Your Fibromyalgia Diagnosis

Donna over at Fed Up With Fatigue recently wrote about why those of us with FM shouldn’t blindly accept our diagnosis.

According to her source, 66% of us may have been misdiagnosed. So two-thirds of us could be living with diseases that could possibly be treated and maybe even cured. That is a pretty staggering statistic.

I agree with what she is saying, for those newly diagnosed and those who were diagnosed without proper testing ruling out other conditions…but, maybe not for the rest of us.

As I’ve mentioned before, I feel like there comes a time in your life, post diagnosis that a certain amount of peace is gathered through the acceptance of having FM.

The time, energy and money spent on ruling out other conditions is considerable. You think to yourself, okay…I am going to do this and I can be relatively sure that it is FM. But it seems like it is never-ending. Along comes a new Lyme test, or a new hypothyroid range, or some study on adrenals or a book that says all those tests are outdated.

And while you are dragging yourself from doctor to doctor, you start to become preoccupied with it. You spend so much energy trying to educate yourself, so much time  tracking your symptoms, so much money on co-pays. It drains you and for me, there is nothing worse for my FM than being drained.

Not to mention that little bit of hope you start to have and all the emotion that surges at the thought of a curable or treatable illness. When it comes back as FM, the disappointment wreaks its own havoc.

Every once in a while I will read something new that plants a “what-if” seed in my head. What if I really don’t have FM and it’s really some obscure neurological disorder, or chronic lyme disease, or hypothyroidism, or a response to mold and/or toxins. I don’t know if there will ever be a time when I can 100% be sure that FM is the thing that is causing my body so much distress. Until the day they stop labeling it a syndrome and start understanding it’s origin, I will always have doubts. 

I am not saying that anyone should accept their diagnosis at their first general practioner’s suggestion of FM. I didn’t. I flatly refused to even hear what they were saying. It wasn’t until ten years later when I could no longer deny it, that I finally accepted it. So if you are recently diagnosed, by all means, you should make sure that no stone is unturned. But there comes a time when you might be better off to turn off the what-ifs.

I am doing relatively well these days. *knocks on wood* I have about five mild flare days a month, and one or two serious flare days which usually involve either high stress, physically overdoing it or my monthly cycle. The other days I still have my regular stiffness and pain, but for the most part, I feel kind of normal. My anxiety is under control. I am making my 10,000 step mark every day. I still have weird symptoms and am easily overwhelmed by stimuli, but I feel more in control than I have in so long.

I don’t want to doubt my FM diagnosis anymore. Deep down, I associate that doubt with a time of madness in my life that I just can’t handle again. I read so many blogs that talk about doctor appointments, new tests and new treatments and I’m over here like, “no thank you”. Life is so much better without all that noise. And it has never amounted to anything more than just noise for me. 

Is this defeat? Absolutely, I feel defeated. I don’t have any faith left in the medical community.




11 thoughts on “Your Fibromyalgia Diagnosis

  1. I had FM for almost 20 years when it was like my life had caught up with me. Extreme panic would hardly go away. When it did, it was replaced with the pain. It was either one or the other. Such a horrible existence. I scurried for help. After about a year of medical and talk therapy, during the same week my psychiatrist and my psychologist both diagnosed me with PTSD. Still here but doing better.

    Liked by 1 person

      1. My treatment has greatly improved my panic in tangible ways. No jerking when the conversation lulls, etc. My pain level is about the same but I have learned emotional tactical interventions. My overall well being is grand! Yes, I have days when I do not function so well, but don’t we all? I am more confident, less afraid. My attitude is a soft but clear message stating this is who I am and I cannot change that right now. Accept me where and how I am, please.
        Having a psychologist was invaluable. He opened the curtain I had been hiding behind. He brought me out into the world again.

        Liked by 1 person

  2. I agree with you Rene. Sometimes searching for answers for the what-ifs just leads to a “psychosomatic” or “all in your head” diagnosis and all your efforts are regarded as futile so better to stay away. I only go to the doctor if it is high fever or a random injury or something like that.

    Liked by 1 person

  3. I agree with you Rene. Sometimes I get the “what-if” seeds in my head too but the thought of going through more doctors, more tests, more money is enough to extinguish any desires to fight my diagnosis. Besides, I have a feeling that even if it is some weird neurological disease, the treatment will not be that much different. At the moment, I am responding well to the medication I am on, so it is unlikely any other diagnosis will change anything practical for me!

    Liked by 1 person

  4. I absolutely agree with. I was exhausted after two years of doctors diagnosis! Did I wish to have a nebulous disease, no. I also get extremely overwhelmed by my peers searching for “the” answer to “the” cure. I would dearly like to be cured but in every proposed cure, I do my own research and generally find some problems inherent within them.
    Yes, if your new to the life of chronic pain you need to push onwards. There are many other reasons for pain. However, like you write, I am at peace with my diagnosis. I do not like it. I wish to see the medical and scientific community find a real answer, not just symptom suppression. In the meantime, I live my life “with” fibromyalgia as one part of my day.
    XX. Lucinda

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