Complex Regional Pain Syndrome in 2015, What Have We Learned?

Complex Regional Pain Syndrome in 2015, What Have We Learned?

National Pain Report continued its broad coverage of Complex Regional Pain Syndrome in 2015, reporting on a new research, treatments, advocacy efforts and personal stories.  Here are a few of the highlights from 2015.

35-Year-Old Wife and Mother Describes Her “Addiction” to CDC

Christiane Parsons of Clifton Heights, Pennsylvania shared her comments on the CDC’s controversial draft guidelines for prescribing opioids.  “I can barely stand to have my children touch my left hand, arm, shoulder, and neck. I am a wife who cannot deal with the pain from my husband’s touch. You see I was diagnosed with CRPS/RSD in March of 2015, but I have been dealing with the enormous amount of pain, swelling so bad my skin wants to break open, and that feeling of bones being so cold that it burns from the inside out … Read More.

CRPS Took My Identity – I Took It Back

I was diagnosed with CRPS 6 years ago after a surgery to repair damage I had sustained to my wrist while kickboxing. Yes, you read that right; kickboxing. I may not look very ferocious at 5’4” and 125 lbs, but let me tell you, I had a mean right hook! I had a full time career as an electronic engineering technician, an even busier schedule as a mom, … Read More.

CRPS to Emergency Room Physicians – “Understand and Treat the Disease”

Complex Regional Pain Syndrome – known best as CRPS – is still a chronic pain disease that often goes underdiagnosed. Dr. Billy Alexander, an internal medicine physician from West Monroe, Louisiana understands. “Surprisingly, some physicians are somewhat skeptical about it,” he said. “But I know it’s real.” Alexander knows CRPS is real because his daughter injured her hip as a 21-year-old varsity college basketball player and … Read More.

A Mother Daughter Team Fights Fibro, RA, CRPS and More

“In the blink of an eye, your life can change.”  For Michelle DeMont of Culver City, California, her life changed in 1998 when the college student was struck by a car going 30 miles per hour in a parking lot.

She nearly died that day, and a few days since … Read More.

CRPS – Awareness Growing But Much to Do

People who are working for more understanding about Complex Regional Pain Syndrome think they are making progress.  “But there is an incredible amount of work still to do,” said Jim Broatch, the Executive Director of RSDSA for the past 15 years. CRPS is classified as a rare disorder by the United States Food and Drug Administration. However, up to 200,000 individuals … Read More.

RSD/CRPS Doesn’t Own Her

For Christa Whightsel, her “introduction” to CRPS started with what seemed to be a minor accident at work.  In 2008, the 20 year old former dancer was injured at work. She suffered a bone bruise and a slight break in the skin. It was enough to go to an emergency room, but something that seemed relatively minor at the time.  A week later she was “hurting so badly I couldn’t stand.” … Read More.

Study: CRPS Patients Get Limb Pain Relief with Dorsal Root Ganglion Stimulation

People suffering from complex regional pain syndrome (CRPS) gain meaningful limb pain relief with dorsal root ganglion (DRG) stimulation as opposed to traditional spinal cord stimulation (SCS), a new study says.  CRPS is a very painful condition that most often affects one of the limbs after an injury or trauma.  152 patients were enrolled in the ACCURATE study at 22 U.D. centers … Read More.

How CRPS Turned Me into a Crusader

Like so many CRPS sufferers, it started innocently. Ten years ago, when I was 32 I had a hysterectomy.  I started putting on weight – 50 pounds to be exact and that’s a lot of weight, especially when you’re 5-foot-4 inches tall. I decided to do something about it. I was working as an electrical engineer for John Deere in Iowa, so I’m wired to find solutions. …  Read More.

CRPS Message Being Heard in Emergency Rooms

Two men, committed to promoting the CRPS awareness and treatment, spent last week at the American College of Emergency Physicians meeting in Boston and came away believing their work is paying off.

There were two messages they wanted to deliver:  Understand that CRPS is Real, and Ketamine injections may help in treating CRPS … Read More.

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In 2015, National Pain Report partnered with RSDSA – an international not-for-profit organization, that provides support, education, and hope to all affected by the pain and disability of CRPS/RSD, and drives research to develop better treatments and a cure.

We intend on expanding our coverage on CRPS, and welcome your stories and experience.  Have something to share?  Email:  editor@nationalpainreport.com

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Authored by: Staff

There are 9 comments for this article
  1. leigh at 10:40 am

    Unfortunately, I am very familiar with the terminology, so for that reason, the error just jumped out at me.

  2. leigh at 10:31 am

    I am just wondering why the logo says “regional sympathetic dystrophy”which I believe is incorrect instead of REFLEX sympathetic dystrophy.

  3. Doc Anonymous at 8:10 am

    Leigh, the old terminology was “Reflex Sympathetic Dystrophy”. The new terminology is Complex Regional Pain Syndrome. The term “reflex” was used because it is frequently started by an injury to a nerve or other tissue. The term “dystrophy” was used because the affected limb or body part would frequently develop severe disuse dystrophy or atrophy as the person held the limb immobile as a protective measure since touch or movement often caused severe pain. Sympathetic was used because many of the visible features (skin color from blood flow, sweating, etc.) are controlled by the sympathetic system.

    The newer terminology is at least a recognition that the issue is far more complex and that it is still poorly understood….but it often involves a region of the body: a foot and/or ankle and/or leg or a hand and/or arm rather than body parts innervated by specific nerve roots or nerves. At least that is the way I learned it.

  4. Leigh at 1:53 pm

    Regional Sympathetic Dystrophy? I thought it was called Reflex Sympathetic Dystrophy. I don’t think I have ever read or heard it referred to as Regional Sympathetic Dystrophy.

  5. Doc Anonymous at 11:08 am

    I agree with Dave that new approaches are needed. Pain, in my view, is the cognitive awareness that there are abnormal signals coming from within the organism. Many pain syndromes affect primarily the electronic signals traveling TO the conscious centers, sometimes arising from abnormal peripheral structures.

    CRPS however involves abnormal electronic signaling from more centrally located centers TO THE PERIPHERAL EFFECTORS (both internal and in the skin). Thus, CRPS involves abnormal blood flow, circulation, and glandular activity like sweating. Classically these dysfunctions have been attributed to the sympathetic nervous system, but the electronic basis for CRPS may be more widespread. CRPS is indeed an extremely complex biologic disease. While it is virtually certain that simply relieving pain will reverse or “cure” CRPS, it is also more reasonable to hope that the other peripheral neural abnormalities may be amenable to corrective interventions. It will almost certainly require a radical rethinking of the function of the nervous system: viewing the nervous system as a 21st century electronic system rather than the mid-20th century concepts that now rule neural sciences.

  6. Gracie Bagosy-Young at 8:12 am

    Gentlemen (Dave and Doc Anonymous)-
    Clearly I am a patient and not a doctor. Please keep the conversation, and the studies, going. You work from the outside and we will answer your questions from the inside. We live with this second to second. We are thirsty for knowledge. We read everything that we can find. NO ONE wants solutions more than we do. We cling to each other for strength. We have been poked, prodded, cut on, treated, mistreated, and even lied to. We need more education, awareness, and help.

  7. Dave at 6:44 am

    Im glad to hear RSDSA is interested in curative research for RSD. I don’t think the folks who created the National Pain Strategy believe in cures, however. Perhaps the cures intitiative might help as it deals with “orphan” illnesses-and perhaps you can get someone in DHHS to view RSD as an orphan illness. Much focus on research on neuropathic conditions is on the brain- and the neurocentric model- so maybe the brain initiative folks might be open to research on RSD. My own belief with regard to RSD is that it is the neurocentric model misses the role of the immune system and metabolism in RSD. While changing the brain or peripheral nervous system might make the person with RSD feel better-other problem areas would remain unaddressed. New and more sophisticated models of research and practice are needed to tackle complex conditions like RSD- the simple-minded search for silver bullets has failed too many in pain-and I don’t see how it could work with RSD.
    I think pain care advocates should point out clearly that the current methods of research and practice miss the mark and an effort should be made to make a real departure from current practices and, instead to encourage independent and diverse thought to address the problems in pain care.

  8. Doc Anonymous at 5:59 am

    CRPS is probably the worst of all chronic pain syndromes. I am glad that NPR will be sharing more information about the disease. CRPS is clearly a disease in which the homeostatic mechanisms have gone dreadfully awry. CRPS clearly displays the dysintegration (NOT “disintegration”) of the balance of these homeostatic mechanisms. Perhaps the pain that people experience is the brain telling the person that there is a major dysfunction but the conscious centers cannot specify what the problem is. CRPS, unlike many chronic pain problems, has some distinctly visible characteristics and some distinctly objectively measurable features that correlate with the pain.