I saw my lovely Rheumatologist yesterday. He would like to review several blood tests as one (in terms of muscle function) was slightly abnormal. The priority, however, is neck function and the instability in my neck which is resulting in such (at times) severe POTS symptoms. I need to obtain some cervical x-rays of particular points which he will request from my GP (to arrange). Until we know more from the x-rays or for ruling other problems out, H has suggested I wear my neck collar subtantially more to give the area support, and he wants me wearing it 12-16 out of 24 hours - so quite a lot! This is going to be quite a challenge from me to explain given that I am Bowen Therapist and work in a health environment. The other challenge which I experienced the last time I was wearing the collar for any length of time was that other therapists -e.g. osteopaths thought that I was just making my neck weaker, but actually we need to turn this concept on it's head (so to speak, no pun intended). Wearing the collar is allowing the muscles to rest and regenerate and when I am not wearing it I can do my physio specific exercises to keep working on the muscles. In addition I already noticed that when I walked (with the collar on today) my head posture was obviously better and I could track my eyes better. When the collar was removed I had a better idea proprioceptively of where my head was and should be, as it is presently too far extended and rotated. It will be interesting to see how things go with my neck and whether this in fact speeds progress up. However, anything is better than these continuing symptoms.
In addition, further blood tests will be done also to look at white cell counts which are often raised in me and when I present in A&E they always think I have UTI because there is always indication of infection. H also wants my bladder investigated and then to have the Tilt Table tests for POTS. Finally, a diagnosis may be made of Fibromyalgia, but it will be a last resort - although I am aware many of my symptoms fit. In the end, it is how these are managed that is crucial and there is some possibility of trying some new medications for this also.
It was a very good and positive appointment and it will be interesting to see how the neck goes with all the increased collar use - oh, and obtaining a proper foam memory support pillow, and the results of ongoing tests.
Later after a very full-on physio session I went for a short jog and then swimming. Considering how fatigued I was two days ago, I have done well. Had a very good sleep last night and think I will be on for another good one tonight!
He is also interested in looking at other blood tests to see why my white cell counts might be raised.
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