I've also read that they are just glorified Tens machines. Had one of those didn't work

We went through that this last time my daughter came out of remission. We tried a provider closer to home, but you could tell that they just weren't as experienced, plus for some reason they changed the pads to a normal TENS pad, and although she "zeroed out" during treatment, the pain came back about 6 hours later, like you, and after 4 treatments, the pain came back completely over the weekend. The next week, we went back to the provider that we went to last time, and it worked really well, and she's back in remission.

I'll give some more details in my next post, but I wanted to reply specifically to your post since we went through what you were asking about.

It’s taken me a long time to post again on this thread, because it is a very controversial topic, as well as a very emotional and painful topic for me, so I needed to have some time and space to think how best to respond. Then we went through a death in the family, and I had to travel across the country to deal with that. Then my daughter came out of remission, and we had to go through two cycles of Calmare treatments to get her back into remission (the first one was with a provider a lot closer to home, but they didn’t have the experience, and it wasn’t working well, so we went back to the other provider and it worked great and she’s back in remission).

The thread starter asked for "this is what it's like" or "here's what to expect" personal experience stories, so I’ll share some more details now. As far as personal experience, my daughter and I have personal experience with both a TENS machine and the Calmare machine. We've both had many, many treatments with a TENS machine because of surgeries and RSD, but we just didn't know that was its name until a month or so ago when I finally realized that the electrical thingy that they were hooking us up to at PT was a TENS machine (and my PT confirmed this).

So here is one big difference that I, as a patient, saw between the two : they are hooked up VERY differently. TENS machine pads go right on the sore area or close around it, but Calmare pads are just the opposite - they do NOT go on the worst area at all - in fact, they specifically stay away from it. Half of the pads go around it, and the other half go on the spine. So when my daughter was treated with a TENS machine at PT, the pads all went on her foot, close to the sorest areas. However, when she was treated with the Calmare machine, half of the pads circled around the original injury site area but stayed away from it, and the other half went on her spine. We never had that setup with a TENS machine, in all of our many treatments with it. Also, the feeling that we get is very different.

As far as some helpful facts to add to the collection : the Calmare machine has its own separate, unique U.S. patent - number 8,380,317 - which was granted on February 19, 2013. Here is the link to the U.S. patent office showing the Calmare patent: here. The criteria for getting a U.S. patent is that it has to be something that is “NEW and useful” (link - here). IOW, the Calmare machine, although in the general category of TENS (and there are a lot of TENS machines out there!) has something that is so new and different that it has received its own unique patent. I think that says a lot about how different it is from a regular TENS machine.

Also, highly prestigious medical institutions like the Mayo Clinic and the National Cancer Institute clearly think it's different than a regular TENS machine, because they are conducting official government tests with it. If you go to http://clinicaltrials.gov, an official U.S. government website, and search for "Scrambler", you can check out these studies. I just don't see why they would do this with something that is only another TENS machine.

Anyway, I hope the facts and experiences that people are sharing will help members to know a little more about this treatment.

Please keep posting your story, thoughts and experience with this and any other therapy you may try. Yes, many people make things into more of an argument about what works and what doesn't, what is right and what is wrong but truth be told there is NO TREATMENT for RSD/CRPS/CRPS II/CAUSALGIA or any other name it falls under. The goals of treatment are different for everyone and if there was anything that "treated" everyone with positive results then there would essentially be a cure.. until that time, I personally would like to see what everyone has to say controversial or not that way - I can make my own decision about what options to pursue that will help me reach my goals.

I have an SCS that many people told me not to get or I read horror stories about and if I had listened I would not be able to walk more than 10-15 steps.. the SCS isn't perfect by any stretch BUT it has allowed me to walk without the excruciating pain I had prior to turning the unit on. I even tested its effectiveness by turning it off .. YOUCH it went right back on and has been running 24/7 since. Again, it doesn't work for everyone but for some it makes all the difference in the world.

Keep sharing.. everyone's experience is important!!

A very balanced and well thought out response SloRian :)

I've been skeptical myself about Calmare, and yours is the first post that's made me consider that there might, just might, be something in it after all....

Thanks,

Bram.

Thank you so much, zookester and Bram! Your posts meant a lot to me. I had no idea about the controversy when I started posting :eek: It's very painful to be an honest person posting honestly and then have people think you're one of the shills :( I don't know why this treatment is so controversial, but I know it's not just a TENS machine because I've experienced both, and if it even helps a small percentage of people, then it's worth having a thread on, IMO.

Interestingly enough, we just had a bad experience with it, which I wanted to share, too, to add to the information pot. We decided to try a provider that was closer to us but didn't have as much experience. When they hooked my daughter up, they used regular TENS pads instead of the other kind that they normally use in Calmare treatments, and my daughter had a really bad reaction to the treatment - the pad sites got really, really red (bright red) and terribly itchy, and it was very painful on her back, which should NOT happen. Now we were still getting her to "zero out" on the RSD pain during treatment, but she was also GETTING a lot of pain on her back. This is NOT normal; it should NOT happen this way. But the doctor thought that since she was zeroing out, it would be OK.

To make a long story shorter, even after switching to the regular Calmare pads, it just wasn't working - after 4 treatments, she was still at a 5 (when she comes out of remission, it doesn't jump right to an 8 or 9; it starts smaller). So we went back to the place that we went to before but was twice the distance, and it worked well, and she's back in remission.

Anyway, thanks again for your encouragement! :) It meant a great deal to me. And I'm SO glad that your SCS is working so well, zookester!

So here's the details about the Calmare treatment that did NOT work well for my daughter:

The one in New Jersey worked really, really well. We went there, all the way across the country, because that dr. was the one that had the most experience with RSD. That treatment put my daughter in remission for 3 months. She was not very strong, but ALL of the RSD symptoms went away, and she went completely off of Vicodin (she had to go down slowly and under dr's care).

When she started coming out of remission, we decided to try the clinic here in Arizona that had the most experience. If it didn't work, we would go back to NJ. Well, thank God it worked really well, and she entered her second remission. This remission was a lot stronger, and she even went surfing once! (not in Arizona :D it was when we visited my family in California). This remission lasted 3 months.

When she started coming out, we decided to try the other clinic in Arizona that didn't have as much experience, but was a lot closer (20 minutes away, instead of an hour, which is a big difference because I have trouble driving and she's tired after the treatment). This one started off differently right off the bat - for one thing, they used the type of pad that was used when we got TENS treatments at PT. With the normal pads, you can overlap them and put the signal right where you want it, but with these TENS pads, you couldn't overlap them, so they ended up in a different pattern on her back (I didn't realize this, or I would have said something sooner). I don't know WHY they didn't see this as a problem! I mean, the whole point is to get to certain specific points on the spine that are typically close, and these TENS pads won't let you do that!

Anyway, when they turned on the machine, instead of feeling really good, it hurt her - it felt like giant bee stings on her back, plus it itched badly. She did finally "zero out" during treatment, but the pain came back sooner, and the biggest thing is that instead of being at a zero after 4 treatments, she was still at a 5 - and she came in at a 4! IOW, she ended up getting a little worse. Finally we tried switching to the normal Calmare pads, but it was just too late and it just wasn't working, so we just decided to write it off and go back to the other place.

We went back to the other place the next week, where they followed the standard Calmare protocol, and it worked great. She is now in remission again after 4 treatments, and is getting stronger and stronger and starting to catch up on her schoolwork.

So anyway, I wanted to share that with you all (thanks for asking for my experiences, zookester :) ) because I'm interested in sharing everything with people, whether it's good or bad, so that they have as much info as possible to make their own decisions.

I just traveled from CA to RI for Calmar Tx with my 15 yo daughter who has had severe CRPS for 3 years. It worked! If you log on to the website or you tube you can see exactly what they do. They use the electrodes and put them on you, based on your affected pain area....check it out. CALMARE it awesome!!!
;):D

CALMARE is not by any means TENS.
 

I just want to make sure that everyone is aware that the Calmare therapy is nothing like TENS, it does not operate like the TENS, it does not target the same nerve fibers as the TENS.

I just wanted to clarify.

Here's to painfree days!

Hi. I've never had calmare therapy but wish you luck if you decide to do it. My warm thoughts are with you. Take care.