Two of the rheumatologists I've seen do not believe in Fibromyalgia.

I don't think a diagnosis of fibro is nearly as important as ruling out everything else. What's the plan to determine if you have Lupus? There is a form of arthritis common in people with Crohn's, have they ruled that out?

As long as you can get help with the symptoms that bother you, don't worry about the diagnosis. I feel a fibro diagnosis can be dangerous because then everything gets blamed on fibro. Once some doctors hear fibro, they won't look for anything else. I had a friend who's chest pain was blamed on fibro, no one would listen to her. Finally, she went to a different ER and didn't tell them about the fibro. It turned out she had heart problems and had immediate surgery.

My sleep study was ordered by a pulmonologist because he thought I was too young to have high blood pressure. You can ask your rheumy, make sure you have a list of reasons why you feel you need it. My PCP wanted me to have one about 10 years ago but my insurance company turned it down and said I needed to lose 20 pounds to see if that helped before they'd pay for it.

Good Luck

If your rheumy won't do it, ask your PCP. There is a poster on the door in my PCP's office with a checklist. It says if you can answer yes to a certain amount of questions, ask about a sleep study.

Thanks so much for your responses. Dagger - what you have said about fibro is really scary! I always assume once I have an official dx that I will get the right medications and feel so much better. I often forget that with this type of disorder it's sometimes best to just treat the symptoms as they come. I have been complaining about arthritic stuff for months and I am always told it's 'normal' for people with Crohn's and not to worry about it, it doesn't damage my joints. Unfortunately it's still painful. Sometimes I'm so stiff it takes me a few minutes to get up from sitting for a long time or I'll limp because my hip/knee/foot joints hurt. Once I couldn't use my right arm to open doors for about a month. What type of arthritis is usually associated with Crohn's? As far as the Lupus diagnosis goes, I think it's gone as far as it can... My rheum wanted to start me on Vitamin D before plaquenil and Lupus meds because I was very Vit. D deficient and that could be causing some of my discomfort. Unfortunately after 2 months on the Vit. D I haven't gotten any better. I'm going to try Plaquenil in hopes that it will alleviate some of my fatigue and see what happens!

Thanks for the sleep test advice too. :)

Hi. Since I was diagnosed with fibro 3 years ago by 2 different rhuemies, I have worked with 4 physical therapist. 3 of the 4 didn't believe I had fibro (even though they believed it exists) and the fourth didn't have an opinion. I had one dr tell me she didn't think I had fibro but said that I did have it in her notes. It is very confusing and upsetting to the patient when there is such a great divide within the various parts of the medical community about fibro's reality and who has it and who does not. I do agree with Dagger saying that treating the symptoms are more important than the label (diagnosis) of fibromyalgia. I also think way too many people blame everything on the fibro and are missing out on the possibility of correcting something that is causing them a problem. If I had assumed that my shoulder pain was "just my fibro" I would be living on narcotics right now. Instead I persued it with an orthopedic surgeon and the pain that had been haunting me was GONE when I woke up after the surgery. Problem solved and no living on pain killers. BTW I asked my pcp about the sleep issue and she gave me a referral to a sleep specialist and then he ordered the sleep study. I personally think everyone with fibro should have a sleep study done since sooooo many of us have issues with it and help is available. I'm so glad that I had my study done because it lead the dr to putting me on Xyrem which has been a God-send. I sleep well and feel much better than I did before it. The sleep problem for me is also solved. We need to remain pro-active because help is available for lots of the things that bother us.  Lisa

Post Edited (geckogirl) : 9/20/2008 3:59:05 PM (GMT-6)