hello everyone,

I had my first session in PT today and it was a contrast bath. Just saying the words brings tears to my eyes. I have RSD in my right foot. I have a great team of Doctors, been getting nerve blocks, injections in the foot, and now PT but I must say, today was awful. Maybe I am just a baby? I feel so ashamed that I cried like I did but it hurt so badly putting my foot into cold water. My PT therapist kinda looked at me like I had three heads. Is it normal to hurt this bad? It took my breath away, He kept yelling at me to breath but I just couldn't. He gave me 5 seconds to put my whole foot in and I screamed out, I didn't mean to, it just came out. I couldn't keep it in for the full minute. He kept his hand over my knee the second time and held my foot there for the full minute and I wanted to die.

I am not on any pain meds, nothing has worked for me. I am now is so much pain after PT. I am at a loss, I have to go back tomorrow and do it again and the thoughts make me sick. He wants me to do this at home and I just don't think I can do it. Do they really help?? The pain is worth it?? I will do anything, even this if it really does help. Please , tell me this is worth it? Am what I am going through normal or is there something else going on?

Thank you for you help.

stardustkid

I just have to pipe in and say that I know exactly what your saying.. My RSD is in my rt. leg predominantely.. although it has spread to many other areas in my body but.. let me share my story.. After my initial knee surgery my ortho. felt I should have a manupulation done on my knee. This was to benefit the degree of bending.. immediately following that procedure I began a 2 week agressive pT session.. this is everyday for only two weeks as longer than that time frame could actually hurt me.. Well.. as you mentioned.. this pT was just aweful.. I mean down right 2 hrs. everyday of big people holding me down with my shoulders and pushing and shoving my leg everywhere... It was so terribly painful that I cried (Iam not a crier).. and complete strangers would apauld for me as I exited the room and truly I was not able to recongize my family.. it was bad... I guess it is important to have such pT.. but you got me.. heck it was aweful!! I am sorry that you are now in this type of pt.. I too lost many nights sleep knowing that the very next day I had to go back.... Don't be afraid to say.. enough is enough!! In the long run, now 2 + yrs. later I still suffer a very aggressive form of RSD.. that time in my life was a time I won't forget and where did it get me??

Gentle hugs and wish you well... hang in there!!

Dear Stardustkid,
Oh, now I am boiling from listening to your treatment at PT today! What the heck is wrong with those people? I cannot believe he held your knee in the water to force you to do it. What an idiot. He is probably used to having people on pain medication and did not realize you are not on any meds. I think you should go in tomorrow and talk to the supervisor of the place and tell them you will not be able to tolerate it at all. Tell them to start out slowly like I did by using a towel which you can do at home and put it under your foot and pull and push it back and forth to move your foot without touching it. I also started with RSD in my right foot so I know your pain and just had to write to you. The PT guys kept telling me to do that water thing and then when my foot was hot they tried cold water and cold foot they tried hot water. It never worked for me and its been almost five years since then. I have full body now since four months after injury but you need to do what is right for you. I know it will hurt and maybe you can take Tylenol or something like that about a half hour before you go but it is the best thing to keep it moving. I know the pain is unbearable but try and push yourself but in your time not by them forcing your knee down. I also believe putting it (or should I say forcing it) in cold water can even make it worse. I know I read it somewhere and will look for it. I think it was on another web site. You need to speak to the boss and the pt person tomorrow before they even touch you. This is your body and not theirs. Give me a bit and I will see if I can find the article for you. If anyone else has it please paste it here.
Take care and hang in there,
kathy d

Dear Stardustkid,
I want you to go to www.rsdhope.org and go about 8 rectangles down and click on Physical Therapy and you will find all kinds of information to copy and give to your PT personnel. Here is what I got for you so far. You will have to teach them about RSD in a kind and gentle way since they are idiots and I cannot believe they did that to you. And from the first article it seems like you are not the only one who cannot handle cold...87% cannot either! I hope this helps you out. You may want to google cold water treatment for RSD or something like that and make sure you take it to your PT tomorrow.
Thanks and good luck,
kathy d

RSD AND ICE - ICE AND RSD / CRPS
RSD PUZZLE RSD AND ICE
Neurological Associates
H. Hooshmand, M. D., P.A.
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, MD.

SEE ALSO RSD AND ICE ARTICLES

http://www.rsdhope.org/ShowPage.asp?...1&PGCT_ID=3376
11/18/09


__________________________________________________ ________

CRPS /RSD Facts
CRPS/RSDS AND ICE - CRPS AND ICE

CRPS/RSDS PATIENTS SHOULD NOT BE TREATED WITH ICE. NOT EVER!
NOT ICE, NOT HOLD/COLD THERAPY, NOT HOT/COLD CONTRAST THERAPY, NOTHING DEALING WITH ICE AND THE AFFECTED RSD AREA.
NEVER.
EVER.
IT CAN MAKE THE CRPS/RSDS WORSEN AND/OR SPREAD. IT CAN ACCELERATE THE PATIENT THROUGH THE STAGES.
THIS IS EXTREMELY IMPORTANT TO KNOW AND TO SHARE WITH YOUR PHYSICAL THERAPIST.
Ice will only cause the blood vessels to constrict more, reducing the blood flow to the extremities and increasing the pain. It can damage the nerve's myelin sheath (the protective cover basically for the nerve).
Patients can actually have their CRPS/RSDS go into the next stage from repeated application of ice packs.
Please let your Physical Therapist know this, for your sake and others.
For the medical reasoning behind this, please follow this link for one of the better explanations;
ICE AND RSD ARTICLE
ICE AND RSD
ICE AND RSD NUMBER TWO

Most Doctors and Physical therapists have caught up to the current understanding about CRPS/RSD and ice but there still are pockets or resistance.


http://www.rsdhope.org/ShowPage.asp?...8&PGCT_ID=1775
11/18/09

I cannot thank you all enough for your support and information. I know the PT was doing what he thought was "right" but lord it felt so wrong! It has left me in such awful pain tonight. I was talking to my husband about going back tomorrow and once again I started crying. This is so unlike me, I can tollerate a lot, but this was just so awful! My husband is trying to understand. I know it can be hard when you don't really understand the feelings associated with it.

Thank you all so very very much, I am off to do a bit of reading.

Thank you all so much. I posted an answer but I am not sure where it went! I cannot thank you all enough! I did read the links, I am a bit confused though, does this apply for contrast baths without ice?? The temps were 15 degrees apart. His goal is to reach 20-25 degrees. we started out with the warm water at 85...

Thank you again!! for your support and understanding. I hate that someone else knows what I am going through, but I am also thankful I am not alone.

I do contrast showers all the time. WARM SHOWER TO COOL. Depending on what ur professionals say & what ur own body thermometer is accustom to. I am a TOS patient who develpoed RSD & FM so my personal regime is so off from the majority. When you end in warm then the muscles can move & the circulation begins to flow to the weakest areas. For me swelling increases in warm. I have to end in cool due to the Vascular & RSD swelling. It really does give me relief. So, see its crazy for me. Cold for this condition, warm for that condition, anything & everything for this condition. ahhhhhhhhhh! Its insane

Dear Stardustkid,
I am so glad I could make you feel a bit less alone. I know it is tough and it hurts so bad...like you said animals bite off their limbs. I know if I had an ax I would have cut off my right foot too...just to relieve the pain. It was painful and useless so why did I still need it? I too was unable to find our posting on this subject...it went to cyberspace I guess.

To answer your question, I believe really cold water and/or ice can make the RSD spread because the cold water/ice damages the nerve fibers which control the pain. That is probably why your foot got worse overnight and you didn't sleep. I am glad you stood up to them and told them no more contrast baths. They probably think they are dealing with a sore muscle or bone but nerves are a whole other ballgame! Ask them to start you out using a rolled-up towel like I suggested, just gently moving it back and forth between the ball and top of your foot on the underside while you are sitting up with leg extended in front of you. It is painful but you will be amazed that the more you can do this the more mobility you will get. Does your foot get hot at times and cold at other times like mine? My foot gets extremely hot at 1 AM every night and burns like crazy then once I am up about two hours later it changes to freezing cold and burns so badly throughout the day and then starts all over again. It seems that when I take a nap and wake up it reboots it somehow back to hot. Strange but I can tell what time it is from how cold/hot my foot is!?!?!? Best of luck to you and let us know how you are doing. You can PM me in case you want to vent or just need to talk to someone. That goes for anyone just needing some extra venting. I am here for all and would be honored to help anyone out. This is too hard for one person to go through by themselves. This is a great site and has helped me so much over the years.
kathy d

I ended up going into PT but I told the therapist there was NO WAY I was doing the contrast bath. He was upset. Told me he is going to speak with my doctors. I told him he was more than welcome to. I KNOW my body and I KNOW that it is making it worse. There are two different pains. The hyper sensative pain on the surface, and the deep pain inside. The cold irritates BOTH, the inside pain increases ten fold with the cold. I won't do it! I Know in my gut it is wrong. There are other things they can do to desensatize my foot. I left without any therapy at all.

So My pain specailist called me this morning and cancelled my nerve block for this afternoon. He spoke with me directly and he wants to see me this wednesday for a regular appointment to discuss my treatments and other options since the nerve block only lasted a day. He is very concerned and said no more PT until "we" understand things better.

I told him I Understand things better it seems than my team of doctors. I live in a very very tiny town with a limited amount of doctors. They were calling it causlasia at first. If that says anything?

I am MAD! Mad enough to MAKE them understand this! I apologized to my doctor for being rude and he said no need, "You are just making men be men and doctors be doctors" I think too they are scared I might sue. I won't. I am not interested in that. I ONLY want to get better and I will not allow those who know little about RSD try to treat me without knowing how.

My pain specailist mentioned maybe another surgery!! I said WHAT FOR!? He said to maybe explore other reasons for the pain. I said there is no way I am doing surgery! We will talk when we see eachother on Wednesday!! GOOD GREIF!!!!!!

I will never ever do contrast baths again. I stood up to the therapist and I may have lost a place to do therapy, but I don't care. I will never go through that pain again!!

Thanks you to all that have responded. I am in a better place now. I was in such a bad state of mind, wracked with pain and feeling so lost the other day.

Thanks again!

Hang in there.

Try to get to the nearest big city hospital's pain clinic - hopefully one that is associated with a good university - ASAP. Traveling can become really uncomfortable as RSD progresses, so try to do it now. And it might take some time to get in - some of these places have a long wait to see the better docs.

I believe that I suffered a lot of harm by staying in RI for as long as I did after my probable diagnosis of RSD. After my 2nd rotator cuff repair surgery, I was exhibiting signs of RSD and my ortho's PT team never picked it up (they told me ice was "my friend" - I used to sleep with it on my shoulder because I was on fire!!). Then the RI pain manangement doc I to which was referred never performed any blocks; rather, he injected my cervical spine and the back of my head with TP injections full of steroids. My RSD spread from my shoulder to all of the injected areas within a month or two of the injections. I just didn't know any better, and relied on the docs in this teeny, tiny state to help me. And I will always suffer because of it. It was 6 months after the date of my probable diagnosis, Christmas Eve, before I found a great team of docs in Boston and had my first nerve block.

The RSDSA.org website has a lot of great info - I am almost certain it provides a database where you can find pain management docs and/or anesthesiologists by state.

And not for nothing, but if WE can do your research, why can't our doctors and PT's? I thought for a long time that perhaps I would sue my RI docs for hurting me so badly and causing this to happen to me. But in reality, that is easier said than done!