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MrPete
08-20-2009, 11:02 AM
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
08-20-2009, 12:27 PM
Massage? On an RSD affected limb or part of your body? It's intolerable.

allentgamer
08-20-2009, 01:10 PM
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.

Penguin
08-20-2009, 02:32 PM
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 :wink:
Thanks again for caring and wanting to know more.

SBOWLING
08-20-2009, 03:45 PM
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.

MrPete
08-21-2009, 09:15 AM
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

MrPete
08-21-2009, 09:18 AM
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

MrPete
08-21-2009, 09:23 AM
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 :wink:
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

CRPSbe
08-21-2009, 10:40 AM
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. :)

ali12
08-21-2009, 10:49 AM
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

Smoke_666
08-21-2009, 11:42 AM
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
08-21-2009, 05:59 PM
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! :eek: 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. :D

bassman
08-24-2009, 07:54 AM
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

lostmary
08-24-2009, 11:00 AM
I have hot rsd. I can't stand any heat. I'm so depressed in the summer due to the heat. I am always red and hot and looking like I'm having a massive heart attack, and that is sitting inside in a/c. I can't wait for winter where I will feel better. I have central a/c, a window unit in the bedroom that I keep on 65 degree when I'm in there, a celing fan on high, and a tower fan on high directed at me only. I don't use blankets or anything else on my bed. My poor hubby has all the blankets and still stays cold most of the time. I feel sorry for him, but I can't live with any heat.

Smoke_666
08-24-2009, 11:32 AM
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

Might I ask though; can we be actually injured by not knowing that we are being burned/frozen?

Smoke_666
08-24-2009, 11:35 AM
I have hot rsd. I can't stand any heat. I'm so depressed in the summer due to the heat. I am always red and hot and looking like I'm having a massive heart attack, and that is sitting inside in a/c. I can't wait for winter where I will feel better. I have central a/c, a window unit in the bedroom that I keep on 65 degree when I'm in there, a celing fan on high, and a tower fan on high directed at me only. I don't use blankets or anything else on my bed. My poor hubby has all the blankets and still stays cold most of the time. I feel sorry for him, but I can't live with any heat.

I can't take any heat either. I thought it was the meds, but that isn't the case. If it's more than 65 degrees OR there is any humidity, I freak out, feels like it's 190 degrees. My lady has slight anemia, and is freezing all the time. It can be 80 degrees in here and she is wearing a blanket, complaining to me about wanting the AC on. Lotsa fun.

bobber
08-24-2009, 11:57 AM
Hey Smoke
Excluding the cold and heat application effect on rsd/crps........I do know that warnings on heating pads,not to sleep with them on,Because after a certain time period they and cold packs[20 minutes cause soft tissue , and nerve damage],,

hopeful11
08-24-2009, 03:16 PM
Smoke 666
I have been burned many times from cooking and also from changing a light bulb. I did not feel anything until the damage was done.
Mike
Having PT many times, RSD suffers are affected differently to most treatments. I cannot stand any cold or ac in the room. The cold will also send me into higher pain and spasms. Touching me is very hard for me, however, I go through treatment so that I can have family by me. With that said, I have seen other's that will have mild cooler air and treatment that helps them. My suggestion to you is to ask your clients what works to them. Most clients will be able to tell you what they can do, or take. THANK YOU for asking and trying to learn about RSD, it is a very hard disease to learn about!!

SandyRI
08-24-2009, 08:32 PM
Dear Mr. Pete,

My PT massaged the back of my head (occipital area, I believe it is called) on the 8th of 9th of July where I have RSD, and I suffered from excrutiating head pain for the following 2 1/2 weeks. It was probably the worst pain I have experienced ever in my whole life, and if I didn't like him so much I would have quit PT with him after that. I am fairly certain that he did not intend for the massage to end up having such a horrible outcome. It typically takes about 12 hours or so for my pain to emerge (I suffer a lot from delayed pain), so even though I was really dizzy and my head hurt a lot when he massaged it, the agony didn't appear until the middle of the night when I woke up and started to heave.

Since the first of 2 shoulder surgeries in May of 2007, I haven't allowed anyone to touch my shoulder. It's where my RSD started. My skin became desensitized last winter when I had to start wearing clothes. I need to put Lidoderm patches under my clothes first before I get dressed. But that's all I allow on my skin - no hands, NO MASSAGE. ever. I don't want anyone to touch me. When I wear heavy clothes it feels like I have a rock on my shoulder. What would be the point of massage?

Good luck with your patients. Remember to always ask them how they are doing.

Sandy

woody3
08-25-2009, 09:56 AM
Hi Pete

I had never heard anyone call it hot and cold RSD but I guess I have both. I can't stand the heat and humidity it causes me to feel so bad and when thunder storms are near, my hand and arm burns terrible. But when driving a AC vent blowing close to my hand sets me on fire. My first discription of how my hand burned to a Dr. was If you stick your hand into a cooler and fish around to find the last drink and your hand get so cold it burns then mutiply that by 10 was how bad the pain was. I was lucky my surgeon knew about RSD and recognized it. Also the WC case nurse new about rsd and and we saw 5 Dr. everone that wc sent me to said I had RSD so wc didn't have a problem treating it.

My hand temp. runs from 3 deg. hotter to 3 deg. colder than my other hand. I have a friend that has a thermal image camera that he uses for his busniess and he has helped me document my temp changes.

On Massages I believe that it is a big help but my therapist rarely massages my affected hand and arm. I believe that the help comes from stress relief on rare ocasions I will ask her to do a little on my hand but she has a way off working it that causes me the least amount of pain. I usually pay for it latter with a flair up but I have almost no movement in my fingers so sometimes I feel that it has to be done. Woody

bassman
08-25-2009, 11:01 AM
Might I ask though; can we be actually injured by not knowing that we are being burned/frozen?

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

Breezy55
08-25-2009, 01:39 PM
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 :eek: So I think you can put me on your list for Cold RSD! :Scratch-Head: Thanks so much for being one of the caring ones! :hug: Take Care! Breezy55 :You-Rock: 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?

CZZ74
08-30-2009, 04:00 AM
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

dreambeliever128
09-03-2009, 10:36 AM
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