Fibromyalgia Thread

[brighteyes]

Well I am still awake. 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

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. 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!

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:

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. 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!

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

Sending pain free vibes and pixie dust to all

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!! but I was working on those taxes uhhg! 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.

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

Stamping fool Great to see you again. 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. 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 and Pixie dust to all

 

[stampin_fool]

Stamping fool Great to see you again. 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

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

 

[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!!! 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!

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! 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 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. 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. Having a good day? Try to go to the park and not do the laundry. 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 and vent away here as much as you like!!! Its very freeing to complain without pressure to feel better.

Sending Painfree vibes and Pixie dust 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.

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!

 

[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.

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!

Glad you had a great trip!! Its a bummer when you have a great trip and have to comback to realityI 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 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.

 

[ireland_nicole]

Glad you had a great trip!! Its a bummer when you have a great trip and have to comback to realityI 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 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.

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) 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 and Pixie dust to all!

 

[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.

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

 

[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.

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 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 . You have my sympathies

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. 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!