By Sharon on Monday, February 05, 2001 - 06:37 pm:

Hi I was just wondering if anyone else with hypermobility problems also have a diagnosis of Reflex Sympathetic Dystrophy. I was diagnosed with RSD in 1993 and again in 1995 of which I still suffer. I also think that I may have EDS III or HMS and am also HLA B27+. And was wondering if anyone else has/had a similar diagnosis. One of my main problems id that with RSD they say NO bracing of joints etc but with EDs they say brace the joints so what do I do I have been bracing at a lot of the time it seems the only way to get releif from the pain and instability of the hypermobile joints. I was under a rheumatoligist as a child because I had Juvinille Rheumatoid Athritus at about 12 years old and that is when I found out that I was HLA B27+ which was explained to me as a tissue type that made me an achey person (Yeah so what else is new). So between the RSd (A chronic pain condition of the Sympathetic Nerves), the HLA B27 (making me an achey person) and the possible EDS/HMS (which is also a chronic pain problem not to mention an annoying anatomical one), I feel like I really lucked out in the medical stakes.
So I was wondering if there was anyone else out there who has simmilar problems.
Thanx in advance
Sharon :-)

By Lin on Tuesday, February 06, 2001 - 01:59 pm:

i havent been, but someone suggested that rsd is a possibility for the symtoms i am having. I have a history of muscles weakness, tingling, and loss of reflex in my left arm, a few weeks ago i ended up in my orthopedic surgeon's office with severe electrocution like pains all through my left arm, hurt like HECK!! well, drugged up, severe pains gone, emg and mri normal, so now i have to see a specialist at the university of chicago to find out whats going on. but someone, not a doctor, mentioned to me that it sounded like it could be rsd, and with the horror stories i have heard about rsd i sure hope it isnt.... you have my sympathies! i have been diagnosed with HMS, and i have EDS III, but am waiting for an official diagnosis.
Lin

By Michelle on Saturday, April 14, 2001 - 05:42 pm:

I know exactly what you mean. I was diagnosed with HMS (EDS III) when I was fifteen, I am now 33. Two years ago I was also diagnosed as having Chondramalasia Patella (Retro Patella Arthritis), due to this I had to have surgery to remove the bone cartlidge in my right knee, then have my knee re-aligned. Consequently I was told I had RSD. Pain has become my bedfellow (when I can sleep). Its at the stage now where even taking pethadine doesn't really help. I do find however that I need to balance the amount of time that I wear both my knee braces (I wear a patella support and braces) and the time that I don't. Sometimes I get it right, others not. Its just a case of experimenting. I hope that this helps, as it can be really depressing, but to look on the bright side at least its not terminal! and hopefully you have good family and friends around, mine are invaluable.

By Lin on Monday, April 16, 2001 - 04:37 am:

I also have chondromalacia patella, and went through 11 weeks of physical therapy, and said i was much better, I would never be in such excruciating pain that i couldnt walk that ended me in the ER to be diagnosed. WRONG i just had a complete relapse, and if i bite down on the pain much longer i wont have teeth left!!! So now i am at a loss about what to do for that. I wear a knee brace almost all the time.
Lin

By Lin on Monday, April 16, 2001 - 02:05 pm:

I also have chondromalacia patella, and went through 11 weeks of physical therapy, and said i was much better, I would never be in such excruciating pain that i couldnt walk that ended me in the ER to be diagnosed. WRONG i just had a complete relapse, and if i bite down on the pain much longer i wont have teeth left!!! So now i am at a loss about what to do for that. I wear a knee brace almost all the time.
Lin

By Michelle on Monday, April 16, 2001 - 04:07 pm:

Lin, sorry to hear that you have had a relapse.Have you tried hydrotherapy? I have recently started this so can't even give you a personal opinion of how helpful it might be, but its got to be worth a shot, its easier on the joints than normal physio because of the support the water gives. If you want to chat at any time, just e-mail me at: mickeybroad@aol.com and then we can fix up instant messages if you have it ( I have ICQ and Yahoo).

By emily on Tuesday, December 02, 2003 - 10:29 am:

hiya i am 16 and i have got hms, eds 111 and rsd. RSD and HMS can go together a lot of the time because you ca injure yourself without knowing it and it can set your RSD off. the RSDUK website is http://www.rsd-crps.co.uk
http://groups.yahoo.com/group/RSD_UK
*painfree hugs* from emily xxxx

By Happy on Thursday, December 04, 2003 - 03:13 am:

I've been wondering lately about this. I know RSD is seen more often in people with HMS than in those without. But I don't know why. What you say sounds plausible, you can injure yourself more easily if you have HMS. Yes. That would be part of the problem. But I think there has to be more to it. Wouldn't there be another predisposition to RSD in the HMS people? I have no idea what, but I think there is.
*hugs also* -Happy