[ShaggyChic_1201]

I cherish this forum because where I live, no one has heard of CRPS so I have no one to bounce these questions off.

Unlike many people I read about, I am extremely sensitive to heat. The sun's rays, even thru a window, feel like lasers. I am wondering if this means that ice would be ok for me? I know common wisdom says never use ice, but is it possible that one could be opposite?

Appreciate any thoughts

[zookester]

Originally Posted by ShaggyChic_1201

I cherish this forum because where I live, no one has heard of CRPS so I have no one to bounce these questions off.

Unlike many people I read about, I am extremely sensitive to heat. The sun's rays, even thru a window, feel like lasers. I am wondering if this means that ice would be ok for me? I know common wisdom says never use ice, but is it possible that one could be opposite?

Appreciate any thoughts

Like you I have this same issue and you explained it perfectly like a laser coming through the window. I do have issues with extreme sensitivity to even the slightest cool breeze in addition to the heat sensitivity but can't remember if they happened at the same time or if one occurred before the other. Personally I would steer clear of ice and also do your best to protect your CRPS limb from direct sunlight. It is not the heat or ice it is the response of your sympathetic nervous system that would cause more pain and frequent flares.

I'm so sorry - I know this is a tough scenario.

They do make some nice clothing now that have UV protection in them as well as clothing designed to keep you at an even temperature that might be worth a try.

[nyt2]

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.

[LovesTerriers]

Originally Posted by nyt2

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.

[nyt2]

Thanks LovesTerriers for your reply. I am so sorry to hear that ice may have spread your RSD. Mine had spread long before the use of ice. The article you site is very informative and I was aware of it. However, it was never published, at least that I could find. There is no source publication on the document and it is not listed in Pubmed.gov (the go to source for all scientist researching publications). I do not believe it was ever peer reviewed, just something he put together for us to have.

I find it interesting that in Dr. Hooshmand's GI section he recommends drinking cold aloe vera juice, to help reduce inflammation. To me that seems contradictory, can't do cold on an extremity but you can drink something cold if RSD has attacked your GI system.

I will so no more on this subject as I do not want this to become a heated debate with anyone. I am not on this forum to start fights but to look for any suggestions that might help me and share ideas that I have found helpfu.

[catra121]

I personally find that ice causes bad flares (REALLY bad ones) and increases my pain. While we were trying to figure out was wrong with me prior to the RSD diagnosis the doctors had me icing a lot despite the pain. The pain got worse and I personally believe that it caused the condition to progress faster than it would have otherwise.

But one thing I KNOW for a fact about RSD...it is different for all of us. We respond differently to different treatments and while there are many factors that most of us have in common...there is no such thing as a "textbook case" of RSD. We all offer up what advice we can based on our experiences...but in the end each person has to do what is best for them. Cold causes me pain, heat relieves the pain (at least a little). If cold does not cause you additional pain then you may be okay to use it...or maybe not...it's up to you if it's worth the risk. Every treatment carries risks with it...some more than others. If cold causes you pain...then I would NOT recommend using ice in your treatment...but if cold doesn't affect you then maybe it would be worth a try to see if it HELPS. We all need to use whatever tricks we can to help our pain.

I always recommend no ice to people because that is not only my own experience...but it tends to be the experience of most other people I have spoken to with RSD (but not all). So...not worth the risk of faster progression of the condition or spread in my opinion...but I would never put anyone down for thinking or experiencing otherwise. This is one of the craziest conditions I have ever heard of...so nothing really surprises me when it comes to RSD.

[Nanc]

See the link below regarding ice and even contrast baths with RSD/CRPS. Ice is bad for RSD/CRPS, period.

From rsdhope.org:
"Ice will also cause the blood vessels to constrict more, reducing the blood flow to the extremities, increasing the pain, causing color changes, etc. but the real damage is to the nerve's myelin sheath; basically, the protective cover for the nerve."

http://www.rsdhope.org/ice-and-crps.html

[ShaggyChic_1201]

I really appreciate the feedback. I have tried ice on the newest rsd sites and it seems to numb things (in a way that is a blessing). When I tried it on my worst areas, I had the same negative responses as other sufferers, so immediately removed it.

I really hate this disorder

[ShaggyChic_1201]

Originally Posted by zookester

Like you I have this same issue and you explained it perfectly like a laser coming through the window. I do have issues with extreme sensitivity to even the slightest cool breeze in addition to the heat sensitivity but can't remember if they happened at the same time or if one occurred before the other. Personally I would steer clear of ice and also do your best to protect your CRPS limb from direct sunlight. It is not the heat or ice it is the response of your sympathetic nervous system that would cause more pain and frequent flares.

I'm so sorry - I know this is a tough scenario.

They do make some nice clothing now that have UV protection in them as well as clothing designed to keep you at an even temperature that might be worth a try.

Thanks Zooster. Can you say more please. Does the uv protection clothing stop the pain, (a laser defense system, so to speak ) or prevent further harm?

[catra121]

Originally Posted by ShaggyChic_1201

I really appreciate the feedback. I have tried ice on the newest rsd sites and it seems to numb things (in a way that is a blessing). When I tried it on my worst areas, I had the same negative responses as other sufferers, so immediately removed it.

I really hate this disorder

Just my opinion...but given your negative response in other areas I would strongly recommend against the use of ice anywhere else. Short term numbing might feel okay at the time...but the long term results of use could be a disaster. Like I said before...my own experience after being told to ice my initial RSD site for months was that it made things worse and caused the condition to progress faster (and greatly lessened the likelihood of remission once I finally got the treatments I needed). Much better in my opinion to play it safe and work towards remission in those areas that aren't as bad vs taking the risk of potentially sabotaging your chances at remission through the use of ice now. Not trying to scare you...but that's how I view things especially in your situation where the ice DOES negatively affect you in the worst areas.