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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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04-24-2009, 06:43 PM | #11 | |||
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YW Daniella! No matter what we must never give up hope. There is also hyperbaric oxygen therapy(HBOT) which has helped a lot of people too. HBOT isn't covered by insurance though unless it's for an approved condition. The money to do HBOT is usually the stopper for most people because we don't have it and most likely never will. I wish I could get it done but know I'll never have a few thousand dollars unless I win the lottery. LOL
Hugs, Karen
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Laugh until you cry, don't cry until you laugh. Living, loving and laughing with RSD for 14 years and counting. |
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04-25-2009, 06:51 AM | #12 | ||
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Magnate
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I looked into HBOT and was going to do it and may but this doc thinks it won't do much. He did suggest acupuncture though not in the areas effected and I talked to the lady yesterday so we will see. I think I will start with this iv and the new meds and go from there. Thanks again
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04-26-2009, 03:19 AM | #13 | |||
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Quote:
I get subcutanious lidocaine infusions every month here in BC Canada and they help me quite a bit, it is left in for 8-10 hours and I take it out myself at home. When I first started the infusions they did an lidocaine IV tester and hooked me up for just over an hour, the nurse asked me questions every now and then about my pain levels and any symptoms. I noticed a little bit of nausia and a headache towards the end and ear ringing so I let the nurse know. I think they may have judged my starting out subcutanious dose on that, but I am not positive (they go by weight as well). Results didn't last very long, less than a week, but enouph to know it would work well for me. Side effects only last while you are hooked up and they can be drowsiness, disorientation, slurred speech, respiratory depression, tinnitus, muscle twitching, seizures, slight nausea and/or headaches. Lidocaine is well-tolerated and is relatively safe they say. Lidocaine got me out of my bed, I was haing a very dificult time with clothes and any slight touch hurting and a breeze anywhere would raise my pain levels sky high, after my first dose I could tollerate more and more it seemed as the treatments went on.. I started in May and by summer I was able to sit and weed in my garden even when there was a slight breeze! And when I think now of what pain I was in before I started these infusions.. my life was going nowhere fast.. I saw no hope before, everything was so oversensitive, even sounds hurt me.. This works for me and I just wish we were all the same so it could work for all of us, it is not a cure, not even close.. but I can laugh again and play with my grandchild, do a chore or two if I pace myself and even walk a few blocks. I hope this can help. Sandra |
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04-26-2009, 07:35 AM | #14 | ||
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Magnate
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Thank you and I am glad you are seeing benefits. I am not expecting a miracle and any relief at this point I would be thankful. It is more I think a starting point of treatments with the scs being the last. What I did like about this pain doc who is doing this is he had a plan if this does not help or if it does but was open to what I wanted to try. Anyhow I have never read about the one you take home. He did say he has a patient who comes in monthly and some he puts on the oral. Well thank you again I like hopeful stories
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04-26-2009, 06:09 PM | #15 | |||
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The diffrence is subcutanious lidocaine infusions meaning into the tissues systemicly, they only give em to patients who have more than one area effected I was told.. because it floods the whole body, I now have full body RSD. They look for fatty tissue to place it in rather than a vein, and though they use a needle initialy they replace it with very thin tubbing soas not to be so invasive usualy..
I will try to post pictures next time I get an infusion done. Take care and good luck, Sandra Any questions just ask. |
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04-27-2009, 08:47 AM | #16 | ||
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Magnate
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I think I read about what you are talking and they showed it but I could be wrong. The one I will have though is just like an iv bag right for ex if you get fluids like when you go to the er but there is meds in it? I am sorry you have fully body. That is hard as I have now both legs and possibly eyes/ear though it may not now but something neurological/ Well many thoughts and thank you
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04-27-2009, 11:32 AM | #17 | |||
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carrie
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hope this finds all in less pain . rsd DX 99 had since 98 full body and organ involement,fibro ,pelvic pain ,etc,,,,,, please check out our website to help bring awareness to RSD! . |
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"Thanks for this!" says: | daniella (04-27-2009) |
04-27-2009, 07:28 PM | #18 | ||
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I had one hour of the lido IV infusion. I had no pain for my entire body for only 15 minutes. It was heaven. Unfortunately, pain has gradually return after the infusion stopped. Does insurance cover this treatment? I wonder whether or not i should try for longer period.
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04-27-2009, 07:29 PM | #19 | ||
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Danelia,
Did you have pudenda nerve issues? Numb |
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04-28-2009, 05:42 AM | #20 | ||
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Magnate
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I hear it is very limited amount of time of relief. I think this doctor is usuing it as more of dx of what is causing my pain more. I have peripheral neuropathy and rsd. Not what you stated but who knows anymore. So many doctors and so many opinions.
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