking Lyrica which has been working well. When I first started, it was a wonder drug and my pain was completely gone. After more than a year, some of the pains are returning. I also take Amitryptyline for sleep and pain. It doesn't work so well for sleep anymore, but still works for pain. I also take multivitamin, calcium and vit D. Hope you sister is doing well.

Ronda,

My hand was killing me, and I still did not get a good night sleep. But I had a good sleep last night and feel pretty good today. I am registered with disability services at my college, which means I can have extra time, or use a computer to write my exams. I did not register for this exam in time though, so I had to write. Next time I will register in time.

Tiggspring,

Are things going better for you now? I can totally relate to the tired thing. Most days there comes a period of time, when just like a Mack truck hitting me, all of a sudden I cannot keep my eyes open. Even when I am driving home (10 min drive) sometimes it is difficult to stay awake. Or if I sit on the couch I am asleep within minutes. I can tell you really loved your work. :love:

Ireland nicole,

Congrats!!! :banana::banana::dance3::yay::yay: Good for you!!! When is your second interview?? It sounds like this job will be good because it is flexible! That is what you need.!!!! Awesome, way to go. :cheer2:

OMG! I got my marks for my first exam, and I only got 65% :sad2: I don't think in my life I have ever gotten that low of a mark. I hate it when I get below an 80, but all I care about right now is passing. There was just way too many names to memorize etc. and with my brain fog, it was not a good exam. But my 2nd exam went very well so we just have to see what that mark is.


Hope everyone has a good weekend, and a good week.

:banana:

[Tweevil]

Hi everyone!

I posted previously about coming off my meds and let me tell you...coming off Cymbalta is EVilllllll! I did good for a day and then wham! dizziness, vision issues, SLAM into a wall. I have to go back to taking it every two days I guess and then taper from there.

Can't get a Dr's appt for the muscle thing until Dec 8th but the CPAP is still coming on Thursday. Maybe it will help me get some sleep. (fingers crossed!)


I am glad to report that I worked on the boat yesterday for a while - feel bad now but not anything I can't handle. My arms and fingers are yelling at me!

Anyhoo.... I hope everyone is doing well and is pain free for the week to come!:hug: