Tuesday, June 19, 2012

Fibromyalgia Overdiagnosis

Many of the patients I know, myself included, went through living hell to get a diagnosis. First there was the round of new doctors who didn't believe I needed anything more than an antidepressant and a hobby. Then once I found one who didn't think I was a crackpot there was the year or so, while my delicate grasp on life was slipping through my numb and wobbly fingers as I rapidly lost the ability to function, of testing to rule out every other illness that could cause my symptoms. Finally came that cold reluctant diagnosis of exclusion. Which basically meant, "We don't know what is wrong with you, and your symptoms fit the profile, so you have Fibromyalgia. But there is no treatment or cure, and we really don't know much about it, so you girl who is falling head first into the swirling abyss of hades, just go figure out how to live with it." That was 2006.

I am glad things have changed. A year later Lyrica was granted FDA approval for the treatment of Fibromyalgia. The community rejoiced. Finally someone in the modern American medical system acknowledged it was a real illness and offered some relief. But not all patients responded to Lyrica, or the side-effects were worse than the disease itself. Then along came Cymbalta and a few years after that Savella. I have taken two of those and lets just say I ain't no more, and I am not alone in discovering the side-effects were not worth the benefit. It is now five years after the introduction of clinically approved pharmaceuticals to the Fibromyalgia community and the jury is still overwhelmingly out. Some patients get relief, others don't. Ultimately, as much as those medications have helped many patients, they have also compounded the confusion as to what Fibromyalgia actually is. Modern medicine is still unable to offer a standard of care to successfully treat all patients. 

So what happened? The American College of Rheumatology changed their diagnostic criteria. There has never been a blood test or scan to prove Fibromyalgia. Doctors relied on the tender point test, with other symptoms including fatigue and confusion, to conclusively rule some pretty disabling problems as Fibromyalgia. Not anymore. It is purely based on symptoms now. I recognize the need for a, simply put, more humane way to diagnose this illness. I am not the only person who went to hell and back to get an answer as to why I was living in level 10 pain at all times. But I fear things are going in the wrong direction. A controversial illness doctors don't know much about anyway, and startling numbers still dismiss as invalid, the last thing this illness needs is an increase in the "wastebasket" diagnosis reputation we are all working so hard to change. So I sit on the top of the fence not sure which side to jump to. Yes people suffering and in pain need better access to a diagnosis so they can begin to learn how to manage this horrible illness. But a diagnosis of Fibromyalgia cannot become a sloppy way for doctors to skirt their due diligence, either. A place to just shovel patients they don't know what is wrong with or what to do with. So stay tuned friends. If there is one thing life has taught me so far, it is things never stay the same for long.

Thanks for joining,


  1. I have tried Lyrica and I gained about 80 pounds on it so I don't take it anymore. I did try Cembalta and Savella, but they didn't really help so i am not taking them anymore. I am glad that they are coming out with stuff for us, but I am weary of new medicines, one because they cost so much and two, not much has helped me.


  2. I have not tried any of the three "new" meds you have mentioned, nor will I. the "old" meds were destructive enough. For me I have turned around my condition to the point where I am (mostly) in control of it instead of it being in control of me through the use of Glyconutrients. I've been prescription free (all but for my BP) since 1999.

    As for diagnosing -- fibro seems to be the "disease" that is being given out too easily, thus doing just what you said, making the disease being even more unbelievable as real. It is tough to have to go through all the tests to rule out everything, etc., but to just throw out a diagnosis without doing much but listen to symptoms seems an easy way out for the medical professionals.

  3. I am really struggling at the moment Leah I have the double dose diagnosis of Fibromyalgia and Myalgic Encephalomyelitis (ME). I have been tried on all the meds in the world (it seems) Gabapentin and Lyrica sent me loopy and the others don't do anything to help so my Doctor has given up on me and I have sunk into denial. Have you ever been in the place where you are spending more and more time researching obscure diseases on the net hoping one of them will fit your symptoms and actually be a "proper" condition with a treatment and medical acknowledgement?

  4. I have tried Lyrica (gained 50 pounds and took it back off thankyouverymuch) and Cymbalta (never did a thing for me). I refuse to try Savella. As much as I am relieved the FDA acknowledges we exist, they haven't hit the mark yet with FDA approved drugs for FM that don't have worse side effects than the illness, like you mention.

    Scattychick, have you tried Tramadol (Ultram)? Some people find relief, some do not. It's a real hit or miss but I haven't found it to be a real weight gaining drug. Same with nabutome (which is an anti-inflammatory, same as an ibuprofen but not as harsh on your stomach); it has virtually no side effects at all.

    The other things that tend to help are klonipin (which will make you loopy but if you only taken it when you can't function due to pain, you won't care anyway ;) or Flexiril (however that sucker has some weight gaining issues if you take it regularly).

    I also know Remeron and other types of anti-depressants in the same family help a TON with pain - but again, many people gain large amounts of weight (I gained 30 from Remeron and took it back off, thankyouverymuch).

  5. Hi Darla, Yes Tramadol is great it really helps with my pain and my previous GP prescribed it and I only took it on bad days to help me cope. Unfortunately we moved (hubby is in the UK Army) and my current GP decided Tramadol was too strong and he is only willing to try my on mood altering drugs, anti depressants etc which don't help me. When I mentioned tramadol being helpful he accused me of being a drug seeker :(
    We move again in July so I am hoping the next GP will be more helpful

  6. Tramadol is TOO STRONG??!?!?? WHAT THE H E double toothpicks. I will be praying you find a doctor who is willing to give you a simple Tramadol. Oh my word. Most of the time that drug is considered a JOKE by people who have FM (cuz it is not near strong enough for the pain we endure). That just makes me ANGRY for you.

  7. people like me are the ones who give fybromyalgia a bad name.
    I have none of the 'other symptoms' but had tender points , following a walking holiday in Cornwall!
    I was actually referred for my hands which rheumatologist didn't look at!
    tears led to Xrays hands and knees - arthritis
    Physiotherapist found one leg has become misaligned to compensate for arthritis. Hands - guess what arthritis and having hand therapy!
    This consultant says he still stands by his original diagnosis.
    People who know me including those in medical profession are even more cynical about the disease. I am waiting for 2nd opinion before further harm is done to genuine sufferers