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What kind of doc to see?

Posted , 6 users are following.

onebratt08
onebratt08

I've been working with my regular family doc and have actually seen a number of specialists to rule out other diseases like Lyme, thyroid disease, autoimmune disease, a number of other diseases and doc and I both feel this is CFS. Is there a specific type of doctor/specialist that I should be seeing about CFS? It seems my doctor is somewhat knowledgeable, but obviously not an expert in CFS.

0 likes, 12 replies

12 Replies

  • wknight
    wknight onebratt08

    Posted

    You want a rheumatologist who specialises in CFS. If you are in the UK there are a few, I went to one in Poole who is very good Dr Selwyn Richards
  • Beverley_01
    Beverley_01 onebratt08

    Posted

    Hi onebratt,

    Ask to be referred to Cfs/me clinic if in UK. You'll be asked to have blood tests for a variety of conditions that need to come back negative first. Unfortunately, it seems a case of pot luck with services so, I hope you have a good experience with yours.

    Hope that helps

    Beverley

  • jackie00198
    jackie00198 onebratt08

    Posted

    See an infectious disease doctor. Second best: a rheumatologist. If by any chance you are in the U.S., I can recommend specific doctors.
    • onebratt08
      onebratt08 jackie00198

      Posted

      I am in the US. I have been to infectious disease a few times. Most recently my doc asked me to go to find out about chronic EBV and they tested me for it, but said they can do nothing to treat me for that or CFS. Doc's plan is to send me to a rheumatologist if I am negative for chronic EBV. However, I wasn't sure if a rheumatologist is the right choice. Seems like there's a large neurological component to CFS and I have many of those symptoms (chemical sensitivity, cognitive problems, autonomic dysfunction not explained by a cardiac problem).
    • Beverley_01
      Beverley_01 onebratt08

      Posted

      Hi again onebratt,

      Ah, you're in the U.S. and there does seem to be differences in how things are approached there as to in the UK. Wishing you the best of luck In your search.

      Beverley

    • wknight
      wknight onebratt08

      Posted

      it was a rheumatologist who confirmed my diagnosis for CFS. 

      I hope you have insurance. Sorry but I worked for many years with US people and was appauled at what some of the doctors did. They seemed to be more focused on making money and not getting sued than curing the patient. 

      You do need to have all the tests done to rule everything out as they won't confirm a diagnosis of CFS unless everything has been excluded. You also need to ensure that your doctor believes in CFS and many don't

    • onebratt08
      onebratt08 wknight

      Posted

      I am lucky to have good insurance and a good team of doctors (not so great doctors until about a year ago) - they have been very good at ruling out and suggesting CFS as a possible cause.
    • jackie00198
      jackie00198 onebratt08

      Posted

      I'm seeing a top ME/CFS doctor/researcher in Los Angeles. He told me, as I've heard before, that many healthy people have Epstein Barre virus in the blood and therefore its presence does not necessarily correlate with ME/CFS.That's an old theory that has been debunked. A knowledgeable infectious disease doctor or a rheumatologist are the usual specialists seen for ME/CFS. They have a broad overview of all the body systems affected by this illness. Yes, there is a large neurological component to ME/CFS, but I don't believe neurologists are typically well informed about the disease. I went to one neurologist with burning nerve pain, and he did a nerve conduction test, which was fine and appropriate. But then he said the pain was probably related to a back issue, which was totally off base.
  • GeorgiaS
    GeorgiaS onebratt08

    Posted

    I saw an ME specialist for my diagnosis. It was in Exeter and I assume there must be specialists around the country. 
  • agentdove
    agentdove onebratt08

    Posted

    I'm the UK we have CFS clinics that are within the hospital. Mine is situated within the rehabilitation department and is made up of different people such as; neurological, rumitology, psychology, and physiotherapy. Because CFS is primarily deemed to be a neurological issue, it is the staff associated with that department who offer most of the suport. Psychology steps in only when patients are struggling to coap with the psychological aspects of their illness.

    I really hope you find someone suited to you and the right care can definitely help xx

  • onebratt08
    onebratt08

    Posted

    This is sort-of on topic, because I'm wondering about seeing a neurologist as well:

    Is tremor a CFS symptom? I have a tremor in one arm that happens with activity, like holding a fork. Other arm is starting to experience it also, but to a lesser extent because it's my non-dominant arm.

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