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 11-08-2014, 09:25 AM #4
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LovesTerriers LovesTerriers is offline
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LovesTerriers LovesTerriers is offline
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Join Date: May 2014
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Quote:
Originally Posted by nyt2 View Post
I am also heat sensitive. I get heat rashes on my legs in the shower than run along the nerves. You could do neuroanatomy on my legs. In addition, the shower heat will make my legs spasm. Warm baths will make them very fatigued. I cannot do water therapy pools because the water is too warm. Lap lane pools where the water is cold I manage. Have to be extremely careful in the sun. I am unable to wear pants and have worn skirts for almost 8 years.

I have never understood the no ice. I have never read any peer reviewed scientific literature that demonstrates CRPS patients should not use ice. There is one case report where one CRPS patient used ice for too long and got frost bite. However, that is true for any individual who has decreased sensation, ie diabetics with neuropathy. Everyone always quotes Dr. Hooshmand's website.

I understand why ice is painful for individuals with cold CRPS because heat does to me what cold does to individuals with cold CRPS. You put heat on my legs it makes them spasm and causes me severe pain. However, from peer reviewed scientific literature they have demonstrated the cold sensitive CRPS is more common than heat sensitive CRPS. I do use ice on my legs but 10-20 minutes just like one would do with an injury. I get ice massages to my legs and butt because in order for the massage therapist to work on the muscle knots he gently ices for just a minute or two after he finishes otherwise I flare badly. For me, ice keeps my legs calmed down.

I know this will cause a lot of individuals on this forum to disagree with me. I usually do not even get involved in the ice conversations because I think it is "folklore" with no scientific bases to back it up. If someone can send me peer reviewed scientific literature that demonstrates ice harms individuals with cold and/or heat sensitive CRPS either by changes in the number of pain receptors or nerve fibers in the extremity then I will rethink my position. Until then, I will use my ice.


I think that ice for very short periods of time would not be that harmful, but I myself experienced a spread of CRPS due to the use of ice. When I first had this disease, the doctors originally thought I just had tendonitis of my left knee with nerve entrapment. They had me icing my knee several times a day for several weeks. During that time, my CRPS (which was in my foot and ankle), spread all the way up my left leg. Now I have "pockets" of swelling all over my leg, especially at the ankle and below and above the knee that will not go away.

You are correct about there not being a whole lot of research studies online about ice and CRPS, but I did find one http://www.rsdrx.com/Spread%20of%20CRPS.pdf (pg. 4) that describes how ice can exacerbate the spread of this disease.

I wish you the best and hope you find relief from the pain we all here endure.
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