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

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meowese
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 9/19/2008 4:50 PM (GMT -7)   
I initially thought I had fibromyalgia but the rheum suggested I had Lupus and that fibro didn't really exist... How can they not believe in it if there are so many people with it? How do people get diagnosed? *sigh* I don't know if I should pursue a diagnosis of this further. I have two rheumy apps scheduled so I might bring it up.

Also, what kind of doctor do I see in order to have a sleep test done?
Crohn's (diagnosed in 2006 and currently in remission), severe migraines, Seborrheic Derm., Hemolytic Uremic Syndrome (1994), chronic pain, ulcers/GERD and possibly Lupus. Medications: Nexium, Pentasa, Percocet and Vicodin as needed, Flintstone Vitamins (my favorite part!), calcium and magnesium supplements, vitamin D once weekly. I follow a low fiber, low residue diet.

Post Edited (meowese) : 9/19/2008 5:53:20 PM (GMT-6)


Dagger
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Date Joined Apr 2008
Total Posts : 1522
   Posted 9/19/2008 5:37 PM (GMT -7)   
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.

Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 9/19/2008 8:00 PM (GMT -7)   
Blood test will show lupus, but im so angry that they dont beleive.  The first rheumy didnt beleive me and i was devestated I then managed to get a pain specialist who specialised in rheumy, strange.  but he beleived.  I have also had two docs say doesnt exist and left in tears, yet I have had two physios say it does exist, go figure,  its pot luck but it makes me so angry that we have to fight to be beleived and to get treatment.  sue2z

Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


meowese
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 9/19/2008 8:21 PM (GMT -7)   
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. :)
Crohn's (diagnosed in 2006 and currently in remission), severe migraines, Seborrheic Derm., Hemolytic Uremic Syndrome (1994), chronic pain, ulcers/GERD and possibly Lupus. Medications: Nexium, Pentasa, Percocet and Vicodin as needed, Flintstone Vitamins (my favorite part!), calcium and magnesium supplements, vitamin D once weekly. I follow a low fiber, low residue diet.


tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 9/20/2008 3:40 AM (GMT -7)   
I saw a pdoc, psychiatrist cause I'm bipolar in addition to Fibro and hypothyroid along with a list of other over 50 ailments. Anyway, this pdoc seemed to scoff at the mention of Fibro and seriously questioned the meds prescribed by my family Doc. to manage my pain. He indicated it was psychic pain I was feeling and I was using Fibro meds to numb the psychic pain. There might be an element of truth to that, sometimes I just want to "drop out" for awhile, cause life is difficult and made so much more difficult when in pain, but I challange any Doc who scoffs at pain to walk around in my body for a week.

solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 9/20/2008 2:56 PM (GMT -7)   
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)

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