Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 01-30-2013, 01:55 PM #1
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[QUOTE=Neurochic;952549
Ice used correctly in accordance with a normal RICE type icing protocol will not do that and will not cause damage. If you have cold limbs it may be unpleasant in which case there is clearly no point in doing it.[/QUOTE]

I disagree, I had this issue when they were using ice on shoulder and foot injuries I had. It was not used to cool a burning area or even overused, it was used in the proper RICE way. In my case, it made the RSD worsen and spread. The ice did more damage.
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Old 01-31-2013, 12:36 AM #2
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Quote:
Originally Posted by Nanc View Post
I disagree, I had this issue when they were using ice on shoulder and foot injuries I had. It was not used to cool a burning area or even overused, it was used in the proper RICE way. In my case, it made the RSD worsen and spread. The ice did more damage.
Hi Nanc..

Forgive me for inquiring on this subject. But how is it that you are sure that the proper use of ice made your RSD worsen and spread? I am new to the hypothesis (at this time I have to call it that..) that ice is an absolute no-no for CRPS. I have read Dr. Hooshmand's article and understand his theories to an extent.. however that is what they are to me at this point. I would love to see some published studies, research trials, etc that have been done to evaluate this theory.
The reason why I ask how you know what made your RSD worsen and spread is because we know the nature of this disease. It is a disease that is systemic in nature due to the location of the sympathetic nerves. It is a disease that almost always spreads and worsens over time.

I don't know what to believe about the ice theory. I am steering clear of ice for now, which is agonizing because it was profoundly helpful for my pain. But for me, the verdict is still out and I need further evidence.
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Old 01-31-2013, 01:28 PM #3
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Hi Nanc..

Forgive me for inquiring on this subject. But how is it that you are sure that the proper use of ice made your RSD worsen and spread? I am new to the hypothesis (at this time I have to call it that..) that ice is an absolute no-no for CRPS. I have read Dr. Hooshmand's article and understand his theories to an extent.. however that is what they are to me at this point. I would love to see some published studies, research trials, etc that have been done to evaluate this theory.
The reason why I ask how you know what made your RSD worsen and spread is because we know the nature of this disease. It is a disease that is systemic in nature due to the location of the sympathetic nerves. It is a disease that almost always spreads and worsens over time.

I don't know what to believe about the ice theory. I am steering clear of ice for now, which is agonizing because it was profoundly helpful for my pain. But for me, the verdict is still out and I need further evidence.
I am happy to answer your question. A brief history on me first. I developed RSD in the right side of my face in 1991. With aggressive treatment, I was in remission for several years (a big flare took me out of remission). I hurt my right hand in 2009 and went through so many drs before I got a correct diagnosis. I developed RSD in my hand and it mirrored over to my left hand. I had a bad blood draw in my left arm, they treated it with ice and RSD spread there. I had left shoulder surgery, turns out the spur removed wasn't the cause of the pain, RSD was (thanks doc). I hurt my right foot (hit it on a metal door jam) and also had planters faciitis. The foot dr injected my foot and treated both issues with my foot. Ice is a main treatment for planters faciitis and it helped clear it up but it hurt the other part of my foot. RSD set in three toes, down the side of my foot and up around my ankle. It mirrored over to my left foot. I also have it in my left leg. My right shoulder has been bothering me and I got a couple of injections in it. They said it was inflammation in the AC joint and I needed to ice after the injections. The second time I iced it, it burned on the inside and felt frozen on the outside...well, RSD has set in.

The reason that I think ice made me worse is because each issue/injury was initially treated with RICE therapy and I got immediately worse after using ice. I NEVER overused ice or left it on too long. You may be wondering why I kept using it. Well, all of these injuries happened in a short period of time and when I realized that ice was doing more harm then good, I stopped.

Anyway, all the details are too long for me to type here but I know what ice did for me and it wasn't good. I personally would recommend to never use ice if you have or suspect to have RSD/CRPS. I know that chances are that the RSD would've spread with or without the ice. I think the ice increased those chances and helped it spread quicker.

Does any of that make sense? I am tired and have a headache while typing this... Let me know if you have any further questions or need clarification in anything I said.

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Old 01-31-2013, 03:01 PM #4
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Quote:
Originally Posted by Nanc View Post
I am happy to answer your question. A brief history on me first. I developed RSD in the right side of my face in 1991. With aggressive treatment, I was in remission for several years (a big flare took me out of remission). I hurt my right hand in 2009 and went through so many drs before I got a correct diagnosis. I developed RSD in my hand and it mirrored over to my left hand. I had a bad blood draw in my left arm, they treated it with ice and RSD spread there. I had left shoulder surgery, turns out the spur removed wasn't the cause of the pain, RSD was (thanks doc). I hurt my right foot (hit it on a metal door jam) and also had planters faciitis. The foot dr injected my foot and treated both issues with my foot. Ice is a main treatment for planters faciitis and it helped clear it up but it hurt the other part of my foot. RSD set in three toes, down the side of my foot and up around my ankle. It mirrored over to my left foot. I also have it in my left leg. My right shoulder has been bothering me and I got a couple of injections in it. They said it was inflammation in the AC joint and I needed to ice after the injections. The second time I iced it, it burned on the inside and felt frozen on the outside...well, RSD has set in.

The reason that I think ice made me worse is because each issue/injury was initially treated with RICE therapy and I got immediately worse after using ice. I NEVER overused ice or left it on too long. You may be wondering why I kept using it. Well, all of these injuries happened in a short period of time and when I realized that ice was doing more harm then good, I stopped.

Anyway, all the details are too long for me to type here but I know what ice did for me and it wasn't good. I personally would recommend to never use ice if you have or suspect to have RSD/CRPS. I know that chances are that the RSD would've spread with or without the ice. I think the ice increased those chances and helped it spread quicker.

Does any of that make sense? I am tired and have a headache while typing this... Let me know if you have any further questions or need clarification in anything I said.

Nanc
Nanc, I have a question- I just recently posted a new thread on 'eyes burning and tearing' I've had RSD since 1996 and now full body in all limbs. But never in my eyes. About two weeks ago I had a complete meltdown and cried for a long time. the next day my eyes were so swollen. I never used ice in all my years of of rsd and probably 200 pt treatments from frozen shoulder in both shoulers and frozen hand etc. So I didn't think of 'ice' causing spread-any way, I used crushed ice in a ziploc on my eyes to get the swelling down and I've had these horrible symptoms with my eyes now.. I have several spells of 3-5 minutes- 5-6 times a day or so of my eyes burning, stinging, like razor blades in my eyes. then the tearing starts and is uncontrollable. These spells come on randomly with no control, if I were driving- would have to pull over as these are soooo bad.
Do you or anyone have an opinion? Am going to see eye specialist to rule out anything major like detached retina.
Reading your post on ice and your spread made me remember my swollen eyes and me using ice. It just seems like more than a mere coincidence. Any opinions anyone? Thanks, loretta
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Old 01-31-2013, 04:00 PM #5
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Quote:
Originally Posted by loretta View Post
Nanc, I have a question- I just recently posted a new thread on 'eyes burning and tearing' I've had RSD since 1996 and now full body in all limbs. But never in my eyes. About two weeks ago I had a complete meltdown and cried for a long time. the next day my eyes were so swollen. I never used ice in all my years of of rsd and probably 200 pt treatments from frozen shoulder in both shoulers and frozen hand etc. So I didn't think of 'ice' causing spread-any way, I used crushed ice in a ziploc on my eyes to get the swelling down and I've had these horrible symptoms with my eyes now.. I have several spells of 3-5 minutes- 5-6 times a day or so of my eyes burning, stinging, like razor blades in my eyes. then the tearing starts and is uncontrollable. These spells come on randomly with no control, if I were driving- would have to pull over as these are soooo bad.
Do you or anyone have an opinion? Am going to see eye specialist to rule out anything major like detached retina.
Reading your post on ice and your spread made me remember my swollen eyes and me using ice. It just seems like more than a mere coincidence. Any opinions anyone? Thanks, loretta
Hey Loretta! Sorry you are having such trouble with your eyes. You know, the only issue I have had with my eyes is really just in my right eye - the RSD side of my face. My right eye will get all irritated, watery, swollen and have a lot of junk coming out of it. The day after my eye is like that, I have a flare-up in my face. I have never used ice on my face or eyes when this happens and I have to say these flares go away quicker than any other flares I have.

If I were you, I would definitely get your eyes checked out to make sure nothing else is going on with them. Make sure you tell the doctor everything about the crying then using ice afterwards, now this incredible pain. If it is nothing else, then I would think the ice might have something to do with it...I would agree with you that it does seem more that a coincidence.

Keep me posted and good luck.
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Old 01-31-2013, 04:24 PM #6
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For what it's worth, and I don't for a second seek to change anyone's opinion, the ice issue is one of many that I have researched extensively in relation to CRPS since I was diagnosed years ago. I knew it wouldn't be a view that most people here would agree with which is why I've never raised it and seriously hesitated to do so this time.
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Old 02-02-2013, 04:09 AM #7
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fMichael was kind enough to give me permission to post his (as always informative) response to my question about ice.

Quote:
"You ask if, insofar as I know, ice has any role in the treatment of RSD/CRPS.

Let's try this: *admin edit*

, NEVER. Ice brings down pain/inflammation by inducing the constriction of small blood vessels which is absolutely the last thing anyone with CRPS/RSD needs!!!

I would leave it in the freezer along with any Sudafed you might have lying around the house. Seriously, pseudoephedrine dries up the nose by constricting the small blood in the mucous membrane, but it goes on to do the same thing to the rest of the body as well.

Having said this, should anyone share with you published authority to the contrary, please let me know."

Last edited by Chemar; 02-04-2013 at 07:15 PM. Reason: adding quote tags for clarity, removing superfluous commentary
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