Quote:
Originally Posted by ali12
My daughter, Alison, has had RSD for three and a half years affecting her left leg, right arm and now back
At Easter she had a spread to her arm and shortly after began to faint on occasion
This became worse over the ensuing weeks to a point where she was having anything up to ten episodes a day
During these repeated episodes she injured her back and the RSD decided it had a new place to affect
Ever since then the syncope episodes have increased and are now accompanied by myoclonic spasms affecting her whole body and sometime hallucinations
She was diagnosed with syncope of friday. The neurologist does not have a full understanding of RSD and says it may be a "teenage girl" thing and will subside by the time she is 18 but that it is likely pain is the trigger
As Alison has an underlying pain condition it is difficult to belive that these will stop as long as she still has RSD
The episodes are now coming throughout the day peaking from mid afternoon through to late evening and can number anything between 20 on a good day up to 30 plus on a bad day
They can often come on without warning and during one episode the other night Alison choked on something she was eating and I had to provide emergency treatment to help her which was extremely scary
I was wondering if anyone else with RSD has syncope and if so how many attacks do you have and have you found anything that helps
Thanks
Andrea
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Hello Alison - I know this is an old post but I see you are still on here by your profile and I also sent you a friend request. I think your mother wrote this thread? Anyways this sounds just like my son and we are in dire straits for some relief and/or a cure? My son had Salmonella in August and after treating it with antibiotics it cleared up but left my son with CRPS. He started fainting a couple of months later which we thought was his way of dealing with the pain. He is now fainting up toward 40 times a day. When he faints, it last anywhere from a few seconds to a few minutes. As I am sure you know this really can screw you life up. On top of the pain now my son must deal with constantly passing out. He used to be able to go to school and just muscle through the pain and then he started losing consciousness which made school impossible. We live in Oregon and my son will be going to Randall Children's Hospital for a 3 week, in patient, RSD intensive physical therapy program on Feb. 4 2013 We are praying that it works but are doubtful has he passes out so much. My sons, Max use to be a straight A student with lots of friends and loved school but he has only managed to be able to attend for two weeks with the pain before he started passing out.
Is there anything that you and your mom found useful to minimize or get rid of the fainting (syncope) episodes? Are you still having them today all these years later? I would love to correspond with your mom if at all possible to compare you guys (you and my son) and see what are some commonalities.
Thank you Alison
Michael Mengo