info on ESR levels
info on C-RP levels
Hi Lucy, poor you - I have given a couple of links above about these tests and hope they are helpful when you discuss the results with your specialist. You certainly have been having a rough time of late. Did your current rheumatologist give your beighton score - because that seems to indicate along with the problems you describe a strong possibility of HMS and discussing ehlers danlos hypermobility with him/her I think would be a good idea.
Has the physio suggested the possibility of a course of hydrotherapy as an alternative to physio? A referral to a podiatrist for assessment? A pain management course is also helpful for coping techniques but in some parts of the country there is unfortunately a long waiting list. For some Butrans patches are helpful - let us know how you get on, there is a thread on the boards dedicated to pain and pain management.
With regard to your hands - have you received specific advice from an occupational therapist at all specialising in supports etc for hands and help with equipment that can be made available in the home.
Perhaps your rheumatologist would consider referring you to one of the specialists in HMS/HEDS - details of which can be found on the home page of the site. You mention difficulty with swallowing tablets specifically in the last six months - this must be distressing for you.
In the meantime Lucy I hope that the patches start to offer you some effective pain relief and the inflammation that you are having at the moment eases. Take care nonya
Sez, do the minutes have to be hand written or would a laptop help? You are having such troubles at work - I hope something is sorted out soon.
Lianne - you are not alone in your description of hand troubles - it sounds as though you may be experiencing subluxation rather than full dislocations. Over use pain is very common in hypermobile hands and for those with hms what may be considered a normal amount of activity in a person without hms, can cause pain for the hypermobile. Aides and assistive devices can help on a daily level to prevent overuse injury.
If anyone has any helpful exercises - that they have been given to help maintain hand strength via their physio or occupational therapist they would be most welcome. I have experimented over the years with playdo
option - rubber bands - which the physio showed me how to use - but my floppy fingers found a bit hectic .....anyway I have gone on quite long enough so will be off now. I have recently started to do a little painting in the form of watercolours and have to make sure I pace myself so taking frequent breaks is really important - i use a kitchen timer and when it goes off - stop otherwise I find my hands don't work at all. I am persevering though as I find it relaxing.
Have a good day all.