My thoughts on #Fibromyalgia

I don’t want to offend anyone. Please realize that when I say that I think Fibromyalgia is a bullshit diagnosis, I’m not saying that your pain doesn’t exist.

Onward.

Before I was diagnosed with Lupus, about a year to be exact, the local rheumatologist told me I had “Fibromyalgia” and put me on Cymbalta. She didn’t bother to run any tests, or even really examine me. I listed my symptoms and that was the extent of her assessment. The Cymbalta didn’t help my pain.

It took until my toes were turning black for her to test for something else.

Being “diagnosed” with Fibromyalgia can be a very dangerous thing. As a person with multiple health issues, I know how easy it is to just assume new symptoms are caused by the diagnoses I already have. Fibromylagia puts the brakes on investigating other causes. It’s “mysteriousness” leads people to believe that everything they are dealing with is already being treated to it’s full capacity. 

My current rheumatologist doesn’t believe in Fibromyalgia as a diagnosis. When I first started seeing her, and told her about my Fibro diagnosis, I got “You don’t have fibromyalgia” in an “oh brother” sort of voice. 

I believe there to be many diseases that present “fibromyalgia-like” symptoms, therefore I feel fibromyalgia to be a symptom, and not a disease by itself.

I urge you not to let a Fibromyalgia diagnosis keep you from continuing investigating what is really wrong. You could have a very treatable illness and not know it. While my Lupus isn’t exactly “very treatable” at the moment, I’m on infusions that are protecting my organs. I can’t imagine the damage I would have now if I had just stuck with the “Fibromyalgia” diagnosis.

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10 Comments

  1. While I have multiple health conditions, the symptoms consistent with FM are the worst. Unfortunately no one wants to look at FM any further as a disease. A recent study–look up hand study FM–showed that persons with FM dx all have micro-fistula in their hand arteries and double the nerve fibers around the vascular supply. Something is really wrong but unless another dx is found the “FM only” sufferer is ignored. And when I point out new studies to my rheumatologist–who sees me for my Raynauds and UTCD, NOT FM–he just rolls his eyes and wont even look at them. The fact is that FM needs to go to neurology, not stay with rheumatology. It is not a rheumatologic condition. The people looking at FM to sort it out are NOT the rheumatologists. Almost 100% of Lupus patients also have symptoms consistent with FM, but not all, which shows that it is distinctly different.

    • It seems too that rheumatologists who ‘treat’ FM aren’t looking for other possible causes for symptoms, either. When I went to my previous rheumatologist who had diagnosed me with FM, and my toes were black, she was like “Oh crap, I guess I better test for something else”…I haven’t had much luck in the neurology department, but maybe I just haven’t found the right doctor. I have raynauds too, it’s especially bad with the cold weather right now. I can’t seem to make my own body heat anywhere, and my fingers and toes are losing feeling a lot. My rheumatologist talked about a calcium channel blocker a while back and I said I didn’t want any more meds right now because I’m on a lot as it is, but now of course I’m wondering about it.

      • I have it but have held off, calcium channel blockers are nasty and can interact with other meds. It is a vasodilator, so the blood vessels will ‘spasm’ less, but if you have low bp then you may not tolerate it even at a low dose. I live in gloves, heated ones, fingerless for typing, layered ones, gloves at bedtime. I am a tactile island…LOL…and I use a lotta warm drinks! My frustration with the Rheums is that they don’t seem to WANT to treat FM. Just throw the PIA’s on some meds to shut them up. When I was dx with UCTD my rheum yelled at me when I showed up and didn’t settle down until he saw my swollen fingers and realized I wasn’t there for FM symptoms. Ass. So frustrating, I wrote a poem about it all, pretty biting, but helped with my anger.

      • This blog may give you more insight on options…http://www.mollysfund.org/2013/09/raynauds-disease-raynauds-phenomenon-symptoms-causes-treatments-prevention/ The cold weather months are particularly challenging for those with Raynaud’s. Keep your core warm, try some heated gloves or Costco even sells big boxes of the hand warmers that are great to keep in your coat pockets! A friend of mine has started taking Viagra (as recommended by her Rheumy) for her Raynaud’s with great result as its primary function is to open small blood vessels in the extremities. Odd, I know, but it seems to be helping her.Keep me posted!

  2. This is a great blog and it is so very common for this exact thing to happen for lupus patients. They are first diagnosed with RA, fibro, or another connective tissue dissorder and the fact that lupus could exist is never investigated. We talk a lot about this in our blog on “overlap diseases” http://www.mollysfund.org/2013/04/lupus-overlap-diseases-what-are-some-common-diseases-associated-with-lupus/ I thank you for sharing your personal experiences and encouraging others to pursue further the ‘root’ of the illnesses. Keep up the great blogs!

  3. I’ve just been diagnosed with fibromyalgia. I cried. Not because I have fibromyalgia but because that’s the 3rd doctor (1st one to say fibromyalgia) that isn’t willing to dig any deeper. This one only looked at and a CBC differential and a basic ANA to diagnose. When I asked if there were more I depth tests that could be done he said no – I know there are. I did convince him to at least TRY a Lyme test but I have read how unreliable they are. I will be Dr. shopping tomorrow. It is nice to know others with this diagnosis feel the same way.

    • Thanks for reading my blog, and good for you for continuing the search. Keep trusting your gut on this one. I’ve been having bad luck in recent months with local doctors not willing to get to the bottom of things. I was seeing a local neuro for chronic migranes and he ran a bunch of useless tests and “didn’t find anything.” I went to see another neuro who is affiliated with a university hospital and he knew what my problem was after spending an hour taking my history without running any tests, turned out I had lupus involvement in my brain in the form of vasculitis, which can be pretty dangerous, and I was treated for it over the summer. I did have a test run just to make sure it was vasculitis, and he was 100% right on his first hunch. If your insurance will allow, please try to see a doctor at a university hospital. There just seems to be something about local doctors and not wanting to dig deeper. It’s been my experience for years and I drive out of town to see my doctors and even though it takes up the better part of the day and my energy, it has been worth it.

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