SleeplessinDc
 

I gotta respond to sleepless before I tune out for the nite. I want that headband you see on the EXTREMETECH website. It would solve all my hair, hands and dripping problems. You gotta go look everyone. Have a great nite. More tomorrow.:wink:

Joydee
 

Wishing you and your family lots of luck with the trip to Atlanta. I hope your husband and daughter have a safe trip. I never got to talk about the trip since we're back. I can tell you this it takes a strong person and a lot of planning to make a trip like this. Is your daughter ambulatory? Getting around atlanta airport is the most trying of the whole trip. I have some insight and be forwarned of the expanse of the place. I'd swear it is JFK and Laguardia rolled into one and spread out over 10 acres. Anyway, this is not the place to talk about it. If you'd like info send me private note and I'll be happy to help. To bad you aren't traveling with them. I know since you do all the talking on here you would get great insight into Dr Fugedy if you were there. You'd get to see what it is we talk about him. Since you're not going rest assured they are in good hands. He'll do whatever he can to make her life better if that's in the cards. Wishing you all the best.:)

Hi,

Before I begin I hope you received my private message, I am still getting the
hang of it and always wonder if they went through. If you don't mind
I will share some of what I said in the private message with the rest of the
group interested in TDCS. We had reset the date of the consult with Doc
Fugedy but I called today to set the hour and Doc and I spoke for a bit.
I shared with him some were not having a response as hoped and he says
in essense it is very important to just keep repeating the procedure. My
understanding of what he was saying is that some in other countries are
doing it as long as six weeks. He also mentioned another protocal but
I am uncertain of the details and for this reason do not want to say much
about it, but did understand it involved placing one of the electrodes
directly on the spine. Cathodal I think he said but do more research etc
before any expermination takes place since I know very little.

When it comes to continued treatments in the face of seemingly not getting
a response I think we have but to look to our friend ballernia. Doc Fugedy
pointed out her term use and the improvement she has had from that long
term use.

I think he has a strong point. Playing devils advocate lets just say when
ballerina began treatments she experiences remarkable process but say
she decided that improvement was good enough so cut down on her
methods. The question then arises had she ceased those repeated
treatments day after day would she have continued to experience
improvement. What I am saying is although there might appear to be
no response we can not always tell what changes are taking place and
how much help one is giving the brain a chance to change direction.

Also just in case you did not get my private message Doc suggested wrapping the ace bandage around the head first, not to tight then
insert the electrodes. Doing it that way provides a better cushion and
more support and lessens the risk of the electrode from slipping from
its correct postion.

:hug:Joydee

Tdcs: Keep at it
 

If I had given up after the first few weeks, even after a month I would still be in the wheelchair and have a useless hand and arm.

My CRPS led me to a Boston Scientific Spinal Cord Stimulator, which required "revisions" which caused spreads and left me in the wheelchair. One of the spreads went to my wrist and hand. The pain was so intense that the doctor had the nerve to suggest that I get a second stimulator to treat the pain caused by the first.

tDCS gave me a second chance that most people with CRPS who experience the typical failure rate of spinal cord stimulators don't get.

I followed Ballerina's advice and keep a daily log-nothing special, just things like sleep, pain level, activity level, headaches, and what I call sweat flashes.
I also did not look at the log but one time a week as Ballerina suggested. Improvement was slow at first, in fact I was not even sure if it was just wishful thinking. My emotions were all over the place. I was so distraught that I had suggested that others have Spinal Cord Stimulators (prior to mine failing after less than two years and learning that what I experienced with the SCS was quite common)

What I finally did was to just make the treatments part of my daily routine, like brushing my teeth. I tried not to attach any more emotions to the treatments than I would to brushing my teeth. I tried not to look back and forgave myself for sending others down the same path with the SCS.

I still do the daily log. I want to be able to remember the date that I give up the cane for good.

By the way. That useless hand compliments the failed spinal cord stimulator? I am pitching ball to all the neighborhood kids, using a glove and no cane.

Where would I be if I gave up. Still in the wheelchair.

I never thought the atrophy would resolve-it was so bad. (use it or loose it) But the muscles woke up as soon as I started using them again.

I take breaks from treatments now, although I do not know what the booster schedule should be. I don't wait for symptoms to return. In fact I truly believe that many of the symptoms are gone for good. I treat three times a week twice a day for twenty minutes for a couple of weeks. Then I return to a full week then back to three times a week. I am still making progress even on this booster schedule.

Sure beats recharging a stimulator and always having to have the remote handy. Also beats doing a treatment (stimulator) that does not stop the progression of CRPS, can cause dangerous spreads, revisions, battery replacement surgeries and is invasive.

Please keep at it. You can always change protocols, which are emerging all the time. You are also fortunate to have a doc who obviously is at the top of his game!

Hope this helps!

Sould I be going this twice a day?
 

Hi,
So still not getting anywhere with the tx, Doc fugedy said to only do it once a day but it seems like the people having success are doing it twice a day..And if I do do it twice a day how many hours in between ...I have to run it for 40 min at 1.0......would 7 hrs be ok?

Thanks for any info

Debbie

That should be fine Debbie. I usually do mine at 8 and 4...but sometimes at 10 and 5. I try to do my treatments around my boyfriend's schedule so that he's not distracting me while I'm doing a treatment. I like it nice and peaceful with nothing going on while I do the treatments. I would guess that you would likely still get results at once a day...but it might take longer to get them (total assumption on my part no based on anything I have read). But if you are able to do treatments twice a day then that might work better so it might be worth a shot. Unless there was some particular reason that Fugedy only wanted you to do once a day...that I wouldn't know. But you could always call him up and ask him, right?

Hi Deb,

The rust is falling from the brain gears here but didn't you mention that Dr. Fugedy started you out at 1.0 because of irritation???? I would give him a call and ask if it is ok to go up to 2.0 twice a day for twenty minutes each.
The current research is suggesting better results with treating for more weeks than was done in early clinical trials.

I have been treating fairly regularly since November and I am still seeing improvements. I might go for several weeks with no change and then it kicks in. How many weeks did he suggest you treat before you might see improvement?

Don' get discouraged. Even if the current electrode placement does not work there are other ones to try.

Put in that call the Fugedy-yes even on a Saturday.

Hi
 

When I try and go up in strength I stil get irritation so I need to leave it at 1.0. I am in so much pain when I sleep. My neck gets really stiff and hard to move. I can't take this!!1

Deb

Then definitely leave it at 1.0 but I would still try doing it twice a day. It may take a while to get results but they are worth the wait. I liked James's suggestion about just making it part of the daily routine and not EXPECTING any specific result. Much of the progress is slow and gradual...hardly noticeable at first. It was like that for me with the sleep and also with the differences in the number and length of the pain flares. If I hadn't been keeping track of that stuff in my journal I don't know that I would have noticed the changes right away. Well...I may have noticed the sleep changes but even that was gradual. You've had this for a while so it may take some time.

I've only had RSD for 2.5 years and my spread only started last year (only...god it feels like a lifetime). My hands and arms were the last affected by the spread and that's where my greatest relief has been. So don't be discouraged. Keep at it...wish it worked faster but we have to take this all as it comes.

All you guys totally amaze me. You all so complement each other, what one leaves out the other picks up on. We newbies are so greatful for the support and help in accomplishing this towering of obstacles. Joybee, thank you I got the message. I do exactly that, put on an ace bandage first then tuck in the "pods" (my word) then as the fluid runs down my face and neck I tie on a tighter one so that the whole pod is pressed against my head. All while my hair is getting pulled or tucked. I only hope and wonder do I have it in the right location. So I muttle thru and hope it's wet enough because I don't want to take it off and start all over. I think I'll shave my head lol. James thank you so much I needed that encouragement. It really got my blood boiling on myself. I did want to keep a journal but when I was not seeing any decrease in pain I assumed it meant nothing changed. Then I read about all the other aspects of this disease that you have all had improvement in and realized then, the other things I have besides pain may be affected first. It's very possible that could happen to Deb also. She too has so many things affected she may not notice any changes unless she kept a journal. GET TO IT DEB. I promise I'll keep a stiff upper lip and go on as if I was doing my hair for the nite. Great idea james, making it a regular routine. I love to hear how far you have all come. You make this procedure bearable. Thanks so much.

Hi,

In my research I recall there were some reports made about slight irrigation
to the skin during some of the trials. It may be semantics but in your
post you used the work burning. I wonder if you could build up a resistence
to the burning caused by higher current through use of subtances like Aloe Vera. Not only does this natural substance ease burns but is healing, and
the healing aspect of it may also serve to give better resistence to the
effects of the electrical current. Most health food stores carry this in
a gel form. Of course you would not want to apply it before a treatment.
rather after.

Regardless, please keep at it, and know healing thoughst and prayers
to being directed to you.

:hug:Joydee

Thanks..opposite today
 

So today when I plugged in I hardly felt anything, now I am worried that's it's not working correctly! I turned it up to 2 and really felt nothing. Is there a way to make sure it's working ? The device showed it was running correctly,,no errors. Any thoughts?

Debbie

Have you called Dr. Fugedy? You may be adjusting and that is why you are not feeling anything. I feel nothing now. If you are feeling no irritation now he may suggest upping to 2 mA twice a day for twenty minutes.

Doc
 

Yes I spke to him and he said I could do it twice a day at either strength,,,I just wanted to make sure the device is working ok. last night at 1,0 I had a big red irritation on my forehead ,,,today I felt almost nothing at 2...

Thanks
Debbie

Hi,

Have I understood Deb. You say one evening you tried a lower setting
and noted a red irritation on your forehead but the next day when you
increased to 2 you felt nothing. Do you mean with a 2 setting your
skin did not have a reaction? If this is the case it may be the repeated
treatments with the device is working to densenatize. That would
be a postive and might even be considered a response to treatment.

Conversely, there may actually be a problem with the function of the
unit. No device is immune to malfunction. Do you have the telephone
number of the manufactor who made the device. You might call them
and explain the problem. They may be able to direct you to a local
repair shop in the area who could use there testing instuments to see
it the current is acually getting through the device.

:hug:Joydee

I think it's always good to double check the device to make sure everything is functioning properly. I have found that since I have gotten the hang of the placements and how much saline to use that I don't really "feel" anything either during the treatments. If something is wrong the device beeps at me (this happened a number of times in the beginning when I was still finding my way). Do you think you might have done anything differently like used more saline or had the straps adjusted differently? As said...you could just be getting used to it. Joydee's suggestion about calling the manufacturer is a good one too if you are worried. It's one of those things where not being in your shoes no one else can really judge because any of these things are possible.

Ty
 

T
Thanks for your ideas. Tonight I still did not feel anything at 1 or2 so I ran it at 2. After the tx my forehead was redish square where the pad was and mildly irritated,,,go figure. I'm gonna call fugedy tomorrow.
Deb

Silly Deb
 

Have no fear Irene is here. I'l bring mine over and we can test yours out to be sure. I know mentally we'll never be happy if there is any doubt about a malfunction. I said that to you yeaterday, by now you should have been able to tolerate the 2 amp without the burning. Guess what maybe you didn't make it as tight and it made all the diff. We'll do a test run asap. Hang in there.:)

I have been so inspired by Catra that I too am pondering a return to work!!!!!! I don't know how yet but each week more miserable symptoms cease. When I hear newly diagnosed folks make post after post asking for help with each new symptom, and my own symptoms are leaving I know I should be happy with my progress due to tDCS. I am happy but not content.

My doc is willing to release me if I can reverse the balance problems caused by the spinal cord stimulator. I am now spending lots of time without my cane. Each week my balance improves. I am also working hard on my lower body strength now that the atrophy is totally gone. My once useless hand which had a severe spread due to the spinal cord stimulator is now 100% BACK TO NORMAL. (And to think that a popular treatment protocol for spreads induced by spinal cord stimulators is to install another stimulator!) Where would I be now if I had done that? When I look at my wrists now I have to think about it for a second to remember which hand was hopelessly painful and atrophied.

At this rate I am thinking about returning to work in the fall.

I am planning to be right behind you Catra! Please let us know how your meeting with you employer went today.

I am so happy for you James. I really hope that you will be able to return to work in the fall like you want to.

The meeting with my employer this morning seemed like it went okay, though I admit that I was disappointed that there was no resolution to the situation proposed and it was only a meeting for them to gather additional information from me. That was not what I was led to believe it would be and I am a little miffed at the 2 hour drive each way for the 35 minute meeting....but it is what it is. I was told that I would be contacted in a couple of days after the HR guy discusses everything with his supervisor so we shall see. I am so anxious to return and get back to it.

Hi
 

That's great to hear James! What protocol r u using?

My current placement is Anodal electrode on left frontal cortex. reference electrode on right upper arm. I am currently focusing on my difficulty with word naming and other cognitive issues.

Hi
 

Which protocol helped with your muscles?

Deb

I don't have a scientifically proven answer to that but I believe what helped the muscles was making myself use them, getting out of the wheelchair and off of the recliner. I was absolutely miserable and the pain was excruciating.

I would ask Dr. Fugedy what electrode placement is the best for muscles. I have not come across the answer to your question in my research.

As far as my research goes it seems to be the old "use it or loose it" at work here not CRPS just killing the muscles. Wish I had an easier answer to your question.

The best explanation of this process is detailed by Catra's journey, one step at a time, every day no matter what. Misery, yes, effective, yes.

Additionally, I believe depression was a factor. I was so beaten down by being put in the wheelchair by the SCS, a treatment that doctors assured me would be successful since I had a "successful" trial.

Hope this helps!

James I tell Deb that everyday, use it or lose it. Thank goodness she has to go to work everyday, it gets her out of bed and moving. If she was a home body her pain would have her on the couch all day. She just can't get past the god awful pain to push on. She's a trooper and a great friend and we push each other.
Question for you, do you know why some crps people have a balance problem and others don't? I've seen a lot of posts about having control over balance, why is our balance system effected? I was always told my short circuit of central nervous system caused my imbalance but when I see rsd people have the same thing I have to assume mine is also from rsd. Does anyone know why?????
We fixed Debs machine problem I believe, but we both still have not seen any improvement at this time. Will keep up the good work and pray for some kind of improvement soon. Thanks all.;)

I've only ever heard one theory on the balance issue and never seen anything to back it up (haven't looked though either besides a search online to see if the balance problems I was having were in fact related to the RSD). The theory says that because of how messed up the signals are that are coming from our brains (with the pain signals and all that) that there is a slight delay in the signals to "move" going to the RSD side, causing the imbalance. This makes some degree of sense to me because my RSD is in my left foot and I tend to fall to my right side...the rest of my body is moving forward with the motion of movement but my left foot is ever so slightly behind which causes me to fall. I have no idea if this theory is backed up by any sort of proof and would definitely be interested in hearing the "real" answer...but figured I would share this little theory anyway. I cannot for the life of me remember WHERE I read this btw...I read it back when I was in the midst of the worst period of time last year with spread and seratonin syndrome and all that. Many of my memories from that period of time are just GONE. But when people ask about the balance issues that's usually what I tell them and it seems to be something they can understand and wrap their heads around. Not that I want to be spreading false information...I really don't know whether this is the real reason for the balance problems or not...but it's an interesting idea...

Last night I had my first major flare up in my arm since I've gotten the pain relief in that area. I am pretty sure I know exactly what did it too. I went to the grocery store and didn't pay attention when they were bagging things up. The idiot bagger put all TEN of my Vitamin Waters in ONE bag. That has never happened before in the many times I have bought them there. They always use 2 bags (5 in each) and that's never been an issue. He even double bagged the one bag with ten so it's not like he was even saving bags. I do not know what he was thinking. I carried that bag into the house with my left hand and that's the one that had the flare last night. I should have rebagged it before carrying it in...hindisght is always 20/20.

Anyway...it was a really BAD flare. Arm turned cold, pain at level 10 (plus 100), swelling, etc...I was actually crying which doesn't happen often anymore from the pain. But I sucked it up, got myself a Lidoderm patch (the pain was so bad applying it I thought cutting the hand off would have been less painful), wrapped it in the self stick first aid tape (LOVE this stuff...doesn't stick to my skin at all), slapped a heating patch on, and used my flexible wrist brace. I haven't worn this brace in over a year but did not want to wake up with my wrist in a wack position, plus it helped secured the heating patch and stuff. I like the flexible ones though because they still allow me to move the wrist and hand, just limit the movement. I actually was able to sleep a solid 6 hours last night even with the flare. This morning it is better. Still worse than normal but after taking a hot bath and using the ultrasound it's not too bad compared to normal.

I'm keeping my TENS off the ankle today so I have it available for my wrist throughout the day. It's more troublesome to try and use on my wrist because even at twice their normal size my wrists are still tiny...but it's worth going through it when I have a flare like this. And hopefully by the end of the day I will be back to "normal." Right now I have nothing on the wrist though and have been working on some PT exercises with it.

As much as all this sucks though...still some positives. First, prior to tDCS there is no way that overnight my flare would have calmed down so much. Second, no way prior to tDCS treatments that I would have slept 6 straight hours with a flare like this. Third, one really bad flare in ONE of my arms in several months...that really is not bad at all considering how things used to be.

It was a horrible reminder though to be continually grateful for the lower pain levels I've been having now for the past month or two. I'm sure I feel the flares worse now because of that. When you live with the pain always at a high level there is a sort of acceptance that comes with it. Now...it's different when the pain gets that high...especially when it comes on suddenly as opposed to a gradual increasing throughout the day like normally happens with my ankle or my hands when I am doing various activities.

Sorry it's not the best news but wanted to share the experience with you guys. Flares still do happen and it's still important to be careful and be ready to deal with them whenever they come...no matter how agonizing that may be (like was the case with putting that darn lidoderm patch on...hurt like heck but once it was on it did help). I'm glad I bought more heating patches on my last grocery shopping trip...would have been a different situation if I didn't have any on hand...

Amazing Catra
 

You are just so inspiring. You made my day again with hope of some improvement with the tDCS. I wish everyone could be as upbeat as you are when it comes to getting past the pain. Most people would have curled up in bed or the couch for the day with your pain level but you pushed on to the bath, pt. the patches and still had the ambishion to write on here. AMAZING. So sorry you had to go thru all this. Wish we could all take a little piece of the pain to make it go away. Did you use the tDCS machine also or do you plan to? Is this when you return to using the machine as a booster? I really am praying that you feel better soon and that along the way some good comes out of my treatments. Fell Better Catra you deserve it.:)

I have continued to just do the two treatments a day at 20 minutes each. I don't alter that in any way when I have a flare up...just continue as usual. Every once in a while I may miss a session because of my schedule or if my boyfriend is off for the day...but that is a VERY rare occurance. Otherwise it's twice a day every day...which is why I think I continue to see the improvements with the sleep and the reduced sensitivity continues to travel up my arms (sort of in the reverse path of the way it spread).

It's easy to give in the pain and not do anything but harder to suck it up and do what I need to to address the flare ups of pain...but I know I need to do it. If I let myself get away with not doing it once, it will be easier to not do it the next time. The results I think show that this is all worth it...but I admit that sometimes in those moments of pain where it is so bad you can't see straight that it takes a LOT to make myself do what I have to. I try, in those moments, to remember the wheelchair and how helpless I was...that's usually the best motivation to push through the pain because as I recall even when I was useless and not able to move I wasn't in any LESS pain.

Good news is that the pain is definitely returning to its normal levels right now...which is a relief. The swelling all seems to have gone down and the burning pain is MUCH better. Thanks for your kind words Hampster...but I wouldn't want anyone to have to take on any of my pain. We all have our own to deal with and I am so grateful that this is no longer an all day every day occurance with the level 10 pain...because it was for a really long time. Slowly but surely...things are getting better. :)

Catra,

You are so amazing!!!!!! You will be back in the saddle in no time.

I guess flares are catching. For the second time in less than two months I came out on the wrong end of a dog encounter yesterday that resulted in a severe injury.

Something is wrong with this picture.

My neighbors five month old golden retriever has been fond of racing out into the street jumping on me and my service dog. I have explained repeatedly to my neighbor that I have a severe neurological problem that effects my balance and would she please restrain her dog. I even went into specific detail as to what my dog has been individually trained to do for me, i.e. help with undressing, opening cabinet doors, balancing me, pulling laundry out of the washing machine. (Her response to that was "I'll have to train my dog to do those things too" as she laughed. She can't even train her dog to sit on command)

The puppy is now as big as my service dog and ran out and repeatedly jumped on my dog and me and it knocked me to the ground causing cuts, bruises and by this morning, purple leg, on fire and allodynia. I cry when I put weight on it. I unfortunately have pretty much a full body response, joints, arms legs, you name it.

When the woman finally came to control her dog she became entangled in my dog's leash which was attached to my waist since I cannot hold a leash. When she finally got loose and grabbed her dog I showed her my pepper spray, (which I should have used on the dog before it injured me) and informed her that if it happened again her dog would be pepper sprayed.

The woman did what she always does-apologized. Big deal! I called Animal Control who immediately remembered my being attacked by a dog deemed dangerous by Animal Control within the last two months. They don't look kindly on service dogs and their disabled owners being threatened or injured by unrestrained dogs. Animal Control immediately sent an officer to the home to explain the importance of leashing the dogs at all times, as well as to explain the consequences should it happen again.

During dinner last evening the woman's husband began banging on our door with his fist. To make a long story short he screamed at us, "What kind of people are you to call Animal Control on a puppy, You are Crazy." He also indicated that it was my fault because I walk my dog past his house which encourages his do to run out and jump on me. It gets worse but more of the same. He suggested that he would inform the other neighbors of my actions.

I feel like I am living on a strange planet.

After a trip to my PCP and consultation with my PM doc I have gone into flare control mode. Also taking a heavy duty anti inflam drug to knock down the CRPS inflammatory response.

Of all the stupid things I have done since my diagnosis, not nailing this dog before it hurt me takes the cake.

I am doing tDCS twice a day for 40 minutes, mirror therapy and epsom salts baths and like Catra, physical therapy. Thanks to Catra's prior posts I have snatched up some of her suggestions for beginning leg PT exercises since my knowledge consists of upper limb PT. Thanks Catra!

I had gotten to the point where my pain level was down to a 2 when I woke up in the morning. How stupid that I let myself become injured by an irresponsible dog owner's dog simply because it was a puppy and I did not want to stir up my neighbors. (particularly since the husband had been arrested for domestic violence) Stupid, Stupid, Stupid!!!

I won't make that mistake again.

Ok Catra, time for us to do some serious damage control!!!!!

Oh my goodness...I am SO sorry to hear about this! I don't know what goes through people's mind these days. It's very simple...leash your pet or keep them in a fenced yard. This is not the first time with this dog either so for that man to be upset with you is just absolutely ridiculous. If I were his neighbor and he told ME about the horrible lady with the service dog who called Animal Control on him...well...let's just say I would definitely have a few choice words for HIM. It is indeed a strange world we live in and I honestly just don't "get" some people.

I'll be praying for your speedy recovery.

ballerina
 

How awful for you to have this happen. So funny, as I was reading your post I was thinking about my aunt who had the same thing happen to her yesterday only she got bit by the dog. The neighbors dog is very viscious and was charging at my sister and to distract the dog my aunt used some food hoping the dog would go in the other direction but he grabbed her arm instead. She ended up in the ER all day and got 8 stitches from the tear he made. Her arm will never be the same. But she won't mind she's 90 yrs old and at times doesn't even remember what happen to her. My point, you never know what your neighbors dog is capable of so be AWARE next time he may do more then knock you down. This all happen even with a fence seperating them and the dog tied to a BBQ which he was dragging behind him Can you believe it? Anyway I hope you're feeling better soon.

I'm interested in the fact you have a service dog to begin with. You must have had to jump thru hoops to get one, how did you accomplish that? You said he helps you with balance, have you had any improvement in balance since you started with the tDCS treatment? If you have major improvements will you end up giving up the dog? I wish you all the best in your improvement. I hope it continues and maybe someday you won't need help opening a cabinet or getting dressed. Hoping for a pain free day tomorrow. :hug:

I am fortunate to have a young cracker jack neurologist on my treatment team who is one of the docs who suggested a service dog early on when I was experiencing such severe balance issues thanks to the CRPS rogue autonomic system issues. I was initially resistant to this for a variety of reasons but eventually decided to apply for a dog. What I quickly learned was that I could have a five year wait to get one, or I could shell out from $40,000 to $60,000 to get one sooner. Given that so many of the breeds that are routinely used for service dogs are "cancer factories" I saw both options as too risky (In addition to the fact that it was out of the question financially.)

Since both options were not the best I kept digging and discovered a non profit group that teaches folks with disabilities to train their own dogs. I was skeptical because I had such severe limitations, but since I have had extensive experience with training dogs I kept learning. What I discovered is that people who have no arms, people in wheelchairs, even people with speech impediments have successfully trained their own dogs.

Like everything else related to my journey with CRPS intensive research has always paid off.

The result is Tootsie. It wasn't easy, in fact it was at times overwhelming.

My balance has greatly improved while on tDCS. Many of the more miserable autonomic system symptoms compliment of CRPS are totally gone. I am puzzled as to why I have not yet licked the balance issue but I am confident that I will.

The one thing I am obsessed about is beating the odds, beating the system, beating the insurance companies, beating SSDI, beating the doctors, beating the CRPS menu of treatments that have little hope of helping and great risk of making me worse, beating every road block, etc., etc., etc.

Having a service dog is a small but effective weapon. If I attain remission or even partial remission (not sure what that means but it sounds good) I will still be reliant on her. One of the things she does for me is to keep people away from me when I am in public. It is amazing, but when I was only using a cane mothers would look on as their children ran crashing in to me. People would run into me with carts, etc.

I do not under estimate the effects of being bumped into by others. Even though I limit my outings in places like Walmart, when I do go, no one comes near me now. Mothers grab their children, even people I know just smile or wave and keep on going. It used to be that people I knew would stop to chat and invariably try to hug me or pat me on the shoulder. Additionally, people go out of their way to steer their shopping carts in another direction.

I don't advocate that everybody with CRPS should consider a dog or even that they train their own. Training your own dog takes a major commitment of time not only to do the training but to learn how to do it, in addition to keeping up with the training on a daily basis. You have to be highly disciplined because training must happen every day no matter how much pain you are in.

Will there come a time when Tootsie races across the room roused from a deep sleep by a fork I have dropped on the floor. Probably never because she has been highly trained to not only respond to that, but it is her work and she loves it. I do hope that there will come a time when I routinely pick up things that I drop.

In addition to many symptom reductions thanks to tDCS I have also experienced a drastic decrease in the frequency of dropped items. Could tDCS put Tootsie out of a job? I used to think that CRPS was job security for her. Now I am not so sure. At any rate giving her up would never be an option even if I was cured tomorrow.

Wow Hampster, you ask some good questions!

What ever you do do not give up your tDCS treatments! If one electrode montage doesn't work there are more to try!!!!!!!

Hugs to you!

ballerina & tootsie
 

Three cheers for tootsie. Thank goodness for the opportunity to have all the options available. She is so lucky to have you as her owner and trainer. Please do not ever give up coming to this thread no matter how much better you get. You, Catra and James are so much help to those of us who lose a little hope once in awhile. Today marks 3 wks. since starting tDCS and I do have great faith that I will get some form of improvement soon. Thanks so much. Have a great Holiday w/e and hopefully you'll be pain free. Hugs also.:hug:

Tdcs
 

Hi TDCS folks,

Well wish us luck, or more correct wish my daughter luck. She and
my husband will be flying out tomorrow on their way to Atlanta for
a consult with Doc Fugedy. I wish I could go as well. It would
have been nice to meet the good Doc. I had spoken with him
several times and each time I hung up more impressed by his
knowledge. However, my son in law needs help with my grandchildren
while my daughter is away.

I am assuming one treatment will be given and she will come home
with the unit much like in the case of Hampster and Debbie who
continued the trial at home.

:hug: to all Joydee

I will be wishing your daughter luck and sending good thoughts and wishes her way.

Sad
 

Well it's been over three weeks two times a day and nothing, Nothing works for me! So frustrating

:hug:

Oh Deb...I'm so sorry. Please try not to let yourself get too down. Have you spoken to Dr. Fugedy lately to get his thoughts? Maybe trying a different protocol at this point would be in order. It seems that everyone responds to different protocols so maybe this one just isn't "the one." You've got a great resource in Dr. Fugedy so make sure to use him as much as possible. For me, it was my second protocol that worked the best. I was disappointed with the initial results but after two weeks made the change. And I know ballerina has tried out several different ones with varying levels of success. Unfortunately this is not yet an exact science. We're here for you though so if you need anything please let us know.

Ty
 

Thanks for your response,,,fugedy said to give it 4-6 weeks so I am waiting,,,can I ask what protocol did help u? where did u put the electrodes?

I am currenty using the M1 and S2 protocol: cathode over right eye and anode over left ear. Every other week I switch it so that the cathode is over my left eye and anode over my right ear. I do this because I have RSD on both sides of my upper body and I have noticed improvement on both sides.

If Dr. Fugedy said to wait then stay hopeful and keep at it. Many of the best improvements came after a month or so of treatment...and the sleep improvements didn't start until 2 months in or so (and I'm still getting better with that). So keep at it and don't stress. Good things are worth waiting for. :)