Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 02-13-2009, 10:07 AM #11
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Quote:
Originally Posted by jenno View Post
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!
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Old 02-13-2009, 11:48 AM #12
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Quote:
Originally Posted by jenno View Post
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
Dear all,

Thank you Jeanne for this very kind thoughtful post here. I agree with you totally about that we need to keep asking WHY? I too think that there could be a hormone connection to this. In addition to young people being diagnosed with this during puberty, the median age of the majority of those (mainly women) diagnosed is 42 another time when hormones are changing. I sure wish I had a Dr. Robert Schwartz here. I will always ASK WHY and will never accept being disabled is my fate. Each morning I wake and do daily affirmations that support the belief that I am a healthy whole person and that each day I am getting better. I am so sorry that your young daughter has to go through this and I truly hope she is able to find the right answers and relief.

Ali, I am always very touched by each supportive caring posting of yours that I read. I wish you did not have to go through this at all. You are such wonderful person and we can all learn more about compassion from you as we travel this journey together.

Roz you have been such a terrific inspiration to me and I am very very sad to see you go.

I hope this gives opportunity to better understand the need for us to be supportive and encouraging to each other.

We all have different experiences, differences of opinion and it is my hope that we can share those in a respectful way and continue to lift each other up.

Much love and peace to all.

MsL
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Old 02-13-2009, 12:58 PM #13
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Hey Roz

you are a valued member here and I hope things are now resolved so that you wont feel the need to leave. the forum benefits from your experience as well as the support you show to others. i hope you decide to stay but wish you only the best whatever you decide.
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Old 02-13-2009, 05:06 PM #14
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I am so sorry to hear that. How long have you had rsd? God be with you. I can sit here and tell you I am sorry that that has happened and sit here with tears running down my face. I don't know you very well but this should never have happened to any of us.Sometimes life is not fair, but I do give you my best wishes. Good luck with everything.

Sincerely,
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Old 02-14-2009, 12:19 PM #15
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This whole thing is horrible. Of all of the hurdles that we face, a lot of people feel that this is a safe place, even when we agree to disagree. I hate to think that you will be leaving as you bring so very much to the forum. Just consider re-considering.
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Old 02-22-2009, 12:34 PM #16
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Quote:
Originally Posted by jenno View Post
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

Hi Lordwood,

If your up for it, could you please read DR. Schwartz website. Much Love, Roz
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