Fibromyalgia Thread

[brighteyes]

Eeks, heat at home is nothing like being at Disney. I guess my Fibro is actually genetically altered to do better only in WDW!

Well I have my husband's surprise bday weekend all planned. A little back story. DH grew up as the youngest child of an alcoholic mom and father who had to work many many hours. He has siblings old enough to be his parents. Needless to say, despite his upbringing, he is the sweetest, kindest, giving person I have ever met. So since he never had birthdays, I give him a birthday week and or weekend. Last year we gave him a GPS and programmed a weekend at a few places in NY and PA. It was really fun....

So this year I planned a trip around his favorite new past-time: Soccer! He loves watching it on TV and watching the kids play.

So I asked his boss if he could have Friday the 16th. off from work. On Thursday we will give him a card, with a few clues and have all the addresses programmed into the GPS. We are going to Columbus, Ohio. Really cool hotel called Drury, I got a suite very inexpensive. Friday night the special mall has a traveling Soccer camp for their MLS team the Crew. We will do that, eat, and shop. I got tickets for Saturday to a Crew soccer game and it came with free tickets to the Zoo. So we will do the Zoo in the morning and afternoon, go back to the hotel, freshen up, and they have free happy hour... Then I got great tickets to the soccer game. I think I will find a pizza place and we will swim or whatever for the rest of the night after the game. On Sunday they have a whole German Village that we will visit. Great parks, authentic food, and brick walkways/homes. They also have a huge bookstore. So both DH and the kids will love that. We will then drive home. Sunday is his actual bday, but I think this will do just fine.

I am getting excited!

That sounds so exciting. Your whole family will LOVE that. That sounds like you really put a lot of effort into planning his bd weeks and weekends. He is lucky to have you. I just love when families pull together. Go team, go. Enjoy the weekend and let us know how it goes when you get back.

I am going swimming today. It is so hot here already. But don't care what I look like in a bathing suit. Packing up the cooler and going swimming for as long as I can.

Hope everyone has a good day.

 

[melmathis]

does the heat cause others a lot of pain just as much as the cold does. i seem to have trouble with any temperature extreme or change. or is this just my silly thinking. i too, as many of you stated, when i am feeling decent i tend to over do and then pay for it later. i am also worried about my trip to disney in a few weeks, i dont want to ruin anyones trip so i dont complain and very much overdo it.

 

[brighteyes]

I find in the extreme heat I tend to swell up. My face - my eyes, my whole body. Water retention I think or allergies, not really sure.

It was 42 degrees here today and I spent 6 hours swimming and I feel pretty darn good!!! Except really tired and my sunburned face

I welcome heat and HATE the cold. I dream of living in Florida (in their winter) or in California.

 

[weluvdizne]

Well, I had my ultra sound on Tuesday, and the dr. says everything looks great! The baby is measuring right on target. It was so cool to see it moving on the ultrasound while I was actually feeling it move, too. It's starting to seem real now. I'm getting excited, but just cannot believe how much work I still need to do to get ready! If I keep having days like yesterday, I'll never be ready. I got up around 10:30, got breakfast for the kids and just hung out watching tv. I went up to take a shower around noon and when I got out, I sat down on my bed to rest. Well, soon after, I ended up laying down and falling asleep in my bath robe with the towel wrapped around my head. My DH came home from work at 2:00 and came up to help me get my pj's on and I slept until 6:00. Dh took care of the kiddos and made dinner. I spent the rest of the night on the couch. I talked to dh about it when we went to bed last night, and I was so upset that I was crying. I just hate days like that. I hate not being able to do what I need to do. I hate not having a life. I was very upset. Today, I feel better mentally, and a little bit physically.
I told my dr. about my heart racing every now and then. He said I needed to get blood work done to check my thyroid, and then if that's o.k., then, I'd need to see a cardiologist. Both of my parents have congestive heart failure. I am hoping for a quick easy thyroid fix. I was trying to get to the hospital to get the labwork done yesterday, but obviously, no luck, so I went today, and they said the dr. should have the results tomorrow. Keep your fingers crossed, please!

Tinker -your b-day weekend for your dh sounds so great. He is lucky to have you. It's so great that you are making it up to him, what he missed out on as a child. I hope you all have a great time; I'm sure you will. I'm interested in the German town you are talking about. Both of my parents grew up in Germany, so I'm sure they'd love to visit there sometime.

I hope the heat is letting up for everyone. It's getting better here. I wish there was someplace with a perfect climate that all of us fibro people could go live and be comfy. Wishful thinking, right?

 

[tiggspring]

Hi guys!!

Sorry it has been so long. I've been really fighting this crash caused by my May dsiney trip. Total of 38 straight days of migrane symptopms, vison loss, speeach loss. Had a couple days where I felt a bit better but my eyesight was so gray. Got alot done that day but it is weird to see the whole world in black and white. I was really glad to get back to headaches 2-4 times a week! I hate that contsant fog they put me in.

My energy has been up and down since they stopped spending alot of time in bed so I can get things done when I'm up which is a big improvement over last year where I bascily spent 3-4 months in bed and got nothing done after our trip. I think the biggest reason for the improvement is that my kids are letting me sleep til 10 or so every day It took 11 1/2 years but DH and I can fianally sleep past 7 am thanks to DD5 sleeping late. This allows me to take the kids to all the free stuff our town has to offer. They go to a 3hr camp like program at our local Y which they love and gives me several hours to either recoup from the chaios if they are fighting or get a few things done without the hum of the kids. We also finally got a couch with recliners. Something we had needed to replace for 5 years but just couldnt afford. Now I can watch TV for more the 30 min with DH and not have all that pain in my legs! DD11 seems to have gotten the message and is doing better even learning to cook this summer. So now we have someting we like to do in common. DS also improving so with their help I am slowly getting the house to look almost normal instead of dirty and piled high with things to do Maybe I wont need a housekeeper anylonger not that I can afford one at the moment but I really miss a reasonably clean house.

Hey anyone else getting rignig in their ears? Ive had that alot the last few months and I had this numb feeling like low level static (ie electric fence or scat mat ) all over my body for several hours a couple times. These are new nerological symptoms for me.

Weather for me had not been a contributing factor lately. I broke down and got two AC's for our bedroom and hall and they have kept the whole house cool!!!! We had one muggy day when we got back from WDW and I realized that even if we cant afford it I cannot live without AC anymore. I jsut cant stand the pain and fatigue ampted up by a factor of 10



weluvdizne

Congrats on the good baby news!!! they are such a joy when they are little. I was a little surprised that you are not having more of a remission now that you are pregnant. I always did much better and many people I know with various immune disorders MS etc tend do better while pregnant. Just goes to show what a baffeling disease this is. Maybe you will feel better as you hit the 3rd trimester. I know all the hormones pumping just after birth had me literally pacing the floor for two days..almost a high. But I have very easy and quick deleiveries (under 4 hr) so I realize that most women dont feel that way.

I know it must be overwhelming to feel this way just before your cutie arrive. The best advice I ever got was from my Dr who told me to go ahead and get pregnant dispite FMS. She said I would always find a way to raise my children but I would regret not having them. she was totally right our mom instincts kick in and no matter how hard we always mannage to care and love them...not always with a clean house but so it goes I envy that you get to have those warm baby snuggles and clean baby smell. Nothing better than that!

Eduke congrats on the new pup!!

You really are crazy for taking in another one but I know how much Joy they bring to your

Bright and Tink hope the weather hasnt been bring you down too much.


Sending pain free vibes and pixie dust to all!

 

[Tinker'n'Fun]

 

[EDuke98080]

I hope everyone is doing ok. I really want to write a post to everybody but I am just sooooo tired. Here is why:

http://www.facebook.com/erika.lynn.olson.duke#!/photo.php?pid=6530647&id=548221182


Will catch up soon!

Erika

 

[EDuke98080]

Hi everyone. Not reading and catching up tonight, just too mentally whipped. I had DD's orientation the last two days. Today my IBS acted up, so between trips to the bathroom, over-drugging myself just to get through the day, trying to keep my head up and eyes open, lets say it was an experience.

We got home at 3:40pm and by 4pm I was totally out of it. I slept til 10pm. Ate a few little things that hopefully will stay in. I am a little awake, but have a horrible headache from all the pills.

DD absolutely loved it. She wasn't even mad that her mom was totally zoned on her drugs! Thank God, my sister picked us up and I didn't have to drive.

I will update more tomorrow. I am going to read a little then try to sleep through the night to heal my belly. Diane.

Hope your IBS feels better soon. I know your pian

 

[tiggspring]

Ok almost 2:30 and cant sleep. This better be a one night thing not a new pattern. I hate insomnia GRRRRR

 

[weluvdizne]

O.k., this is really starting to get me down. I'm tired of feeling this way. I guess the flare up is taking it's toll on me. I was in remission for so long (about 10 years or so) that I forgot how horrible this disease is. Since I wasn't having many symptoms that I couldn't live with, I hadn't even discussed it with a dr. in years. I had an Internist that I wasn't really fond of. He knows of my illness, but never addressed it, and since I was dealing with it all fine, I never brought it up either. I basically went to him if I had to for something. Well, I've decided I need to find a new dr. and find one that I like and that we will work together as a team. I think I found a good place to start. He's a Rheumatologist. I've never seen one before, but I am realizing that specialization can be helpful. He has a clinical interest in Fibromyalgia and Chronic Fatigue Syndrome. At least he knows about these and probably won't tell me I'm crazy. I'm going to call Monday for an appt., but I was wondering if anybody has any advice for my first appt with this guy. Any pointers to telling if he's worth sticking with? What about anything else? I just feel so out of practice since it's been a while. Also, back when I was seeing a dr. about it, that was back when it wasn't really accepted and no dr.'s really knew much about it.

I appreciate any feedback. I'd really like to get the most out of this as possible. I know, I'm not expecting a miracle, but some help would be good. I know he'll be limited as to the meds he can give me during pregnancy, but at least I will be comforted knowing I have done all I can do to help myself.

I hope everyone is having a good weekend. Anyone get to do anything exciting? I took the kiddos blueberry picking yesterday. Yummy! We didn't stay long because I couldn't and the kids got hot and there were mosquitos, but we did pick almost 6 pounds!

 

[tiggspring]

O.k., this is really starting to get me down. I'm tired of feeling this way. I guess the flare up is taking it's toll on me. I was in remission for so long (about 10 years or so) that I forgot how horrible this disease is. Since I wasn't having many symptoms that I couldn't live with, I hadn't even discussed it with a dr. in years. I had an Internist that I wasn't really fond of. He knows of my illness, but never addressed it, and since I was dealing with it all fine, I never brought it up either. I basically went to him if I had to for something. Well, I've decided I need to find a new dr. and find one that I like and that we will work together as a team. I think I found a good place to start. He's a Rheumatologist. I've never seen one before, but I am realizing that specialization can be helpful. He has a clinical interest in Fibromyalgia and Chronic Fatigue Syndrome. At least he knows about these and probably won't tell me I'm crazy. I'm going to call Monday for an appt., but I was wondering if anybody has any advice for my first appt with this guy. Any pointers to telling if he's worth sticking with? What about anything else? I just feel so out of practice since it's been a while. Also, back when I was seeing a dr. about it, that was back when it wasn't really accepted and no dr.'s really knew much about it.

I appreciate any feedback. I'd really like to get the most out of this as possible. I know, I'm not expecting a miracle, but some help would be good. I know he'll be limited as to the meds he can give me during pregnancy, but at least I will be comforted knowing I have done all I can do to help myself.

I hope everyone is having a good weekend. Anyone get to do anything exciting? I took the kiddos blueberry picking yesterday. Yummy! We didn't stay long because I couldn't and the kids got hot and there were mosquitos, but we did pick almost 6 pounds!

weluvdizne

I am so sorry you are having such a hard time!! I went into partial remeissions during each of my preganancies. Luckily those remisssions lasted for several months after my children were born (DH was home for 3+months each time so that helped). Unfortuneatley by six months my Fibro was in full swing At about 3 months i would notice little things and each time i was terrified! It felt like a freight train was bareling toward me and I new what was comming but was powerless to act I totally understand how much it sucks to know you are trapped by your body once again Trust me if it does not go into remission once your baby is born you will find a way to cope. you have done this before and you can do it again. Your children will be your biggest centering force. Right now you need to focus on what you can do. set small goals and wright them down so you can cross them off. At night maybe you could start a gratitude journal so you can remember the good things that happened during the day otherwise you will focus on the pain and fatigue it is only natural to do so. FMS is like childbirth if you fight the pain etc it gets worse both phyically and emotionally. If you go with the flow and do what you can between "contractions" you will fare much better.

As far as the DR. Have a list of your history, your old symptons, new symptoms, what you think may have triggered your remission and your flare and a list of all your questions. Have two copies one for you and one for the Dr because you will forget what is on that list if you hand it to him and you want that list ot be part of your documentation in his chart.

You will find that everone here has done something different to cope. Here is what I do now and why. I no longer take any medications other that vicoden as needed and ativan as needed but I use them more for "rescue" or short term fixes because they stop working then I have nothing.I tried 20+ medications and found each time i put something else in my body it just created a different problem. So imagry, meditaion, and really planned days and knowing my bodies clues have been the best "medicine". I will not take a drug that has not been on the market at least 5 years unless there is a chance it will cure me. Rumetoid drugs like humara increase your chances of blood cancers, lyrica significant weight gain (which for the FMS obese me is not an option) and from what I have seen here and other places most drugs just dont work after awhile. That being said you need to thnik about your body, what side effects you and your family can handle and know your stuff before you alow your Dr to give you anything. Many DR's are med happy which would be fine IF THEY KNEW WHY WE ARE SICK!!! Look at all your options and peck away at them one at a time. Remember your body reacts to stress diferently and each new intervention will be a type of stress (good or bad) so dont allow anyone to do too much at once. For all the hype of FMS treatments we really dont have much more than we had 15yrs ago when I was diagnosed. they are just throwing spagetti at the wall to see if it sticks.

You will find your way. We are all pulling for you


Sending Painfree vibes and Pixie dust to you all!

 

[brighteyes]

Tigg, I feel your insomnia. Even WITH sleeping meds I am not sleeping...Ugggh Hence you're theory that after three or four days they don't work.

Tink, I hope your tummy feels better soon too. How is your jaw??? My tummy is still misbehavin too.

Weluvdizne, The only advice I could offer you is to write out a history of your illness, dates you first started noticing symptoms, new symptoms, how they affect you and meds you have tried in the past or what other methods you have tried in the past. My dr. also made me list what tests I have had done and when. I had to go back to the VERY beginning with my symptoms when I went to a specialist. And I was asked hwo often I had these symptoms.

EDuke, I tried the link and it wouldn't let me see. So I hope everything is good. If not, I hope it gets better.

Hope everyone is feeling as good as you can

 

[Tinker'n'Fun]

 

[A Mickeyfan]

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.


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

I know this post is a few months old but I wanted to chime in about Topamax. I took it for over 2 years for migraines and so did my cousin. We both have suffered from vision problems. I stopped my Topamax in January and my cousin has just stopped his. My vision is slowly returning to what it was. My cousin's has not started yet. Topamax warns of glucoma but neither of us developed that. So just a word of advise, watch out for your vision while on Topamax. If you see any changes in your vision, head to your eye doc and GP for a different medication.

 

[tiggspring]

I know this post is a few months old but I wanted to chime in about Topamax. I took it for over 2 years for migraines and so did my cousin. We both have suffered from vision problems. I stopped my Topamax in January and my cousin has just stopped his. My vision is slowly returning to what it was. My cousin's has not started yet. Topamax warns of glucoma but neither of us developed that. So just a word of advise, watch out for your vision while on Topamax. If you see any changes in your vision, head to your eye doc and GP for a different medication.

Thanks for the info! I too suffer from migraines and know first hand about glacoma as my DH has it. I will tell my Dr this med is another no go for me.

This is really an example as to why I have become more anti meds over the years and will only try things that have been on the market for 5 years to be certain of any serious side effects. It seems that is when the effects of these drugs are generally revealed. Humara's black box warning of lymphatic cancers, viox's risk of heart attacks ( last drug i tried and it made me very agitated). Unless a treatment might cure me I just dont get the point of having serious side effects. Fibro is bad enough but it wont kill me. Of course I tried over 20 drugs before I came to this conclusion

Everbody has to do what is best for them physically and emotionaly. I needed to be certain no stone was left unturned before I could except that Fibro would be in my life a long time if not forever. luckily for me that came before humara. Having been a member of the lukemia society and having several friends die of blood cancers and losing my first DH to luekemia I would not want that fear over my head.

Guess what I'm saying is be careful out there.

Sending pain free vibes and pixie dust to all!

 

[tiggspring]

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.

Hey boo bear you havent posted in a very long time but if you are still lurking out there I have a question for you and anyone else diagnosed as a child. Did you have a family member diagnosed before you were, especially your mother? My biggest worry is that this is genetic. Before I had my kids I looked for 2 years to be sure I couldn't somehow give it to my kids while i was pregnant or through genetics. This still worries me as my oldest daughter seems quiet physically sensitive. Don't know if that comes from observing me or is physical . Any thought out there?


Ps I tried an inhaler for years for breathing constriction and chest pain. Also tested for heart conditions. My pain came from muscle spasims mimicing the other two diseases. just a thought.

 

[tiggspring]

Tink, eduke, weluvdizne Hope you are all feeling a little better this week

bright hope you slept last night. I did not but did the night before, seems to be up one night asleep the next...although tonight might be two in a row...the night is young LOL

take care all!

 

[melmathis]

my youngest daughter is 5. i was pregnant with fibro. i have always been very hesitant and will try my best not to let her see the true pain i am in. no matter, she will say "you are hurting arent you mama" or i will see that she picks up things for me so i dont have to bend over as much. she is not persistent that i push her for long periods will she is swinging. if i am playing with her it is ok if i lay in the floor or take breaks. i think children are able to sense more things than lot of people give them credit.

 

[brighteyes]

my youngest daughter is 5. i was pregnant with fibro. i have always been very hesitant and will try my best not to let her see the true pain i am in. no matter, she will say "you are hurting arent you mama" or i will see that she picks up things for me so i dont have to bend over as much. she is not persistent that i push her for long periods will she is swinging. if i am playing with her it is ok if i lay in the floor or take breaks. i think children are able to sense more things than lot of people give them credit.

DEFINATELY!! Agree! Children are wise beyond their years. Little angels, they are. Until they morph into teenagers.
Actually I gripe a lot about my teenager, but he truly is a good kid. Makes fun of me when I cry about tv shows but hey that's me. lol Just a big ol' crybaby.

 

[EDuke98080]

Hey boo bear you havent posted in a very long time but if you are still lurking out there I have a question for you and anyone else diagnosed as a child. Did you have a family member diagnosed before you were, especially your mother? My biggest worry is that this is genetic. Before I had my kids I looked for 2 years to be sure I couldn't somehow give it to my kids while i was pregnant or through genetics. This still worries me as my oldest daughter seems quiet physically sensitive. Don't know if that comes from observing me or is physical . Any thought out there?


Ps I tried an inhaler for years for breathing constriction and chest pain. Also tested for heart conditions. My pain came from muscle spasims mimicing the other two diseases. just a thought.

To address the genetic thing; I think there is a genetic link to the autoimmune diseases but I also think there has to be a trigger to set it off in someone who is predisposed to get it. My DD, the one with Celiac disease, shows signs of Fibro too. It is very mild but she complains of achiness when she doesn't get enough sleep. They think her Celiac was triggered by a bad case of mono in high school. It is after that when her health started to decline. My symptoms started in high school as well after a bad bout with mono as well. They feel that the autoimmune diseases can be "activated" by some type of trauma to the body or virus. It is the same with diabetes. My DD and DS have had the genetic testing for Celiac done. There are two genes that all pple with Celiac have. I assume I passed it to them and feel badly about it. I didn't know I carried it. I bet they will find the same type of thing with all the aother autoimmune diseases. I can say that since I no longer eat gluten I feel better. It's been about a year and a half. My IBS is gone, migraines only once in a while and pain level decreased even when I don't sleep. For myself, I react so strongly to even the mildest meds that I don't take any other than an over the counter pain pain reliever if I am really suffering. I think diet has alot to do with symtoms and would recommend trying to be gluten free if you can. Studies show it reduces inflamation in the body, it helps the brain fog too. It takes about 6 months of strict no cheating but my results were marked and amazing. "Food" for thought ~ it helped me and my quality of life is so much better. Not preaching, everyone has to do what they feel is right for them. Just wanting to share my good results.

I hope you all are doing well. Our new pup is exhausting but fun.

Pain free Pixie Dust to all!

Erika