RSD and Ice (Is It Really Harmful for people with RSD?)

>From: "EMY2628" <iamvpmf@aol.com>
>Reply-To: "RSD Outreach" <RSDOutreach@groups.msn.com>
>To: "RSD Outreach" <RSDOutreach@groups.msn.com>
>Subject: Re: Weekly Discussion-RSD & Ice (Can it hurt us)
>Date: Fri, 5 May 2006 23:11:18 -0700
>
>
>
>
>
>
>
>
>
>
>
>
> New Message on RSD Outreach
>
>
>
>
>
>
>
> Weekly Discussion-RSD & Ice (Can it hurt us)
>
>
>
>
> Reply
>
>
>
>
>
> Reply to Sender
> Recommend
>
> Message 3 in Discussion
>
>
>
>
>
>
>
> From:
> EMY2628
>
>
>
>
> Robyn, Thank you so much for all this information, I know I
>can always count on you to get good info or know where to refer us for good
>info. I am very upset actually by this info, because as I have said I use
>ice constantly, and it is the only way I get any sleep at all. If I could
>not put the ice on my leg, for even one day, I would go insane from the
>pain. I also can not tolerate heat at all, not from a heating pad or direct
>sunlight, not at all. Now though, I am afraid that I may be causing harm to
>myself that I will not be able to reverse, although I know that we all
>respond and react differently to just about everything. As I said though, I
>really do not think that I would make it through a day without the ice, I
>honestly think the pain level would push me over the edge. I can't believe
>how with this topic we can be absolutely on the opposite side of the
>spectrum of reaction and yet on most of the other topics (like sleep
>disorder, etc) we (and I mean all of us here) seem to be experiencing
>almost exactly the same things! I am very interested to hear the opinion of
>all the other members on this subject, especially to see if there is anyone
>else who is in the minority like me and what they feel about this
>information you've provided. I just don't know what to do, and I am scared,
>both of the thought of having to stop the ice and of the ramifications of
>continuing it. Eileen
>
>
>
>
>
>
> View other groups in this category.
>
>
>
>
>
>
>
>
>
>
>
>
>
>Also on MSN:
>Start Chatting | Listen to Music | House & Home | Try Online Dating | Daily
>Horoscopes
>
>
>
>
>
>
>
>
>
>
> To stop getting this e-mail, or change how often it
>arrives, go to your E-mail Settings.
>
>
> Need help? If you've forgotten your password, please go
>to Passport Member Services.
>
> For other questions or feedback, go to our Contact Us
>page.
>
>
> If you do not want to receive future e-mail from this
>MSN group, or if you received this message by mistake, please click the
>"Remove" link below. On the pre-addressed e-mail message that opens, simply
>click "Send". Your e-mail address will be deleted from this group's mailing
>list.
>
>
> Remove my e-mail address from RSD Outreach.
>
>
>
>
>
>
>





Reply
Recommend Delete Message 6 of 6 in Discussion

From: <NOBR>RebaRIP</NOBR> Sent: 5/6/2006 7:40 PM
Hi everyone,
I also can not take ice, it will send me soaring, even in the beginning of my injury, I could not take it.
Last year when I broke my ankle and went to therapy after the cast was taken off the dr told me that I have RSD there, and I said oh Lord and he said what and I told him that I already have it, he ordered me to go to therapy and they tried to put ice on my ankle and I told him no, well needless to say he put it on anyway and I took it right back off, I told him before he put it on that I could not take the ice, he told me we will see, then told another patient to tell me about ice, she stated that she could use it, and I told her that is her not me, I left there that day and never went back.
I know that we all are different in ways, but for someone to tell us something that we know for sure hurts us, I will not go back. God Bless everyone. Love, Trina





Reply
Recommend Delete Message 3 of 5 in Discussion

From: Loritacush Sent: 8/12/2006 7:32 AM
Wow, this is really up setting info to me. I have had RSD for around 9yrs and thought I had control of it, with it being maintained in my left arm and after 2 1/2 yrs it looked normal as long as I did what I needed to do to keep it from stiffening and to work out the swelling. During this time I was always cold and could not stand ice or anything cold. Now within the last few months my RSD has spread dramaticlly all over my body. In fact I had recently gotten a few of the hot/cold packs and I told my friend they would never see the freezer. Little did I know in days I would be in so much pain and only ice seemed to help. Now I have about 10 ice packs in various sizes and ready to buy more. I am almost constantly icing. I go to bed with long ice packs folded up and over each of my hands/wrists and wake up to get 2 more on my hands/wrists. I am now hot to the touch and not just in the arms/wrists/hands (the worst effected). I am also hot to the touch now where ever the pain level is high. We also have a in-ground pool which I go into at night time just for the relief of the cool water. Ok so will cool water hurt? I have always hated ice and now "ice is my friend". Does this cause further damage for all RSDer's? I was so hot I was using the ice packs without a towel or cover of any kind. I am new to this site and at this point really feel lost as all of a sudden the RSD has consumed my life as it has my body. I am a fighter and want to take control of this. Anyone with suggestions, Please help.
Thank you and God Bless,
Lorita


Reply
Recommend Delete Message 4 of 5 in Discussion

From: rsdhurts Sent: 8/14/2006 3:55 AM
I WOULD NEVER USE ICE, WE COULD BLOW A BLOOD CLOT, THAT I KNOW IS A FACT!! THAT IS WHY EVERY TIME WE HAVE SURGERY THE DR'S HAVE TO BE EXTRA CAREFUL W/ US! I KNOW ICE CLOSES THE BLOOD VESSELS, WE HAVE POOR BLOOD FLOW DO TO THE RSD, ICE WILL MAKE IT WORSE, HEAT OPENS THE BLOOD FLOW, THAT IS WHAT WE WANT. LOVE TO ALL, SUSIE


Reply
Recommend Delete Message 5 of 5 in Discussion

From: byrd45 Sent: 8/16/2006 10:28 AM
Hi Lorita,
Ice is real dangerous for us! The cold water isn't a good thing either. My doctor told me when I started doing water therapy that the closer the water is to your body temperature the better it is for us. A 98 degree heated pool or as close to that as you can get is the best. I also used ice in the beginning before I knew any better. I wouldn't continue though because it aids the RSD in spreading.
Love,
Robyn

Reply
Recommend Delete Message 1 of 5 in Discussion

From: byrd45 (Original Message) Sent: 5/13/2006 7:00 AM
From: <NOBR>byrd45</NOBR> (Original Message) Sent: 5/5/2006 11:27 AM
Hi everyone,

I have wanted to do a weekly discussion on this subject anyhow, so since it was brought up on the board, I decided to do next weeks a little early. We are going to be discussing RSD and Ice and whether or not it is a good or bad thing for people with RSD to use on their injuries. When I was first injured and in physical therapy they would ice me down three times a week and I was told to use ice on my own as well. It numbed the pain at least somewhat so I listened unknowing of what was going on inside my body at the time. Ice is the absolute worst thing for RSD. If I knew then what I know now I would hve ran(or at least stumbled) into the hills screaming for my life. My pain and symptoms kept getting worst and worst as the months went by. This was before I was diagnosed so noone knew yet that I definitely had RSD. When I was diagnosed the first thing the doctor told me was absolutely no more ice! The ice will help the RSD to spread and that is the last thing I need to happen. Well that is when I put my icepacks away and never looked backed. The only time I go near ice is to fill my cup when I am getting a drink or touching frozen meat while cooking. I have noticed now when something is ice cold like that and I touch it it burns whereever it touches me and hurt too. Weird huh. Anyhow here is some information I found on Dr. Hooshmand's site. He believes as I have heard from my doctor and many, many others that using ice is a huge mistake for people who have RSD.





RSD PUZZLE #5
Why Not Use Ice For RSD Therapy


"Why not apply alternative ice and heat treatment to the extremity as it is done commonly in the Physical Therapy Departments?"

The practice of alternate ice and heat application only has its place in the neurophysiological experiments and diagnostic tests for the function of the sympathetic system. Application of ice results in stimulation of the sympathetic system and secondary constriction of the superficial sympathetic vasoconstrictors. On the other hand, the heat application results in the dilatation of superficial blood vessels and relaxation of the vasoconstrictor activity of the sympathetic nervous system. Obviously, in RSD, the goal is to warm up the extremity, to dilate the superficial blood vessels, and to slow down the simultaneous inflammation and increased circulation in the deep structures of the extremity (which result in osteoporosis and fracture of the bones). As the heat application helps the patient, the ice application negates the beneficial effects of the heat. The end result is a zero therapeutic effect.

Ice application has its place in acute soft tissue injuries but has no place in treatment of complex chronic pain of RSD.



H. Hooshmand, M.D.

RSD PUZZLE #80
COLD AND HEAT TOLERANCE


As you are well aware, there are early, intermediate, and late stages of RSD (stages I - IV). The stage I is referred to as reflex sympathetic dysfunction. Stage II is dystrophy. Stage III is characterized by atrophy. Stage IV is characterized by sympathetic system's eventual failure and destruction. The stage IV is also characterized by the failure of sympathetic function manifested in some patients by low, rather than high blood pressure and pulse, as well as low, rather than high regulation of the immune system.

In stage I, the injured area shows hyperthermia (increased temperature) rather than hypothermia.This is because of a temporary shock to the sympathetic system not being able to preserve heat and to control any heat loss over the skin of the injured area. In a matter of a few weeks, the majority of such patients (over four-fifths of RSD patients) regain the function of the sympathetic system and develop cold skin over the skin surrounding the area of nerve damage. Such patients cannot tolerate ice. If anything, ice aggravates the disease and exaggerates the constriction of the blood vessels and hypothermia (coldness) of the extremity. Even in these patients, the small central area of nerve damage at the area of maximum brunt of the trauma, an area is left with total paralysis of the sympathetic function showing as a pin-point area of hyperthermia on thermography. In these patients which are the majority of RSD patients, ice application should be avoided by all means.

In one-fifth of the cases when hyperthermia persists for a few more weeks, the patient will continue to be intolerant of heat or ice.

In stages II and III, the extremity progressively develops more and more hypothermia due to persistence of the dysfunction of the sympathetic system.

Eventually, towards the end of stage III and beginning of stage IV, in some cases the hyperthermia has a tendency to recur. This phenomenon is in part due to the fact that the patient has had repeated sympathetic ganglion blocks. The repetitive, numerous sympathetic ganglion blocks cause what is called "virtual sympathectomy". This results in gradual hyperthermia of the extremity (warming of the extremity). Even though the extremity becomes warm due to the virtual permanent damage to the sympathetic system, the pain does not get any better. In these patients, again, heat should be avoided.

Regardless of which type of heat intolerance or cold intolerance the patient is dealing with, the so-called heat and cold challenge treatment does no good in RSD patients. It only confuses the diagnosis and treatment and it should be avoided.

In many patients, in stages II and III, in the same extremity, there are islands of sympathetic paralysis, (hyperthermia) and islands of marked hypothermia due to sympathetic nerve irritation. These are the cases that do not respond properly to sympathetic nerve blocks and are classified as SIP (sympathetically independent pain).

The above only reflects how sophisticated the sympathetic nervous system function is and how confusing the clinical picture is.

Even though we don't use thermography for diagnosis of RSD and we consider the diagnosis of RSD being a clinical diagnosis, thermography can shed a lot of light on the above confusing issues. Both the Mayo Clinic Group and Doctor Ochoa consider thermography as the diagnostic tool of choice for understanding the nature of the RSD pathology (see Muscle and Nerves, 1994, Cordoso and Ochoa, see Mayo Clinic Proceedings 1995).


H. Hooshmand, MD




RSD PUZZLE #102
Ice Versus Heat



In our study of ice versus heat tolerance, 87% of the patients could not tolerate cold, and 13% could not tolerate heat.

The infrared thermal imaging showed that the ones who could not tolerate heat (13 %) had advanced stages of sympathetic nerve paralysis rather than nerve irritation (death of the sympathetic nerve fibers rather than hyperactive nerve fibers). The area of permanent sympathetic nerve damage in late stage acted like a leaky radiator, causing leakage of heat through the skin which resulted in warm extremity and secondary intolerance to external heat. Meaning that due to permanent damage to the sympathetic nerve fibers( after repeated ganglion nerve blocks or sympathectomy) the sympathetic nerves could not contain and preserve the heat originating from the deep structures of muscle, bone, etc... This minority of 13% of the patients did not have the hyperactive cold vasoconstriction of the skin seen in earlier stages of RSD. These heat intolerant patients would be classified as erythromelalgia, rather than the 87% RSD patients who have hyperactive sympathetic function with cold extremity and intolerance of cold exposure.

On the other hand repetitive application of ice freezes and coagulates the myelin (fatty tissue insulating large nerve fibers) exactly like ice freezes and solidifies melted butter. As the ice freezes the large nerve fibers, causing freeze damage to the myelinated nerves, the patient develops sensory loss and pain due to permanent damage to the large sensory nerve fibers. This aggravates the RSD by adding sensory nerve pain of non-sympathetic origin to the initial thermal sensory pain of sympathetic origin

As a result, Ice provides total anesthesia and relief of pain for several minute the same way as the hand becomes numb being exposed to snowballs in the winter. However, a few hours after the cessation of ice exposure, the pain recurs with vengeance due to reactive enlargement of blood vessels after the constriction of blood vessels due to exposure to ice.

This phenomenon causes excellent relief of pain with ice treatment followed by not only aggravation of pain, but damage to the nerve fibers adding sympathetic independent pain (SIP) to the original sympathetic mediated pain (SMP).

The end result is aggravation of the RSD and SIP resulting in failure of nerve blocks and then the patient is told, "You do not have RSD anymore because the nerve block did not help you and the Phentolamine test proved that you do not have SMP or RSD."

In most RSD patients ice makes the condition worse and can cause denial of diagnosis and treatment for the patient.

One last comment: this study was on advanced cases of RSD. In early stages of RSD, without exposure to ice, there is far lower percentage of RSD patients who from the beginning suffer from permanent damage to large areas of sympathetic nerve fibers with intolerance of heat and secondary erythromelalgia.

It becomes obvious that heat-cold challenge physical therapy is nonsensical because it end result is one temperature extreme neutralizing the other and ice challenge further damaging nerve fibers.

Please stay away from any ice exposure, even if you can not tolerate heat.


H.Hooshmand, M.D.

Well that's about it. What are your thoughts or opinions on this? Have you used ice or are still using it and how do you feel about this information? I would love to hear your opinions or experiences on RSD and Ice(Can it hurt us?). As always just add on to this post.

Love,

Robyn





<NOBR>First </NOBR> <NOBR>Previous </NOBR> <NOBR>2-6 of 6 </NOBR> <NOBR>Next </NOBR> <NOBR>Last </NOBR> <NOBR>Delete Replies </NOBR>

Reply
Recommend Delete Message 2 of 6 in Discussion

From: <NOBR>byrd45</NOBR> Sent: 5/5/2006 12:50 PM
just bumping this to the top so it doesn't get lost.....


Reply
Recommend Delete Message 3 of 6 in Discussion

From: <NOBR>EMY2628</NOBR> Sent: 5/6/2006 2:11 AM
Robyn,
Thank you so much for all this information, I know I can always count on you to get good info or know where to refer us for good info.
I am very upset actually by this info, because as I have said I use ice constantly, and it is the only way I get any sleep at all. If I could not put the ice on my leg, for even one day, I would go insane from the pain. I also can not tolerate heat at all, not from a heating pad or direct sunlight, not at all. Now though, I am afraid that I may be causing harm to myself that I will not be able to reverse, although I know that we all respond and react differently to just about everything. As I said though, I really do not think that I would make it through a day without the ice, I honestly think the pain level would push me over the edge.
I can't believe how with this topic we can be absolutely on the opposite side of the spectrum of reaction and yet on most of the other topics (like sleep disorder, etc) we (and I mean all of us here) seem to be experiencing almost exactly the same things!
I am very interested to hear the opinion of all the other members on this subject, especially to see if there is anyone else who is in the minority like me and what they feel about this information you've provided. I just don't know what to do, and I am scared, both of the thought of having to stop the ice and of the ramifications of continuing it.
Eileen








First Previous 2-5 of 5 Next Last Delete Replies

Reply
Recommend Delete Message 2 of 5 in Discussion

From: byrd45 Sent: 5/13/2006 7:02 AM
Reply
Recommend Delete Message 4 of 6 in Discussion

From: GalenaFaolan Sent: 5/6/2006 2:57 AM
From talking to many others online and IRL, as well as doing research and my own survey, I see that ice or at least something cold helps a very small percentage of people with RSD. I also noticed that those that do use ice and/or cold have "hot" RSD. That is with "hot" RSD the limb is usually red and looks/feels hot, also can't stand heat of any kind on the limb(s).

With "cold" RSD, where limb is more purple/pink/bluish discoloration and limb(s) feel ice cold to the touch, we can't stand anything cold/cool at all and will go to lengths to avoid it if possible. This is the majority of RSD'ers.

I am a "cold" RSD. It has changed over the last three years though to where a nice hot bath isn't very enjoyable sometimes. It actually makes me hurt!! I still have "cold" RSD though. One of those funny things that come with RSD.

As for ice.....if I only knew.......How many times will we say those few words!! I used ice a lot in the start before being dx'ed. I believe that between the ice and no pain meds it caused the RSD to spread VERY fast. I was at full body by 11 months into it though my arms weren't as badly afflicted with pain and no color change or temp change until the last 6 months or so. Now the pain in arms is much worse, more on par with leg/feet/hip pain.

Karen


Reply
Recommend Delete Message 5 of 6 in Discussion

From: theMatrix777 Sent: 5/6/2006 1:42 PM
I can't take ANY cold at all. Heat, warm/hot is fine but anthing cool/cold
sends me right up the wall. I live in Las Vegas where in the summer it is
well over 100 most days but I still wear a glove on my bad hand because
every place including my car has air conditioning on and it sets my pain
level soaring.

When I first dx they tried using ice packs on my hand and i came right up
out of the chair and told them if they ever tried that again I would never
come back. Needless to say they were incompetent in treating RSD and that
was the therapists in the surgeon's office that did the operation that
triggered the RSD in the first place. You'd think they would have known
better.

If we all know it (about the ice), why don't the professionals?

Hope everyone is having a low pain weekend,

Trudy