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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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02-27-2007, 03:00 PM | #1 | ||
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Member
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My pcp just diagnosed me with RSD. This comes 4 months after having surgery for bi-lateral TOS. My left is worse than the right, and my face is particularily affected. My pcp said that all that can be done for me is already being done. I am already on the medications that he uses to treat RSD.
He did tell me to talk to my surgeon about it, and let him know about his RSD diagnosis. My question is this. Should I wait until I see him again in two months, or should I phone his office and ask the receptionist to relay a message to him that this has occured? At this moment the burning is tolerable, it is as though I have a bad sunburn, particularily on my eyelids. The swelling, and the burning in my arms and neck comes and goes. It is certainly not constant. My eyeliods are the only things that are consistently burning. Any advice would be appreciated. Tracy |
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02-27-2007, 03:03 PM | #2 | |||
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Member
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CALL NOW! The biggest thing with RSD is immediate treatment. The earlier you are treated, the better chance you have of either stopping the spread, or minimalizing the symptoms. In two months, it could VERY WELL be too late to do much about it. Especially wiht the way doctors pussyfoot around the dx, and how they don't want to act quickly. Your best chance of getting this "in check" is within the first 3 months. CALL NOW.
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Hugs, LisaM ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~ Visit My Message Board - Helping Custodial Parents Collect Child Support From Deadbeats for 7 Years . ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~ right Side TOS Decompression Surgery 12/2005 RSD Exacerbated after surgery Still have TOS on left side RSD On right side, currently in hand, forearm (underside), shoulder, chest, to hollow of throat, and in left hand creeping up into left wrist |
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02-27-2007, 04:36 PM | #3 | ||
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I second what LisaM says! Call your Dr. NOW!!!
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02-27-2007, 04:43 PM | #4 | |||
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Magnate
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Have you had any blocks. You might want to call the surgeon and ask him to recomend an Anesteologist or PM Dr. to do blocks on you. If your surgeon is not familiar with RSD you need to find a Pain Management Dr. Don't wait at all to start getting treatment for it.
Ada |
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02-27-2007, 05:01 PM | #5 | |||
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Junior Member
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Go to the DR. NOW!!!! I agree go the you surgeon. It was the same for me, but my surgeon did get me in touch with the dr. who dx me and started treatment right away.
Annick |
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02-27-2007, 10:37 PM | #6 | |||
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In Remembrance
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Hi trix,
You describe the pain of a sunburn, which suggests you are still in the inflammatory stage of this disease. In my reply on Artist's thread; Applied Neurology February Edition, I talk about research that shows the use of antioxidants during the inflammatory stage significantly increases chances of complete remission; but do not help in chronic, hypoxic RSD. I urge you to begin taking antioxidants now (grape seed extract and pycnogonel are easily found at many drug stores and most health food supplement stores). I would also urge you to apply DMSO to skin that burns with sunburn (inflammatory) pain. It now comes mixed with creams that makes it less harsh to the skin, and the old garlic odor is completely gone. Antioxidants don't guarantee remission during the inflammatory stage, but I believe your chances will be significantly better if you use them...Vic
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The great end of life is not knowldege but action. T. H. Huxley When in doubt, ask: What would Jimmy Buffett do? email: : . |
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02-27-2007, 10:47 PM | #7 | ||
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Grand Magnate
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Vicc,
I went out and bought Whole Foods 100mg grape seed extract and have been taking 3 times a day as directed. Do I need a higher strength? Also taking fishoil, multi vitamin and extra strength B complex. I have noticed that my circ has been a little better on the grape seed extract. Clonidine and I did not get along so doc is trying Procardia next. Can you explain a little deeper what chronic hypoxic RSD is compared to other types? And what is DMSO? I will google. Can you get over the counter. Going to the HBOT tomorrow to discuss your treatment ideas. I will keep you posted. And I am also trying epsom salt baths and it did relieve a smidge of the burning. As always Vicc you are mighty insightful. |
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02-27-2007, 11:10 PM | #8 | |||
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Junior Member
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Vicc,
Thanks for the info! Articulate and informative as always. If I might add one clarification, though - the "stages" described can and often do overlap. I only say this because I wouldn't want people to think that specific treatments can only be effective if one is in a certain "stage". I've found that treatment with B vitamins and antioxidants to be effective even in the last year, 8 years into it! I don't expect remission, but it has definitely helped my circulation! |
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02-27-2007, 11:37 PM | #9 | ||
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Grand Magnate
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Do the itchies come with RSD. Now tonight I itch like crazy where it was burning. Crazy
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02-28-2007, 12:48 AM | #10 | ||
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Member
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Hi Shelly,
The itch that comes with RSD has been described as more diasbling than the pain at times. I itch to the bone. No amount of scratching will ease this itch "persistent pruritus" I have a rash also. Dr Hooshmand has a good article on this, he calls it neurodermatitis. epsom salts help me a little but nothing stops it. http://www.rsdrx.com/rsdpuz4.0/puz_126.htm I've also had severe spontaneous bruising. Hope |
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