[MrPete]

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

[CRPSbe]

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

[allentgamer]

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.

[MrPete]

Originally Posted by CRPSbe

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

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

[CRPSbe]

Originally Posted by 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

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.

[Smoke_666]

Originally Posted by CRPSbe

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.

Mr Pete,

I agree with CRPSbe...massage my knee and you would be the one needing painkillers...j/k...the very idea itself actually causes my knee to hurt some, and that's no joke. Bless you for trying to help folks though, you're a rare breed.

[Penguin]

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.

[MrPete]

Originally Posted by Penguin

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.

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

[Penguin]

Originally Posted by 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

Yes, lol, her hands were freezing! But as far as the "trigger" goes, I am not entirely sure what it was. They have been trying to work on my hip here lately and this not exercise was just killing me. So I think that, plus it was extremely stiff when i woke up that morning and her hands being cold, i think it was a combo of it all. But yeah, I live in El Paso right now and it's in the high 90's, yet i still get goose-bumps and what not all the time. I don't even have my A/C on full blast at all, makes me colder.

[bassman]

Mr Pete,

Thank you for trying to get a greater understanding. That is more than many in health care try to do.

Like Ali, I have both HOT and COLD. My original RSD area (left foot) feels like it is burning. It gives off heat that others can feel and shows a nice bloom on thermography. It will swell and get red-purple-almost black like from blood pooling. The other foot has developed COLD type, where I feel like I am standing barefoot in the snow. Others can also feel the cold when they touch it.

Yes, Smoke and Marleen are saying "hands off" because there are times that any contact at all can be excruciating, but I know you are probably seeing people with "mild" cases, who are asking for your service. That being said, I think you should know that anything very cold will hurt, even with us that have the HOT type. It seems attractive, but because our nerves are screwed up, we can't always tell when it has been on too long, like "normal" people. Ice can literally damage the skin. Better to use slightly cool, like a few degrees lower than room temperature. A cool bath is good, because it will not cause any damage. NEVER ICE!

On the other hand, I can't seem to apply enough heat to make my right foot feel good for more than a couple of minutes. I will go to south Florida and bury my foot in the hot beach sand to attempt to warm it up! I keep a heating pad under my desk year-round, and I will wear a chemical foot warmer in my shoe even in warm weather. In that type of case, you could use warm compresses, but never a real hot pad directly on the RSD site. Again, we lack the proper nerve response to know when it might be causing a burn.

MODERATION!

Thanks for trying to help to get a better understanding.

Mike