Opinion: Optimism for Better Days for the CRPS Community

Opinion: Optimism for Better Days for the CRPS Community

By Jim Broatch.

November is CRPS Awareness Month and we asked the long-time Executive Director of the RSDSA to share with the National Pain Report his feelings on where their hard work is taking them.

I’m very optimistic about the current and prospects of the CRPS community.

For the past several years, RSDSA has been involved in creating the necessary infrastructure for an expected increase in CRPS international clinical trials. We have provided the seed and ongoing funding for the International Research Consortium (IRC) for CRPS.

The creation of the IRC was a prerequisite because although there have been significant strides in CRPS research during the last 20 years, there still is no solid information or Randomized Clinical Trials (RCTs) treatment or even definitive information about mechanisms and treatment responsive phenotype because:

  • CRPS is a relatively rare condition and treatment trials have generally been small number (N) single site pilot studies. Federal agencies that approve treatment (e.g., FDA in the US) and insurance payers do not consider preliminary, pilot, or case series type evidence. Definitive trials are needed.
  • Funding levels for basic and clinical research are at historic lows. (Remember that only 2% of research health care dollars are invested in pain research).

Large, multi-site studies with appropriate numbers are needed to advance research and the IRC will accomplish this through pooling of resources internationally for rapid and conclusive studies.

Since CRPS was designated as a rare disease (prevalence of less than 200,000 in the United States), a number of pharmaceutical and medical device manufacturers have signaled their intention of sponsoring CRPS clinical trials.  Prior to this designation, I could only cite two major RCTs during the last twenty years. A number of corporations have approached me or members of our scientific advisory committee to discuss the feasibility of sponsoring trials now because CRPS has the rare disease moniker.

Currently, Grunenthal is sponsoring a clinical trial in the US of neridronic acid, to test its efficacy and safety in people with CRPS.  Some individuals with CRPS have traveled to Italy to bypass the trial since individuals who have had CRPS for more two years are excluded from the trial.

The other part of the necessary infrastructure we are helping to fund is the finalization of COMPACT- Core Outcome Measures for Complex Regional Pain Syndrome Clinical Trials. Historically, a wide range of different outcome measures have been used to capture the multidimensional nature of CRPS which was a significant limiting factor in the advancement the understanding of the mechanisms and management of CRPS. In 2013, an international consortium of patients, clinicians, researchers and industry representatives was established to develop and agree on, a minimum core set of standardized patient reported outcome measures for use in future CRPS clinical studies in an adult population (COMPACT). This work was completed and published in 2017.

Now, RSDSA is funding the addition to COMPACT of an internationally agreed core clinical outcome measurement set that will be collected alongside the patient reported outcome measures and stored on an electronic data capture system.

Speaking with and corresponding daily with members of the RSDSA community, I’m heartened by the increased clinical use of medical cannabis, ketamine, low-dose naltrexone (LDN), and graded motor imagery (GMI) and mirror box therapy.  But significant problems remain with the refusal of most insurers to pay for medical cannabis & ketamine and the lack of trained therapists in GMI.

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Authored by: Jim Broatch

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Yes Jim I agree, serious problems do remain. It’s a downright shame that what a lot of us are allowed or rather were allowed to have that works is paid for. Wouldn’t it be nice if we lived in a world where this country truly cared about all of its people? As I’ve read on this site more times than I can count, it’s not a one-size-fits-all world. One would think with all the progress this country has made over the decades and centuries, combined with the heartaches and tragedies seen also that it would want to help it’s people anyway it could! No matter what the medication, people who are suffering in pain should be allowed to be prescribed something that gives life and helps one prosper instead of being made to suffer needlessly just because our world and government flat-out doesn’t care anymore. Sometimes I wonder if they ever did. Thank goodness we still have God in heaven! My prayers go out to every single one of you, more than you know….

David LC Barker

I’ve just encountered my first supposedly failed urine test in over 15 years with the same pain MGMT Dr. And was immediately discharged without any personal contact. I was mailed a letter telling me that I failed for methamphetamine which I have never done. Is this standard practice especially since I have never failed a urine test in 15 years with the same Dr? Furthermore from laws I’ve been researching it states that the Dr. should have brought me back to discuss it with me. This is in Ohio. If anyone can help I would greatly appreciate it!

Geoffrey Nielson

Work, work, work.
Reading of the ‘snails’ progress of CRPS committee work, obvious grant writing, exhaustive and weak relationships with international providers and all met with skepticism, especially from the crowded row of pain recipients whose mental, physical and spiritual are the personal ‘metal’ stories.
Our lives pass through rigorous daily testing and work, work, work.
Most of us worldwide pain recipients have ‘opened the can of common sense’ to live better than our yesterdays.
All Lives Matter. This is replete with a not so understandable Power Greater than ourselves. We seek and receive what we ask and work for when others can be helped before our own needs first.
Today, I must rest more, play more, listen more, read more and work more on my attitude adjustments.
Lord bless us all.

Courtney

Barb, I have had CRPS for at least 15 years and have tried everything – it is pretty much throughout my whole body – by far, the best control has come from completely changing the way i eat. My local pain clinic and they are recommending eliminating all sugar and refined foods. All sugar. All refined food. This is hard, because many of us crave sugar when we are feeling stressed or in pain, but any sugar in my diet and the pain starts to ramp up. I eat a plant-based diet all cooked from scratch. The food is excellent, and I don’t miss the refined stuff anymore (well, almost never miss it). I also learned to work with a physical therapist who specializes in CRPS and do everything she suggested. The results have been miraculous and I have been able to stop using assistive devices, start hiking again (they said I would never be able to walk again), and while I do experience pain that varies from day to day, and have to watch how I take care of injuries, my pain level is down to a tolerable level and I am able to work, hike, garden and all the other things I love! I don’t know if your niece has tried this approach, but there are many more success stories like mine out there and it is worth a try. Please note that this means cooking from the actual veggies and beans and such and not buying canned or prepared ingredients – they all pretty much contain sugar and ingredients that can trigger pain response in sensitive individuals. My husband has gone along with the changes and quickly learned that he adores the food, finding it much better than the “normal” diet. Although we eat vegan, we do have a small amount of wild salmon each week along with a small amount of whole milk from grass-fed cows with our cereal for the Omega 3’s. I hope this helps.

Barb

I personally didn’t find much comfort in this article. My niece has CRPS 2 which I’m told by reading and by Pain Management Doctors is the Worst on the Pain scale over Cancer. I’ve watched her suffer in excruciating pain for 24 hours every day. No wonder they call it the “Suicide Disease”. She had a pain pump put in and unfortunately it never worked because of connecting problems. There are not too many nurturing surgeons that deal with pain pumps. I guess I’m wondering if there any trials for CRPS 2 ? If you could help in any way please let me know.

Jody Hoffman

The government isn’t concerned about funding research for chronic pain patients. They are spending billions of dollars on treatment and rehabilitation for addicts that are buying street drugs and ignoring people who are in genuine pain. Anything that will be a help to us is coming to late.