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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

t.D.C.S. Update Could remission be within my reach and your's too?

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Unread 03-16-2012, 07:43 AM   #191
catra121
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Congrats!! That is fantastic. I definitely know what you mean about how fun and exciting those "mundane" activities can be. After spending months and months in a wheelchair I remember being terribly excited when I was able to reach into one of the upper cabinets in the kitchen and get myself a plate that was not left on the counter for me. Such a little thing...but so huge to me at the time. Same goes for he first time I was able to get in the car and drive after almost a year of not being able to.

I am SO happy to hear how well you are doing. Keep it up and keep us posted.
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Unread 03-17-2012, 04:19 PM   #192
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Congrats!! That is fantastic. I definitely know what you mean about how fun and exciting those "mundane" activities can be. After spending months and months in a wheelchair I remember being terribly excited when I was able to reach into one of the upper cabinets in the kitchen and get myself a plate that was not left on the counter for me. Such a little thing...but so huge to me at the time. Same goes for he first time I was able to get in the car and drive after almost a year of not being able to.

I am SO happy to hear how well you are doing. Keep it up and keep us posted.
Here is hoping you are not far behind me. Please let us know how you are doing!
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Unread 03-18-2012, 08:14 AM   #193
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Well...I've been trying my new protocol for a week now and I have noticed a change. I'm not getting any relief in my ankle (yet) with the new protocol but I am getting relief in my upper body (mostly in my hands and arms) and unlike what was happening with my ankle this relief is more constant instead of the up and downs. This is encouraging and I'm going to continue with this protocol for a while. I have not noticed any changes in my balance or sleeping...but it has been eaiser to do a lot of activities with the reduced allydonia and pain in my hands and arms.

I've increased my efforts at pain reduction and exercise. I've been taking two warm baths a day instead of just one, doing two treatments with the ultrasound (after each bath), and having the TENS unit on almost all the time PLUS lidoderm patches on other areas at the same time. I've been increasing the amount of activity and exercise...still focusing on both my physical therapy exercises and upping my endurance. Since the weather has been very very nice (70s-80s with no rain) I have been taking a 5 minute drive to the forest preserve each morning with my little dog and we walk around the lake (gravel path) for 1.5-2 hours. I have to go in the earlier morning before it's two warm and we usually have the whole place to ourselves. I have to use the walker and by the end of the walk I have to lean on it more...but so far no flare ups and the TENS unit and other stuff has kept the pain at a manageable level. Hasn't gotten above an 8 all week which considering the amount of activity I have been doing is pretty impressive. Not sure if it is the amount of focus I have been putting on pain control or if it's the tDCS that is helping keep the flares at bay or if it is a combination of both....but it feels SO great.

I feel like I have more energy. Some of this is mental...I'm sure...just because I am so thrilled with being able to get out of the house and do some walking with my dog in the local forest preserve, etc. But I also can feel that I am getting stronger and stronger and having less pain in my hands and arms is wonderful too. It's not gone...but it is better. I have even been able to go outside on the less windy days without gloves on (though I keep them with me just in case). On the next less windy day I might try wearing something without sleeves to see if I can handle it. Wind is a real killer for me but it would be nice to not have to be completely covered up every time I leave the house..

So...things are going well. I made a lot of progress on my own before tDCS just with physical therapy...but I really think that the tDCS is only going to help me go farther and I hope that over time I start to see improvements in the pain in my ankle and the balance as well. If those improve then I will be able to ditch the walker and that would be a wonderful thing. Even if I could get to the point where I felt safe enough to not need the walker in the house and just needed it when I went out...that would be nice.

Hope everyone is doing well! Take care!
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Unread 03-18-2012, 08:50 AM   #194
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Originally Posted by catra121 View Post
Well...I've been trying my new protocol for a week now and I have noticed a change. I'm not getting any relief in my ankle (yet) with the new protocol but I am getting relief in my upper body (mostly in my hands and arms) and unlike what was happening with my ankle this relief is more constant instead of the up and downs. This is encouraging and I'm going to continue with this protocol for a while. I have not noticed any changes in my balance or sleeping...but it has been eaiser to do a lot of activities with the reduced allydonia and pain in my hands and arms.

I've increased my efforts at pain reduction and exercise. I've been taking two warm baths a day instead of just one, doing two treatments with the ultrasound (after each bath), and having the TENS unit on almost all the time PLUS lidoderm patches on other areas at the same time. I've been increasing the amount of activity and exercise...still focusing on both my physical therapy exercises and upping my endurance. Since the weather has been very very nice (70s-80s with no rain) I have been taking a 5 minute drive to the forest preserve each morning with my little dog and we walk around the lake (gravel path) for 1.5-2 hours. I have to go in the earlier morning before it's two warm and we usually have the whole place to ourselves. I have to use the walker and by the end of the walk I have to lean on it more...but so far no flare ups and the TENS unit and other stuff has kept the pain at a manageable level. Hasn't gotten above an 8 all week which considering the amount of activity I have been doing is pretty impressive. Not sure if it is the amount of focus I have been putting on pain control or if it's the tDCS that is helping keep the flares at bay or if it is a combination of both....but it feels SO great.

I feel like I have more energy. Some of this is mental...I'm sure...just because I am so thrilled with being able to get out of the house and do some walking with my dog in the local forest preserve, etc. But I also can feel that I am getting stronger and stronger and having less pain in my hands and arms is wonderful too. It's not gone...but it is better. I have even been able to go outside on the less windy days without gloves on (though I keep them with me just in case). On the next less windy day I might try wearing something without sleeves to see if I can handle it. Wind is a real killer for me but it would be nice to not have to be completely covered up every time I leave the house..

So...things are going well. I made a lot of progress on my own before tDCS just with physical therapy...but I really think that the tDCS is only going to help me go farther and I hope that over time I start to see improvements in the pain in my ankle and the balance as well. If those improve then I will be able to ditch the walker and that would be a wonderful thing. Even if I could get to the point where I felt safe enough to not need the walker in the house and just needed it when I went out...that would be nice.

Hope everyone is doing well! Take care!
Catra that is great news. Things were slow for me at first. Each time I got symptom reduction I would attribute it to something else but eventually I just kept getting better and better. Isn't the energy thing great!!!!! It just builds on itself.

Keep up the good work!!!!! What I try to do is not to look at daily progress but I measure my progress on the same day each week. In that way I have been able to clearly see that my severe headaches are gone, etc.

I am so happy for you. The transition to the cane was a hard one for me. Sometimes I have the urge to retrieve the walker from the shed. My wife thinks maybe I should for a while but I am too stubborn.

The symptoms in my wrist that were caused by a spinal cord revision surgery are now gone. I hope it won't be long and you will be sharing the same thing too!!!!!!!
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Unread 03-18-2012, 11:41 AM   #195
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Catra that is great news. Things were slow for me at first. Each time I got symptom reduction I would attribute it to something else but eventually I just kept getting better and better. Isn't the energy thing great!!!!! It just builds on itself.

Keep up the good work!!!!! What I try to do is not to look at daily progress but I measure my progress on the same day each week. In that way I have been able to clearly see that my severe headaches are gone, etc.

I am so happy for you. The transition to the cane was a hard one for me. Sometimes I have the urge to retrieve the walker from the shed. My wife thinks maybe I should for a while but I am too stubborn.

The symptoms in my wrist that were caused by a spinal cord revision surgery are now gone. I hope it won't be long and you will be sharing the same thing too!!!!!!!
I have to be honest...I will likely be very hard pressed to swap the walker for the cane for anything other than what I do now which is to use the cane to go upstairs and then use that when I am up there (which is usually not for much time at all each day and I mostly do it just to get the therapy of going up and down the stairs).

The walker actually gives me so much more freedom with most things and I have a much more normal walking gait with the walker (it is the kind with 4 wheels and a seat). I can "carry" things with the walker by putting them on the seat or in the pouch under the seat. I can kneel on it (only when it is locked of course) and have my hands free to do the dishes, grab something off the shelf, etc. And of course then I always have the seat if I need it when I am out shopping or something. I can even go grocery shopping by myself and just put a shopping basket on the walker and use my walker like a cart (okay...so no BIG grocery shopping trips by myself). I also just feel safer with the walker because of the balance problems that can hit me seemingly out of no where. I can be walking normally and if it hits I just stop and put the brakes on...sitting if I need to. With the cane I don't feel like it would be so easy and feel I would be much more likely to fall (and then possibly hurt myself and flare up my RSD). And another added benefit is that people tend to give me much more space (generally) with the walker

I don't know...maybe I am just scared of the change but I feel like the walker allows me more freedom than the cane...especially since I can just walk along normally and can have the freedom to use both my hands when I need to without sacrificing safety/balance. But I tell you...if these balance problems go away I will be thrilled to not NEED the walker or cane.

Ballerina also advised me not to think about my progress in a daily sense but rather to review the progress after the entire week. I write down my daily progress in a journal and I just reviewed the past week this morning. It was encouraging and I feel good about it. One step at a time, right?
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Unread 03-18-2012, 02:01 PM   #196
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I had another fall last wednesday. I hit the floor pretty hard and tore my thumbnail in two places. I was ready for the usual new source of CRPS but amazingly it did not happen. I am a bit bruised and the thumb hurt real good for a day and now I am good to go.

It is my own fault because I was not using my service dog when I fell. Big mistake that I will not soon make again.

Otherwise I am doing well. Still making very good progress. I am starting a new protocol over the next week and will keep daily notes regarding any progress. I am so excited to see that others are having good results with tDCS.

I hope we will soon see posts about great results with those newly diagnosed with CRPS.
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Unread 03-18-2012, 02:26 PM   #197
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I had another fall last wednesday. I hit the floor pretty hard and tore my thumbnail in two places. I was ready for the usual new source of CRPS but amazingly it did not happen. I am a bit bruised and the thumb hurt real good for a day and now I am good to go.

It is my own fault because I was not using my service dog when I fell. Big mistake that I will not soon make again.

Otherwise I am doing well. Still making very good progress. I am starting a new protocol over the next week and will keep daily notes regarding any progress. I am so excited to see that others are having good results with tDCS.

I hope we will soon see posts about great results with those newly diagnosed with CRPS.
I'm glad you are okay! It's easy to get cocky isn't it? A little over a month ago now I had my walker and I leaned to grab a coat off a hook on the wall...didn't lock the breaks because I felt fine. Lost my balance, walker rolled away from me, and I scraped my skin and got a nasty bruise. Thankfully...that was all...but you can bet I haven't made the mistake again of not locking my wheels when I do something where I need to lean or use both hands.

Keep up all the hard work and as always...thanks so much for all your advice and help. I wish more people (especially doctors) were familiar with tDCS as treatment for CRPS and chronic pain.
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Unread 03-18-2012, 03:08 PM   #198
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I'm glad you are okay! It's easy to get cocky isn't it? A little over a month ago now I had my walker and I leaned to grab a coat off a hook on the wall...didn't lock the breaks because I felt fine. Lost my balance, walker rolled away from me, and I scraped my skin and got a nasty bruise. Thankfully...that was all...but you can bet I haven't made the mistake again of not locking my wheels when I do something where I need to lean or use both hands.

Keep up all the hard work and as always...thanks so much for all your advice and help. I wish more people (especially doctors) were familiar with tDCS as treatment for CRPS and chronic pain.
Yes it is very easy to get cocky and do more than I should just because tDCS has given me some quality of life back.

You keep up the hard work too!!!!! I am so happy that you and James are making such good progress!!!

Remission for us someday!!!!

Unfortunately my take on doctors and tDCS is that patients are going to get their own equipment and treat themselves before most doctors will offer. Just think what will happen to lucrative pain management practices and spinal cord stim revenues if and when tDCS takes off. (which I believe will happen within the next few years.) Patients like me will not wait for the medical profession to promote, to provide or to give permission in the way of scripts for the treatment. My hunch is that college kids will lead the charge rather than chronic pain patients, using the devices for learning and memory. I predict that they will routinely pack a tDCS device with their i pads.

I can't wait until tDCS wipes out the Spinal Cord Stim business as it pertains to CRPS patients. I become ill every time I hear of another failure case like James.

Better day are ahead for all of us.
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Unread 03-18-2012, 08:58 PM   #199
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CRPSjames & ballerina:

Would you 2 tdcs “positive responders “ (for lack of a better term) be kind enough to post another description of the locations you are using for your anode and cathode?

It would be useful to have it listed in the EEG coordinates or some other manner that allows others of us to accurately do a trial using those locations.

I have tried 3 ten-day trials & have had no symptomatic improvement whatsoever, but each of the trials have caused some significant sleep disturbances… so something is happening. I've been on a weeklong reprieve and I am about to start another trial.

The 1st trial I used what I thought was the location that ballerina (motor cortex and S2) is using, the 2nd trial was more oriented upward towards C-3 trial was at C-3 -and a little higher on the head also……


If you feel more comfortable PM’ing me, fine with me.

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Unread 03-19-2012, 11:55 AM   #200
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CRPSjames & ballerina:

Would you 2 tdcs “positive responders “ (for lack of a better term) be kind enough to post another description of the locations you are using for your anode and cathode?

It would be useful to have it listed in the EEG coordinates or some other manner that allows others of us to accurately do a trial using those locations.

I have tried 3 ten-day trials & have had no symptomatic improvement whatsoever, but each of the trials have caused some significant sleep disturbances… so something is happening. I've been on a weeklong reprieve and I am about to start another trial.

The 1st trial I used what I thought was the location that ballerina (motor cortex and S2) is using, the 2nd trial was more oriented upward towards C-3 trial was at C-3 -and a little higher on the head also……


If you feel more comfortable PM’ing me, fine with me.

voner

Hi Voner,

I an very sorry you have not received any relief. I have used the electrode placements you have used and had the best response to M1 S2. I am currently trying a new placement but have no track record yet.

I am no expert but I offer the following. I did extensive research on tDCS and my areas of pain. I also visited and/or consulted with the three leading places in the US as regards tDCS and my area of pain. This process might be useful for you. I also vaguely remember that you rigged your own electrode parts. Don't know if this could be a factor.

The description of my M1 S1 is listed in this thread. Please send me a pm if it is not clear. I am not always as clear as I could be.

The fact that your sleep is being disturbed is not great but you are right-something is happening.

I would not give up yet.
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