r/CRPS

Just wondering if anyone has tried this medication and thoughts on it.

So I’m a newbie, diagnosed less than 6 weeks with this fun disease in my left hand and wrist with it possibly creeping into my left shoulder and neck (or it’s compensatory due to my wrist). After reporting this change to my shoulder to my hand surgeon’s PA, she and her awesome staff worked their magic and got me in with the group’s pain specialist for a stellate ganglion nerve block it looks like. I know I need it but I’m a little nervous about a needle in my neck and being fully aware of the procedure. But it’s what I need.

Hi everyone. It’s been a long time since I’ve posted here. I hope everyone is finding at least a little peace today.

I’m feeling incredibly lost and betrayed by my pain management doctor, and I really need guidance and recommendations.

I’ve been seeing this doctor (“Dr. H”) since 2022. Last month I was late to an appointment after he moved from private practice to a hospital system in the Bronx, where everything has become much harder and, honestly, much colder. I called and emailed for a week asking to be squeezed in, seen via telehealth, literally anything. I even offered to come before or after hours. He was condescending, dismissive and told me to go to the ER for meds.

I told him I wasn’t comfortable doing that, but that my psychiatrist, who also treats CRPS patients, was willing to temporarily help until my next appointment. I emailed Dr. H saying exactly that. No response.

Fast forward a month to yesterday’s appointment. I had been without meds for 3 days, and the hour-long car ride from Brooklyn to the bronx sent my pain into a massive flare. By the time I got there, I could barely walk with my cane and was trying not to scream from pain, so instead I was crying uncontrollably.

Dr. H came in, looked at me for maybe 5 minutes, and said, “I cannot do anything for you if you’re like this. Go to the ER.” I wasn’t asking for anything. I could barely speak. I honestly just needed a moment for the flare to pass.

Then a nurse came in and told me, verbatim, “He’s never seen you cry before so he thinks you’re going to hurt yourself.”

Suddenly there were security guards, EMTs, nurses, and a cop outside the room because he was trying to send me for a psychiatric evaluation.

I cannot explain how humiliating and violating that felt.

I have CRPS, a condition literally nicknamed the suicide disease. He claims to specialize in CRPS, yet seeing me cry during a severe flare apparently justified treating me like I was dangerous to myself. Meanwhile, I’ve spent years minimizing my pain and emotions specifically because I feared not being believed.

I also need to be honest about something uncomfortable: I truly believe race played a role here. I’m a Black woman, and I have personally watched White women at this same practice cry, panic, and receive compassion, patience, and significantly higher doses of medication than I’ve ever been offered. I know people hate discussing race in chronic pain spaces, but pain management absolutely does not feel the same for me as what I’ve witnessed others receive.

I eventually convinced them to let me go home after calling a friend to explain that crying during a CRPS flare is normal for me.

Then today things got worse.

Dr. H called me furious that my psychiatrist prescribed my medication last month after he refused to see me. He tried saying “if you had told me,” except I DID tell him, in writing. Then he pivoted to criticizing my psychiatrist, who has honestly helped save my life over the last 7+ years.

Now he says he’ll write one final 30-day prescription but refuses to prescribe after that.

I’m not here to debate the laws or whether he technically can do that. I just need help.

If anyone in NYC has a compassionate pain management doctor who prescribes opioids responsibly, could you please share their name/hospital with me? I have an appointment tomorrow with Dr. Franklin McNeil, but I have no idea what to expect.

For context: I have never struggled with addiction, never failed a drug test, never abused my meds, and I haven’t even had alcohol in 3 years aside from one glass of sangria after my dad died in October.

I just want some quality of life back. I want to keep working remotely, walking when I can, and maybe someday leaving the house for more than an hour without paying for it physically.

Thank you for reading if you made it this far. And consensual air smooches if you have any NYC recommendations.

**TL;DR: Need recommendations for compassionate NYC pain management doctors who prescribe opioids responsibly after a traumatic experience with my current doctor, who is now refusing to continue my care after one final 30-day prescription.**

I have a tattoo that was started on my right upper arm and shoulder, before the injury that started this debacle. It was never finished. Probably two hour long sessions to complete it. I developed some crps in the fingers on both hands but it is not a huge deal. My legs are the big deal and the fingers get me when I overuse them but not otherwise. I'd like to finish the tattoo but don't want to flare up the hand. Any thoughts? Am I nuts to even consider it?

Thank you in advance.

I’m getting them out to 26th of May 4 teeth

Hey y’all. Am interested to hear folks experiences with medication. No pain medication has made much of a difference my pain thus far, and even when I was given dilaudid and morphine for multiple days in the hospital it didn’t make much of a difference, it mostly just made me more tired. I had a bad reaction to baclofen, — and tizanidine, gabapentin, and amytriptiline gave me other side effects. I take pregabalin, Methocarbamol, an SNRI, and a lot of supplements (all approved by pharmacist). Short term steroid packs help me slightly but I can’t do that often obviously. I’ve have had multiple lumbar steroid injections that don’t help. Obv I do ibuprofen/tylenol/NSAID cream/etc… every over the counter thing you can think of. I’m in therapy for mental health. I do physical therapy which is what has helped my CRPS the most out of everything.

I’m interested to know if any medications have made a difference for folks, or if you find meds don’t touch your CRPS either. I’m considering looking into ketamine therapy although I don’t think I’ll realistically be able to afford that or travel to it. I meet with my interventional pain clinic again next month but they don’t have much more to offer me, and neither does my PCP. Any and all advice welcome, and I understand that this is all anecdotal and I’ll always talk to a doc before doing anything different :)

I have an appointment with my PCP next week to talk about some intense regional pain I have been experiencing for a long time, but it is now amping up drastically. I have done research on regional pain, and it seems like CRPS might fit my situation (or is at least worth talking to my providers about)- whether it is CRPS or something else, I am unsure of how to broach this topic with my pcp. I am chronically ill and have a bunch of intertwined co-morbidities, but I am really scared to talk about just how bad the pain actually is, and am scared to be labeled a "Drug-seeker" when really I am just wanting some relief.

Does anyone have advice for someone starting this journey? Thank you in advance!

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Y’all probably gonna get tired of me but, if we accidentally spilt boiling water on our affected limbs would it hurt LESS or MORE🤨 cause if the water spills off instantly we might not even feel it’s affects but vice versa would it’s intensity cause a terrible flare up instantly? Would the skin still burn/react the same since our limbs are so cold and skin so rough/numb/mute?!

The only thing I can base my theories off of so far has been my ingrown toenail removal on my crps foot. He used a freeze spray and that shit felt like a dip in one of the ice holes in the middle of an Antarctic cabin. But it didn’t practically nothing for the pain of the toe nail removal.

I also have had my affected limb in front a space heater before and it’ll take 3x as long to heat up compared to my normal foot. But them at a certain point it’ll start feeling like boiling hot lava and i’ll have to pull it away. 20 seconds later put it back and it’s back to warming up all over again.

This is why ultimately i think the small splash of boiling water might not instantly shock the system but the aftermath like the swelling/scabbing/ application of ointment might be the REAL pain of it all😩🙃

This is all jokes I am in no way talking about inflicting self harm or anything of that nature just curious if their has been any studies. Which sounds crazy because who would subject themselves to these wild studies.

Also anyone had experience in pools so far I have not attempted to swim nor bathe in a tub because foot doesn’t like submerging mainly because of the pressure. Anyone had any luck improving their resistance to water in general?

Also anyone have any good tips for driving. I HAVE to have a pillow and no shoe on for even the shortest trip down the road. I’m praying this doesn’t spread to my other foot. Does it cost money to get hand controls for your car as a disabled person?

I am waiting on an MRI scan referral, I don't have an SCS or any other internal device. The scan is on my hips and I have CRPS in my left foot and ankle. Does being in the scanner and the magnetic field have any effect on the CRPS?

This is Part 4 of the CRPS and Dissociation series: Hypotheses for Depersonalization's Underpinnings.

This is by far the longest and most complex article of the series---coming in at approximately 7.5k words and an estimated 40-60 minute read time---so if this strikes your interest, I'd suggest reading it when you have the time and mental bandwidth for a heavy cognitive load.

This one exceeds reddit's character limit by a substantial margin, so I am only offering the direct article link today: https://crpscontender.com/2026/05/crps-and-dissociation-part-4-hypotheses-for-depersonalizations-underpinnings/

This is the final planned article for the Dissociation series; however, due to its length and complexity, I am considering offering a shorter, simplified Part 4 if there is enough public interest; if this is something you would like to see, please let me know in the comments and I will make that next month's article before moving to the next project on my docket.

Anyone dealt with a bone spur in their affected limb?! I’m just shocked like we really can’t win huh?

I have early CRPS in my left wrist and hand, making progress in hand therapy sessions and my elbow gives me no trouble. But in the last two weeks my left shoulder has tightened up so much. I’m now adding specific exercises to try to loosen it up but it’s painful. Could this be a progression of the CRPS, like moving from one joint to another in the same limb but not the closest one?

I had my total thyroidectomy yesterday morning. They did use ketamine in the anesthesia which I very much appreciated. Thought things were going well. They thought an overnight hospital stay would be best so here I am. I presumed at 9 pm they gave me my Lyrica with a slew of other meds. I am supposed to take one Lyrica at 9am, one at 9pm then I have a third to take as needed. Well they wrote the 9pm one up “as needed”. So I didn’t get the 9pm dose. I awoke at 10:30 in 10/10 plus pain from my CRPS. I guess the ketamine anesthesia didn’t last long. I tried using my CBT training- didn’t work. At home I used THC gummies for sleep but I was told to stop them several days before surgery. So I did. They did get me an OxyContin and Lyrica at 11. It’s just now kicking in. I try to remain calm but by the time they got me the pills I was a crying mess. Going to try to sleep again but due to the surgery I have to sleep sitting up with an ice pack on my throat/chest. This night sucks

Hi everyone,

I want to start by offering a sincere thank you to this community. The interest and engagement we received during our initial pilot study were incredible, and we are deeply grateful to everyone who reached out, applied, or participated. Your contributions have been vital in moving this research forward.

Based on the groundwork from that pilot, we are moving into the next phase. Our team in Bend, Oregon is now recruiting for a formal, IRB-approved research study investigating psilocybin-assisted therapy as a potential treatment for CRPS.

Why this study matters
This study explores how a legal, supported psilocybin program may impact chronic pain. We are looking for a small number of individuals to help us document the efficacy of this approach in a safe, supervised setting under Oregon’s regulated model.

What the program involves (All costs covered):
The program is structured over 3 to 4 weeks, with follow-up surveys extending over a few months. Almost all work is conducted remotely on your schedule, with a single in-person visit to Bend for the psilocybin session.

- Virtual Screening: An initial orientation and eligibility check.
- Preparation: Two sessions with your facilitator (virtual or in-person).
- Psilocybin Session: One in-person session (6–8 hours) at our licensed center in Bend, Oregon.
- Integration: Two sessions to process the experience (virtual or in-person).
- Research component: Brief feedback interviews and surveys before and after the program.

Travel Support:
Participants should plan for 3 to 4 days in Bend, Oregon for the in-person session. Travel and lodging expenses are reimbursable up to $1,000.

Who can participate?
Basic criteria for inclusion are below. Eligibility is subject to evaluation of a submitted application (link below).

- Diagnosed with CRPS Type 1 by a healthcare provider.
- 25 years or older (per Oregon regulations).
- Have not found sufficient relief from standard CRPS treatments.
- Have not participated in another interventional clinical trial within the last 30 days.

Why investigate psilocybin for CRPS?
Emerging research suggests psilocybin may alter how the brain processes pain signals and associated emotions. By participating, you are playing an active role in discovering potential "next-generation" treatments for chronic pain. All products used are 100% natural, derived from psilocybin-containing mushrooms, and administered in a legal, professional environment.

Safety and Medical Care
Care and safety are the top priorities. The program includes a team of trained professionals and follows all Oregon state regulations for licensed psilocybin services.

How to Get Started
If you’re interested in exploring this option or have questions about eligibility:

Learn more and apply here: bendabletherapy.org/crps/

Email the recruitment team: ryan@bendabletherapy.org

Please feel free to comment below or DM me. I’m happy to discuss the process or what to expect during your time in Bend.

Thank you for your continued support and for being part of this research.

Pain has been very high, there's been a lot of vomiting, nausea, and the other gross stuff. This has happened many times before it usually is like a cyclic thing that lasts a week or two. But it can't be just me. I am on zero medications.

I'm just curious how many of us with CRPS have been dealing with medical gaslighting? It seems to be getting worse, at least by my experience. I've had this happen before, but today seems to be the one that pushed it over the edge for me. I went to a new PM doc who told me that while some used to think that CRPS spread from one side to the other, there's no proof that CRPS can spread. Excuse me?! I've personally had it spread up and to the opposite side. Are you telling me that it's all in my head?

So I'm just curious. How many of you feel like you have been medically gaslit before? Do you think it's because doctors don't understand our condition? Are they burnt out? What do you think?