By Sharon on Thursday, May 24, 2001 - 10:43 pm:

I have just got back from seeing a rheumatologist who told me that I probably have a collegen disorder, but not which one I am guessing from symptoms HMS/EDS3> i am hypermobile in all joints except elbows and fingers, (He said I wasn't overly hypermobile, but then he never really checked it out)I know that i am infact quite hypermobile in many joints, I have huge problems with joint aches and pian, I also scar very easily (even scratches that don't bleed can leave scars) i also bruise easily and have trivial mitral valve regurgitation and increased flow across my aorta. To make things worse I am HLA B27+ and have had athritus since i was 12 and still have high rheumatoid factor. All my rheumatologist was intereded in seemed to be my Rheumatiod factor and my shoulder injury resulting in RSD, he wan'ts me to get my shoulder fixed (So do I) but I have been trying to get this done for 6 years now, so am not holding my breath. I live in Australia and am suffering from dislocation and subluxations daily and he just suggests doing exercice and proprioception exercises to help. I have been doing these things for years now all to no avail.
Could anyone please help me I am getting sick of not being listened to, ignored, fobbed off and dislcoating all the time and hurting, I have had joint pains and hypermobility joint problems since I was about 2 years old. I am 30 now and even worse. Why wont he the rheumatologist give me a diagnosis, or some help/any help would be good.
Thyanks fopr letting me vent
Sharon

By Mickey on Friday, May 25, 2001 - 04:44 am:

Hiya Sharon,

Sorry that you have been having such a horrible time with doctors, I know how you feel. I was lucky though and the first doctor I saw when I was 15years old diagnosed hms/edsIII. But he told me there was no cure, so go away and get on with it and live the life of an old lady,and never saw me again!! A good therapy for hms/eds3 is hydrotherapy. This supports the joints and the warmth helps with pain. This allows the joint supporting ligaments and muscles to strengthen so reducing pain. I hope that this helps. We are all in the same position with pain and understand the frustration that this causes. Take care
Mickey

By Judy on Tuesday, May 29, 2001 - 07:08 pm:

I totally agree with the previous advice. Go for the hydrotherapy and wear braces into the water if necessary.