I just cant believe how bad I have gotten. Muscles r wasting away all over my body. Feet burning and cramping. Just feel so hopeless ,,,I'm thinking the pain pump cause I can't tolerate oral meds...

So sad

Debbie

I am so sorry to hear this. I believe that everyone has to make the right decisions for themselves...but I just hope that whatever decision you make that you are not making it out of desperation. SO many horror stories about what happens to people when they do that. Please just make sure that you are confident in your ability to weigh all the risks and benefits of such a thing before you go ahead with it.

I don't know if you have looked into tDCS at all or read the thread on here...but personally I would try that before anything more invasive. Several people have seen AMAZING results and unlike the pain pump which just treats the symptoms...tDCS aims at the root cause of the RSD. I have only been doing it a month and I have already seen some wonderful results...though I did not start out nearly as bad as the situation you (or bellerina or CRPSjames) are in (but I was there last year prior to all the physical therapy I did and stuff).

I do not take pain meds...the only presription that i have for pain these days is the lidoderm patches. But I do use a TENS unit and an ultrasound machine as well as part of my therapy and pain management so at least I have gotten some relief from those things. I think back to last year where it was just agony every minute of every day and I could not do ANYTHING...it's like a nightmare. I did a lot with physical therapy and I just started tDCS a month ago. I already had a lot of the function back prior to the tDCS...but I am already seeing that if I had started this prior to or along with the PT that it would have made THAT journey a lot easier on me. I have seen a reduction in the burning pain and allydonia and for me the absolute best news is that when I got into a small car accident the other day (got rear ended) I did not end up in a flare that lasted a week (which would have been normal prior to the tDCS treatments). Instead...my increased pain only lasted several hours. I had to do a lot of my "tricks" to get the pain level down initially...but once I did I was back to "normal"...and I founds that simply amazing.

At any rate...just my opinion that this is worth a try...especially if you are at the end of your rope. Thought it would be worth throwing another option out there to you as I know that when we are desperate we will try anything and that's not the mindset you want to be in when you make a decision like this.

Take care and good luck. I hope you find some relief soon.

Thanks for your reponse. I already tried tDCS with no results...I think I tried everything out there....

Debbie

Hi Debbie,

I can't tell you how sorry I am that nothing has worked for you. If you don't mind me asking what electrode placement was used and where did you have your tDCS treatments. The reason I ask is that many people believe they are non-responders to tDCS when their initial treatments fail, only to have remarkable success with the correct electrode placement for them.

Have the doctors figured out what is causing the wasting after saying you don't have CRPS?

I had the electrodes on my head and maybe forehead ...I had it done at Beth Israel in manhattan,,,I think this was tScd? Kind of stings your head?,,nobody knows why my body is wasting away but I think it's all the rsd....thanks for your response

Debbie

It might be worth trying tDCS again with a different electrode placement. I have tried two tDCS electrode placement that I had no response to. The current placement is responsible for eliminating the atrophy in my hand, among other CRPS symptoms. My current response is much better than the protocol used when I had treatments at Beth Israel.

Where r u getting it done now? How would I find someone on long island doing it???

TY!

Debbie

Dear Debbie,

I will add my two cents worth. If memory serves me I recall reading a post
of yours some time ago about your procedure at Beth Isreal. I understood
you to say it did nothing for you. My question runs along the same vein as
ballerina's. I understand in all there are four possible placements for TDCS
and if you only had one of the four done at Beth Isreal, what is to say you
might not be a responder to one of the other three placements. I recall
a post from CRPS James who shared the results of an associate of his who
tried TDCS. He tried one procedure for two weeks and nothing happened but
over the week end he tried different placements and he did respond.

You either would be a responder to the other three or you would not be, it is
the might be which has merit. I am so sorry for your pain My heart goes
out to you.

Joydee

I treat myself at home. Please see the tDCS thread for detailed information.

Exatcly. this does not sound right. At least you should have had an funtional mri to see what parts of your brain are responding when in rest. Electrode placement is crucial with tDCS. PM me if you want to know more.