I'm sorry that things have been so frustrating for you and I hope that they get better.

For me...the pain reduction was a fairly gradual thing. Mostly I notice it in the form of a reduction in my sensitivity to touch and a lessening in the pain flares that really jack up the pain level. With the placement I am currently using it took a good month or so before I felt any pain reduction in my left ankle where the pain was the worst...but I am now feeling an improvement there as well.

My pain is not gone by any stretch but I think that because there is less sensitivity to touch and the pain flares are less and last a short amount of time that this leads me to feel that my pain levels overall are lower than they were before. Not sure how it is for the others...but I know I can use my hands for longer periods of time, I don't feel like I want to die when something or someone brushes up against me, I can wear closer fitting clothes for longer periods of time, I don't have to wear gloves every single time I go outside (just when its cold or particularly windy), I can sometimes wear a short sleeved shirt and not want to cry every time a WARM breeze touches my skin (cool or cold ones still do though)...stuff like that. Or how long I can hold something in my hands before resting (I do cross stitching and I can now usually hold the stitching in my hands for longer periods before needed to rest them because the pain level starts to get too high). Those are the sorts of things that I use to judge whether the pain levels are more tolerable and lower than before.

But all of these things have been gradual. I noticed some effect pretty early on but it wasn't until a good two weeks in that I really felt like I could FEEL the effects on a bigger scale. I do treatments twice a day and I write down how I am feeling every day...but I don't look over what I write every day. Instead I wait a good week before reviewing everything. By doing it this way I was able to really see a bigger difference.

Also wanted to mention that the first placement I tried (the C3/C4 position that you are using now) I felt the pain reduction immediately after the treatments but that it didn't last very long and then within an hour or so would be back up to really high levels. I didn't like that because it felt worse to me than just having high levels constantly and dealing with them. The elevation of the pain so quickly really made me nuts and was sort of horrible for me. I know...sort of crazy because wouldn't everyone love just a little bit of relief...but it really messed with my coping techniques and threw me off.

I also amped up my other pain relief techniques after this first electrode placement. I take two warm baths with epsom salts every day now instead of just one, use the ultrasound twice a day (right after each bath), been walking and doing my exercises more, and have been using the lidoderm patches more strategically in areas where I anticipate flares (for example on the parts of my arms where I tend to get elevated pain after walking or where a particular bit of clothing might rub against me wrong or where my shoes might hit me wrong, etc) and only use them in the same area once or twice a week. Could these things also be partially responsible for the pain reduction...I suppose it's possible but I've done all this in the past before without much luck in lowering the pain levels over all...and certainly not the sensitivity to touch and all that. So I feel pretty confident that it is the tDCS that is making the big difference and the other stuff is just helping that along.

I think that using the different electrodes may be a very good idea for you. I am glad to hear that you are not experiencing those side effects anymore. Even if they were minor...still is good to not go through it. And glad you are sleeping better now. I hope a new placement will see you with better results.

Hi Linmarie,

Eight years is a long time to try different treatments with no relief. I hope you give tDCS a try.

I had atrophy in my right hand which is now completely resolved. (That is not the only symptom that has totally resolved due to tDCS) I have gotten a lot of function back and it has been stable, even when I go off of tDCS for an extended period of time.

You mentioned pain in the buttocks. Is this pain related to a spinal cord stimulator? I only ask because several folks who have pm'd me for tDCS info had failed stims that resulted in spread of CRPS to surgical sites, including battery sites. tDCS has been less effective for their pain caused by SCS spreads to those sited but has been very effective for the original CRPS pain.

It is not surprising that your pm doc dismissed your questions. What pm doc wants his former waiting room of patients to be purchasing a device for under $300.00 and treating themselves, getting better results than any invasive procedure or treatment that can be offered by repeated visits to the waiting room.

I infrequently visit them now after camping out in a long laundry list of specialists since eight months prior to my diagnosis.

You can find info on purchasing the iontophoresis device used for tDCS by reading this thread. There is also information on treatment facilities offering tDCS. You may do a pub med search for clinical trials using tDCS to treat CRPS and other forms of chronic pain. CRPSJames posted a link to a tutorial for using Pub Med that I was not aware of in case you have not done research before.

Not everybody likes digging through research journals. If you would rather consult with a physician I highly recommend Dr. James Fugedy in Atlanta.

Hope this helps!

I am so sorry to hear that you have been dealing with this from so long with not much in the way of relief. A little over a year ago my RSD spread as the result of a lumbar sympathetic block to my entire upper body (started out in just my left ankle). A year ago I was stuck in a wheelchair and I couldn't stand or walk at all. I spent so much time bouncing around from one doc to the next with no one able to help me. So I decided that it was time to help myself. Thankfully...I ended up with a wonderful primary care doctor who helped support me and a fabulous physical therapist who was also a godsend. With months and months of physical therapy and stubborness and just determination I managed to get myself walking again and got a lot of the function back. But the pain was still awful. I cross stitch and it was so frustrating that I couldn't hold my stitching in my hands for more than 10 minutes at a time before having to set it down because of the pain. That's just one example of the many things that I felt robbed of...because even with the function back the pain was very limiting. TDCS has really given me hope that I will be able to take a lot of those things back. Pulling weeds...a few months ago that would not have been possible but tDCS has definitely given me the ability to do this because it is one of the very few things that has helped the pain. And this is more than just masking or taking the edge off the pain...it is actually lowering the pain levels, reducing the number of flares and how long they last, and reducing the allydonia and sensitivity in my RSD areas. I had sort of given up on the idea of the pain going away and I was alright with that...accepted it as reality and was going to push on with my life regardless...but tDCS has given me hope that maybe life CAN get better and maybe I won't have to have this awful pain every day of my life. At least I am optimistic that things will continue to get better and maybe I won't have to use the walker forever. The information I used to purchase the device and materials is on page 2 (I think) of this thread.

Hi Voner,

I would seem to me having less sleep distrubance along with sleeping better is positive . This might be a dumb question and should Catra,
ballerina, and even CRP James chose to comment it would be appreciated,
but I wonder if the hair on one's head affects the TDCS treatment. I suppose
if one was without hair which would provide better skin contract, that might be a plus but what about long hair or thick hair. Could such affect outcome.

Joydee

Hi Joydee,

I have not read anything in scientific journals about type of hair being a factor in success or failure with tDCS.

If anybody finds something please post.

Thanks Joydee

With regards to hair...I did read (somewhere...can't remember where though) that it is important to make sure that the electrodes have as much contact with the skin as possible. So you do want to try to move as much hair as you can out of the way. Along that line of thinking I suppose it could be more difficult for someone who has really thick hair to get good skin contact where as someone with NO hair would probably have the best. It was sort of a pain for me in the beginning to figure out how to move my hair out of the way for the electrode (only one is an issue with this because I don't have any problems with hair on my forehead). I guess in this situation it is a good thing that I have fairly fine, thin hair.

I also remember reading that you want to make sure you have a nice clean spot to place the electrodes...no hair products or anything should be in your hair.

Not sure if that will help at all but that's all I know about it.

Catra: thanks for your wonderful response. it's helpful and informative.

For everyone else -- as far as hair goes -- its hould not be an issue -- you should move the hair out of the way as best as possible -- but when you use sponge electrodes just make sure they are "slightly dripping wet" as ballerina says -- i.e. and they are wet enough. Sponges soaked in wet Saline will help get around the hair issues.......

I'd love it if any other "responders" would pipe in and tell their experiences as to how they determined they were "responding"..... stories help me understand...

voner

Hi Voner,

I wish you were getting a better result but I suspect that your tenacity will pay off.

When I originally had my first experience with tDCS at Beth Israel I treated once a day for five days. I really did not see much in terms of response until the last day. The next week the relief was increased. At first the relief was so slight that I thought it was a placebo effect, (which can be very powerful.)

When I began treating myself I had a more dramatic response-changed electrode placement and increased treatment to twice a day for twenty minutes and added weeks.

Just a note about electrode placements: tDCS eliminated my tinnitus completely, but it was not with the electrode placement typically associated with reduction of tinnitus. We all have a different response to whatever electrode placements we use.

When I have gone off tDCS I have not noticed a return of some symptoms, although admittedly, falls and re injuries got me right back on treatment. I did avert a major spread by immediately resuming treatment.

Now I am treating for 40 minutes twice a day. I am trying for remission. Some of the current research suggests that longer treatments are more beneficial. My improvements continue but are slow. Unfortunately I was attacked by a dog deemed vicious and dangerous by the local Animal Control and have been recovering from that. (Doesn't that suck?) I make weekly progress. I suggest to everyone that they keep a daily diary, including triggers, injuries, no matter how slight, meds, PT, etc. and that it only be reviewed once a week. For me, after a month I was truly amazed at my progress. All things equal, nothing I had ever done (meds, treatments) had yielded the results that I got from tDCS.

The first symptom improvement I noticed was sleep improvement. I was so overjoyed by this that I did not care if tDCS improved other areas. Then of course, after each symptom reduction or elimination I got greedy and now I want remission.

One thing that seems to remain constant with everyone with CRPS is desperately seeking pain relief. Desperation has certainly been a factor with me also. What has helped me considerably was to constantly focus on treatments that would get to the root cause, rather than just get the pain. After all, the disease marches on and typically progresses even if we are getting pain relief or the pain is being covered up, whether by meds or spinal cord stimulators.

This obsession with finding a treatment to attack the root cause of CRPS, cortical reorganization, is what has kept me steeped in research since very soon after my diagnosis. I can see that you are similarly obsessed. Although I am by no means an expert on tDCS may I make a few suggestions.

If you find a protocol that is giving you any symptom reduction (find a method that works for you to determine that) try increasing treatment to 40 minutes twice a day. If you determine that you are not getting relief, try different electrode placements. (There are new ones all the time)

Don't give up yet!!!!!!!!! Better days are ahead for you!

Hi Joydee,

I finally got your PM and sent a reply.

Thanks!

Hi Daylilyfan,
I don't know how I missed your post, I apologize.

There is a lot of scientific resarch on the use of tDCS for improving memory and learning. tDCS is currently being used with excellent results for stroke patients.

One of the amazing benefits I have seen is the improvement in executive function, specifically, memory, planning, organizing, sequential processing and retaining new information. After my diagnosis with CRPS I worried that I also had dementia because my symptoms progressed so quickly. I was on Namenda for a good long while until tDCS treatments. I had big time anger since I felt that it was enough that my body was a total stranger, but I no longer knew who I was mentally.

Now I am off of Namenda. I suspect I would see even greater improvement if I went back on Namenda in addition to tDCS but there are no long term scientific studies regarding Namenda since most people taking the drug for dementia die before long term issues would be a problem.

tDCS also works very well for Fibro. That really sucks that you have CRPS and Fibro fog!!! Has to make coping tough.

I would highly recommend a trial of tDCS. It is non-invasive, has no side effects and cannot cause a spread like some invasive procedures used to treat CRPS. It is also cheap, unlike many other CRPS treatments.

Don't be surprised if your doctor is unfamiliar with or disapproves of a tDCS trial. Prior posts explain the financial politics behind medical treatments, particularly as they relate to CRPS. (Any reader who believes there is no politics involved in treatments for CRPS probably also believes in the tooth fairy.)

Hope this helps!!!!!!!!!!!!!!!!

P.S. This past week the mental improvement has really taken off. I am thrilled that I am not such a stranger to myself anymore.

Here is hoping that we may all become acquainted with the people we once were.