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 11-27-2017, 07:38 PM #1
Alice P Alice P is offline
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Default CRPS/tDCS treatment

My husband has CRPS and we are looking for an alternative treatment. He has had two surgeries, Lumbar Sympathetic Blocks and now his doctor wants to do a Spinal Cord implant . He is in pain 24/7 .

Has anyone used tDCS treatment ? Does it help with the pain ? Where can we buy a tDCS machine ? We are desperate to find something that works.

Thanks

Last edited by Alice P; 11-27-2017 at 08:00 PM.
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Old 11-28-2017, 06:57 PM #2
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Originally Posted by Alice P View Post
My husband has CRPS and we are looking for an alternative treatment. He has had two surgeries, Lumbar Sympathetic Blocks and now his doctor wants to do a Spinal Cord implant . He is in pain 24/7 .

Has anyone used tDCS treatment ? Does it help with the pain ? Where can we buy a tDCS machine ? We are desperate to find something that works.

Thanks
Hi Alice. There is a long thread about tDCS in this thread- it's a way back. Just run a search on tDCS (or go back pages) and it will show where to purchase one and how people have used it.

Good luck and wishing your husband some relief.
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Old 11-28-2017, 08:24 PM #3
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I did it and posted on the long thread when I did. My personal experience was that it didn't directly help with my pain levels BUT...I slept better which helped me tolerate the pain better because I was getting sleep and I had flare ups much less often after the treatments and that lasted for a while. I have since had another accident that set me into a tail spin...but for several years I was having fewer flare ups, shorter flare ups (usually over within a day) and was sleeping better without any meds. But it did not directly help with bringing my pain levels down. Maybe if I had worked with a doctor and tried other placements for the electrodes...but I was overall happy with the treatment.

Now...I just did the DRG spinal cord stimulator trial and that brought my pain down from an 8/10 baseline to a 3/10 instantly...and with rest I was down to a 2/10 while at rest and 3/10 while up and moving around. Had one flare up during the trial that brought me up to a 6/10...but still less than my 8/10 baseline without the DRG unit. If this is an option...I highly recommend trying it out because the relief was instant and AMAZING...nothing else has done anything to bring my pain down like that. I was not interested in the traditional SCS but the results with the DRG have been so promising and positive that I gave it a try and am so glad I did.
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Old 11-28-2017, 08:25 PM #4
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Also...my dr wrote a script for the iontophoresis unit and then I bought it online along with the other parts to convert it for tDCS treatments. The details are in that long thread from a few years ago.
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Old 12-03-2017, 04:07 PM #5
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I did it and posted on the long thread when I did. My personal experience was that it didn't directly help with my pain levels BUT...I slept better which helped me tolerate the pain better because I was getting sleep and I had flare ups much less often after the treatments and that lasted for a while. I have since had another accident that set me into a tail spin...but for several years I was having fewer flare ups, shorter flare ups (usually over within a day) and was sleeping better without any meds. But it did not directly help with bringing my pain levels down. Maybe if I had worked with a doctor and tried other placements for the electrodes...but I was overall happy with the treatment.

Now...I just did the DRG spinal cord stimulator trial and that brought my pain down from an 8/10 baseline to a 3/10 instantly...and with rest I was down to a 2/10 while at rest and 3/10 while up and moving around. Had one flare up during the trial that brought me up to a 6/10...but still less than my 8/10 baseline without the DRG unit. If this is an option...I highly recommend trying it out because the relief was instant and AMAZING...nothing else has done anything to bring my pain down like that. I was not interested in the traditional SCS but the results with the DRG have been so promising and positive that I gave it a try and am so glad I did.

catra,First let my say its awesome that you have found some pain relief !! The pain with this condition is horrifying and debilitating.

It might be worth trying tDCS for the sleep alone, my husband sleeps a few hours a night and its really affecting his overall health.

Could you please tell me what a flare up means in regards to CRPS ? My husband has symptoms/pain 24/7 .

My husband was hurt on the job and is on Workers Comp. He has a doctor here in Reno who's treatment plan is drugs, spinal nerve block and spinal cord stimulator. He was allowed to see a doctor in Las Vegas who's treatment plan is to do a Peripheral Nerve Surgery . At this point we are waiting to see if WC will pay for the surgery in Las Vegas (they paid for him to fly down there a see Dr Tollestrup and then denied the surgery) , but we are doing some research on the spinal cord stimulator as well.

Thanks for the info.
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Old 12-04-2017, 06:35 AM #6
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So...flare up generally means an increase in pain. Like...my pain level baseline is 8/10 but when the weather gets cold, someone bumps me, or anything else that triggers an increase in my pain beyond the baseline normal for me...that would be a flare up. For me in particular...i have 3 kinds of pain generally in my CRPS areas. The first is the intense 24/7 burning pain from within that feels like it's radiating out. The second is the hyper sensitivity where when things touch me it feels like a hot poker or blow torch is being dragged across my skin from the top. The third I only experience in flare ups and it is a severe bone crushing pain that feels like someone is grinding my bones down to dust. Everyone who has CRPS can have different sensations of pain and may describe them differently so a flare up for me might look or feel different than a flare up for someone else. A few other things are different like I used to have extreme coldness in my CRPS areas all the time but now that extreme temp change only happens in flare ups (there's always a slight difference in temp that Drs have noted but that extreme difference is just during flare ups). So after the tDCS treatment I experienced fewer flares and they were shorter in duration.

If you look onto SCS...definitely ask about the DRG. It's newer and so far shows to be much more effective in treating CRPS especially over time with most patients getting 50-80% relief. Would be worth looking into and asking about. I personally was not interested in a traditional SCS but when the DRG cane out I was much happier with the results I was hearing from people. But I really stress doing the research and deciding for yourself what treatments are worth the risk...because there is always risk with any treatment...particularly invasive ones like SCS and you should go in with eyes open about the good and the bad. Most Drs will just talk about the good and try to minimize risks...but we are the ones who have to live with them.

I was also hurt on the job...so I understand the whole WC circus though the laws are different in each state. Good luck with everything and let me know if you have any other questions.
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Old 12-05-2017, 03:51 PM #7
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Originally Posted by catra121 View Post
So...flare up generally means an increase in pain. Like...my pain level baseline is 8/10 but when the weather gets cold, someone bumps me, or anything else that triggers an increase in my pain beyond the baseline normal for me...that would be a flare up. For me in particular...i have 3 kinds of pain generally in my CRPS areas. The first is the intense 24/7 burning pain from within that feels like it's radiating out. The second is the hyper sensitivity where when things touch me it feels like a hot poker or blow torch is being dragged across my skin from the top. The third I only experience in flare ups and it is a severe bone crushing pain that feels like someone is grinding my bones down to dust. Everyone who has CRPS can have different sensations of pain and may describe them differently so a flare up for me might look or feel different than a flare up for someone else. A few other things are different like I used to have extreme coldness in my CRPS areas all the time but now that extreme temp change only happens in flare ups (there's always a slight difference in temp that Drs have noted but that extreme difference is just during flare ups). So after the tDCS treatment I experienced fewer flares and they were shorter in duration.

If you look onto SCS...definitely ask about the DRG. It's newer and so far shows to be much more effective in treating CRPS especially over time with most patients getting 50-80% relief. Would be worth looking into and asking about. I personally was not interested in a traditional SCS but when the DRG cane out I was much happier with the results I was hearing from people. But I really stress doing the research and deciding for yourself what treatments are worth the risk...because there is always risk with any treatment...particularly invasive ones like SCS and you should go in with eyes open about the good and the bad. Most Drs will just talk about the good and try to minimize risks...but we are the ones who have to live with them.

I was also hurt on the job...so I understand the whole WC circus though the laws are different in each state. Good luck with everything and let me know if you have any other questions.

OK,so everything you said about a flare up makes sense, none of my husbands doctors has ever said anything about flare up's , in fact we had never heard of them until now...I ask my husband last night if he ever felt like he was having a flare up and he said yes. I know he has at lest two of the symptoms you describe, " intense 24/7 burning pain from within that feels like it's radiating out. The second is the hyper sensitivity where when things touch me it feels like a hot poker or blow torch is being dragged across my skin from the top.". He also has cold/hot issues .

I agree with you about about doing A LOT of research about treatment... at the end of the day we are the ones responsible for our health and we must be our own advocate.

Your description of WC is spot on. LOL

Thank you so much for taking the time to respond .
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Old 12-05-2017, 03:52 PM #8
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Most CRPS patients are in severe constant pain. Various meds and treatments can reduce pain levels, so it's best for him to learn multiple ways to manage his pain. It's a delicate balance of learning to use an effected limb enough but not too much. If he hasn't tried warm water therapy I highly recommend it.

While nerve entrapment surgery may help, it might also permanently increase his pain or cause spread. The best way to protect against this is to have a block before the surgery, but if he had a bad reaction that option is out. It would be worthwhile for him to try a ketamine infusion and if he responds well but still needs surgery, ketamine can be used in the anesthesia to help reduce the chance of an exacerbation of pain and symptoms or spread.
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