NeuroTalk Support Groups - Would you "fire" your physical therapist?

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Would you "fire" your physical therapist? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/183109-fire-physical-therapist.html)

Quote:

Originally Posted by loretta (Post 952965)

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.
Nanc
:hug:

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.

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."

After about 6 years of using the lidoderm patches, I develope d a systemic allergt to lidocaine in all its forms. It is a rare allergy, but possible side effect. Sorry to go off topic.

With respect, the comment in the bold, coloured text misunderstands what ice actually does to blood vessels and muscle tissue when placed on the body in a non-acute situation. People with CRPS don't have acute tissue trauma and when ice is used on the body it doesn't constrict blood vessels. It reduces pain, relaxes muscle and causes the blood vessels to relax and dilate. This is, for example, why ice massage is regularly used by physios and athletes.

I'm not prepared to get into some kind of battle of published medical authorities. *admin edit*

Everyone is welcome to (and should) do their own research and form their own views. I've said all I have to say on ice *admin edit*

I asked the question to fMichael about ice, and didn't mention the context. He gave the response. I then thanked him and explained that it had come up in a thread and he gave permission to quote him.

*admin edit* FMichael is someone who's opinion I frankly trust more than my known for a variety of reasons, not the least of which because he is a veritable fount of knowledge inregards to research on RSD/CRPS.

When you advise the forum that ice is safe and goes against the advice that many of our doctors have provided and that I personally believe could be dangerous, I don't personally feel it's too much to ask or imply if this is your personal opinion or to request further information if we as a community missed research stating otherwise.

Using Hooshmand's website is perhaps lazy on my part, but it certainly isn't the only place RSD/CRPS that advises against it.

*admin edit*

Everything people write here is always only a personal opinion unless its an attributed quote from a published source written by someone else. It can't ever be anything else so there is never any need to say that something is personal opinion.

i was very careful about the way I discussed the ice issue. I haven't suggested anyone do anything different than they are doing, I haven't suggested anyone go against medical advice, will see that if you look at my posts. I said that having extensively researched it, I believe a lot of the information that is repeated from place to place and person to person is wrong. There is a great deal of misunderstanding about what the application of ice does to the body.

*admin edit*

*admin edit*
It's a place to give and receive support, personal experiences, and comfort, as well as educational information. It would indeed be very very SAD to loose even one person. We are all dealing with a very painful, life altering disorder. We have already had way too many losses in our life. Let's not add any more to them.
loretta

Quote:

Originally Posted by Neurochic (Post 952382)

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.

This is the point of linking. You don't believe Hooshmand is creditable. Fine.

But, it is confusing to me that within the same post you give an opinion in exactly the same manner that he does--with no evidence to back up your claims.

If the research has been done, and it is an urban myth as you say, that's pretty significant information to this community.

Quote:

Originally Posted by loretta (Post 953606)

*admin edit*

If you both are referring to the joke fMichael made, it was just a humorous response to me when I asked about ice. He wasn't following the thread, and had no ulterior motive whatsoever. My apologies to him!

*admin edit* I just worry about advise that could potentially cause permanent damage to those newly diagnosed. When in doubt, it's better to be cautious IMO. "Do no harm."