Overcoming Issues in CRPS Care
Despite this being a relatively rare disease, I've worked with a lot of CRPS patients and had extensive conversations with hundreds more…and there are some common threads that stick out as huge challenges and frustrations in our experiences.
Pain is complex. People are complex. This disease is incredibly complex.
We are the ones who experience and understand it intimately, yet we almost completely left out of the conversation at the highest levels of the pain space.
We need and deserve better:
Education around available treatment options
Understanding of how this disease and pain actually work
Collaboration between patient and provider
Autonomy and empowerment in care is critical.
CRPS patients are not difficult. We live with a complex, poorly understood, hard to treat disease that is largely invisible compared to how excruciating it is, especially after the earlier disease stage has passed and you're in the chronic stages.
If you have struggled to learn about the different options available in the pain space and have felt left out of the conversation with your provider, don't just accept that. Take the initiative to empower yourself so you can ask better questions and make better decisions. You can go here for more strategies to own your care and navigate overwhelm as a patient.
Some face palms are bigger than others... A recent example, a patient of mine in Europe had a Doctors appt to talk more about her treatment options for CRPS. She’s tried all the most common medications, so the obvious options are out. The frustrating part is they'd happily prescribe very strong opioids, but not cannabis - with a patient who had opioid addiction issues in the past.
They say there is no research to show its effective, which is true - but we use anecdotal evidence often when large scale studies are not available, and utilize alternative methods when more traditional ones have been exhausted. That’s what they’re for. There are not a million studies showing how effective opioids are for CRPS either. But for many it’s a tool they depend on - especially with a lack of access and education around more appropriate medication and treatment options.
Choices are important though. And applying evidence through the lens of common sense given where the patient is at, what else they’ve tried, what their past experiences are, and what they want want to avoid - is actually evidence based medicine. Though access to cannabis is understandably limited and it’s efficacy in this context is absolutely debatable, it serves as an example of something being a ‘good’ or ‘bad’ choice depending on the individual and their unique circumstances and history.
This doctor also told her 90% of CRPS patients heal from this illness, that CRPS is not actually chronic and is possible to heal with time. Of course, this type of misinformation about the disease is common among even many medical professionals. Yes, it is possible to heal. No, it rarely just goes away after a certain point on its own.
Believing that with CRPS is actually dangerous because it is the opposite of what happens if CRPS if not treated as early and effectively as possible. After that, it's actually then very hard to ‘heal’ and the vast majority of folks in that stage will be managing this forever without a cure.
You can heal. Your symptoms can improve. It’s what my whole life and work is about. But the disease is not just going to go away. And insinuating it should, implies it’s the patients fault when it doesn’t, or they’re doing something wrong/not enough if they stay sick.
Context and details matter. Accurate information affects patient attitudes and outcomes. And practitioners need to help patients with this process rather than foster unrealistic expectations.
Healing yourself and becoming a different person, being able to do different things and living a much larger life is possible – but that’s different. If you want to change this narrative and learn more ways to manage complex, chronic pain like CRPS, you have to educate yourself and take your power back.
CRPS warriors searching for more accurate Complex Regional Pain Syndrome facts and perspective on the internet, need to end up with more credible information on how to navigate this challenging journey and what is really possible. I hope this blog, as well as my Instagram, help fill some of those gaps.