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!
