Complex regional pain syndrome or reflex sympathetic dystrophy

Posted by oldnana @oldnana, Mar 22, 2016

After knee replacement, I developed RSD (reflex sympathetic dystrophy). I have had severe pain in my legs for a year and half. Does anyone have suggestion as to how I may control this disease

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@shalombendavid

have you explored using calmare/scrambler tx? they have had excellent results for crps.

Jump to this post

Can you please explain what calmare/scrambler tx is? I’m new to this. Thank you.

REPLY

Calmare 52 patient study.pdf
Calmare Double-blind study.pdf
Calmare John Hopkins Bone Pain.pdf
Calmare John Hopkins eye study.pdf
Calmare sperado.pdf
Calmare Starkweather Back Study.pdf
Great talking with you today about Calmare and chronic neuropathic pain. Here is some information about Calmare/Scrambler including studies and media coverage:

Calmare or Scrambler Therapy is a very remarkable non-invasive way in treating chronic neuropathic pain with NO side effects. The Mayo Clinic has conducted four studies while Johns Hopkins has done five studies and recently had an abstract published in Journal of Hospice and Palliative Medicine showing an amazing 95% reduction in pain on the average for patients with PHN with NO side effects.. http://www.ncbi.nlm.nih.gov/pubmed/23838448?dopt=Abstract

The Mayo Clinic Nov. 11th Health Letter featured Calmare. (see attachment) In addition, The Foundation For Peripheral Neuropathy put out a positive report on Calmare. The article was a collaboration between Johns Hopkins and The Mayo Clinic. https://www.foundationforpn.org/?s=scrambler+therapy :
The MCA-5A treatment is FDA cleared and creates a series of complex artificial neuronal messages that are transmitted to the brain via the body's dermatome pathways. Five independent channels are available to transmit the artificial messages via surface electrodes attached to the skin in the dermatome region of the patient's pain.

The perception of pain during the treatment is inhibited by artificial messages of "no pain" that replace those of pain. You know it's working because during the therapy sessions, when proper electrode placement is attained, patients typically report zero pain.

After a series of treatments, the patient may experience significant pain reduction for an extended period of time. The duration of time depends upon the underlying cause and intensity of the pain and other factors. It is usually between 3 to 6 months. After which the patients would receive a booster treatment of 1 to 3 treatments to achieve zero pain again.

Here is a recent PBS story on Calmare: https://drive.google.com/file/d/1Kq4QEOsudVZtS2sQ2Hvm3dpsVZjpNyhB/view

The Mayo Clinic recently released a video about treating CIPN with Calmare. http://sharing.mayoclinic.org/2015/02/19/breaking-away-from-the-pain-with-the-help-of-the-scrambler/

Here is an article published in Pain Medicine News.
http://www.painmedicinenews.com/Complementary-and-Alternative/Article/08-16/Scrambler-Therapy-Found-Promising-in-Pilot-Study/37477
MD Anderson produced this video about Calmare:
https://www.mdanderson.org/publications/cancer-newsline/spring-2017/pain-management-with-scrambler.html?intcmp=Highlights5_ScramblerTherapyCancerPain
.
The Mayo Clinic is currently conducting several studies with Calmare. They published an abstract in May 2014 at ASCO showing both a reduction in pain and durability of the treatment 10 weeks later. https://meetinglibrary.asco.org/record/93592/abstract

The Massey Cancer Center announced the completion of a back study with a sham device. The study showed a significant difference in pain reduction between the Calmare patients and those treated with the sham device.http://www.clinicaltrials.gov/ct2/show/results/NCT01896687?term=calmare&rank=3 (This study shows Calmare works for back pain and is not a placebo)

There are multiple studies that have been done by both The Mayo Clinic and Johns Hopkins (see attachments)

RSDs.org talks about CRPS and Calmare: http://rsds.org/calmare-scrambler-therapy-crps/

Dr. Thomas Smith from Johns Hopkins talks about Calmare: http://nationalpainreport.com/researcher-says-calmare-scrambler-provides-pain-relief-8821495.html

The US military has purchased 20 machines for several U.S. military medical facilities in the U.S. and overseas including The VA, The US Army, The US Air Force and The US Navy.

Calmare is currently in several hospitals and cancer centers including MD Anderson, The Mayo Clinic in Rochester, Minn, Johns Hopkins, Dignity Health in Phoenix, Providence Regional Cancer Partnership, Seattle, Regional Health in Rapid City, Mercy Hospital in St. Louis, Walter Reed in Baltimore, Andrews Air Force Hospital in Washington D.C., Stony Brook University Medical Center, New York, The Hartford Hospital in Connecticut, The Medical University in South Carolina and The City of Hope in Los Angeles.

Here are some links to media coverage about Calmare , also called Scrambler Therapy: (including the" Doctors Show")
PBS: https://drive.google.com/file/d/1Kq4QEOsudVZtS2sQ2Hvm3dpsVZjpNyhB/view
https://www.ksl.com/article/25506361/fda-approved-device-offers-non-drug-option-for-pain
http://www.ksl.com/?nid=148&sid=35487450
https://www.ksl.com/article/13770113/teen-hit-by-lightning-trying-out-new-device-to-deal-with-pain
https://www.ksl.com/article/16580318/medical-device-gives-new-life-to-utah-boy
https://na01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.reddit.com%2Fr%2Fpennystocks%2Fcomments%2F150e98m%2Fsecond_chance_to_get_into_hot_bitcoin_miner%2F&data=05%7C01%7C%7C8436c53fccd044eb809f08db86cec2ec%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C638251994815673492%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=bzU0DYWjjLJbEUtin1B2DkRnJX9MO7emixzvyq1ISQ0%3D&reserved=0 (Doctors show)
http://sharing.mayoclinic.org/2015/02/19/breaking-away-from-the-pain-with-the-help-of-the-scrambler
https://www.facebook.com/1737083399933677/videos/1766148400360510/
Here are some Calmare websites:
http://www.calmarett.com
http://www.cprcenters.com
https://calmaretherapynj.com
Conditions treated by Calmare:
https://cprcenters.com/conditions-treated
--
there was also a recent article in the new england journal of medicine authored by dr. tom smith from johns hopkins.

REPLY
@shalombendavid

Calmare 52 patient study.pdf
Calmare Double-blind study.pdf
Calmare John Hopkins Bone Pain.pdf
Calmare John Hopkins eye study.pdf
Calmare sperado.pdf
Calmare Starkweather Back Study.pdf
Great talking with you today about Calmare and chronic neuropathic pain. Here is some information about Calmare/Scrambler including studies and media coverage:

Calmare or Scrambler Therapy is a very remarkable non-invasive way in treating chronic neuropathic pain with NO side effects. The Mayo Clinic has conducted four studies while Johns Hopkins has done five studies and recently had an abstract published in Journal of Hospice and Palliative Medicine showing an amazing 95% reduction in pain on the average for patients with PHN with NO side effects.. http://www.ncbi.nlm.nih.gov/pubmed/23838448?dopt=Abstract

The Mayo Clinic Nov. 11th Health Letter featured Calmare. (see attachment) In addition, The Foundation For Peripheral Neuropathy put out a positive report on Calmare. The article was a collaboration between Johns Hopkins and The Mayo Clinic. https://www.foundationforpn.org/?s=scrambler+therapy :
The MCA-5A treatment is FDA cleared and creates a series of complex artificial neuronal messages that are transmitted to the brain via the body's dermatome pathways. Five independent channels are available to transmit the artificial messages via surface electrodes attached to the skin in the dermatome region of the patient's pain.

The perception of pain during the treatment is inhibited by artificial messages of "no pain" that replace those of pain. You know it's working because during the therapy sessions, when proper electrode placement is attained, patients typically report zero pain.

After a series of treatments, the patient may experience significant pain reduction for an extended period of time. The duration of time depends upon the underlying cause and intensity of the pain and other factors. It is usually between 3 to 6 months. After which the patients would receive a booster treatment of 1 to 3 treatments to achieve zero pain again.

Here is a recent PBS story on Calmare: https://drive.google.com/file/d/1Kq4QEOsudVZtS2sQ2Hvm3dpsVZjpNyhB/view

The Mayo Clinic recently released a video about treating CIPN with Calmare. http://sharing.mayoclinic.org/2015/02/19/breaking-away-from-the-pain-with-the-help-of-the-scrambler/

Here is an article published in Pain Medicine News.
http://www.painmedicinenews.com/Complementary-and-Alternative/Article/08-16/Scrambler-Therapy-Found-Promising-in-Pilot-Study/37477
MD Anderson produced this video about Calmare:
https://www.mdanderson.org/publications/cancer-newsline/spring-2017/pain-management-with-scrambler.html?intcmp=Highlights5_ScramblerTherapyCancerPain
.
The Mayo Clinic is currently conducting several studies with Calmare. They published an abstract in May 2014 at ASCO showing both a reduction in pain and durability of the treatment 10 weeks later. https://meetinglibrary.asco.org/record/93592/abstract

The Massey Cancer Center announced the completion of a back study with a sham device. The study showed a significant difference in pain reduction between the Calmare patients and those treated with the sham device.http://www.clinicaltrials.gov/ct2/show/results/NCT01896687?term=calmare&rank=3 (This study shows Calmare works for back pain and is not a placebo)

There are multiple studies that have been done by both The Mayo Clinic and Johns Hopkins (see attachments)

RSDs.org talks about CRPS and Calmare: http://rsds.org/calmare-scrambler-therapy-crps/

Dr. Thomas Smith from Johns Hopkins talks about Calmare: http://nationalpainreport.com/researcher-says-calmare-scrambler-provides-pain-relief-8821495.html

The US military has purchased 20 machines for several U.S. military medical facilities in the U.S. and overseas including The VA, The US Army, The US Air Force and The US Navy.

Calmare is currently in several hospitals and cancer centers including MD Anderson, The Mayo Clinic in Rochester, Minn, Johns Hopkins, Dignity Health in Phoenix, Providence Regional Cancer Partnership, Seattle, Regional Health in Rapid City, Mercy Hospital in St. Louis, Walter Reed in Baltimore, Andrews Air Force Hospital in Washington D.C., Stony Brook University Medical Center, New York, The Hartford Hospital in Connecticut, The Medical University in South Carolina and The City of Hope in Los Angeles.

Here are some links to media coverage about Calmare , also called Scrambler Therapy: (including the" Doctors Show")
PBS: https://drive.google.com/file/d/1Kq4QEOsudVZtS2sQ2Hvm3dpsVZjpNyhB/view
https://www.ksl.com/article/25506361/fda-approved-device-offers-non-drug-option-for-pain
http://www.ksl.com/?nid=148&sid=35487450
https://www.ksl.com/article/13770113/teen-hit-by-lightning-trying-out-new-device-to-deal-with-pain
https://www.ksl.com/article/16580318/medical-device-gives-new-life-to-utah-boy
https://na01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.reddit.com%2Fr%2Fpennystocks%2Fcomments%2F150e98m%2Fsecond_chance_to_get_into_hot_bitcoin_miner%2F&data=05%7C01%7C%7C8436c53fccd044eb809f08db86cec2ec%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C638251994815673492%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=bzU0DYWjjLJbEUtin1B2DkRnJX9MO7emixzvyq1ISQ0%3D&reserved=0 (Doctors show)
http://sharing.mayoclinic.org/2015/02/19/breaking-away-from-the-pain-with-the-help-of-the-scrambler
https://www.facebook.com/1737083399933677/videos/1766148400360510/
Here are some Calmare websites:
http://www.calmarett.com
http://www.cprcenters.com
https://calmaretherapynj.com
Conditions treated by Calmare:
https://cprcenters.com/conditions-treated
--
there was also a recent article in the new england journal of medicine authored by dr. tom smith from johns hopkins.

Jump to this post

Thank you for all of this info, it looks very hopeful. What is your background? I am in the SF Bay Area and newly suspected with CRPS. It affects my right dominant hand from a fall on 6/4/23 and surgery with plate on 6/13/23. I understand immediate treatment will give me the best outcome, including potentially reversing the course because it is within 3 months. How can I find my best path?

REPLY
@chadessa

Thank you so very kindly!

Jump to this post

Is Tom on this forum?

REPLY
@shalombendavid

Calmare 52 patient study.pdf
Calmare Double-blind study.pdf
Calmare John Hopkins Bone Pain.pdf
Calmare John Hopkins eye study.pdf
Calmare sperado.pdf
Calmare Starkweather Back Study.pdf
Great talking with you today about Calmare and chronic neuropathic pain. Here is some information about Calmare/Scrambler including studies and media coverage:

Calmare or Scrambler Therapy is a very remarkable non-invasive way in treating chronic neuropathic pain with NO side effects. The Mayo Clinic has conducted four studies while Johns Hopkins has done five studies and recently had an abstract published in Journal of Hospice and Palliative Medicine showing an amazing 95% reduction in pain on the average for patients with PHN with NO side effects.. http://www.ncbi.nlm.nih.gov/pubmed/23838448?dopt=Abstract

The Mayo Clinic Nov. 11th Health Letter featured Calmare. (see attachment) In addition, The Foundation For Peripheral Neuropathy put out a positive report on Calmare. The article was a collaboration between Johns Hopkins and The Mayo Clinic. https://www.foundationforpn.org/?s=scrambler+therapy :
The MCA-5A treatment is FDA cleared and creates a series of complex artificial neuronal messages that are transmitted to the brain via the body's dermatome pathways. Five independent channels are available to transmit the artificial messages via surface electrodes attached to the skin in the dermatome region of the patient's pain.

The perception of pain during the treatment is inhibited by artificial messages of "no pain" that replace those of pain. You know it's working because during the therapy sessions, when proper electrode placement is attained, patients typically report zero pain.

After a series of treatments, the patient may experience significant pain reduction for an extended period of time. The duration of time depends upon the underlying cause and intensity of the pain and other factors. It is usually between 3 to 6 months. After which the patients would receive a booster treatment of 1 to 3 treatments to achieve zero pain again.

Here is a recent PBS story on Calmare: https://drive.google.com/file/d/1Kq4QEOsudVZtS2sQ2Hvm3dpsVZjpNyhB/view

The Mayo Clinic recently released a video about treating CIPN with Calmare. http://sharing.mayoclinic.org/2015/02/19/breaking-away-from-the-pain-with-the-help-of-the-scrambler/

Here is an article published in Pain Medicine News.
http://www.painmedicinenews.com/Complementary-and-Alternative/Article/08-16/Scrambler-Therapy-Found-Promising-in-Pilot-Study/37477
MD Anderson produced this video about Calmare:
https://www.mdanderson.org/publications/cancer-newsline/spring-2017/pain-management-with-scrambler.html?intcmp=Highlights5_ScramblerTherapyCancerPain
.
The Mayo Clinic is currently conducting several studies with Calmare. They published an abstract in May 2014 at ASCO showing both a reduction in pain and durability of the treatment 10 weeks later. https://meetinglibrary.asco.org/record/93592/abstract

The Massey Cancer Center announced the completion of a back study with a sham device. The study showed a significant difference in pain reduction between the Calmare patients and those treated with the sham device.http://www.clinicaltrials.gov/ct2/show/results/NCT01896687?term=calmare&rank=3 (This study shows Calmare works for back pain and is not a placebo)

There are multiple studies that have been done by both The Mayo Clinic and Johns Hopkins (see attachments)

RSDs.org talks about CRPS and Calmare: http://rsds.org/calmare-scrambler-therapy-crps/

Dr. Thomas Smith from Johns Hopkins talks about Calmare: http://nationalpainreport.com/researcher-says-calmare-scrambler-provides-pain-relief-8821495.html

The US military has purchased 20 machines for several U.S. military medical facilities in the U.S. and overseas including The VA, The US Army, The US Air Force and The US Navy.

Calmare is currently in several hospitals and cancer centers including MD Anderson, The Mayo Clinic in Rochester, Minn, Johns Hopkins, Dignity Health in Phoenix, Providence Regional Cancer Partnership, Seattle, Regional Health in Rapid City, Mercy Hospital in St. Louis, Walter Reed in Baltimore, Andrews Air Force Hospital in Washington D.C., Stony Brook University Medical Center, New York, The Hartford Hospital in Connecticut, The Medical University in South Carolina and The City of Hope in Los Angeles.

Here are some links to media coverage about Calmare , also called Scrambler Therapy: (including the" Doctors Show")
PBS: https://drive.google.com/file/d/1Kq4QEOsudVZtS2sQ2Hvm3dpsVZjpNyhB/view
https://www.ksl.com/article/25506361/fda-approved-device-offers-non-drug-option-for-pain
http://www.ksl.com/?nid=148&sid=35487450
https://www.ksl.com/article/13770113/teen-hit-by-lightning-trying-out-new-device-to-deal-with-pain
https://www.ksl.com/article/16580318/medical-device-gives-new-life-to-utah-boy
https://na01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.reddit.com%2Fr%2Fpennystocks%2Fcomments%2F150e98m%2Fsecond_chance_to_get_into_hot_bitcoin_miner%2F&data=05%7C01%7C%7C8436c53fccd044eb809f08db86cec2ec%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C638251994815673492%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=bzU0DYWjjLJbEUtin1B2DkRnJX9MO7emixzvyq1ISQ0%3D&reserved=0 (Doctors show)
http://sharing.mayoclinic.org/2015/02/19/breaking-away-from-the-pain-with-the-help-of-the-scrambler
https://www.facebook.com/1737083399933677/videos/1766148400360510/
Here are some Calmare websites:
http://www.calmarett.com
http://www.cprcenters.com
https://calmaretherapynj.com
Conditions treated by Calmare:
https://cprcenters.com/conditions-treated
--
there was also a recent article in the new england journal of medicine authored by dr. tom smith from johns hopkins.

Jump to this post

@shalombendavid can Calmare be used when you have a DRG stimulator implanted?

Do these studies show long term effectiveness of the Calmare therapy?
How many years have they followed people who have received the treatment and do they fall into remission? In scanning the links posted above, I see that several are 4-9 years old (including the Mayo Clinic one). Are there more recent followups to some of these early studies? On the Calmare website, it states that the mean time before a series of booster treatment (typically 5 treatments) is needed is 1-3 months. At a cost of $300 per treatment or $3000 for 10-12 treatments needed, and then another $1500 every 1-3 months, that is prohibitively expensive for many, many people.

Is it effective for CRPS regardless of the location in the body?

Lastly, BUT MOST IMPORTANTLY, if it is such an effective treatment, why is it so expensive and only available in clinics that specialize in the treatment vs. being part of PT and covered by insurance so that everyone can benefit from it? And why are so few practitioners offering it? When I checked the Calmare website I was surprised to see only 15 certified Medical Centers and/or Therapeutic centers in the entire U.S. I counted an additional 37 places who are NOT certified, but why would anyone want to go to a place that was not certified?

Thank you for your posting and links. I look forward to you providing the answers to my questions above!

@rwinney is this treatment still advocated by the Mayo Clinic and do they offer it as one of their services? Do they use at the Pain Rehabilitation Center during the 3 week program. Have they found it effective for CRPS? Any insights you can provide, would be helpful!

REPLY

Hello @shalombendavid. You've presented a lot of information about Calmare Scrambler therapy for helping CRPS. Have you been diagnosed with CRPS? Have you used Calmare Scrambler therapy? If so, do you mind sharing your experience with it? Thank you

REPLY
@connie2023

@shalombendavid can Calmare be used when you have a DRG stimulator implanted?

Do these studies show long term effectiveness of the Calmare therapy?
How many years have they followed people who have received the treatment and do they fall into remission? In scanning the links posted above, I see that several are 4-9 years old (including the Mayo Clinic one). Are there more recent followups to some of these early studies? On the Calmare website, it states that the mean time before a series of booster treatment (typically 5 treatments) is needed is 1-3 months. At a cost of $300 per treatment or $3000 for 10-12 treatments needed, and then another $1500 every 1-3 months, that is prohibitively expensive for many, many people.

Is it effective for CRPS regardless of the location in the body?

Lastly, BUT MOST IMPORTANTLY, if it is such an effective treatment, why is it so expensive and only available in clinics that specialize in the treatment vs. being part of PT and covered by insurance so that everyone can benefit from it? And why are so few practitioners offering it? When I checked the Calmare website I was surprised to see only 15 certified Medical Centers and/or Therapeutic centers in the entire U.S. I counted an additional 37 places who are NOT certified, but why would anyone want to go to a place that was not certified?

Thank you for your posting and links. I look forward to you providing the answers to my questions above!

@rwinney is this treatment still advocated by the Mayo Clinic and do they offer it as one of their services? Do they use at the Pain Rehabilitation Center during the 3 week program. Have they found it effective for CRPS? Any insights you can provide, would be helpful!

Jump to this post

Hi @connie2023, thanks for tagging me with questions about Calmare Scrambler therapy. I can not speak to whether Mayo Clinic clinicians recommend this treatment. I can however attest to the fact that the Mayo Clinic Pain Rehabilitation Center supports non-invasive techniques to manage chronic pain and symptoms by way of bio-feedback, cognitive behavioral therapy, physical therapy, occupational therapy, etc... - they do not use Calmare Scrambler Therapy.

This link offers an overview of the PRC program for those who may be interested:

Mayo Pain Rehab Center- overview -
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
I'm excited for you to be attending the PRC! 😊 How have you been preparing? Pease remind me again when you go???

REPLY

@rwinney I am scheduled to go to the PRC October 23rd. I was told that I would receive more information two weeks before my start date so I am not doing anything to prepare at this time.

REPLY
@connie2023

@rwinney I am scheduled to go to the PRC October 23rd. I was told that I would receive more information two weeks before my start date so I am not doing anything to prepare at this time.

Jump to this post

That's right, now I recall, the information is sent 2 weeks prior to arrival. Thanks for the reminder, it's been a couple of years since I graduated. 😊

REPLY
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