Fibromyalgia questions? FOUNDATION WANTS TO HEAR FROM YOU!

wkitsteiner · Post by **wkitsteiner** » Tue Dec 05, 2006 7:49 pm

We hope to feature a story on fibromyalgia and RLS in one of the upcoming NightWalkers issues. We have a specialist who will be answering actual questions from RLS'ers. Have a question? Please post it here and we will pass it along. I can't guarantee that all questions will be in NightWalkers but we would love to hear from the general public about this!

Post by **ViewsAskew** » Tue Dec 05, 2006 9:02 pm

We have SEVERAL people here with both. I hope they all see this.

Penguinrocks · Post by **Penguinrocks** » Thu Dec 07, 2006 9:20 pm

I am an RLSer with Fibro...

I don't have any questions that I can think of right at the moment.

I've just resolved myself to the fact that I shake with pain. And when it gets cold out, I feel like I'm being dragged by a Mack Truck.

Thanks for wanting to inform people. I, for one, appreciate it.

Penguin

tazzer · Post by **tazzer** » Thu Dec 07, 2006 10:59 pm

my mom has fibro, i'll see if she has any questions.

dee

Rubyslipper · Post by **Rubyslipper** » Mon Dec 11, 2006 1:47 am

Oh my gosh! What perfect timing! My doctor and I are coming to a parting of the ways because he can't keep it in his head that I have BOTH
RLS and fibro.
1. What symptoms do these two have in common and what are specific to each?
2. What meds can you take that will work and not contradict each other for a) pain b) depression c) sleep
3. Are there doctors who treat both conditions and where are they?
4. Are there any books, websites, HELP anywhere that specifically discusses these two in conjuction?
5. What are the links (if any) betwen the two?
Just to know that someone is listening and might be able to answer some questions is wonderful. I'm especially interested in the medications that can be used for both. I am on Wellbutrin and the doctor wants me to try Effexor for the fibro fog and energy levels even after I told him that I'm afraid of what it might do to the RLS!

Anonymous · Post by **Anonymous** » Tue Dec 12, 2006 12:17 am

Rubyslipper · Post by **Rubyslipper** » Sun Dec 17, 2006 12:47 am

Yes, fibro and RLS share lots of symptoms but you have to be careful because some of the meds for fibro make RLS worse. Many people that have fibro also have RLS as a symptom. It's worth looking into, especially since a few of us had RLS first then fibro. I'm doing studying on my own since so far no one else has seemed interested. I hope the Foundation goes on through with this.

Anonymous · Post by **Anonymous** » Sun Dec 17, 2006 2:08 am

jan3213 · Post by **jan3213** » Sun Dec 17, 2006 3:28 am

When I was diagnosed with fibro (which I'm sure I don't have now---it was my back problems), I was prescribed Effexor, an anti-depressant (SSRI) which caused me to have terrible side effects and made my RLS worse. When that didn't work, my neuro put me on Paxil, which is also an SSRI. I believe a lot of doctors use anti-D's to help fibro. I could be wrong, but that is what my neuro did.

Jan

Anonymous · Post by **Anonymous** » Sun Dec 17, 2006 3:36 am

jan3213 · Post by **jan3213** » Sun Dec 17, 2006 4:15 am

I think that was the purpose, but SSRI's also put my RLS through the roof. Effexor also made me extremely depressed and caused a few panic attacks. It was definitely not the drug for me. Nor was Paxil.

Penguinrocks · Post by **Penguinrocks** » Sun Dec 17, 2006 12:38 pm

Hi

This is why I have to suffer through the Fibro Flares. My neuro tried to treat for both...but that didn't work. If the RLS was stronger then the Fibro wasn't and vise versa

So now, it's just Sinemet. For the RLS and IF i need it, Vicodin for the fibro.

In October, I spent 3 out of the 4 weeks of that month unable to move my neck. I had to break down and use the Vicodin.

I know, I shouldn't try to be a martyr but, well, i don't know why i do stuff like that.

Penguin

Rubyslipper · Post by **Rubyslipper** » Sun Dec 17, 2006 11:59 pm

Yeah, my doctor tried giving me Effexor, supposed to help give me more energy and help me sleep better at night. When I reminded him that the ingredients in Effexor would likely make my RLS worse, he said "Just try it and see, if it doesn't work just stop taking it." Not a good answer and besides you don't just "stop" taking Effexor. He did finally give me a prsecrip for Vicodin for when "the pain becomes really bad only". Then proceeded to tell me that if I would just lose weight my depression and pain would mostly go away. This is the first time that I have lost faith with him. I don't go in for every little thing and have toughed it out for too long as it is. I have two viable disorders that he believes exist and has wanted to treat before. Now it's "lose weight and try something that you know will be harmful to you." It all is a bunch of crap. So I'm doing my own research and I'm getting mad. That's usually what it takes to get results. Isn't it a sad world when we have to go through so much just for a little relief?! :evil:

Anonymous · Post by **Anonymous** » Mon Dec 18, 2006 12:28 am

Kwazylegs · Post by **Kwazylegs** » Tue Dec 19, 2006 7:01 pm

I hadn't heard of fibromyalgia until I discovered this forum and the wonderful people who share their experiences, feelings and knowledge here. I just threw a search on the term "fibromyalgia", and on Medline Plus, the joint website of the U.S. National Library of Medicine and the National Institutes of Health. (www.nlm.nih.gov/medlineplus/fibromyalgia). I wish I knew how to include a link to other websites on this forum, so that I could share some interesting stuff with others here. Anyway, there's a lot of info about fibromyalgia there. I know many of you already know much of this information, but for me it was a real eye-opener. The similarities of identifying, defining, and treating fibro and RLS are remarkable. The questions and answers section of the National Institute of Arthritis and Musculoskeletal and Skin Diseases is especially interesting, and I think I now am beginning to understand why so many here share both syndromes.
Jan, if you're here, I know that you recently had symptoms which you thought might have been fibro, but since your surgery, you're now pretty sure that the fibro diagnosis didn't apply to you. Could you please tell me what your symptoms were before your surgery? My MRI results from last month have been viewed by both an orthopedic spine specialist, and a pain specialist, and they are convinced that my pain and numbness in my right leg are due to a couple of herniated discs in my lumbar spine. I want to avoid surgery if possible, but I don't know at what point I should ask for that option...the pain hasn't become debilitating yet, and I only experience weakness in that leg periodically. The pain MD suggests I do the epidural injections first, but is leaving the decision as when to get those up to me. Sorry for semi-hijacking this thread everybody, but it seems that so many of us are plagued by similar symptoms and syndromes. I hope that all those here who suffer from fibromyalgia see and respond to this thread. It sounds like a great opportunity to get some professional input on the syndrome. ---Andy