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Was diagnosed with fibromyalgia but I don’t seem to fit the criteria?
I’ve had rib pain and mild fevers along with some minor symptoms that have come and gone. On I believe a fourth rheumatologist visit she has decided it is fibromyalgia. While I would love a diagnosis and would be open to trying some of the management techniques, I seem to be already doing all of them. I eat very healthy and get lots of exercise as a college athlete. With some research the only common symptom is pain. Although it seems like people with fb have widespread pain and mine is localized. Mine also completely resolves with antibiotics. Something not present in fb and multiple things said they might actually make it worse. Looking for any guidance, while I’m willing to ‘give up’ and learn to cope with the pain I cant help but feel as though there could be something done since the antibiotics made it so much better. Should I try another rheumatologist or someone else?
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I’m not a doctor but I’ve had FMS for 40 years and I would tend to agree that you have something else. Again, just a guess but I’d pursue the possibility that you have Lyme disease. The rheumatologist should be able to diagnose this but you could also pursue it with an infectious disease specialist or another doctor who works with Lyme.
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2 ReactionsUnfortunately fibromyalgia is a blanket term doctors use for unexplained and undiagnosable pain. According to many specialists, fibromyalgia is not a disease. Some (bad) doctors think it’s all in the patient’s heads. If you are a woman, DO NOT EVER answer in the positive, when asked, if you were sexually assaulted as a child, even if you were. There are a large group of doctors who are using this excuse to deny women’s pain as being “all in their heads.” Nothing happens if men are asked because they are believed. This is all being done to deny opioid pain medication to people (women only). This also goes in your medical records, which follows you around for life, unless you get it redacted, which is difficult to do. The DEA is also involved in this thinking.
You may have to keep searching for a reputable/knowledgeable doctor. I know all of this because i had undiagnosed chronic pain in the late 90s/early 2000s I finally found a good doctor, (it took 10 years) who diagnosed me with Adhesive Arachnoiditis, which is considered a “rare” disease, even though millions of people have it. Adhesive Arachnoiditis is a progressive and very painful spinal cord disease in the cauda equina, which is usually caused by medical procedures. Because this is caused by doctors, Adhesive Arachnoiditis is ignored or denied. It is provable by an MRI but usually these are denied by insurance.
Whatever is causing your disease, might be provable by an MRI but good luck getting one. If you don’t have insurance, you might find an imaging center who will let you pay cash, which is around $300 not the $5,000 to $10,000 insurance price. I know that Miami has a few centers that will do this.
Good luck with finding out what this is.
Cynthia
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3 ReactionsI have had FB for 40 years along with CFS. The correct way to see if you have FB is by the trigger points. The pain med that I take is Tramadol and Ibuprofen, between those two I am able to function fairly normal. I have never let my FB control what I want to do, I am 74 and skied, I finally quite about 15 years ago because of the pain. But now I ride my bike and do a lot of walking, yes sometimes it hurts a lot, but I just keep going, if I stop then the FB had won and I don't want that. I also have Osteoarthritis. Good luck on finding you diagnosis.
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1 ReactionIf antibiotics make your condition better @winston137, perhaps you have a bacterial infection. Could you get a referral to an infectious disease specialist?
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2 ReactionsGosh you are just a few yrs. Younger than me and put me to shame. Of course I never learned how to ski but I use to love hiking and just walking in general. I don't know I was diagnosed with fibromyalgia yrs. Ago and could really just say that I had bad back aches but I attributed it to getting rear ended in car and left with a bulging disc. I also took tramadol for awhile and it helped for awhile until it didn't. Fast forward 20 yrs. And I was diagnosed with Ibterstutial cystitis which is painful bladder. I was again recommended to same pain clinic and lol and behold the same doctor. He read my complaints and asked me if I knew about the drug lyrica which if I remember my research is prescribed for nerve pain rather than broken bone type pain. Well it's been a couple of years and I am no longer in a y pain. You might want to check it out on line. A lot of people can't tolerate but if you are one of the lucky ones like me I actually decreased my dosage 6 mos. Ago. You don't take it on demand line tramadol but keep a certain amount in your system so no pain. If course I still can't ski (lol) but I function fine
keep pushing. I don't think antibiotics are a condition of fibromyalgia. There is something else. Try acupuncture to isolate the local pain. But if you are running a temperature, that is an indication of infection, which is triggering a response mimicking FM. The doctors are overworked and only do cursory assessments these days. Any temperature demands attention.