I am a Licensed Massage Therapist in Washington State and originally posted to get some insight from several of you about how Massage seemed to affect you. My hope is to have better knowledge to help my patients with RSD.

In the answers I found 1 person that said "there are 2 types of RSD Hot and Cold. I haven't found any other writing about this so would like to hear more of your comments. The person said warm was good for someone with cold RSD and Cold was good for someone with Hot RSD.

This seems to be a clearly somthing that could explain the huge variety of comments I've recieved about massage. Maybe good for 1 type and not for the other.

MrPete

Massage? On an RSD affected limb or part of your body? It's intolerable.

I was just talking with my PT guy yesterday about this very subject. I have CRPS type II, which means they know how I got CRPS, and which nerves are damaged, and my nerves like it warm.

Right now it is summer time, so it isnt to bad for me. But soon as winter hits I will be miserable the entire time. I am always looking for ways to keep my right leg warm that isnt bulky, or I dont need an extension cord. Something that I can take with me and use on the go, very easy to pack, or wont take up much space. There isnt a lot out there thats for sure.

If you have any clients that have this kind of CRPS, then you never want to put cold hands, or cold products directly on the effected body part as this would cause pain for sometimes days after the initial contact. And I would assume that it would be the same for the other type of CRPS as well.

When it comes to direct contact like massage, just a breeze hurts pretty bad, so you could just imagine how bad someone rubbing direcly on ones skin would feel like. Personally I let my PT guy do the massage, even though it hurts for 3 days after the massage, it also causes it to be less sensitive. So when my grandkids jump on me, or my wife touches me, or I bump into something, it does not affect me as bad as it would otherwise.

Believe me this is not for everyone because it really hurts for 3 days non stop, and causes sleep problems. It feels like my nerves are actually raw underneath the skin. It is kinda weird in that it never gets any easier, it is always just as raw feeling every single time!

If it wasnt for the fact that I have 9 grand kids, and love to let them crawl all over me, rough house with them a little bit, and have that extra flexability. I wouldnt let my PT guy touch me at all because of how much it hurts.

Hi Pete! it's nice to know that there are ppl out there who want to know more about what we are going through. I am extremely new to RSDS, so my pain and symptoms are not as severe as others here. Mine is affecting my entire left leg. I am one of the cold people, never..ever, touch my leg with something cold, b/c it just feels like....i don't know. Even when I get the burning pain, it feels like my leg is cold, u know, that "burning cold" pain. I just got done with PT today, she had to message the back of my leg b/c it started "cold burning" and cramping up so bad I was almost in tears. Yeah, it really hurt at first, but she started off really soft, then as I went to my "happy place" and didn't think about it (well, did my best not to) it eventually started feeling better. Then after that was done we did a few more excersices then she put a heat pack around my knee, which really felt good. The best thing I can tell you is to ask any of your patients w/ RSDS if they would prefer cold or warm massages, and then only do it softly, just listen to your patient, they'll let you know
Thanks again for caring and wanting to know more.

Mine is hot. My body temperature is always very very warm. My husband says sleeping with me is like having an oven in bed. I have full body RSD/CRPS. I use to love summer now with RSD I count the days until it is cold again. During the summer my skin is bright red without going in th sun (which I avoid). In the winter I only need a light jacket or none at all my body is already warm. I use ice when my body hurts I have large ice packs I bought from my chiropractor.

I just wanted to clarify and make sure I understand what you have said. Your RSD you think is the (HOT TYPE) and it efects you by causing hot areas that feel as if they are being burned by somthing HOT and you are treating your (HOT) areas with ICE PACKS. This gives you relief? This idea of hot an cold I believe is 2 different diseases or 2 variations and getting to understand the types and how each is treated will help all of you.

Sounds like for the first time I really got an answer about massage. My patients have me work very light and then slowly work a little harder. I believe my patients must be in earier stages than you are. They will only come when they are having a good day. Because of my understanding of their special condition I allow them to cancel the day of the massage if they are having a bad day.
Thanks
MRPETE

My first thread was about Massage and its effect. I have plenty of inforamation about massage. Now I would like to know about this idea of HOT vs Cold RSD. If you have information about weather you have HOT or COLD RSD I would greatly apreciate it.

Thanks
MRPETE

Were the PT's Hands cold? I seem to be hearing people like you with a (COLD) version seem to respond well to warm packs and warm weather and such. Let me now were the Pt's hands cold. Was that the trigger?

Thanks
MrPETE

As an RSD patient, I couldn't stand being touched in the hot stage, intermediate stage and I can't stand being touched in the cold stage that I am in now. How can you possibly think I could endure massage? No thank you.

Hi Pete,

I have cold RSD in my leg and hot RSD in my arms. My leg is ALWAYS cold and my arms are ALWAYS really sweaty and warm. I can literally just be sat here and all of a sudden, my arms will just start to pool with water and sweat will drip off them - really gross and embarrassing!!

For me, neither hot or cold is really good for my RSD; I have to have just the right temperature which is REALLY hard to manage!! If it is too hot, I go into a massive pain flare and if it's too cold, I go into a pain flare too - theres just no winning it seems !! I'm going to Spain in just over a week to visit my grandfather so i'm hoping that the heat wont get to me there which i'm sure it will unfortunately.

I've never been able to tolerate massage on my RSD limbs. My PTs once tried massaging my leg to get rid of the swelling (lymph drainage) and I was crying in pain and in a pain flare for a few weeks after that. I get really bad swelling in my arms when i'm in a major flare too so my PTs once put me under general anaesthetic to try and massage the swelling out of my arm but it didn't help and I could still feel the affects after I woke up.

I'm glad your patients have been getting some positive results from your massages. I guess like everything with RSD, everyone is different and no two people will react the same. I want to thank you for taking the time to research RSD - not many other health care professionals would do the same unfortunately!

Alison