I have been told that I "may" have ME/CFS. My doctor seems reluctant to give a definitive diagnosis

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After two years of seeing my doctor(s) I still have not been given a diagnosis. I am forever exhausted and in constant pain in my muscles and joints. I also have a history of sleep problems. I have been put on Gabapentin for the pain and find it doesn't seem to work for me. I have also been put on Amytryprilene for my sleep problems. I cannot understand why my doctor can't give me a definitive diagnosis. Has anyone else out there experienced similar difficulties with their doctors?

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2 Replies

  • Posted

    This is not acceptable. A knowledgeable doctor should be able to give a diagnosis. An infectious disease doctor or rheumatologist with a knowledge of ME/CFS should be able to help. I got a diagnosis in about 3 months. First, I went to a GP, who did a blood panel that came back normal. Then I went to a specialist who looked at the blood panel, then asked me a bunch of questions. Within about 1/2 hour I had my diagnosis. I live in Los Angeles and the specialist was at UCLA. Many people, however, are in your situation. Sadly, it's not unusual to have difficulty getting a diagnosis.

  • Posted

    Amitriptyline use has recently been shown to be a risk factor for dementia, so it would be worth discussing that possible side-effect with your doctor. The most recent article on this was in the BMJ: "Anticholinergic drugs and risk of dementia: case-control study".

    CFS often is a questionable diagnosis, and does not lead to effective treatments, that combined with some prejudices associated with it can make doctors wary of applying it. If you think it would be useful for you to have the diagnosis, and you fulfil the criteria, your doctor should be willing to make the diagnosis though.

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