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: