NeuroTalk Support Groups - Calmare Therapy (Positive or Negative personal stories)

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Calmare Therapy (Positive or Negative personal stories) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/170536-calmare-therapy-positive-negative-personal-stories.html)

RSD Calmare scrambler therapy

The experts should let you know its meant to be used prior to it spreading to other locations than the original injury location. You go above the injured area on a meaty/fatty (Im very thin at the foot/ankle) about 3/4 fingers above injury & you go daily until pain is decreased or gone. I hv RSD in my left ankle that shoots up my leg & makes my entire body jerk when it attacks. After 10 consecutive (excluding weekends) treatments, my pain level has decreased significantly & sharp attacks which could last for dayshv stopped. You hv to be committed & hv patience but I would advise everyone with localized RSD to try this. I was also told by my physicians that it doesnt work on fibromyalgia

Hello Itworks,

I am making the assumption your screen name is in reference to the Calmare? Was this your intention? I don't mean to offend but I am sure you can understand that we sometimes get people marketing a product instead of making a legitimate post And single initial posts of a hallelujah nature tend to raise suspicion.

This is a great place for sharing and support. The members here really care about one another. I see this is your first post so welcome. I suggest you start a new thread to say hello and introduce yourself. There is also an "Our stories" sticky post at the top of the RSD page.

Be well,

I've just checked the patent mentioned on page 2 if you scroll down to background to the invention para 2 it states it is a tens machine
http://patft.uspto.gov/netacgi/nph-P...S=PN/8,380,317

Hi Kevscar,

I hope you are doing alright.

I agree that it shares features with a TENS. It stimulates the nerve from outside the body. I think maybe the amplitude technical specs are different in the way that Frequency Specific Microcurrent is similar but different from TENS.

I wish that I had more faith in our patent office and FDA categories. New medical devices here tend to piggyback on a previously approved category to get out of lengthy clinical safety trials. So you can end up with different devices in the same category.

I found this out the hard way when early on in my journey a podiatrist recommended EWST, extracorporeal shock wave treament. I tried it once and it was excruciating. It blasts shock waves through the tissue and is like lithotripsy on a small local area. The device by Dynatron, is approved under the FDA as a "massager". :eek: Crazy!

I think we have to be careful of new gizmo treatments in general and have a high degree of suspicion about them. I got into trouble with cold laser also. Things that don't aggravate others can aggravate our already sensitive nerves and should always be approached with caution.

The WC doctor I saw recently told me that two RSD patients paid out of pocket for "scrambler" therapy and only one had success.

I agree that it shares features with a TENS. It stimulates the nerve from outside the body. I think maybe the amplitude technical specs are different in the way that Frequency Specific Microcurrent is similar but different from

When I went for my 1st session of Scrambler that is exactly what Dr. d'Amato told me about how they obtained a patent.

I had some moderate success with Scrambler. It wasn't a cure-all treatment for me, but it did significantly reduce my pain and helped stop a mirror spread.

I am a worker's comp patient and was the 1st person to have Scrambler covered by my insurance company. It was hard work to get it covered, but worth it. They even paid for me to stay in a hotel during the treatment since it was out of state. I hope I helped pave the way for other WC people to get the treatment.

SloRian,
I live in Santa Fe, NM and have new onset RSD after a minor ankle fracture 8 weeks ago. I have a long complicated history of neuroimmune diseases and need to travel by RV so I can control my diet and other things or the trip will be counterproductive. It would mean a lot to me to know who you had a good experience with in Arizona, or even Utah. I'm so happy for you that you found something that helps your daughter. I have a sick daughter too and nothing makes me happier than her improvement.
Warmly,
Jamie

P.S. I just joined this forum and it won't let me post my email address and I don't see how to send you a private message. Can you figure out how to contact me privately? Or reply with the town. Is it in Mesa?

Calmare Location in Phoenix

Quote:

Originally Posted by SloRian (Post 1018498)

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.

Can you say which clinic you went to in Phoenix that gave your daughter the good result? I want to try Calmare and don't want to go anywhere that might not be beneficial. Thank you so much
G

For those who have responded well to Calmare therapy, does the redness & swelling decrease while in remission? Also did the muscle spasms stop?

Trying to get a better idea of what remission with calmare means.

Thank you!

I'm in AZ and would love to know which clinic you had better success with so I don't waste my energies. Thank you.

I have been suffering with RSD/CRPS for 26 years today, this day *exactly* and I have yet to "understand" what remission means. Is it that you plateau? That the symptoms stop getting worse, but you don't get better either? Is it that?

Quote:

Originally Posted by SloRian (Post 1003176)

Hi Jasper,

My daughter had excellent results - she went into remission after 12 treatments. The remission lasted for 3 months (within the typical range), then it started to come back and she needed 4 more treatments to get back into remission (also typical - we're hoping this remission will go 6 months or longer - that's the pattern). It's been almost a month now and she's going strong. We went to NJ, and the doc and his staff were professional and kind and very friendly.

I have a great update, too - I wrote a 5-page letter to my insurance company, trying to get them to cover the cost (I pointed out that my daughter was scheduled for a $60,000 SCS, and was put into remission for under $3000 with Calmare, which is quite a savings for the insurance company). I just got a letter from our insurance company yesterday, and they paid 80% of the costs of the Calmare treatment! This is great news - part of the reason why this treatment isn't well-known is that it isn't covered by many insurance companies yet. Insurance companies won't pay for things out of the goodness of their hearts, but they might pay if they see it saves them money. Anyway, I hope they will start paying for more people to try this. Like most treatments, it won't work for everyone - but it sure worked for my daughter, and it's non-invasive and painless. I'm very grateful we tried it.

Hi There 👋🏼
New to this group & here to learn right now. Thats wonderful the Calmere Therapy worked for your daughter. such a relief for her & your family, Im sure. You had mentioned writing several page letter to your insurance company to fight for coverage. Would you be willing to send me a DM & share a copy of that? I have no support to help me do that & just not capable currently for taking that on having a template to work from would be incredibly helpful!!!

Have intractable pain & after years of determination, trying combo of different therapies & lifestyle changes was able to stabilize my CRPS for many years.. But now for last 8 months in excruciating flare non stop, barely able, eat, sleep, ect. Doing everything I possibly can on my own but nervous system is so dis regulated, those modalities are barely working. If your willing to share & help a warrior get some relief, Id be so grateful!! All pain specialist want to do is SCS & wise enough to know, thats not the right route for me..

Thanks for your time & hope to here from you soon. Would love to hear an update on your daughters recovery as well. Take care 🧡