RSD/CRPS Progressing?

Even though I don't have it full body yet and know how blessed I am, the entire right side of my body feels this burning that can become so intense and even causing worsening pain down to the bone.
Has your doctor said that you have RSD in/on your face also? If so, not everyone that is full body has it in the face and I can only imagine how painful that is.
I do know that my right leg doesn't get the circulation it used to and that is part of the disease and why you may feel so cold. Even in the summer I don't wear shorts because of the pain even a slight breeze can cause.
I was on crutches for over 2yrs and have learned to cope and even though I can say that now, I still have days like today where I have over done it and started crying because I was in so much pain.
I am treated by a pain management doctor who has helped me greatly.
I fear most medications and have remained on the same dosage of pain meds for almost 9 of almost 11yrs.
I refused to continue Neurontin or any "epileptic drug" after finding out that not only is it not FDA approved to treat pain but doctors put people like us on such high doses that it causes more euphoria than the pain medications ever did and I'm a fan of using as less meds as possible in general; especially since I got this after a motor vehicle accident when I was only 31yrs old.
I have also refused a Spinal Cord Stimulator which is basically an Internal TENS unit. Most RSD patients I've spoken to it hasn't helped and they had it removed or they had so many problems with the leads and wires (as surgery is needed every 2 or 3yrs to replace these leads and wires which grow into the inner tissue of the body.

Please post a reply and I would like to discuss this with you privately if possible as just another woman with what is called; "The most painful Chronic Pain Disease known to man".

I was recently in a clinical trial study and feel that over the years I've had to educate myself on this disease as I've found even doctors and nurses in the ER and other practices don't even know what RSD is even though it has been known since the Civil War Era.
If there are any questions you have or answers I can give to you, I will try to help you as much as possible.
In even this disease we are all different but the pain and burning we know all too well unfortunately.
Gentle Hugs

Get a good Neurologist, Physical Therapist, Counselor that specializes in chronic pain, and last but not least a Pain Management Physician that is knowledeable with the condition, one who spends more than 5-10 minutes in the room with you, one that cares enough to talk in detail with you about the condition and who is willing to take any necessary approach to controling your pain and your ability to function in society. I had to go outside of my workmans comp bullcrap and pay out of pocket for this type of treatment, but at least I get help now and he truly cares about me.

Another thing that I've tried and that's helped my movement and a little bit with the pain is this therapy my PT suggested. It's called laterality training read about it. Apparently RSD causes your brain to retrain itself so you hold your appendage a different way, spasms get worse, etc... this is suppose to help you to properly train your central cortex. It's worth giving it a try, instead of buying the photo cards just cut out the areas affected from a magazine and use them that's what I did instead of paying for the cards.

Good luck and God Bless you!

Does your feet and legs jump up from your nerves by there selves? I have had little to no comfort at night trying to sleep and it is getting worse and it seems like the doctor is running out of option and it's almost feels like I'm going crazy when I know I'm by far crazy. I hope this helps you and I'm always looking for more ways to be relaxed, or diffrent meds to try as I already tried quite a few. Please respond if you have anything to add.

All that said, I will be setting up an appointment to get the ketamine treatment in Florida. The Florida location can get the ketamine dose up higher than the regular hospitals. The florida location is considered a research center. That is why it can get the ketamine doses higher. Check out the Florida website rsdfoundation.org and look at the videos etc... There is some one here in my county that had the rsd lesions etc... and was in worse condition than I am who had the ketamine treatment in Florida. Check out the website and let me know what your thoughts are. I will keep you in my prayers. RSD hurts! No question about it.

i have had 3 rounds of nerve blocks didn't work, i had surgery didn't help made it worse. everynight i go to bed and don't want to wake up ,knowing what my day will be like. to get through each day without giving up is some kind of mirical. this disease is number one in suicide deaths and i can really understand why. pretty much there is no life beyond rsd. its really sad, and very lonely. i have to just hope i get through just one minute adfay. i feel for anyone who has this, and my prayers are with you all.
judi