My niece just had an amazing pain reduction therapy called Calmare or Scrambler therapy for her CRPS/RSD. While we were there, we learned that it has provided a huge pain reduction for many CRPS/RSD sufferers. It is at that place where some people are starting to hear about it, but I wish it was more widely known and available due to its extraordinary results in reducing pain and the circulation and temperature issues that come with CRPS. My niece, Sarah, went from a pain level 8 to a 0 after 2 1/2 weeks, and has none of the color changes and skin temperature issues that she used to. After a week, she was just enjoying the feel of cold water on her foot because it finally felt "cold" again instead of burning! We would watch her just touch her leg repeatedly just to see what "touch" felt like again.

It is non invasive (instead of the spinal cord stimulator that she was going to be having if it didn't work), and you can usually identify if it will work or not in the first one or two sessions. This is one of those "too good to be true" sounding therapies, but it WAS true, at least for us! We owe a big thanks to the person who posted something about it in this chat room!

I am a science teacher, and spent hundreds of hours researching therapies for CRPS/RSD before I even came across the therapy name. After that, I spent a lot of time researching the scientific trials (great results, peer reviewed, documented and published in major pain journals), the use of the therapy in all four branches of the armed forces (because it is so effective in drug-free pain reduction, the government even bought more of the devices used), and finding locations that have good success working with the RSD/CRPS population.

We saw Dr. Michael Cooney in New Jersey, and he and his staff were awesome! They were kind, funny and helpful. You can find out more about it at his homepage - *edit* and you can also see some of his patients talking about it on youtube.

Good luck to all of you who are going through this - you are truly amazing in how you cope with something so difficult - blessings to you all!

Thanks for the post Sarah's Aunt. My daughter has CRPS and we've had limited success with injections but it has recently returned - this time a bit worse than it was before. I have read a lot about this therapy but my doctors are very skeptical. Would it be possible for my daughter to contact you or your niece to talk about the treatment?

thank you!!!!!

My sense is that Calmare is often worth a try. There are not a lot of clinical trials of it (and none, to my knowledge specifically for CRPS-mostly for cancer related pain). My daughter and another child we know both tried it and got relief to different degrees, but it did not last for either. I have heard anecdotal evidence of others for whom the relief is quite long-lasting. You can find a treatment center here: http://www.calmarett.com/locations.html

I'd love to hear other people's experiences with it.

Lori

Yes, that's what I think, too. It's not a magic bullet, but it just didn't seem to be well-known for a relatively new RSD patient like my daughter, and I've heard that you have a better chance for remission when you've had it for a shorter period of time, so I wanted to bring it up on a couple of discussion boards and shoot the breeze about it and hear about other people's experience with it.

Yes, I believe that the new major studies coming out in June or July are for cancer-related neuralgia, and thank God for any treatment that can help cancer patients!!! But the types of pain are related, so I'm hoping that it will also help start studies and get insurance coverage for RSD patients.

How long did it last for them, if you don't mind sharing?

I'd suggest making sure that they're certified, and then ask how many RSD patients they've dealt with, and their success rate (and how they define the success rate), and if the doctor does every treatment or if they hand it off to a tech. Those are things that I found helpful.

Me too! I'm really hoping that we hear from people that have had it done a while ago, and how they are now.

Hi Stomper 1,

How long has your daughter had CRPS? Do you know if the injections were Sympathetic lumbar ganglion blocks or Bier blocks, or both?

My niece received both, and had limited relief from them, but the crps pain would return, and continue to increase and spread, to the point where they were planning on a spinal cord stimulator.

I have been learning that many people are skeptical about this treatment. For us, it was amazing, but it does not work for everyone. Here is what we heard from the doctor that my niece saw. He said that:

- he believes that the success rate is partially operator dependent. He thinks that people who are better trained in the nervous system will have better success rates.

- for the crps patients that he saw, he said that he had about a 70% success rate for people who had an accurate crps/rsd diagnosis. He had my sister send out a lot of records before we came.

-it was not uncommon for the pain to start to come back after some number of months, and then the person needed to come in for a "booster" (a couple of visits as opposed to 10-12 visits at the initial treatment) to reduce/eliminate the pain again.

-in his experience, for those who needed the boosters, the time interval between boosters usually lengthen. He has patients whom he does not see any more, and others whom he hadn't seen for over a year, because they do not have the pain anymore.

-he was very clear that it was NOT a "cure", and said that new injuries were a definite risk to have the crps start from that location. However, he expected that the treatment would also help those new locations if they did occur. This is very helpful to reduce the fear factor, so that my niece isn't afraid to live her life.

As a new member, I can't post links (which makes sense), but you can google Calmare, find the clinics and look at their web pages for some helpful information. There was one website, I can't remember whose, who had a page with information on studies that you could give to your doctor. Since it recently got a patent, that would also be a good thing to give them, I would think. The patent explains why it is different from a TENS machine, which is a common misconception. I also explained that in another post.

Obviously, you should be discussing this with your doctor, but remember, doctors disagree among themselves about new therapies. If you have researched it and it seems like something you want to try, I personally wouldn't let my doctor stop me. (I am definitely in that class of people who feel that doctors do not have all the answers, and distrust doctors who act as if they do and are not open to new ideas...) Insurance companies in some states are starting to reimburse for Calmare, and that is increasing.

You might also look into Graded Motor Imagery, which seems (to me) to be another way to help retrain the brain to recognize that there is no more actual tissue damage going on. It also helps the brain to learn how to localize where the pain is occurring instead of letting it spread. However, it takes more effort and time than Calmare. I suspect that it would be good to learn and use after Calmare to reduce the need for boosters. It has 3 steps, the last one being mirror therapy, which you may have heard of. There are several studies specifically for GMI and crps/rsd, and they look good. However, if it was me, I would do Calmare first, and then GMI for ongoing prevention.

I hope that helped some. Feel free to write back with any questions. I would also be open to your daughter contacting me, but frankly am not sure how to do that "off-line" (very new to posting) Let's do it here for a bit, and then figure out the "off-line" contact if your daughter wants that.

Good luck in all of this, I can't even imagine the strength your daughter is using to deal with this awful disease! More power to her, and to you for looking for something to help her!

For my daughter (who had 2 1/2 weeks of treatment), it never lasted more than a few hours after the treatment. Although I don't know the details, her friend had treatment 3x (each one lasting 1-2 weeks), and although she has said she thought it was helpful, I know she still has significant pain that is making it hard for her to go to school. Both kids have pain in multiple limbs and I have also heard anecdotally that it seems to work better if the pain is limited to one limb.

I'm so sorry to hear that It certainly isn't a magic bullet, but from what I've heard and experienced, I think it's much better than the rep it has. I think a big part of why some treatments don't work as well is that it is so new that there just isn't a lot of experience out there. If there really is merit in it, the treatment record will get better over time - we'll just have to wait and see. Also there seems to be a wide variety in the level of the practitioners (there are non-certified practitioners out there) and how they do the treatments (whether they stay and do it themselves, or hand it off to a tech). I know it's heartbreaking and frightening to try any new treatment - we certainly went into it with a negative outlook ("it won't work for us"), which is why our good results are even more of a positive testimonial. I'm so sorry your results weren't very good. Was your doctor certified, and did he/she do all the treatments?

Anyway, any information is useful to pass around, both good experiences and bad experiences.

Yes, I've heard that, too, but my doctor has had good success with even whole body, but finds that it just takes a longer first treatment period, and more booster treatments. His main problem has been with people on ketamine. He has limited, but still worthwhile, results with them.

Your comment about school reminded me to post some info on a school program that has been extremely helpful to my daughter - the 504 plan. I'll start a new thread on that - please take a look when you get a chance, because it might help with school difficulties.

Update - We're coming up on 3 weeks since the end of treatment, and my daughter is still in remission - there is no RSD/CRPS pain at all. She still has pain from plantar fasciitis, and muscle and tendon pain, and a lot of fatigue, but no RSD/CRPS pain.

I'm a little worried about the fatigue - the doctor said that the patients are really fatigued after the treatment, especially the first week, but my daughter seems to be still really fatigued. I think I might get some bloodwork done on her if she isn't better by next week. What I'm really afraid about is that she might be getting CFS, which is what I've had for 30 some years now, and is really horrible, too. I'm hoping that she's just on the slow end of recuperating, though.

Anyway, that's an update for anyone that's interested - I think it's good to have lots of info on all different kinds of treatments. I'm hoping that some other people with experience with Calmare will chime in soon!

I have just finished my initial 10 treatments with Dr. Michael Cooney in Rutherford NJ and I am completely amazed. I arrived in NJ with a strong 10 pain level and finished the treatments at a 0 pain level. The side effects of RSD/CRPS are also gone. I strongly recommend this treatment to every one!!

It is non-invasive and medicine free.

I have been off all RSD/CRPS meds for a month and feel fantastic, also have lost 8 pounds, stopped limping, had neuropathic rash clear up on hands and face, had extreme heat leave my body and can feel cold once again.

The staff is really nice and do everything to make you comfortable.

It might be worth considering that the physician directing one clinical trial of the device -- Dr. Toby Campbell at the U. of Wisconsin -- withdrew his name from the study and didn't even bother to start it.

His original plan was to design a "sham" machine that looked like the "MC-5A" -- aka "calmare" -- but which didn't deliver the alleged "scrambled" signals.

Closer study, however, revealed that the device was nothing more than an ordinary TENS device -- and not even a very good one at that.

As it turned out that all the "MC-5A" actually did was generate shocks at random -- that is what constituted the "scrambled" signal.

Taking the time to design a "sham" device as a control no longer seemed worth the effort -- if, indeed, it was even possible to control for random shocks.

Also consider that the device has been promoted in the US for over 4 years with participation at ASCO and other medical meetings, yet has probably not sold not sold even a half-dozen of the devices to private physicians.

Part of that, of course, is due to the fact Medicare and insurance companies won't reimburse its cost since they consider it "experimental." However, if it was truly effective, one might reasonably expect it would attract more interest from clinicians.