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Acromegaly misdiagnosed as fibromyalgia

Discussion in 'Fibromyalgia' started by jop, Nov 27, 2015.

  1. jop


    New Zealand

    I'm new here, but have been lurking for years. I was "diagnosed" as having fibromyalgia some years ago, but kept fighting for an actual diagnosis because it didn't seem to match what people here described. Turns out I had Acromegaly and have since heard of another person who was also inflicted with the same fibro misdiagnosis. There will be other people who have been misdiagnosed too.

    Acromegaly is a serious and seriously under diagnosed disease, that is often very treatable, particularly if caught early. Symptoms include strange combinations of things like snoring, carpel tunnel, increasing shoe size as an adult, fatigue, joint pain and headaches. Here is some more info on diagnosis. The referencing is very robust, so it's something you could print and take to a GP if you want a test.

    It might be worth nothing that the secret doctor-only section of the Up-To-Date website says that recent studies suggest "prevalence as high as 1000 per million patients". The same person explained in the public section of Up-To-Date that it's a very rare disease diagnosed in only 3-4 people per million per year, which is very misleading. The old diagnosis rates do not give a good idea of how many people have this disease.
    PhoenixDown, Effi, merylg and 2 others like this.
  2. Kati

    Kati Patient in training

    Thx for sharing, @jop . I am sending my best wishes. I hope the treatments will be helpful.

    I worry a lot about our medical system in Canada which recommends less care, not more, to fibromyalgia patients. They seem to say that a patient who gets less care, including GP do better than a patients who gets access to more care. They also discourage going on disability and pain meds.

    Moreover, there is the lumping together of Central Sensitivity Syndrome, which encompasses many different unexplained symptoms and syndromes, and for which no further diagnostics is required, and patients get sent for CBT instead to treat the illness beliefs and problematic symptoms.

    This is so absolutely wrong.
    Last edited: Nov 27, 2015
    merylg and ScottTriGuy like this.
  3. wastwater

    wastwater Senior Member

    I'm glad you found you're better explaination.

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