Quote:
Originally Posted by jenno
Hi Ali,
I agree with you that it is very sad that Roz feels that she needs to leave the forum. I believe that there is so much we can learn from her experience and that Roz's passion in reality reflects her concern for all who are suffering from this terrible illness.
If you reread past posts, you will see that Roz too had an injury that resulted in the RSD diagnosis; but what I think she is trying to point out is that a prior infection (Lyme in her case) predisposed her to developing RSD ... and if that illness is lingering in one's system, how can they ever get better.
There is an RSD doctor who would agree with her ... in that he believes that there is in fact often a chronic, sometimes hidden infection that causes and then perpetuates RSD. If you go to www.robertgschwartz.com and click on the RSD link, you will find lots of food for thought.
Ali, we can never accept that the status quo thinking about RSD is acceptable. We all must be open to thinking outside the box. I am part of this site on behalf of my 17-year-old daughter, who like you was diagnosed with RSD when she was 13. She has benefited immensely from hyperbarics ... but this infection connection, as well as other possibilities, needs to be investigated. I for one cannot accept that this a life sentence. One thing that sends up a red flag for me is how many of you young suffers developed RSD at the age of 13, as was the case with Andrea. How much research has been done into the hormone connection? Ali, please never stop asking WHY?
Best wishes, sweetheart!!
Jeanne |
Thanks Jeanne!
My Doctor is currently doing a lot of research into RSD as he is a member of the British Pain Society and I am part of a study about the really bad myoclonic spasms I am getting in my RSD limb as he says they are the worst he has ever seen in 10 years of treating RSD!! My Pain Management Doctor is also doing a lot of research into Hormones and RSD as he believes that they pay a huge impact into RSD as a lot of middle aged women and teenage girls usually develop RSD and not that many men.
Over here in the UK, we don't seem to have that many Ticks. They usually just live in the woodland and we don't have that much of that near where we live. We wont ever give up asking WHY I got RSD and both myself and my mum do a lot of research into RSD to try and inform ourselves the best we can however I honestly don't think anyone will totally know WHY they developed RSD!!! My Doctor believes my RSD started immediately after an injury as I NEVER had any problems before that and the pain and swelling started immediately after the injury.
We will keep on researching though and hopefully one day, we will get some much-needed answers!
Thanks again!