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 02-12-2009, 05:33 PM #1
buckwheat
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Default Time To Move On

Dear Folks,

God has moved many mountains for me.

My DX is RSD type 2, the only hope I was given by most MD's was a wheelchair.

Like Andrea, I was in a sink or swim issue. I have permanent heart damage now I just didn't want it to happen to anyone else.

Everything I said was 100% taken out of context, by a couple of you.

I have been very blessed to of had my pain levels go away, where I know longer need pain control.

I have fought a long hard road to get my life back. I am PMing a few but that's it.

I hope the one's that want their life back find their way. Shalom, Roz
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Old 02-12-2009, 05:52 PM #2
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Best of luck.

Please check in once in a while.
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Old 02-12-2009, 07:19 PM #3
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Roz,
I want to thank you for all your information, time, caring and support! My arms a pretty bad, so as usual I'll have to keep this short. I am really sorry you feel you have to leave. I, for one would love to see you hang around! You have both informed us to the best of your ability and have been supportive as well. I don't always..ok, most of the time... communicate in writing, what I feel in my heart. The more involved each of us become on this forum the more likely we will say something that someone does not understand, or feels offended by it. I can tell you that from experience. Each of us here are doing the best with what we have. That includes you. If you leave, please keep in touch and let me know how your treatment progresses.
All the best DI
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Old 02-12-2009, 07:24 PM #4
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Diana,

I am out of pain, but it took much more than antibiotics to get my life back. several other different meds. as well.

On a very serious note, the roughtest bridge I ever walked.

When the going got tough, I got tougher. Hugs, Roz
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Old 02-12-2009, 07:36 PM #5
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Quote:
Originally Posted by buckwheat View Post
Diana,

I am out of pain, but it took much more than antibiotics to get my life back. several other different meds. as well.

On a very serious note, the roughtest bridge I ever walked.

When the going got tough, I got tougher. Hugs, Roz
I'd like to know your full treatment. If you are willing to share with me. I'll pm later. I am struggling with my right arm.
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Old 02-12-2009, 07:50 PM #6
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Quote:
Originally Posted by buckwheat View Post
Diana,

I am out of pain, but it took much more than antibiotics to get my life back. several other different meds. as well.

On a very serious note, the roughtest bridge I ever walked.

When the going got tough, I got tougher. Hugs, Roz


Dear Roz,

Lyme disease is an epidemic where I live - I know quite a few people who have struggled terribly with it. One of my best friends miscarried because of Lyme and never was able to have get pregnant again.

I am really, really glad that you are finally better AND YOU HAVE A LIFE BACK!! Do you know how great that is? Enjoy every moment of it!

XOXOX Sandy
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Old 02-12-2009, 08:23 PM #7
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Quote:
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Dear Roz,

Lyme disease is an epidemic where I live - I know quite a few people who have struggled terribly with it. One of my best friends miscarried because of Lyme and never was able to have get pregnant again.

I am really, really glad that you are finally better AND YOU HAVE A LIFE BACK!! Do you know how great that is? Enjoy every moment of it!

XOXOX Sandy

Dear Sandy,

I am very thankful to my MD, she is alot like House. It was alot more than lyme going on with me. I have at least another year of treatment. Hugs, Roz
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Old 02-13-2009, 02:52 AM #8
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Roz I am truly grateful for all you have done for me, and will follow up on the information you supplied. For over 20 years I lived in the boonies with deer and deer ticks everywhere, so it is highly likely that me and the ticks had run ins and probably more than once.

I am sad to see you go, but do understand your reasoning. Just remember you will always be in my heart and prayers
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Old 02-13-2009, 06:30 AM #9
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Roz,

I am so sorry that you feel the need to have to leave the forum as you have helped so many people and provided lots of interesting articles about RSD and Lymes Disease that were really interesting and I know, I for one, learnt a lot through those articles so thank you!

I wish you could stay here at NeuroTalk and help get your message accross to many other people as I feel it is really important and I feel that it would help many people, although I do understand that you are a bit sad and frustrated about some of the messages that you have been getting via PM. Please don't think though that people don't want to get their lives back ... I think they DO but it is SO hard trying to go and see other doctors when several doctors have diagnosed you with RSD and you think that they are right!! I KNOW that I have RSD as I developed it after an ankle injury and it later spread to my right arm after I fell and sprained my arm so I wasn't bitten by any bugs!

I can't tell you how happy I am to hear that you have gotten some much-needed pain relief and that you have gotten your life back - that is totally awsome and I wish you a life time full of pain free memories!!

All the Best and thank you for everything.

Alison.
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Old 02-13-2009, 09:50 AM #10
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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
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