It isn't the "not knowing" that injures. It is leaving ourselves in a dangerous situation. Children learn to take their hand away from a flame because it hurts. If there was no hurt, you could theoretically leave your hand there and get severe burns without knowing it.

In varying degrees, the screwed-up nervous system can sometimes prevent “realistic” sensations of hot and cold. For example, I might think my (very cold) right foot is very comfortable but, in reality, I am subjecting it to so much heat I could get a burn.

I hope this clarifies what I was trying to say.

Mike

Mr.Pete, With my Rsd it really comes down to what the weather is up to here in Wisconsin. You could not live in a worse place and have RSD! The winter's here are brutul also the other season's can be the same way. I once had a test that had something to do with monitoring my sweat glands. The DR's found out at least with me that I had stopped producing sweat all the way from my arms to my feet. I can go out into the sun even when it is in the high 80's here. However I cannot stand to be touched it hurts so much So I think you can put me on your list for Cold RSD! Thanks so much for being one of the caring ones! Take Care! Breezy55 Oh one last thing it is so hard to have clothes touch my body when I am having a major flair. Or to try to even have my skin to come into contact with my sheet's at night takes forever.Night time for many of us can be the worse time to think about. Just to know if you are going to sleep or not?

First about the massage for any individual with rsd , hot or cold, we are encouraged to try to tolerate it as our disease is vascoconstrition. massage offers one option in increasing circulation and decreasing the amount of tissue loss .
I wanted to commend you for allowing an rsd patient to cancel the day of- if need be. It is essential. I have been terminated from countless pt programs in the heated pool due to the lack of understanding by these professionals.

On to cold RSD, I cannot speak to hot rsd.

I have full body cold rsd. I try to take massage. prior to rsd I would have a massage weekly. I miss it so much.

With cold rsd i burn from the inside out. Its like freezer burn. the temperature of my right leg is from 92-94 degrees, of course it should be closer to 99. my left leg has never been over 96.

I still have red skin in areas and lesions that can not be touched, the difference is with cold rsd you burn from the inside out.

On a very good day I take a massage with hot stones. this is heaven. Along with as strong of a tissue massage as I can stand , it varies by area.

The heat from the stones is the best part, it lliterally warms my bones.

After a massage, even wiht great care taken, I have a full blown flare up.
I swear, everytime, that I wll never do it again and am usually in bed 24/7 for about 4 days.
However, my neck is usally better, the tension in my shoulders, basic things that are under the rsd.So after enduring the flare there are benifits.
Hot towels on back, around feet and hands are a big plus too .

I hope that will help you understand the cold rsd- the pain is the same I belivie, its just that while a hot rsd is wearing summer clother in winter, I wear leggings, legwarmers, arm warmers etc in florida year round.
thank you for working to improve our care. Sincerely cz

I have both cold and hot RSD so I have trouble standing the summers and the winters. This summer has been good in that it hasn't been a hot one so that has helped me. If it had been hot, I would have been miserable. The winters are just as bad for me.

As far as massage, my Physical Therapist did massage on me, and like Allen, I hurt for a few days but then I saw such a difference. I have a husband and wife team that worked on me for a long time. I absolutely love them for what they did for me. It is different for everyone though and it does depend on the PTist. Some are jokes just like some Drs.

Ada