A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
Discuss the article on the Forums.

Rheumatologist question

Discussion in 'General ME/CFS Discussion' started by Jessie 107, Feb 23, 2017.

  1. Jessie 107

    Jessie 107

    Messages:
    92
    Likes:
    251
    Brighton
    Hello,
    My doctor, who has told me he thinks I have me/cfs has referred me to a rheumatologist.
    My question is, what can I expect from this appointment? Will I be diagnosed? I know there isn't a lot in the way of a cure only ways in which to manage symptoms.
    I am just wondering what to expect.
    Jessie
     
  2. Kati

    Kati Patient in training

    Messages:
    5,466
    Likes:
    19,595
    Hi @Jessie 107 where are you located?

    It may be good to establish contact with a rheumy. For one they can rule out diseases they are expert at diagnosing and treating (rheumatoid arthritis, lupus, and so on) some are even knowlegeable with fibromyalgia and ME but as you know there is very little available for treatment.

    Whatever the outcome, know that things wiill change drastically in how medicine views our disease in the next few months. Our time is coming very soon.
     
  3. Jessie 107

    Jessie 107

    Messages:
    92
    Likes:
    251
    Brighton
    Hi kati
    I am in Sussex and I have a appointment in two weeks, which I have waited eighteen weeks for.
    My symptoms have definitely got worse since Christmas when I had a very stressful time with my mothers illness. Whether this has made me worse I don't know but I cannot work or do hardly very much now, some days is such a struggle to even get out of bed. I seem to feel ill almost every day now where as before I did have at least one day a week where I felt reasonable. I just hope I don't get any worse.
    Thanks for your reply
    Jessie
     
    Jan likes this.
  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,246
    Likes:
    31,970
    The main value seeing a rheumatologist is probably to make sure that you are not suffering from som other treatable musculoskeletal disorder or something like thyroid disease, which frequently masquerades as a musculoskeletal problem.

    If no other diagnosis is made then a rheumatologist may or may not make a diagnosis of CFS or ME. There is so much uncertainty about classification and cause/natural history that there is no real consensus as to how to try to provide patients with names or explanations. I personally never used the terms ME or CFS as a rheumatologist but recognised the problem and tried to explain what I knew about it as best I could. I was aware that there was no well documented effective treatment. Some my colleagues made use of referral to CBT but I never had the feeling it was bona fide so did not.
     
    Kati, Sandman00747 and Izola like this.
  5. Jessie 107

    Jessie 107

    Messages:
    92
    Likes:
    251
    Brighton
    Hello Jonathan,
    Thankyou for the reply.
    That makes sense to me, glad to know now what to expect
    Many thanks
    Jessie
     
    Izola likes this.
  6. KME

    KME

    Messages:
    91
    Likes:
    542
    Ireland
    I hope your appointment goes well and is helpful. It’s worth being aware that the level of understanding of rheumatologists differs from one rheumatologist to another. Hopefully your GP has a good understanding of ME/CFS and is sending you to a rheumatologist who they know will be helpful, or who will at least be able to outrule some other conditions that could be causing your symptoms. But it’s also possible that the rheumatologist you see may give you advice that is not appropriate, if you have ME/CFS. I say this not to scare you, but because it’s worth bearing in mind that an individual doctor’s opinion may be helpful, and it may not be. And if you happen to see a rheumatologist who is unhelpful, there is plenty of other help available. It’s not the end of the line. So if the person you see is helpful, super, but if not, you’ll be able to get help elsewhere.


    I saw two different rheumatologists. Both involved case history, a brief physical examination, and blood tests. The first I saw when (I now realise) Graded Exercise Therapy had caused bilateral joint pain throughout my body. Prior to this pain had not been part of my CFS/ME. He did not seem to be aware of Chronic Fatigue Syndrome, which was my diagnosis at the time, and, like me, was unaware that exercise/GET could make people with CFS worse. Once he had done standard rheumatology bloods to outrule other causes, he just told me to take paracetomol before exercising. A few months later I stopped GET and the joint pain ceased.


    My ME continued to gradually deteriorate, though, over the next few years and the joint pain resurfaced. It became quite a prominent feature and an ENT referred me to rheumatology to outrule the possibility that I had two things going on – ME plus an autoimmune disease. This second rheumatologist assured me that ME/CFS was a “non-entity” in the “international medical community”, insisted that I was deconditioned, had fibromyalgia, and needed to jog/swim/cycle/walk briskly daily. (I have severe ME, am housebound, and it had taken me 6 months to be well enough to go to the appointment.) When I explained that GET had made me significantly worse and that I had not recovered my previous level of functioning, that exercise had also triggered my relapse, and that the literature was now showing that exercise can make people with ME worse, she said I was “listening to dogma”. My ME specialist was appalled and thankfully wrote to my GP to ensure that they were aware that the last thing I should do was exercise.


    Since your GP suspects ME/CFS, then it may also be a good idea to line up an appointment with an ME/CFS specialist recommended by a patient organisation, e.g. the ME Association if you’re in the UK http://www.meassociation.org.uk. For me, this was the most helpful input I had, and would have been great to have as early as possible.


    It’s well worth educating yourself about ME/CFS too – this is the best way of enabling you to access helpful care and avoid care that is not going to benefit you. The ME Association’s purple booklet is great http://www.meassociation.org.uk/shop/books/mecfspvfs-an-exploration-of-the-key-clinical-issues/, as are their leaflets http://www.meassociation.org.uk/shop/management-leaflets/. There is plenty of free information online too https://www.actionforme.org.uk/living-with-me/introduction/.


    Very best of luck, and I hope you see a helpful rheumy!
     
    Last edited: Feb 24, 2017
    Woolie, OverTheHills and Rvanson like this.
  7. Jessie 107

    Jessie 107

    Messages:
    92
    Likes:
    251
    Brighton
    Hello KME,
    I read your reply with interest, thank you for your good advice. I am sorry to hear that you are housebound.
    I find it amazing that that one of the rheumatologists you saw knew so little about this illness! I have also been reading about GET not helping people at all with me/cfs.
    I know only too well if I walk too far it brings on my symptoms. Before I got ill I would walk between 10,000 and 12,000 steps every day, now I am lucky to be able to do twenty minutes,some days none at all. I rarely have a day where I feel ok. This is such a frustrating illness in many ways.
    Hopefully I will have a understanding Rheumatologist, if not, I know what to do.
    Regards
    Jessie
     
  8. Kati

    Kati Patient in training

    Messages:
    5,466
    Likes:
    19,595
    Hi @Jessie 107 sending you best wishes. Glad you are here on this forum. We will be there for you. I hope you have a compassionate and competent dr appointment.
     

See more popular forum discussions.

Share This Page