Kudos to you both. We just love hearing about the great strides you've made. You both deserve the tremendous improvement and feeling of pride in what you have accomplished. Great job. BUT, how is it possible that Deb and I have had no change what so ever? What are we doing wrong and what can we do to cause some kind of change? We're sticking with it and don't want to or plan to give up, but we are both very discouraged and disappointed. I guess we put so much hope into the treatment and are so hurt that it's not going like we envishioned. We're both thinking we're just not placing the pads correctly or not treating often enough or just using the wrong protocol. We're only on our second placement but is it the right one. Who knows? I'm even questioning do I use water or saline, is the placement tight enough. How critical is it having the pads in the exact spot? We are really at a loss and are keeping our fingers and toes crossed for the moment. I really am so happy for you both to have had the treatment work for you and you are able to make such changes in your life for the better. Goooo potatoe salad.

I would say that it's very possible that it will take longer for you to see the progress. As happy as I am about my improvement...I think it's important to remember that the greatest improvement in the pain was in areas that I had RSD for less than a year and it's only in the sensitivity. I still have the burning constant pain...but that just seems so much more bearable without the extreme sensitivity. Not that I want to minimize the success because I am so thrilled with it...but if you both have had RSD in the same area for a very long time then it may just take a while to see those sorts of results. The sleep is a big thing for me...but that took a couple of months before I saw any improvements. Fewer flares that last less time is another big thing but again...that took a while before I saw it.

I also think that for me it was easier to see some of the improvements with the pain because I am not taking any pills/meds to help with the pain other than the Lidoderm patches. I think if you are on lots of meds that have been keeping that pain level lower then maybe it would be harder to notice slight improvements. I don't know if this makes a difference or not but it could be another factor that impacts noticeable relief. I would say that my pain level now is normally around a 5-8 except when I get flares and then it's back up to that 9-10 level. If you already have something that is helping to relieve the pain then it might be harder to notice some of the changes because they might not seem as large.

As far as placements...I can't really address the questions there. I've been doing this all on my own so I couldn't even tell you if I am technically doing it right. I don't measure each and every time I place the electrodes...I just feel like I know the right spot from doing it for so long. Not very scientific of me but I figure if it's working then it's gotta be alright.

I would caution you and everyone else who is trying this to not stress out too much about the small details. Seriously...the more you stress and worry the more you're going to aggravate your RSD and possibly offset any improvements you might be having. We all know what stress can do to our RSD. I approached the whole thing as, "If it works, great. If not, then I'm no worse off than before." I was hopeful and optimistic but I never got myself too worried about whether I was placing the electrodes perfectly or whether I should use saline or something else or whether this protocol was the right one or if I should already be trying the next. I knew there were other protocols and IF it didn't work then I could switch (which I did) but I didn't stress about it.

And remember...even though I am back at work and all that...I am not 100% better. I still need to use the walker, I still have to suit up with lidoderm patches and all that before I go to work, I still have pain and balance problems. I still think of tDCS as a miracle and I continue to see improvements...but they're not always the ones that I might wish for. I would love more pain relief...but instead I am mostly seeing more sleep (which is awesome and I'm not complaining) and less flares (also awesome). James is seeing far more improvement in many areas than I am but he's also got a few months of treatment on me, as does ballerina of course.

So seriously...try not to stress out about all the small details and seeing improvements in the areas that you are looking for improvement. Give this new protocol a good shot and continue to be focused on your health. I was very involved in all my other treatments (physical therapy, hot baths in epsom salts, TENS, ultrasound, etc) all while I was doing the tDCS treatments. By pushing myself with those I was also able to see improvement. My pain wasn't really noticeably different sitting still on the couch. It was noticeable when I was pushing myself to DO stuff. If you can find other treatments or exercises to focus on instead of obessing over the tDCS details then maybe that will help. Take each day as it comes, track your progress, and hopefully you will start to see improvements in the coming months. And it might very well be months before you see noticeable changes so don't get discouraged if you don't see them right away.

Just my thoughts on everything...for what it's worth. I hope that you both see improvements soon but with tDCS it's the long term results that are most important.

Okay...time to get ready for work. I didn't get home last night until 2am from work and I'm afraid that it looks like tonight will be much the same. It's gonna be a long one...

Thank you sooooo much. You really did make a big difference. I will try to stress less and keep up the hopes of improvement. You really hit the nail on the head in covering all my displeasure. Your suggestion to focus on other activity goes a long way, and it does work because at times I am able to just turn off the pain mode and just push thru. By the way what do you do and where do you work? I don't think I remember you says what it is you do. It sounds exhausting and physically draining, how do you do it????? Again, thank you and I will keep you posted.

I'm an assistant store manager for a big box retail store. It is a very physical job and I am literally on my feet for 9+ hours a day and am lucky if I sit 30 minutes during that entire shift...usually just a minute or two at a time to check sales, email, etc. And that doesn't take into account the fixture moves, putting out product, etc which are all very taxing on me physically.

The good news is that in my 2 weeks now back at work I've been able to work in all of my departments and do projects and it seems to be going okay. I obviously have to do things differently since I need to use the walker but the important thing is that I can still DO them. I actually did a couple of "carry outs" for customers and "carried" their vacuums and steam cleaners to the car...by which I mean I put then on my walker and pushed them out there. I'm making it work. It's still frustrating because I was so much faster and could do things so much easier before...the walker is a real pain. But it is what it is. The more I do things, the more efficient I will get at doing them this new way.

I honestly don't really know how I am doing it...i just keep pushing through. I really love my job and what I do so that helps...and when I am working there are so many other things to focus on besides the pain that I really don't feel it until the drive home (it's an hour commute now for me).

I'm still playing with the best way to use the various treatments for work. I've been wearing the TENS all day at work but I've still been getting bad flares and swelling at the end of the day. Today I wore a lidoderm patch on my ankle instead and am wearing the TENS now that I amx home. This may be the better way to go. My pain levels are higher at work but with the lidoderm patches on I don't seem to go into those flares. I've been wearing them on my arms every day and they seem to help with the pain there. I don't know...I keep playing with it.

Yesterday and today were my first closing shifts since I've been back and both were unfortunately late nights where we didn't get out until 1am and 12:30am. So I'm pretty tired and I think my strategies for closing shifts, weekends, project days, and meeting days will all need to be a little different. Thankfully my body is adjusting to the physical activity well and after two weeks I'm not really feeling any soreness anymore and it's just the RSD that I'm dealing with.

Sorry...I tend to babble a bit this late at night...

Hi everybody,
I hope you are all progressing towards wellness. This is just a brief hello to say that I am back. You have all remained close to my hearts. This is a wonderful forum offering hope to those who thought it once impossible, including myself. I am very grateful for all Ballerina's work and her inspiring spirit which has spread through all of us. It has indeed kept me going through the most difficult times. God bless all and may healing come soon to every single one of you.
Warm regards, hope and peace,
Nick

still not working for me...so depressing as I continue to deteriorate. I really need this to work!

Debbie

Dear Debbie
Do not give up. We may not all be built exactly the same but we're all from the same factory, we're all human. Our individuality and the time course we've endured our conditions necessarily have a bearing on variables such as electrode positions, current density, length and frequency of treatment, etc.
I hope to apply tDCS for tinnitus. In the studies there are many individual factors why some respond and others don't. Maybe given the correct protocol, we are ALL responders, all healers. So maybe it is our task to try out different protocols until we hit the right one. There lies hope.

It would be interesting to learn what works for whom and for someone to tabulate the data as a cross-reference guide. My own experience has become more severe and gives me no choice but to give it a big try. How long have you been using tDCS, with what equipment and what protocols?
Please don't despair, the science is solid and I think we can all be responders,
no matter how resilient the condition appears to be.

Hi,

I agree with what Nick Allen said. As can be seen by fellow board
members who may have expected to hear how my daughter is coming
with her trial using TDCS nothing has been posted. This is due to
Murphy. Everyone knows Murphy, he or she is that hidden element which
seems to make things go wrong even when we humans try to make them
go right. It has been sixteen days since beginnig first protocal but
Murphy and his law has seen to it than nothing runs smooth. First of
all at consultation time my daughter suffered a migrane so Doc Fugedy
gave her two treatments, one designed for the headache and she
was to proceed with one protocal for her CRPS. Then she had some
problems with burning since the Doc first advised just water so she
started using Saline. However as treatments proceeded she kept
having headache,s. She E-mailed the Doc but both played E-mail tag
or phone tag, unsure if both.

In addition, I suppose despite the pain involved there is still humor.
I certainly got a chuckle out of my daughters account of what happened
during one E-mail to the Doc. She had typed out his name but was
using auto correct. She meant to say hello Doctor Fugedy but the
auto correct changed what she typed to "digest" so the E-mail said
Hello Dr. Digest. My daugther quicky sent anorher E-mail explaining
the error to the Doc but when my daugter shared with me the event
I could not help but wonder if when the good Doc first looked and
the E-maill if he thought to himself. I am not a Gastro Doc, rather
a PM Doc.

Of course due to the continued headaches the Doc then reasoned
in light of the problems it might be a good Idea for now to use the
migrane protocal if I am understanding correctly but over one week
end my daughter and the rest of the family went to a family reunion
in the park and since she was out in the sun for hours had a sun burn
on her head so took a couple days off. She has resummed with
the new protocal but with all the delays and dealing with Murphy
it is much to soon to tell anything at this point in time. I however
continue to have faith in the possibilites presnted with TDCS and
complety agree with Nick Allen. My prayer is that everyone will
be responders to TCDS at some future point in time. to all.

I keep praying for your success Debbie. Keep at it...

Hi everyone, I am a new member but have been reading consistantly the past few days and decided to join. My Mom has RSD stage 3, she's had countless doctors in a number of states that have tried nerve blocks, EEGs (several times, I think that's what its called, where they test the nerve), she is on a slew of narcotics (morphine, percocet, and the marijuana pill) with no relief, she also has fibro, seizures, and from my research I think gastropherisis.

I've done a lot of reading and followed a few of your stories with your success with tDCS, the next step her dr is looking at is radiofrequency neurotomy, which I have read the best results from this procedure.

She has a TENS unit, but from what im gathering the TENS unit and a tdcs device are two different things right? If anyone can point me in the right direction as to where I can purchase a tdcs device and the protocols for the certain placements for pain relief I would GREATLY appreciate it.

Thank you all and gentle hugs!