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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)

Would you "fire" your physical therapist?

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Unread 01-30-2013, 12:56 PM   #11
ginnie
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Welcome to Neuro Talk. Glad you for this forum. There will be people to help you, who may know more about CRPS than your PT Does. Not all therapists are created equil. No cold therapy. My son is a OPT. He Does know about RDS and CRPS, as he was required to keep taking classes throughout his career. Find a therapist who knows what this awful condition is, one that knows how to help you. If he is requiring cold therapy, he is doing wrong by you. I hope that you can find someone else. ginnie
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Unread 01-30-2013, 01:13 PM   #12
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So can you provide a link of a study showing that ice does not cause damage, please? Just because a study hasn't been done, doesn't make something an Urban Legend. Even when a study is performed, it doesn't mean it won't later be disproved.

Much of Hooshmand's advice is anecdotal, and while I understand that isn't respected by many, I have found his info to be true. Many RSD specialists scoff at their patients anecdotal evidence as well, but it's amusing to find many of us continually share the same symptoms and reactions even though our docs advise us that our opinions are not valid.

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Originally Posted by Neurochic View Post
I don't share your view about much of that particular website content I'm afraid.

I honestly don't want to offend anyone which is why I've never mentioned it before. There are some articles on the site written by other authors which may be more recent, more accurate and of better quality. The majority of it is nothing more than that particular doctor's personal opinion and unsubstantiated hypothesis. It contains virtually no references to any published studies, peer reviewed research, recognised authorities or texts to back up, justify or evidence any of the opinions and hypotheses. Too much of it is based in pseudo-science and some of it just makes no sense. It has to be treated with great caution.

The specific part you referred me to (which I have looked at in the past when researching this urban myth previously) is really worrying and seems to be where the urban myth has sprung from. It contains some bizarre statements and, again, there is no evidence at all to back up his claims.

I'm sorry. I don't want to offend people because most people who post here seem to like that website and think it has good advice and I don't want to stir things up but I can't agree and it is certainly not a source that any of the leading CRPS clinicians and researchers I've spoken to would ever look to.
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Unread 01-30-2013, 01:19 PM   #13
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The reason these recommendations are made in relation to ice is because patients who have burning neuropathic pain and try to relieve that pain with ice. They over-use the ice, cause tissue damage which can become very severe and in turn can cause tissue necrosis. This is clearly catastrophic for anyone but for someone with CRPS really is a disaster.

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.
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Unread 01-30-2013, 01:55 PM   #14
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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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Unread 01-30-2013, 08:23 PM   #15
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Quote:
Originally Posted by Neurochic View Post
The reason these recommendations are made in relation to ice is because patients who have burning neuropathic pain and try to relieve that pain with ice. They over-use the ice, cause tissue damage which can become very severe and in turn can cause tissue necrosis. This is clearly catastrophic for anyone but for someone with CRPS really is a disaster.

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.
In your opinion.
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Unread 01-31-2013, 12:36 AM   #16
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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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Unread 01-31-2013, 12:43 AM   #17
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Thank you all very much for your replies.. although we're getting a little off topic. I hope I have not caused trouble here by accidentally bringing up a tough subject!

A
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Unread 01-31-2013, 01:39 AM   #18
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Quote:
Originally Posted by aascvt View Post
Thank you all very much for your replies.. although we're getting a little off topic. I hope I have not caused trouble here by accidentally bringing up a tough subject!

A
It's not a particularly tough subject. The use of ice has never been a controversial subject until now.

I was in PT for two years, during a period pre and post surgery/s. I began exhibiting a few RSD like symptoms but did not have burning pain, during which ice was used multiple times per week. I had another surgery and started PT within a week. The burning pain and hypersensitivity were obvious during the first session. Because it was a new PT office, they assumed I had a low tolerance for pain, when actually the opposite is true. The first ten minutes of being under ice packs was essentially torture. I would sit and cry in the corner until my limb would go numb. My limb was sweating, turning red, and getting cold at various random times, but after it being iced, it didn't return to normal temperature for hours/days. It became more dysfunctional, to the point that if I went to an appointment on Monday, the therapist could still feel my Popsicle limb on Wednesday. Ruh-roh! It was communicated with my doc and he advised no ice and sent me for a consult for RSD. I hadn't had a problem with heat initially, but shortly after attempting to switch to paraffin baths, it was determined that my limb couldn't tolerate even moderate heat. 60 seconds in a paraffin bath I was not only lobster red, but it felt like my skin was on fire.

Not everybody exhibits the same symptoms at the same time. If ice doesn't feel unusual to someone, they might just be fine. But, what if the damage takes time? I sure wouldn't let anyone experiment on me with ice if I knew then what I knew now. Anecdotal evidence for sure. It took me a LONG time to trust listening to my body. I still have the same pain, but my atrophy is gone, I have normal range of motion, and while I've had areas of spread--they've all been temporary (from days to a year+).

After I finally received a tentative diagnosis, I went through a series of SGB which had varying degrees of success. I then had an RF neurotomy. It made my symptoms worse, permanently. For YEARS every new doc I met I asked about the RF and was told it couldn't have made me worse or they just wouldn't answer. Finally, I found the info on Hooshmand's website stating how dangerous they were. When I finally found a doc that agreed that they are a very bad idea, I knew he was someone that I could trust to work with.

I'm well aware that Hooshmand's website is outdated and potentially unorthodox. He did treat many RSD patients for many years though, and seemed to actually listen to his patients anecdotal evidence--something MANY docs ignore.

Cold that was less intense from frozen peas seemed to be much less traumatic on my body, then ice packs, so those wanting to experiment might try them... Personally, I feel my body responds better to Lidoderm patches and I know from years of experience they don't any negative side effects.
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Unread 01-31-2013, 01:28 PM   #19
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Quote:
Originally Posted by aascvt View Post
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.

Nanc
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Unread 01-31-2013, 03:01 PM   #20
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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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