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 05-12-2010, 04:58 PM #1
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Originally Posted by gatorsmomma View Post
Asb-

Thanks for taking time to respond. My family has become less sympathetic to my CRPS I feel. My doctor had instructed me to use my arm as much as possible because he doesn't want muscle waste. I have been trying to not complain, do as much as possible etc. But with that comes "you must be better!" If they only knew that once they are gone, I am in the bed crying my eyes out because I have over done it. My husband argues the syndrome/disease issue. No one understands why nothing has fixed me, neither do I.

I was hoping by finding this site I would find answers but seeing that you are the only one to respond I am guessing everyone is pretty much in the same boat and don't have any answers.
Oh gatorsmomma... I am sorryfor your RSD.. you will get more responses soon..We're a close nit group/family here who care a bunch about eachother...RSD is a bear...You will get many good tips and advice here with us..There is no cure, I am sorry and not everyone responds to the same intervention the same either..I for one can not take any pain meds so I am cold turkey RSD for 3 years, full body/internal..beginning due to a knee operation.. Never use cold anything on the affected area..be sure to read a ton and become educated...here and the RSDSA website..Due to it's rarity we seem to lack support by the Dr.s and ins. coverage for help but we try to help eachother thru this miserible illness... It is very important you have a knowledgeable anestesia or Pain management doctor..and if caught early enough it is best for interventions to help you... AND plz. get a conselor as you really need someone to speak with..You and your family as well as friends are all going thru this together but it affects you all differently..Many phases to go thru on a daily basis..Please..try to stay positive and lean on us..ask questions..swing..kick and most of all hold hope in your heart as life is still precious just our priorities get stacked a bit different.....

Nice to have you here with us but very sad you have RSD....

hugz, Kathy
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gatorsmomma (05-13-2010), Kakimbo (05-12-2010), loretta (05-13-2010)
Old 05-12-2010, 05:38 PM #2
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Thank you Daniella and Kathy,

I truly appreciate your honesty. Today for me has been a bad day and I am sorry if messages bring anyone down.

I love my PM doctor. I have been to what I considered the best at Vanderbilt University and they did not help me like he has. He has at least provided some relief.

Yesterday we tried something new, peripheral nerve blocks. I had 3 injections near and at the elbow, into the median, ulnar and radial. My hand and forearm were numb for the most part of the day (which was nice), then about 8 pm I noticed that I had not had any spasms in my hand. I was very excited that finally something was working. I was wrong. I woke up at midnight with pain like before I even started the meds. I don't know what triggered it to be this bad again. Was it because the doctor had to touch my arm? Anyway, I should have never gotten my hopes up, I should know better by now.

I read this study done on RSD and peripheral nerve blocks and the results seemed so great on everyone. If only!
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Old 05-12-2010, 05:39 PM #3
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Link

http://www.rsds.org/2/library/articl...Kanji_2010.pdf

Link to the study on the blocks.
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Old 05-12-2010, 06:29 PM #4
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There is quite a bit of information on this website.

Anyone newly diagnosed (which I'd categorize you as) with RSD should:


1. Be proactive about treatment, but do your research first.
2. Be optimistic that remission is a possibility, but accept that there is no set timetable for when that remission will occur.
3. Seek mental health resources for you and your husband.
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