My name is Nick. My partner has complex regional pain syndrome type 2. In the pursuit of an effective treatment, I spend a lot of time reading medical journals for CRPS-related information, so I thought I'd make public the many notes that have been filling my phone.
While I do my best to cite resources and offer my interpretation of the information I come across, please remember that I am not a doctor. That said, if you or someone you know has complex regional pain syndrome, then perhaps my thoughts may lead to some new and interesting information that you can pursue in your (or their) treatment.
I have been making a list of new, under-explored, bleeding-edge treatments for CRPS over the last few months, and the list is growing faster than we are able to try them. Here, I will be collecting those treatments, as well as my thoughts on the mechanisms (as best as I understand them as a layperson) by which they might be working.
I hope that it can serve as a jumping-off point for anyone reading this so that they might start getting a better grasp on what the science appears to be saying about how this disease works, and the directions it will be heading in trying to find a cure. Many treatments are uncommon, and some you will not yet see in your doctor’s office. Some may not even be clinically available yet! But perhaps, like us, you will begin by arming yourself with knowledge that may lead you towards medical professionals or procedures outside of the expected spectrum that can help you.
It is important to understand that I am not a doctor. I am just someone who cares so much for a loved one who is suffering that I am reading medical journals literally every day, following any lead I can, doing my best to wrap my head around all of it. I am not offering medical advice here. I am just journaling my own thinking and my own interests both to better organize them for my own sake, and so that readers may get ideas about things to start looking into, that they may not otherwise be made aware of.
My name is Nick. My partner contracted CRPS type 2 after a routine bunionectomy in December of 2016. They were diagnosed within six months, and we’ve been dealing with it ever since. Theirs is primarily located in the left foot, though it has manifested up the leg and in the left arm and hand, all with varying degrees of intensity. We have been fortunate that it has not been worse, but nevertheless, it is literally disabling and utterly miserable.
However, my perspective is not one of pure negativity. With regards to this disease, I consider myself hopeful. That is, I am not going to dismiss a social media post claiming positive results out of purely rational skepticism or lack of evidence, nor will I outright dismiss a treatment that doesn’t appear to make clear correlative sense.
The fact of the matter is that the science on CRPS and the nervous system as a whole is still nascent, continuously evolving. I mean no disrespect to neurologists: their work is astonishingly complex. Nor am I a mystic. I believe in science, full-stop. I just know for a fact that it is utterly foolish to claim certainty about this stuff.
I am open-minded, and I’m willing to entertain any scientific possibility, however unexplained it may be. At this point, we can’t afford not to.
We have been searching for a solution to this terrible condition for years. We’ve dealt with general practitioners, podiatrists, neurologists, pain management specialists, psychologists, psychiatrists, and others afflicted with CRPS. In so doing, we have grown tired of waiting for medical professionals to present us with the answers.
This is not to say that they have uniformly failed us (though some certainly have); however, I now realize that we will need to make our own inroads on emerging research, and we may have to investigate these avenues on our own, as supplementation to our existing care program.
I’ve spent a lot of time searching the internet for answers. I’ve read forums, scoured social media, and scanned dozens of personal blogs. This process is a very depressing experience. The tone of first-hand accounts is overwhelmingly dire, and with good reason: this is an incredibly difficult condition to live with. Most are recounting their pain, loneliness, frustration, and most significantly, their increasing hopelessness. I don’t blame anyone for feeling this way.
That is why, when I come across a positive post, or a promising medical advancement, it’s like coming up for air. It is nourishing. We, as sufferers and those who care for someone who is suffering, deserve to feel hope. Because there is hope, of this I am increasingly certain.
As someone who can afford to feel hope - who is removed just enough from the condition that I can see beyond it - I intend to impart my own hope onto anyone else who needs it. Simply put, I made this site because I wish it already existed.