Hi! Hope you are all having the best possible day! I am just wondering if someone has ever gotten worse, and how much, or better, and how much from Calmar therapy in RI with Dr. D'Amato. Any info would be greatly appreciated?

Thanks a lot!

I have heard that Calmare is not effective if your RSD is full body, and it can even make you much worse off. It can work well if only one limb is involved.

Good luck!

There is a woman on FB whose daughter was made worse but to my knowledge, the girl has other issues besides RSD. Ketamine was the next step for her and it offered her some relief. You can find her on some RSD boards. Her first name is Marianne.

JaneJane My daughter has had RSD for five years..She is now full body..She has had almost every treatment, sts, scs (and removed) blocks, ketamine, opiads, anti depressants, nothing has taken the pain away for her as completely as the Calmare Therapy, no it doesn't last a long llong time, but a few weeks of complete relief for her is better than nothing...She has spent the better part of three years in bed, but after calmare treatments she can for awhile, enjoy being a mom and wife again..... I know because I am with her every day and have been for five years....this is just her story

PS this is the only external treatment that so far has not spread the RSD in her body

good luck and god bless, momofrsdsjk

If she is full body already than obviously the RSD cannot spread any further than it has....

Jane, if you are full body I would urge caution. I am from RI and very active with the local RSD support group. There are several who have gone to Dr. d'Amato, and CONSISTENTLY it would appear that one limb RSDers may achieve success with this treatment, but full body RSDers end up worse off.

Xoxo. Sandy

I am pretty much full body and the calmar did not help me,,I found the treatment painful and he seemed to get annoyed that I couldn't tolerate it...

Debbie

Hello!Hello

Thank you everybody for letting me know about your experiences. I so wish we had many more options. I do recommend you all to get a vitamin c infusion. They have helped me soooooooooooooo much! I would be in much worse shape without them!

Good luck and hugs and kisses and thanks to all of you for replying to my post!

Anyone interested in this treatment should really do some extensive internet research. It didn't take much digging for me to find some questionable posting at other sites that look like hype from one patient that might have a personal interest in the company. Buyer Beware and all that...

If you have out of pocket funds and haven't tried HBOT, it is worth a shot. I've never heard of it causing spread, and it reduced my swelling and pain.

Stacking non-invasive treatments is also something to consider.

If you can find an infrared sauna, you want want to try it out as well. If you can tolerate massage, not too light--not too deep, it has helped me. Warm water pt.

I have been able to fend off escalating RSD symptoms that SURE seemed like spread, by aggressively utilizing meds and the aforementioned, including an ankle problem that had been getting slowly worse over the span of a few years.

Have you tried Hooshmand's 4 F's diet?

Or meditation? The audio book by Andrew Weil, "Breathing:The Master Key to Self Healing" is a good place to start IMO.

Yoga or Tai Chi, too.

If I'm sounding like a broken record y'all, please excuse me!