Contrast bath...please help.
 

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

You are not alone!!
 

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!!:hug:

I M Boiling!!!
 

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:hug:

I M Boiling, Part II
 

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.:hug::hug::grouphug:

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.:grouphug::grouphug:

No, I have never heard of it for RSD. I am going to PT and they would never give me cold water or ice! It sets off RSD causing it to flare up. I would ask the therapist for literature on using this therapy with RSD patients. Maybe for other problems but RSD no. You are not a baby-i would have cried. I would let your pain Dr. know. Good luck.

I have a call into my pain specialist. I will not allow them to do a contrast bath until I hear back from him. My foot is so blue and painful. I didn't sleep at all last night. :( This cannot be a good thing. I now know how animals can gnaw off limbs caught in a trap.

Sounds like hell too me...


pete

I do hope you won't be going back to that boob?...

ICE is a big no-no for RSD. You need a new therapist.

For now, hopefully a heating pad and some warm Epsom salt soaks can help relieve your pain.

For what its worth, my RSD is likely the result of aggressive PT, combined with the liberal use of icing after a 2nd surgery that should never have happened.

Good luck to you - please take care. Sandy

I'm so sorry to hear about this. My dh is a PT....you need a new one. Don't give this one a chance to make it right. The damage has been done emotionally...

OMG! If someone put something cold on my affected areas, they would surely have a bloody nose! I wouldn't to it to be mean, but sometimes my reflexes would take over..lol. I am sooooo sorry that you had to endure this and know you are not alone. You were NOT being a cry baby, because it hurt. No one unless they have RSD can understand. Cry if you need to, it's a great stress reliever!!!:hug:

NO ICE!!!!!!!!!!!

No one in practice knows this; or even understands this. NO ICE. Yes, all the heat you can handle. Ice, in my opinion; hurts the injured and RSD limb. I don't feel it during the time it is applied. I feel it two to three days later. Immobilizing (sp?) pain. Spasms. Strange bruising, etc.

Please trust your gut on this. You are your best doctor. Good Luck!~

Kim

Sweetie I am so sorry! Always remember you are in charge as much as RDS at times can make us feel that we are not! I know for me cold anything is my worst enemy! My PT advises not to use cold if it causes more pain. From my understanding it will just stimulate the nerves possibly making a flare worse and the idea with RSD is to calm the nerves down if at all possible. I am not a doctor or a PT, but my best suggestion is to try and find a doctor in your area that is fully expierienced with RSD, RSD treatments, and never forget that you are in charge of your own body listen to it. Anyway I know that if some PT treated me that way I woud of kicked him in the whooha and got the heck outta there! Hang in there and get as much knowledge and support from sites like this and maybe even try to find one in your own area. Kaiser has a great 8 week Pain Clinic class that I believe is open to members and non members. It has been a very valuable source for me to learn alot about my options and also in how to seek, and get the medical help I need. Good Luck and Godbless!

Contrast baths
 

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

My Doctor called me back and said I HAVE to do the contrast baths! He said it is expected to get worse before it will get better. My foot is not any better from the first one :(. I tried to argue with him and he said "You have to HELP yourself if you are going to get through this and that means it is going to hurt. Get past the hurt and think about the goal." God what do I do!!


I am so freaking lost! Seriously lost. What to believe what to do. I finally find doctors that know what it is, and I want to get better but I don't know what to do. Lord help me. I am so FRUSTRATED!!!!!!!!

I just can't do it. I just can't. It hurts so bad. If I miss this PT they will drop me as I already missed one yesterday. The doc never called me until today.

I feel so alone.

Can you get another doc ASAP? Where are you from? Do you live in a big city? Do you have a primary care doc that can help you? Your doctors might know what is wrong with you, but they are not well versed on how to treat it. So you need to find someone that is.

Don't panic, and please don't loose hope. Just chill. Contrast baths for RSD are no longer advised - they haven't been for a long time. Go to RSDSA.org. There is a section for PTs.

Please take care, and know that we are thinking of you. XOXOX Sandy

NEVER ICE, or ICE COLD AGAINST THE SKIN!

The ONLY way I use ice is like this.
I buy the Blue Pack from a medical store, (I think they're made by HydroCollator). You can keep them in the freezer, you can also heat them in hot water for, Hot or Cold compresses.

I get migraines. Had a couple real Bangers this week, I wake with them! What a way to start the day! So, out of the freezer, Never directly on the skin, but wrapped in a towel, I'll apply it on my head/forehead.

If my feet swell, I may do the same.. NEVER To the point of pain! But, if my feet have swelled, they're in pain already, and a "Cool" compress works well (Towel wrapped)!
Never Iced!
NEVER!
And, it Does works good for migraine.!

Be real careful, Please, follow through with what SandyRI has asked, OK?

We're all here for you!

Pete

asb

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? :Bang-Head:

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!:grouphug::grouphug:

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!

@ Sandy,

Yes! I hear you! WHY can't they find this information? Why? I know they are busy but they agreed to take me on. IMO they need the education and need to KNOW HOW to treat me. I am going to do everything I can to TEACH THEM. For me it would be 8 hours of travel to the closest RSD specialist. I am sorry. I didn't ask for this, I can't help they never had to treat someone with RSD, but now they do. They took an oath when they became doctors, and damn it they are going to live up to it!

I managed to get into contact with an "RSD coach" an advocate that has called me herself and has helped me greatly! With her help I am going to get these doctors updated and on the right track. This RSD coach has been a wealth of information and has the latest treatments and latest news. Just when I thought I was really going to lose my mind, the Lord sent me her!!

I am not giving up. I have a meeting with my doctors on Wednesday and they will listen or I will get an attorney. That is all there is to it. I have a lot of years to live on this planet and I am not going to allow anyone to make this worse, screw it up, or do anything to get in the way of progression towards remission. They will get on this bus with me, they HAVE to, they agreed to treat it.

They can hardly turn me away, seeing how they have already made a few mistakes, some pretty serious. Like the surgery they put me through, and the cast I was made to wear for 8 weeks. I fractured my eye socket due to the cast I should of never been in. I fell on the crutches. Now my vision is screwed up.


OH they will get on board, and learn about RSD and do what they are suppose to do, TREAT ME! I am angry now. It's been 9 months of this and that, and suffering! Not any more. They gave me hope, they told me they could fix this, one said I would be in remission by spring, now he has to do everything he can to live up to what he said to me. I WILL hold him to that, and he will have to learn HOW to treat it and what to do with lil ol me. I have the same rights as anyone else in this town that could of been struck with it, or may be struck with it in the future. Rinky dink po dunk lil country town or not!!

*steps off soap box*

I'll take it to the media if I have to.

I know I may never go into remission, and I know this may be a very long road, I know what the reality is. I just want these Doctors that have agreed to treat me, TREAT me and do it with all the information I have, and be on top of it, and not do things that might make this worse. I should be able to expect at least that! ANYONE who has RSD should!! It is not a NEW thing to the medical field!! It is something EVERY doctor should know about and at the very least know how to recognize! EVERY Pain specialists Should all be up to date on it! :mad:

I am also snding a letter to every single doctor that misdignossed me, telling them what it is that I actually do have and sending a packet of information on RSD. Along with the information on what they did to me and how badly it effected my RSD and caused it to spread as well as progress. I will not sue them but I plan on CC my lawyer with each letter. I will take great joy in telling the one doctor that I was not a med seeker and will point out the classic symptoms of RSD and how they ignored me. I will leave my foot prints. Maybe , just maybe they will think the next time someone presents with RSD!!

Dear Stardust,

I wrote a lot of letters after I finally got to Boston and got the right treatment, too - it was good therapy, I think. I wrote to my surgeon (who performed 2 rotator cuff repairs), his physical therapists who never believed in my pain (they thought I was drug seeking), and the PM doctor who messed me up so badly.

I am glad you found an RSD advocate - how awesome! We all need someone who believes in us and our pain and can help us make the right decisions at the right time. You deserve it after what you have been through!! Good luck.

Please take care and feel free to vent on this forum as often as you like. That's what it (and we) are here for.

Please take care, XOXOX Sandy

When I first developed RSD symptoms in my right foot-it burned soooo bad and I was not diagnosed. I would come home from work and be crying from the burning pain. My husband would get my foot spa and put in ice water-thinking he was helping me-We didnt know better at the time- I screamed even in COOL water and got worse and worse. i can truely relate to the pain that this type of treatment caused you and I am begging you to not do ice therapy -IT MAKES IT WORSE!!!!

Stardustkid, It just broke my heart to read what happened to you in PT. I hope things went better for you. Youshould try making your first rule if it doesnt feel right to you dont do it. I have a couple bad PT stories. ANd thats what I finally did. I had to learn to say stop or No! Frankly I dont think most of them even have a clue what to do with us. They are shooting in the dark. We have to train them. I hope your feeling better. I cant imagine living with this monster going to PT with no pain meds. Your a tough cookie!

I feel so fortunate to be reading this post right now! I have only been to one PT session several months ago, but am scheduled to start aggressive PT again next week for RSD in both feet. I am also scheduled for my first nerve block. I am nervous and cautious about not only the procedure, but about the PT as well. I will be VERY candid with my therapist ahead of time, and make sure that they are FULLY AWARE that I am not willing to do the extreme heat/cold bs that has put you all in so much pain. I can understand warm/cool to a degree, as when my feet get so tight and swollen cool compresses or packs DO give me relief, and when I feel cold all of the time very hot baths feel wonderful. However, I can't fathom extreme cold temperatures being of any benefit to any of us. Thank you again for this wonderful thread. I am so glad to have found this site and all of you. I have been so lost on this damn internet looking for some sort of hope. :)

Seems like opinion is divided...
 

These physical therapists discussing it seem to think it can make things worse in some instances and better in other instances:
http://www.rehabedge.com/cgi-bin/ult...4;t=000052;p=1