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Fibromyalgia
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Posted 4/11/2009 8:13 PM (GMT 0)
Hi, My name is Gina. I was diagnosed by my primary doctors as having fibromyalgia... I had a feeling. The major signs started a year ago. I went to the doctor and he tested me for lupus saying that it sounded like I had that. When it came back negative he said he thought I was just depressed. Then tried a ton of meds and then came back with he thought I was bipolar. After taking all the meds I gained 50 lbs :( So I am now sitting at 200 lbs :( never been this big in my life :( ... So I stopped taking the meds because they didn't help me. Then I noticed more symptoms. I told my husband I felt like I had the flu without the sickness and fever. I hurt all over :( So I thought I was just to heavy so I tried exercising which I had always enjoyed the previous year. Well I was down for days just doing a simply exercise video. So of course My exhaustion and headaches as well as pain has seriously got me down :( To the point that I would only do what I haddddd to do at home. And with 4 kids :( wasn't much being done :( So my new primary decided to put me on Lyrica and Celexa. I will tell you after taking them for a few days I felt a little better. BUT I also started swelling and the headaches made it worse at the same time. So I told the doctor when I got a rash the next day. Has anyone been allergic to lyrica. He tried me on Neurotin now. But I swell again and It isn't seeming to help as much. I have an appt with the Rheumatologist next week so I hope he can help me cope with all this cause I am dieing here! I have just about every symptom of fibro there is ... I am just scared that the doctor isn't going to believe me :( I am sooooo glad that I have found this board. It seems to be the best around!

Sorry it got so long! Thanks for taking the time to read it!

Gina
Posted 4/11/2009 9:07 PM (GMT 0)
Hi, Gina, and welcome!  I'm so glad you found us and joined in!  I have never taken Lyrica or Neurontin but both of them can cause some swelling.  The Lyrica can cause swelling in hands and feet and Neurontin can cause swelling in arms and legs...pretty much the same areas.  This seems to be a side affect.  Lots of times the side affects go away after a few weeks so I hope that happens to you.  But be sure to let your doctor know if that happens with you.  It could be important.  I suppose you can be allergic to this, too.  I was never allergic to penicillin but am now.  I'm also allergic to tetracycline so, yes, an allergy is a possibility.

 

I use ibuprofen with food and extra strength Tylenol for my pain and malic acid/magnesium supplements for pain and fatigue.  These have really helped me but they don't help everyone.  Many on this forum have had good results, though.  Many with fibro are deficient in vitamin D and that can cause pain and fatigue also so possibly have that checked out.  I'm deficient and am taking 3,500 IU a day to help get it in the normal range.

 

Bed Buddies are good for the muscular pain.  You can find these at Walgreens and other places or you can make your own.  Take a tube sock, fill it 2/3's full of raw long grain rice, and tie a knot on the end.  Pop it in the microwave and it will give off moist heat due to the moisture in the rice.  Moist heat feels great for most of us so we love our hot showers and baths, too.

 

Stretching exercises and light exercise is good for fibro.  If you sit or lay too much you will be stiff as a board.  I walk as my form of exercise and I also swim when the weather allows.  The walking is a good weight-bearing exercise and helps keep your bones strong, too, so I consider it a "twofer"!  smilewinkgrin

 

Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good info about fibro, including one about malic acid/magnesium supplements and how they work in your body.  There is also a link with gentle stretching exercises that really do help!

 

I'm glad that you are here!  Read back posts and ask questions and someone will be along to help you.  I hope to hear more from you soon.

 

Sherrine

Posted 4/11/2009 10:33 PM (GMT 0)

Hey there Gina!!

Welcome to the Forum!!  So glad you found us!!

4 KIDS.. geez, I don't know how you do it!!  I only had one and that was a handfull.  Now I have 3 step kids but they're all grown and gone. 

I noticed you mentioned swelling on some of your meds.  Do you mind me asking where you had the swelling?  As for the weight gain.. I hear ya.  I just got on new meds in Jan. and I've gained about 15-20 lbs. I'm at the highest weight I've ever been, too and  I'm not in the least bit happy about that!!  But I must admit I am feeling better. I still have bad days but at least I'm not having a bad day EVERYDAY!  So now I'm trying to get out and get a little more exercise.  Wish me luck!  LOL, you know how THAT goes.  I've never taken the meds that you had problems with, either (my med list is as seen below).  Apparently alot of fibro sufferers or fibromites have problems handling meds so I guess you'll have to try something else.

As always Sherrine, one of our Forum Mods, has given you great advice.  I just started taking Vit. D so I'm not sure how that's going to go,, but I know it can't hurt.  It seems a lot of us with fibro are deficient of Vit D.  Alot of the fibro family is having good results from taking it.

My GP is my fibro doc.  I haven't seen a rheumy, but of course if my doc recommended it I would.  A lot of our fibro family members see rheumies though and are really happy with them.. some .. Not so much.  But some rheumies have a good idea of what fibro is all about and some don't.  We've found that it all depends on the doctors.  Some believe in fibro and some don't.

I hope you'll join us in our Koffee Klatches..they're designed to give our members an opporturnity to share a little about themselves and take their minds off of the fibro for a while.  We also have virtual parties now and then .. and they are a ton of fun.

Keep posting and learning.  Since I've been on the forum I've learned A LOT!!  We learn for those that share their experiences so don't be shy.. share, vent or just say hi... we're always here for eachother because we really care about eachother.

Again.. I'm glad you found us and hope you'll join in. 

Posted 4/12/2009 5:34 AM (GMT 0)
Hi Gina!

And welcome to our family. Not too much I can add to the gals above..they are super for info. But at first try to go easy on yourself. Nice long, hot baths and soak those sore muscles, no heavy chores..those kids can help mom...in general be good to YOU!

Then, keep a pain journal. I put a link below to a good one you can copy and use for free. Fill it out each day and take it along to your doc appointments. Do that for a few months, or whatever it takes to see what patterns emerge. By showing this to your doc he/she will get a clear picture of your pain and be better able to treat it. It also shows them you are serious because you took the time to do it and you are not just complaining.

Good luck and keep in touch!
Chutz

http://www.painfoundation.org/Publications/TargetDailyLog.pdf
Posted 4/12/2009 6:26 AM (GMT 0)
Hi Gina, I am sorry you are having such a bad time of it. It is hard to find out you have something that isn't going to go away. We have all been to that Doctor that didn't believe us, he sure moves around alot. The people here are so nice & such good people. The Moderators are just great. You will love coming here for support & to be supportive. Welcome & it is nice to meet you, hugs, Denise
Posted 4/12/2009 11:55 AM (GMT 0)
Welcome Gina; you sure came to the right place. Very loving, active forum here. It takes some trial and error to get what is going to work for you. That's probably the most frustrating part of all. Trying this and that, looking for the magic elixir that will turn you back into the person you were. Good Luck and I hope you don't run into that unbelieving doctor. I ran into him 3 times. He looked different every time but the speel was much the same, ït's all in your head, it is a catch all dx for hypochondriacs, you have absolutely no pain tolerance whatsoever, grab yourself by your bootstraps and tough it out. I wanted to grab him by his strap and tough it out, but then I's be locked up with a bunch of unbelievers saying how my life was going to be spent. Nope, just politely bow out and keep looking for Your Doc. I told a receptionist once after one encounter, thank-you, but no thank-you, (whispered) "he's just a baby, I need a more mature doctor". She totally understood and no hard feelings.
Posted 4/12/2009 3:20 PM (GMT 0)
Hi Gina and welcome to the family. You have been given great advice by the others. I hate those times when it's not just the pain but you feel like your coming down with something, had one of those days yesterday myself.

 

I don't know how old your children are but unless they are all babies it's time to start delegating chores. They may not do things the way you would but it will help you out.

 

I'm glad you found us and we will be here for you.

 

luv and hugs

Marlee

 

 

Posted 4/12/2009 9:52 PM (GMT 0)
Hi Gina,

I am also newly diagnosed (two weeks ago). This is the best place- I already have gotten more information than anywhere. I started having trouble with a couple of stiff fingers at work (as a paralegal, lots of typing) and then that progressed to each hand, and hands and wrists swelled to the point  they couldn't bend. Then my joints and muscles started hurting. And my head. And, worst of all, my neck and back. Now, my knees and a hip, so I think that is everything else! tongue   if I don't laugh about it I start to feel sorry for myself, which is not my normal way. I would leave work after trying so hard to keep up with my duties and finally couldn't hide it anymore when I started dropping things, losing things, forgetting things, and hobbling in pain. I'd be so exhausted I'd get out to my car after work and just collapse and cry.

Wishing you good luck on your journey from another newbie,

Annie

Posted 4/12/2009 11:06 PM (GMT 0)
Thank you everyone.... Yes i have four and days can be tough with them. They have there moments both good and bad. I was swelling due to the meds. I have also been swelling in the mornings. I can hardly bend my fingers when I get out of bed. I am 31 and I feel like I am 60... There are days I just stay on the couch and others I try to tough it out. :( it doesn't always work but I try hard to make it. Then today of all days I wrecked my car :( I rear ended someone who stopped short. :( Airbags and all went off so now I am in EXTREME pain!

I am sooooooooooooooooooooo glad I found you guys!! :)

thanks for all the wonderful advice!!!
gina
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