ballerina:

Thanks for the information.

i'll keep digging.

I am a little surprised it should have so much luck with getting medical doctors to take a look at research you have prepared.

I do this -- but I have only had one medical Dr. should take a look at research before the appointment.......... I guess maybe I should try being a little more assertive.

Voner,

The first part of the equation is to select docs who are interested in developing partnership with patients. If you don't have that kind of relationship with your doc, or feel that you cannot, for whatever reason develop that kind of relationship, you will probably not be successful in getting him/her to review research.

This is a very slippery slope when it comes to treating a disease such as CRPS. It could also mean that you have a hammer and nail kind of doc. He/she is the hammer and you are the nail. He/she has a particular vent on your treatment, whether it be motivated by money (i.e. expensive procedures like spinal coed stimulators that come with a long, revenue producing feeding chain i.e. sales reps), or a lack of interest in learning anything new or state of the art, or an uneasiness with partnership relationships in relation to his/her patients.

Hope this helps!

This is so true. Until I started working with my current doctor I had never experienced this sort of doctor/patient relationship where it really felt like a partnership. I was lucky that I also had this sort of relationship with my physical therapist. To have those 2 key people on board and interested in learning about RSD and trying different treatments has made such a difference in my life. It has also helped me really feel like I have some control now over this RSD monster and am not just at its mercy and at the mercy of the doctors. Having that partnership with my treating doctor is truly priceless.

Just a quick update of my treatment with tDCS. I recently had a very minor sinus infection that did not require antibiotics. To my surprise my CRPS symptoms returned with a vengeance. The return of a stiff claw hand was very scary. After having a brief pity party I surmised that my illness, however slight, ignited an inflammatory response that snapped the CRPS to attention, much like spreads of CRPS ignited by surgical procedures.

I am assuming that I was correct because soon after the illness resolved the CRPS flare subsided.

Hope this is helpful to someone!

Thanks for the update. As you've said before...the tDCS doesn't seem like it offers a "cure" for CRPS but has the potential for helping to control some of the most debilitating symptoms. I am so inspired by your journey and the success you have had. Occassional setbacks just serve as a reminder of why we fight so hard to beat this thing. I pray that through the use of tDCS as a treatment that people with CRPS find a tool that helps lead them to remission or at the very least to a quality of life they haven't been able to have before. Please keep us updated and good luck!

The most remarkable thing about my treatment is that atrophy in my arm is entirely gone. Although I still have atrophy in my hand I am working on that.

My range of motion continues to improve. The debilitating full body joint pain that has been my constant companion is now gone. Totally and absolutely gone! The allodynia is improving.

My quality of life, to say the least, is so much better! I am so grateful that the ever present drama in my life is vanishing. (constant researching new treatments and procedures, researching drugs, dealing with severe drug reactions, preparing for Dr. appointments with list of new questions, procedures and new treatment to try, educating health care professionals about state of the art treatments, the endless frustration of fending off physicians suggestions of invasive and potentially devastating procedures not backed by research data, always having one more option to try but fearing the desperation that would ultimately set in when that last option failed, feeling so ill that I could not walk, etc., etc., etc., etc.)

There is no question that tDCS has halted the progression of CRPS and is probably reversing it.

I am now beginning to think that remission may not be a long shot!

I truly hope my posts are of help to others! You all deserve the kind of improvement in quality of life that I have found!

ballerina:

It is wonderful to hear your symptoms are improving!!!!

I have a couple technical questions for you:

1. How did you go about figuring where to locate the anode pads? I referenced a paper by Valle, et al. that says they place it over C3 according to the 10--20 system for EEG electrode placement…..

2. Why did you decide on 3" x 3" pads?

3. on the doctor subject -- you(or other people) are happy with the partnership between you and the doctor -- is the specialty (neurologist?)of the doctor important or just hunt around?? I have given up on them all and am using a nurse practitioner at my primary doctor's office. At least she has time to talk and time for me to explain…

Thanks.

Ballerina -

A little late, but let me add my congratulations as well. Congratulations!!!

What you have accomplished is HUGE. If, based on the stuff in my last post here, and other (far more reliable) sources, "spread" to a new extremity is in fact a fresh case of RSD/CRPS, then it follows that your protocol should be generalizable to all fresh cases of RSD/CRPS!!!

Seriously. Or as put in the land of pedantry, Q.E.D.

What more is there to be said? You rock!

Mike

For the third time in six months, my Activa Dose II Controller Ionto device failed on me Sunday night, probably because I'm pushing the envelope just a bit, although not as aggressively as before: now using 2 mA for anodal stimulation of dorsolateral prefrontal cortex @ "F3" and 3 mA directed towards the dominant motor cortex @ "M1," both for 30 min./day. (With "lower extremity" pain, I was advised from the start not to expect too much in terms of pain control, and that about sums it up.)

As I've previously mentioned, the stimulation @ M1 worked wonders for my symptoms of "sympathetic dysrhythmia," primarily edema and myocardial small vessel constriction that not only had ceased to respond to nitroglycerin but had shown up for the last 2 years running in nuclear MRI blood profusion studies, while the treatment @ F3 was doing wonders for my verbal speed and word recall and though by no means a cure was greatly helping to control the "brain fog" associate with the "loss of executory function," disorganization, etc.

While the machine was sent back the next morning and a new one is being ordered as a back-up in any event, I don't expect to have a machine in hand until - realistically - the middle of next week: where I only got around to pleading with my doctor to buy a spare for ASAP delivery on Thursday night.

Just to chart what's happened in the interim, by the second or third day off the unit, I was completely unable to keep my focus, flitting from task to task with little or nothing getting done. By Thursday - 4 days into it - I could feel a real problem with delayed word recall. And finally, late Friday night, I became aware of significant edema in both ankles, on account of which I've had to hit the Lasix/Rx potassium supplement combo for the first time in maybe as long as six months!

Bottom line: Ballerina had a profound insight when she realized that tDCS could be valuable when utilized as a maintenance therapy for CRPS. It's just that it doesn't work so well when it's not working. (Go figure.) So, from this point out I'm going to be keeping a spare around. (And at $280, it seems worth the money.)

In any event, I just wanted to chart the time(s) of symptom re-occurrence for whatever value it might have for anyone else.

Be well all,
Mike

Thanks for all the info, Mike.