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 03-27-2009, 04:11 PM #1
Jennelle Jennelle is offline
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Default hypersensitivity

copied this from another thread for new member, Jannelle.

Quote:
Originally Posted by DDayMBB View Post
Have been DX with TOS and somewhere along the line CRPS, the cold make my hands burn so, that even during mid summer have to wear gloves in the frozen food section. The other day was out for a walk in the woods, when I got done with my walk, I removed gloves (they were not insulated,but fairly warm any way) and as usual my fingers were one fire, thoough I was left with bue/purple blanching almost like a bruise. Was wondering if anybody elses' fingers look like this, fro the cold???
I have had hypersensitivity issues also! I find it can come and go, I have a desensitization program and find that it helps some. It progresses from light touch to stronger touch. I use a hand massager at home and rub my hand as tolerated on different textures. I stared with just rubbing it on my jeans and a towel. It helps with some of the hypersensitivity and nerve pain. I haven't found anything to help with the deep nerve pain (that makes it feel like my bones hurt) if anyone has tips about that I would appreciate it. Also does anyone else have issues with limbs falling asleep at night? thanks!

Last edited by Jomar; 03-28-2009 at 01:48 AM. Reason: made new thread
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Dew58 (03-28-2009)

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Old 03-28-2009, 06:12 PM #2
dennyfan dennyfan is offline
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Jannelle,
I have a terrible time with my arms falling asleep at night. It will wake me up as often as the pain alone will. I dont know what to tell you to help with it just know you are not alone with it. For hypersensitivity mine is mostly on the top & I use a cream my pharmacist came up with for me. It doesnt work as deep as it sounds like you need. I put its name in another post. It works so well for that & the burning. I did find if I sleep with my worst arm on an extra pillow in bed it helps but only until I roll over & change positions. I am not good about staying in one position all night. Take care.
Hugs, Denny
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Jennelle (03-31-2009)
Old 03-31-2009, 03:26 AM #3
Jennelle Jennelle is offline
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Heart thanks denny!!!!

Thanks so much about the reply on your arms falling asleep at night too!!!! This forum (and computers) are so new to me I don't know if I am doing it all in the right way! I try and sleep on my back only now-so hard! What is the name of the cream, I would like to try it! I can't thank you enough... I have felt so alone lately, even my family doesn't seem to want to understand my condition and I'm a nurse-you think I would know more. I do pediatrics though and never heard of this problem before. Quick question, when I log in to the first nerotalk page how do I find the right search for rsd thread/forums... I tried a search and come up empty. Should I be going to a different link in my favorites? Thanks again!!!!
Jennelle
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Old 03-31-2009, 09:51 AM #4
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Default Hi Jenelle,

I wanted to say about your arms falling asleep. Mine did that too. I also have TOS so I chalked it up to that. I spent almost 4 years in PT though and they stretched my fingers and arms and massaged them and I no longer have that problem.

I have the deep nerve pain too. I can't squeeze my body anywhere without making myself hurt. I don't know if we can get rid of that part. I haven't.

I am doing great with my RSD though. I have been off my meds for months so I do know that it can be done. It does take time though to get to a better place with the RSD.

Ada
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Old 04-06-2009, 04:30 PM #5
Jennelle Jennelle is offline
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Default You are all wonderful!!!

Thank you for the warm welcome!!!! I have a question for you what is TOS?
Jennelle
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Old 04-06-2009, 06:16 PM #6
SBOWLING SBOWLING is offline
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Quote:
Originally Posted by dreambeliever128 View Post
I wanted to say about your arms falling asleep. Mine did that too. I also have TOS so I chalked it up to that. I spent almost 4 years in PT though and they stretched my fingers and arms and massaged them and I no longer have that problem.

I have the deep nerve pain too. I can't squeeze my body anywhere without making myself hurt. I don't know if we can get rid of that part. I haven't.

I am doing great with my RSD though. I have been off my meds for months so I do know that it can be done. It does take time though to get to a better place with the RSD.

Ada
Hello deambeliever,

I thinks it's great you are off all your meds. My goal has always been to try and manage my RSD with as little medication as possible. I left my job 3 years ago and so far the only medication I have been able to stop is cymbalta. Where is your RSD and how long has it taken to get where you are now?
Take care
Sherrie
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