Does anyone have Fibromyalgia?

[mbrogier]

My doctors think I may have Fibromyalgia. I'm going to a new PCP and then a Rheumatologist. I am having joint pain and tenderness in my neck and back, as well as my chest. I also have horrible insomnia. I was just wondering if anyone else had it and how you dealt with it. Any good websites I should know about? TIA!

[gabbyh]

This is my dear friend from work:

http://www.lef.org/magazine/mag99/dec99-profile.html

and the Fibro Protocol from our book:

http://www.lef.org/protocols/prtcl-050.shtml

Hope this helps...

~Gail

[mbrogier]

Thanks for the links, Gabby...they described me!

[Cookin4Love]

I was diagnosed with fibromyalgia and lupus 15 years ago for much the same reasons you have been. It's a long road with many ups and downs. The best thing that happened to me was a low-dose antidepressant at night to help me sleep. The first night I took it, I woke up after about 5 solid hours of sleep just amazed. It was the longest I'd ever remembered sleeping. The sleep, for me, is much of the key. That, and eating right and keeping my stress level down. I find that a good carb diet really helps with the inflammation in general. I haven't had a chance to follow the links Gail posted, but I will take a look at them, too. Feel free to pm me if you want to.

[mbrogier]

Thanks for the offer, Cookin4Love. I was on amytryptaline before to help me sleep, but I was taken off of it because it was interfering with my migrane medicine. I have interstitial cystitis, a bladder disease, and a lot of people that have IC also get Fibromyalgia. I have a lot of the confusion symptoms, but my neurologist was thinking it was my medication or remnants from my stroke. We never thought about another disease. (not that I was searching for something else). When I was in the hospital this week with arrythmia and chest pain, my confusion WAS a lot worse. I'm still really tired. I think I'll have some concrete questions later. I'll PM you when I do.

[Beth]

De ja vu! I just posted about fibromyalgia in another thread. I have a number of neck problems that were not getting proper treatment and my situation continued to worsen. By the time I first heard of fibromyalgia from a friend, I fit all the sypmtoms. Not the worst case, but definitely fit.

Today, I function with the limitations of my neck and arms, but I don't even really think about fibromyalgia unless I start getting lightheaded, fatigued, my memory starts slipping, etc. I have had the chest pains or other parts of my body -- especially when I started physical therapy again, but if I pay attention to those other symptoms creeping in, I can generally keep it at bay.

For me, the key was getting to doctors who could help me best deal with the underlying problems -- the herniated discs in my neck. Antidepressants only made me worse. I did try guaifenesin therapy and played with the anti-inflammatories and muscle relaxers until I found the combination that worked for me. And finding out that I wasn't losing my mind and ruling out some other problems helped ease my mind. Antidepressants, including amytryptaline, made me feel much worse, but helped me believe I wasn't just depressed as some had suggested.

In my reading about fibromyalgia, I remember a study mentioned that induced fibro symptoms in men by severe sleep depravation. The people I have personally known with fibromyalgia (maybe 3) have all had an underlying medical problem that was not being treated adequately or couldn't be cured. I know I wasn't sleeping well, and I didn't remember a single dream for years. I never seemed to sleep deeply and be resotred. I was always tired. Remembering a dream is still very rare, but I sleep better most of the time.

One thing I did to get better sleep when muscle relaxers would only leave me hung over was to take benadryl at bedtime. It's the same thing that's in Tylenol PM, and I knew it made me drowsy. That seemed to help without doping me up the next day too. Does the IC cause you to wake at night?

Two books that helped save my sanity were Fibromyalgia and Chronic Myofascial Pain Syndrome by Devin Starlanyl, M.D. and Mary Ellen Copeland, M.S., M.A and The Fibromyalgia Advocate by Devin Starlanyl, M.D. They are in our library, but I wound up buying them both. I would definitely look into them both as well as anything they have published inthe last several years.

Having a doctor who is willing to suggest fibromyalgia instead of fly across the room and yell in your face because you ask about it is a small miracle from my stand point. Yes, that actually happened, and trust me, just finding someone supportive is a blessing. It's more than half the battle in my book.

[mbrogier]

I'll check out the two books, Beth. The cardiologists in the ER on Tuesday thought that my chest pain was a P.E. All the tests came back negative. I told them that I had been researching my horrible insomnia and had read about people with Fibromyalgia having extreme insomnia...most nights I couldn't get sleepy until 5am! :eek: I also felt much better when I was on Vioxx after my oofarectomy...when I went off the Vioxx, the fatique and joint pain returned. The doctor felt my pressure points to see if I had the Fibromyalgia triggers--I did. The doctors were actually relieved to have a possible diagnosis for me. (although they did seem a little disappointed that they didn't get to treat a 26 year old girl that had had a stroke AND a PE. ;) )

Beth, I've been through the nasty doctors with my heart issues and my IC. I just leave and find another doctor. They're the crazy ones, not me.

I thought I was the only one who didn't dream...glad I'm not alone. ;) Yes, the IC gave me 2 years of almost no sleep and constant pain...and my doctors didn't believe in pain management for IC patients.:mad:

[gabbyh]

mbrogier,

My friend Dana has a web-site...I'll post the link later...I had to e-mail her for it, as I can't find it...it may give you some more info...

~Gail

[kimszy]

I am mostly a lurker. I have fibromyalgia. It was triggered by pnuemonia when I was 26. I was on only an antidepressant (Zoloft) for years. My symptoms improved greatly when I added flexerol (a muscle relaxant) and was finally able to get a good night's sleep. It also helps to get regular exercise.

[gabbyh]

Here's Dana's web-sit:

http://www.fibrofacts.com/

Doesn't she look great!

~Gail

[mbrogier]

Thanks for the site, Gabby. She does look great. I have an appointment with a new doctor tomorrow.

[Carol SC]

I was diagnosed with Fibromyalgia approx. one year ago. Fortunately, I have a very forward thinking young MD who also happened to have just returned from a seminar on the disease just prior to seeing me. He told me that they were told patients must do three things: exercise, sleep (I take Ambien), and take Effexor XR, which is an anti-depressant. At first, I was also on quaifnsesin, but was taken off after approx. six months. I feel very fortunate as I have never had the severe pain and lack of sleep that I had at the beginning. My pain is in my legs, but I know that other people have their pain in other areas of their bodies. I may be wrong, but it is my understanding that Fibro patients do not go into REM sleep pattern, which is the deep sleep, which is the reason you are so tired. I have noticed that when I don't arrange to have seven or eight hours sleep each night, I will still a little "groggy" in the morning. Also, a friend loaned me a wonderful book on Fibro; however, I can't remember the title, but will get it from my friend.

On another note, no one needs to take abusive behavior from a physician. I have had two in-your-face confrontations with doctors in my life. I very much respect their long years of education, but that is no excuse for rude and arrogant behavior. They do not walk on water.

[mbrogier]

I was diagnosed with fibro today. I was given Wellbutrin XL, (its a class B drug, so I don't have to change when I start thinking about starting a family--it also doesn't interact with my other meds) an NSAID and a drug for flare up pain. My chest has been hurting like I have bronchitis, so the doctor wanted to get that under control. My daily pain is in my hips, lower back, neck and shoulders. The fact that I was thrown from a few horses in my time and broke my tailbone when I landed on a stump probably didn't help any. I'm also going to do Pilates with bands to exercise along with walking. Thank you for the links everyone. I'll show them to my husband...he was looking up fibro, but I don't think the sites he saw were as good as the ones y'all gave me.:D I can't wait to get a good night's sleep.

Are there any message board type support groups? I have a great one for IC, but I was wondering if there was one for Fibro, too. I've gotten some great info from the IC one...so I was thinking a message board would be a great tool.

[gabbyh]

mbrogier,

Send Dana an e-mail from her web-site...she may know of some web-boards for you...I know most of her pain was in her hips, and neck...her neck was broken at least 2 times in car accidents...

Good luck, and feel better soon!

~Gail