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 07-09-2015, 02:37 PM #6
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Littlepaw Littlepaw is offline
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Littlepaw Littlepaw is offline
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Join Date: Nov 2014
Posts: 1,537
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Hi,

I can understand your reluctance on SCS. It is a big decision with all kinds of potential sequelae. I certainly encourage you to hang in there with med changes and looking at other alternatives first.

Getting my ketamine approved was no problem. I am not doing the traditional five day infusions of four hours each. My PM likes super low dose and feels it helps people with fewer side effects. I only go every two to three weeks right now which is maybe not frequent enough but with summer vacation and office closure for the 4th of July it's been tricky. Even with just that it is making a difference. My cost is $300 per infusion and they last an hour. I am out of pocket till I hit my sky high deductible. I have a thread on this called "getting Ketamine infusions" with a thumbs up sign. I posted an update on infusion three recently so if you scroll through threads a couple pages you should see it.

Calmare is hard to describe. It is also called Scrambler therapy. Mayo did a study on it and found it helpful for neuropathic pain though sample size was small as I recall. It is to be used when all healing is complete and there is nothing else injury or pain contributor wise to treat. It is non-invasive. They put sticky pads around the injury and send whatever signals through. It is not a TENS but looks a like a similar idea on steroids. It must be done in office (high dollar machine) and operator skill does seem to factor in. Some claim great results, some claim no results, a few say it feels worse during treatment and discontinue. We had a new poster recently I was PMing with and she went to Rhode Island for it with Dr. D'Amato. Had good results the first week but I have not heard from her after the second week. There is a NJ clinic but I think the doc is a chiropractor from what she told me after extensive research into getting it done. My inclination would be to go with a physician who has done a lot of it. The Calmarett website has list of docs.

I have found acupuncture to be helpful and I take PEAPure daily (palmitoylethanolamide). I also went to a therapist who specialized in chronic pain, illness, life change. She was certified in EMDR and hypnosis and we did quite a bit of that to bypass my conscious brain. It was a big help in decreasing stress and despair after my third operation in a year and gave me better coping skills for pain.

I have made tremendous progress since my last bout on crutches and scooter. Improvement IS possible! It took a lot of trial and error and basic pigheadedness over a year to accomplish. Feel free to PM if you have questions on the ketamine or post them on the ketamine thread. I go for infusion four tomorrow and will post an update when I have results to report.

Hang in there, I am Sending Healing Love,
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