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)


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Old 03-11-2012, 10:55 AM #1
ballerina ballerina is offline
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Default Newly diagnosed, tDCS and remission

I have not located any research on tDCS and newly diagnosed cases of CRPS. Since the research has documented it's success with neuropathic pain of all types if you are newly diagnosed please consider this treatment to put you into remission.

I have refractory CRPS. Not much of anything helped but I have had a remarkable response to tDCS and it has greatly improved the quality of life. I had a recent injury and the symptoms began almost immediately in another limb. tDCS stopped it dead and eliminated all new symptoms. If tDCS can address refractory CRPS, and stop a new source of CRPS what would it do for fresh cases??????

It is cheap, effective, non-invasive, and has virtually no side effects. It can be used with other treatments and meds, and unlike some therapies, one cannot build up a tolerance to it.

New cases-time is of the essence. Please see the tDCS thread if you are newly diagnosed, particulalry if you are concerned about invasive procedures causing spread as many of them can.
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Old 03-11-2012, 11:29 PM #2
Neko1221 Neko1221 is offline
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I read your orginal post about tDCS and check back to it almost daily to see the progress that youre making and the comments from others as well. I am very newly diagnosed and want more than anything in the world to beat this beast into submission. tDCS is something I've been telling my husband I'd really like to try - I would try anything, really - but this is something that there is so little risk involved with! Its not something I want to try on my own though. Im scared honestly. I feel like if I could have it done just one time in a clinical setting, or have something actually show me how do it (dumb it down for me) I would be less reluctant to dive right in. Hopefully this will be something that I will eventually be able to try, but I hope that by then its not too late to get the full results possible.
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Old 03-12-2012, 05:37 AM #3
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Originally Posted by Neko1221 View Post
I read your orginal post about tDCS and check back to it almost daily to see the progress that youre making and the comments from others as well. I am very newly diagnosed and want more than anything in the world to beat this beast into submission. tDCS is something I've been telling my husband I'd really like to try - I would try anything, really - but this is something that there is so little risk involved with! Its not something I want to try on my own though. Im scared honestly. I feel like if I could have it done just one time in a clinical setting, or have something actually show me how do it (dumb it down for me) I would be less reluctant to dive right in. Hopefully this will be something that I will eventually be able to try, but I hope that by then its not too late to get the full results possible.

If you can travel to Atlanta you can consult with Jim Fugedy, the most knowledgable tDCS doc in the U.S.

If not then please consider trying it yourself. If I had just been diagnosed it is the first thing I would try. It is not rocket science. If you can apply a bandaid to your forehead you can do tDCS. It is a little intimidating in the beginning but there are folks on the tDCS thread who can walk and/or talk you through it. What state do you live in?

tDCS totally knocked out an injury related fresh case of CRPS for me. Totally gone!!!!!!!
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Old 03-13-2012, 07:50 AM #4
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Hi Ballerina,

Just wanted to send a quick thanks for sharing your experience in the tDCS thread. I don't post very often because I don't have CRPS but my husband does, although he's been in remission for two years. He is forbidden from reading anything on the internet regarding CRPS (I call him 'Eeyore' for a reason) but I check this forum nearly daily to keep up with current treatments and the progress of members.

I believe that if he were to ever relapse, tDCS is probably the first thing he would want to try since it's cheap and non-invasive. It's something we would never have even known about if you hadn't posted on it, so thank you for that. I have the thread bookmarked for future reference, should the need ever arise.

Thanks again, and best wishes for continued healing.

Merle
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Old 03-13-2012, 10:09 AM #5
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Originally Posted by mjl1261 View Post
Hi Ballerina,

Just wanted to send a quick thanks for sharing your experience in the tDCS thread. I don't post very often because I don't have CRPS but my husband does, although he's been in remission for two years. He is forbidden from reading anything on the internet regarding CRPS (I call him 'Eeyore' for a reason) but I check this forum nearly daily to keep up with current treatments and the progress of members.

I believe that if he were to ever relapse, tDCS is probably the first thing he would want to try since it's cheap and non-invasive. It's something we would never have even known about if you hadn't posted on it, so thank you for that. I have the thread bookmarked for future reference, should the need ever arise.

Thanks again, and best wishes for continued healing.

Merle
Thanks Merle,

Please share what put him into remission.

Thanks
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Old 03-13-2012, 12:29 PM #6
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I wish there were one or two things that I could point to and say that's what put my husband in remission. Unfortunately, it was one of several things or even a combination of all of them.

He had two surgeries (including a nerve graft from his ankle) on his hand to repair damage from a table saw. He spent two weeks in a splint and was told no finger movement whatsoever. Three (I think) more weeks in a splint with only passive movement allowed, with three visits per week to physical therapy. A couple of weeks into physical therapy, he started complaining about severe burning pain and increased swelling. His pain was in one spot on his hand, probably the size of a pencil eraser.

His surgeon diagnosed him right away with CRPS and sent him to a pain doctor. They started him on 400mg gabapentin three times a day. He couldn't tell a difference in the pain level. Ultimately, they had him up to 1200mg three times a day with no noticable change in pain level.

They scheduled him for a brachial plexus block which worked for about 12 hours. Then he had a stellate ganglion block which worked for about 8 hours. After another SGB, my husband said, while numb from shoulder to fingertip, "It still hurts in that spot." On the drive home from the hospital, he said the vibrations from the car ride made his pain go to a 7. We were completely bummed. By this time he had all of the classic CRPS symptoms: temperature changes, skin color changes, wild hair and nail growth on that hand, swelling, and that burning pain. Riding in the car always caused a spike. But he never had the allodynia that so many suffer from. And none of the symptoms ever spread above his wrist.

Meanwhile, he was still going to PT three times a week and doing all the same exercises at home in the evening. He did them every night, without fail, even on Christmas. Gradually he quit complaining about the pain and by Christmas (four months after the accident) said he wanted to stop the gabapentin. He said it wasn't helping and it was killing his short term memory. The doctor agreed to let him try and told him to drop to 800mg for a few days, then 400mg for a few more. He was completely off medication in a week. He said there was an increase in pain but not enough to make him want to go back on meds. He said it was months before his short term memory improved.

He kept doing his PT exercise and we added a nightly epsom salt soak to try to help with swelling. He also started taking N-Acetyl Cystein daily. Over the next three months, his swelling improved, the color and temperature changes went away, and the hair and nail growth returned to normal.

So what put him into remission? I really can't say. If you ask me, I think I would not be typing these words today had he not been diagnosed so quickly. I think the aggressive PT was a huge part, plus the fact that he did the exercises religiously on his own. Did the blocks help? Who knows? On the surface it appears not, but maybe one or more of them flipped some switch somewhere.

Today he takes no medications and has no pain. There's nothing he can't do today that he did before the accident except what's limited by the extensive nerve damage done by the table saw. He mows, weed eats, runs a chainsaw, he's used a plate compactor, he's run a grinder up his leg to the point where I thought he'd need stitches. I held my breath for days after each of these activities, certain that his symptoms would come back, but so far they haven't. The only remaining symptom he has is a sensitivity to cold in that hand. He wears his mittens even when the temperature is in the mid-50s.

I did make him sell the table saw.
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Old 03-13-2012, 12:38 PM #7
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Quote:
Originally Posted by mjl1261 View Post
I wish there were one or two things that I could point to and say that's what put my husband in remission. Unfortunately, it was one of several things or even a combination of all of them.

He had two surgeries (including a nerve graft from his ankle) on his hand to repair damage from a table saw. He spent two weeks in a splint and was told no finger movement whatsoever. Three (I think) more weeks in a splint with only passive movement allowed, with three visits per week to physical therapy. A couple of weeks into physical therapy, he started complaining about severe burning pain and increased swelling. His pain was in one spot on his hand, probably the size of a pencil eraser.

His surgeon diagnosed him right away with CRPS and sent him to a pain doctor. They started him on 400mg gabapentin three times a day. He couldn't tell a difference in the pain level. Ultimately, they had him up to 1200mg three times a day with no noticable change in pain level.

They scheduled him for a brachial plexus block which worked for about 12 hours. Then he had a stellate ganglion block which worked for about 8 hours. After another SGB, my husband said, while numb from shoulder to fingertip, "It still hurts in that spot." On the drive home from the hospital, he said the vibrations from the car ride made his pain go to a 7. We were completely bummed. By this time he had all of the classic CRPS symptoms: temperature changes, skin color changes, wild hair and nail growth on that hand, swelling, and that burning pain. Riding in the car always caused a spike. But he never had the allodynia that so many suffer from. And none of the symptoms ever spread above his wrist.

Meanwhile, he was still going to PT three times a week and doing all the same exercises at home in the evening. He did them every night, without fail, even on Christmas. Gradually he quit complaining about the pain and by Christmas (four months after the accident) said he wanted to stop the gabapentin. He said it wasn't helping and it was killing his short term memory. The doctor agreed to let him try and told him to drop to 800mg for a few days, then 400mg for a few more. He was completely off medication in a week. He said there was an increase in pain but not enough to make him want to go back on meds. He said it was months before his short term memory improved.

He kept doing his PT exercise and we added a nightly epsom salt soak to try to help with swelling. He also started taking N-Acetyl Cystein daily. Over the next three months, his swelling improved, the color and temperature changes went away, and the hair and nail growth returned to normal.

So what put him into remission? I really can't say. If you ask me, I think I would not be typing these words today had he not been diagnosed so quickly. I think the aggressive PT was a huge part, plus the fact that he did the exercises religiously on his own. Did the blocks help? Who knows? On the surface it appears not, but maybe one or more of them flipped some switch somewhere.

Today he takes no medications and has no pain. There's nothing he can't do today that he did before the accident except what's limited by the extensive nerve damage done by the table saw. He mows, weed eats, runs a chainsaw, he's used a plate compactor, he's run a grinder up his leg to the point where I thought he'd need stitches. I held my breath for days after each of these activities, certain that his symptoms would come back, but so far they haven't. The only remaining symptom he has is a sensitivity to cold in that hand. He wears his mittens even when the temperature is in the mid-50s.

I did make him sell the table saw.
Great news. Maybe the grinder should go too. Ha. Ha.
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Old 03-13-2012, 02:12 PM #8
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Originally Posted by mjl1261 View Post
I wish there were one or two things that I could point to and say that's what put my husband in remission. Unfortunately, it was one of several things or even a combination of all of them.

He had two surgeries (including a nerve graft from his ankle) on his hand to repair damage from a table saw. He spent two weeks in a splint and was told no finger movement whatsoever. Three (I think) more weeks in a splint with only passive movement allowed, with three visits per week to physical therapy. A couple of weeks into physical therapy, he started complaining about severe burning pain and increased swelling. His pain was in one spot on his hand, probably the size of a pencil eraser.

His surgeon diagnosed him right away with CRPS and sent him to a pain doctor. They started him on 400mg gabapentin three times a day. He couldn't tell a difference in the pain level. Ultimately, they had him up to 1200mg three times a day with no noticable change in pain level.

They scheduled him for a brachial plexus block which worked for about 12 hours. Then he had a stellate ganglion block which worked for about 8 hours. After another SGB, my husband said, while numb from shoulder to fingertip, "It still hurts in that spot." On the drive home from the hospital, he said the vibrations from the car ride made his pain go to a 7. We were completely bummed. By this time he had all of the classic CRPS symptoms: temperature changes, skin color changes, wild hair and nail growth on that hand, swelling, and that burning pain. Riding in the car always caused a spike. But he never had the allodynia that so many suffer from. And none of the symptoms ever spread above his wrist.

Meanwhile, he was still going to PT three times a week and doing all the same exercises at home in the evening. He did them every night, without fail, even on Christmas. Gradually he quit complaining about the pain and by Christmas (four months after the accident) said he wanted to stop the gabapentin. He said it wasn't helping and it was killing his short term memory. The doctor agreed to let him try and told him to drop to 800mg for a few days, then 400mg for a few more. He was completely off medication in a week. He said there was an increase in pain but not enough to make him want to go back on meds. He said it was months before his short term memory improved.

He kept doing his PT exercise and we added a nightly epsom salt soak to try to help with swelling. He also started taking N-Acetyl Cystein daily. Over the next three months, his swelling improved, the color and temperature changes went away, and the hair and nail growth returned to normal.

So what put him into remission? I really can't say. If you ask me, I think I would not be typing these words today had he not been diagnosed so quickly. I think the aggressive PT was a huge part, plus the fact that he did the exercises religiously on his own. Did the blocks help? Who knows? On the surface it appears not, but maybe one or more of them flipped some switch somewhere.

Today he takes no medications and has no pain. There's nothing he can't do today that he did before the accident except what's limited by the extensive nerve damage done by the table saw. He mows, weed eats, runs a chainsaw, he's used a plate compactor, he's run a grinder up his leg to the point where I thought he'd need stitches. I held my breath for days after each of these activities, certain that his symptoms would come back, but so far they haven't. The only remaining symptom he has is a sensitivity to cold in that hand. He wears his mittens even when the temperature is in the mid-50s.

I did make him sell the table saw.
That's pretty amazing. I'm with you in thinking that it was the aggressive PT probably more than anything. When I had my very first block (6 months after my injury) I had no relief from the pain but in hind sight, the color and temperature changes went away for several months until I had another bad flare that led to my current situation. At the time I don't know that I really noticed because it was such a slow tapering off of those things (which are back full force these days) but I think that while the blocks didn't help my pain they may have had a very slight improvement afterall. OR...it could just be the physical therapy that I was doing before and after the block. I never went into remission but I had a period of 8 months of feeling better and was at least able to function fairly normally despite the pain.

I have to wear my gloves all the time these days too. The only time I don't wear them is inside the house where I KNOW the temperature is warm and only when I know I will not be near an open window or door. I feel sort of silly walking around with gloves and a scarf all the time...but we gotta do what we gotta do, right?
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