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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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#1 | ||
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Member
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Someone told me that putting ice on the area of RSD is bad. I was wondering why this is.
A couple doctors said heat others said ice. Who do I believe? Also one doctors office nurse said pain medication Vicodin,Perococet, etc.. will not help the nerve pain..why do they do say these things if the doctor prescribed the medication. I'm totally confused by this who thing. Sorry for venting. I am trying to come to grips with this and it's not easy when the office staff adds insult to injury. |
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#2 | ||
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Junior Member
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Summertime i have heard the same thing, ice hurts RSD suffers just like the cold weather does. Those other meds are for pain not nerve pain. Meds for nerve pain are nerotin, lyrica. They did not work for me but has help others. Im on perocet for pain and other people i talk to cant belive it they are on oxcoine and heavy meds like that. My doctors will not give me any stronger. Its hard not to be confused but i have heard all that before very fustrating. What ever works for you, if it does tell your doctor to see if he couls change something you dont like.
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"Thanks for this!" says: | Summertime (07-14-2008) |
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#3 | |||
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Hey ther summertime,
Yes, like Fire said,ICE IS A HUGE NO NO FOR US!! Yesterday, I go to Giant Eagle (Grocery store) I wanted some of those icecream cones(The one's with nuts on them) here, I'm looking for the vanilla with the nuts, I find them wayyyyyy in the back of the freezer there and I was holding two, I wanted one more box for my daughter, as she hates nuts and wanted the one's called, Simpy dipped, or something like that? Here, my entire hands were both turning blue, purple and the pain is still going strong today. It hurts so bad, I called my doc. He was nice but assertive and told me, You know not to spend a lot of time even in those coolers up at stores!! so, he wants to see me next week to see if my hands are still like this. So, yes, again.. ICE iS BAD, none.. not no ice anywhere for RSD. Take care.~Love, Desi
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I Will Always Believe in Poems, Prayers And Promises Love, Desi . |
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#4 | |||
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Quote:
Cold rsd can't stand the cold of any kind and really hurts. Hot rsd can't stand the heat and loves cold. The few people with hot rsd have used ice and had no problems. The majority of rsd'ers have cold rsd though and anything cold hurts like a son of a gun! Ice hurts so bad because our circulation is already compromised. The blood vessels have contracted during the first injury to protect the body part we hurt. When rsd kicks in it stays that way thinking we're still hurt. Ice applied to the rsd limb further constricts the blood vessels making a bad situation worse. I'm here to disagree with the whole "pain meds don't help rsd pain" statement! If it didn't then why bother? I went without any meds at all thanks to work comp for far too long when I was dealing with them. When I was finally given pain meds it cut my pain in half. If it doesn't work then why did I get relief? Stupid doctors reading stupid things. If I didn't have my pain med I wouldn't ever move at all. With it, I can at least get up and do some things. Hope I helped. 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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#5 | |||
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All I can say is thank heavens for ice. I am one of the few out there that can't stand heat in any way. If I go outside during the summer, I have to come in and get out the ice packs, sit in front of the fans blowing the cold air from the airconditioner on me. I get so red from any heat. My arms look like they have been burnt, and my face and neck are so red, and I sweat so bad, that I have had strangers come up to me and ask if they needed to call 911. I love temps about 45 to 55. My poor family suffers so much. I would love to be able to enjoy the summer. But come fall and winter, I'm in heaven.
Hugs Mary
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There is no future, there is no past, we must make each moment last |
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#6 | ||
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Use whatever helps. Just keep looking for things. If something hurts or has no effect discontinue it at the earliest opportunity. You'll end up on lots of medication and stuff so you don't want anything that will confuse the issue.
I find ghinko biloba is one of the best things for this. But I've tried almost everything and discarded them. Keep in mind that everything keeps changing so you'll always be aiming for a moving target. One of the worst things for me is the preservative used in red meats; sidium nitrate. But sometimes it doesn't bother me for months on end. Watch out for high vitamin doses. Some will cause headaches or something. Talk to your doctor. They can do you a lot of good. Ice will put my pain out like magic but when it warms up I get all the pain I missed and twice as much besides. Warm water is great and will always relieve it in a short while unless I've used it more than about 45 minutes that day. Then it just makes it ache. I think most people just have to learn tricks for distracting themselves from the pain and find the right combination of drugs to relieve their specific symptoms. It takes time. There's a good chance of beating this thing the first couple years and effort might be well spent at that. |
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#7 | |||
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Member
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helllo..
This link below explains alot about cold and hot RSD, though they are both just diffrent ends of the wonky thermostat.. but please beware the ice will damage your nerves further no matter how good it feels at the time.. http://www.rsdrx.com/rsdpuz4.0/puz_102.htm be well, Sandel |
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#8 | |||
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This one has pretty graphic pictures of what ice exposure can look like over time, RSD skin breaks down quickly.. don't you notice the shine on your skin? thats from the skin thinning.. all kinds of changes are taking place at the molecular level... The ice is like acid on water.
http://rsdrx.com/rsdphoto.htm |
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#9 | ||
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Member
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Hi
Thanks everyone for your replies. Keep them coming. I am trying to figure out what works for me and what doesn't. There are so many questions that I have but feel stupid asking? ![]() I wish there was one easy solution to this. I have other health problems as well. Summer |
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