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 03-06-2011, 04:58 PM #1
IAM4UK IAM4UK is offline
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Default Going Crazy

I have had CRPS for about 4 or five years, but just diagnosed 6 months ago. By the time I got diagnosed it was just about all over me. Left arm, both legs, face etc. I think I have full body but nobody can tell me for sure! Like a lot of you guys I went to many, many different doctors complaining of unbearable pain and not being able to move my joints etc. Most of the time you could tell they thought I was just faking etc. It's hard to find doctors that know anything about this disease. Even the doctor that finally diagnosed me I don't think knows a tremendous amount about it. He keeps telling me to put ice then heat on it. And from what I've read that is a big time no no! I feel for everybody going through this! It has been the worst experience of my life by far and keeps getting worse. My question to you guys is, I live in Kentucky and this winter has been horrible. I know I've read other threads on here about cold weather being hard on rsd but I was wondering if anyone has the same problems I've been having. When it's cold outside, fifties or colder my joints lock up so much more! It doesn't matter what I have the temp inside. Since winter has started this year I have gotten much! Worse and has spread a lot. I was just wondering if anybody else has these type of symptoms? I can take a hot bath and get some motion back in some of the joints that have recently froze up but within five minutes they are froze back up! Thanks guys and again my best wishes are with all of you all putting up a good fight against this terrible disease.
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Old 03-06-2011, 10:29 PM #2
Lisa in Ohio Lisa in Ohio is offline
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Boy do I hear you about this winter! One thing to know is that RSD messes with your "temperature control". I am never warm enough and when I am in the car the heat is always cranked up to 85 degrees. I use a heating pad and heated throw when I am sitting and watching TV or reading and have an electric blanket and down comforter on my bed. Of course when you get cold your joints do not seem to want to work well, so you try to not move as much and then your joints don't work as well. Vicious circle. See if you can find a pain management clinic in your area, they are experts in dealing with chronic pain. Glad you dropped in for a visit, Lisa
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Old 03-07-2011, 12:09 PM #3
Jimking Jimking is offline
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RSD is really a weird disease. My wife (she has RSD) has the opposite effect. Winter she can tolerate, heat she can't. She keeps the thermostat down to 65-. She's sweats alot and just shuts the vents off. Now, like clockwork if the barometer drops that's big trouble for her. We have a gizmo full of red fluid that travels up a class tube when the barometer drops. I'll watch it fill and observe Suzy's increasing pain every single time. She places it near me so that I will know visually when things wont be so good for her. Very sad.
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edever34 (03-07-2011)
Old 03-07-2011, 01:22 PM #4
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Default Hi,

I am like Jim's wife, I can't stand the heat. I can get a little chili in the winter time and turn the heat up but boy as soon as it gets warm, I am in pain and uncomfortable. Summers drive me nuts due to the heat. It not only causes the pain, it causes the cronic fatigue so bad, my life pretty much comes to a halt.

I live in Colorado and from what I notice with people, it doesn't matter what state you are in, RSD is RSD.

I'm from Ky. so I know what the weather is like there but Colorado is seeing colder winters and hotter summers and even more humidity.

Ada

Our weather is changing right now, it's going to snow tonight and I can hardly walk due to the barometer change. It's the hardest on me.

Last edited by dreambeliever128; 03-07-2011 at 03:35 PM.
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Old 03-07-2011, 03:50 PM #5
byates byates is offline
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Default Hot or cold

Quote:
Originally Posted by IAM4UK View Post
I have had CRPS for about 4 or five years, but just diagnosed 6 months ago. By the time I got diagnosed it was just about all over me. Left arm, both legs, face etc. I think I have full body but nobody can tell me for sure! Like a lot of you guys I went to many, many different doctors complaining of unbearable pain and not being able to move my joints etc. Most of the time you could tell they thought I was just faking etc. It's hard to find doctors that know anything about this disease. Even the doctor that finally diagnosed me I don't think knows a tremendous amount about it. He keeps telling me to put ice then heat on it. And from what I've read that is a big time no no! I feel for everybody going through this! It has been the worst experience of my life by far and keeps getting worse. My question to you guys is, I live in Kentucky and this winter has been horrible. I know I've read other threads on here about cold weather being hard on rsd but I was wondering if anyone has the same problems I've been having. When it's cold outside, fifties or colder my joints lock up so much more! It doesn't matter what I have the temp inside. Since winter has started this year I have gotten much! Worse and has spread a lot. I was just wondering if anybody else has these type of symptoms? I can take a hot bath and get some motion back in some of the joints that have recently froze up but within five minutes they are froze back up! Thanks guys and again my best wishes are with all of you all putting up a good fight against this terrible disease.
I leave in Florida and we have had a rough winter(by our standards). My daugther has full body RSD and she was almost completely bed ridden over the summer. Fall came and she improved. Then winter hit. The coldest we have had in a very long time. She went right back to how she was over the summer. Any extreme temps effect her. I am scared to see what this summer has instore for her.
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