r/CRPS

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

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?

I’m not new to chronic illness but I’m new to CRPS as I’ve only been diagnosed about a month. Am I understanding it correctly that once you develop it, you manage it for better or worse the rest of your life, right? That doesn’t upset me, I can accept chronic illness because I seem to be collecting them since adolescence with T1D. I can also accept that it will look different from one day to the next and not let it overshadow how I live my life. It’s hard not knowing the long-term or when to say I can see more normal function with my wrist and hand but progress is happening.

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.

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

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.

Anybody have any advice for dealing with full body sweating? I know we all deal with the inability to regulate our body temperatures, but it becomes so embarrassing when I'm at work in a meeting and just perspirating uncontrollably. Where I live, we're going through quick and drastic changes in weather (think snowing at 5pm and then it being 70°F the next day, then dropping to 50°F and raining the day after that). It's throwing my body in a tailspin.

Of course, it's very important to avoid using ice, and I can only excuse myself to go to the restroom and put my wrists under cold water and dry off my face once per meeting at a maximum.

What methods does everybody here use?

So far mine are 8 hours a week from home, a way to put my leg up, a standing mat & desk.

In 2024, I sustained chemical burns to both of my hands (palm side only). I started to immediately experience nerve related symptoms like numbness, tingling, burning pain, and itching. Over the next two years, symptoms progressed in both hands. I started having sensitivity to temperatures, different textures and unusual sweating. Then in June 2025, I fainted without any reason. I assumed this was unrelated. Cardiology cleared me but did note I had some tachycardia. I started to notice more and more pre-syncope episodes occurring and eventually underwent full autonomic testing. Results came back abnormal with possible small fiber neuropathy, but no other real diagnoses.

I was finally referred to orthopedics this week. The doctor noted symptoms are non classic and pattern is not following the typical progression, but that I do meet Budapest Criteria for CRPS. I’m still being evaluated by neurology for Small Fiber Neuropathy, pending a biopsy.

Has anyone experienced or heard of something similar where two areas of the body were injured and both areas seem to be developing CRPS?

I have CRPS in my left leg from unexplained causes, it developed spontaneously in 2022. I had a non painful rash on my left leg and two weeks later woke up and couldn’t bear weight on my left leg. I have been using a cane on and off since, it helps me do more throughout the day— walk longer, stand, do activities that would be pretty limiting without it.

I guess my question is does anyone else use a cane daily? When I don’t use it I am more fatigued, in more pain, and unable to walk like > 0.25 mile. Does using a cane long-term cause any adverse side effects years later?

Thanks :) <3

Well, I had my first trip to the ER for my back. I have severe pain and numbness in my back, buttocks and thighs. I also have severe weakness in my legs. I have CRPS bilaterally in my feet. Got my diagnosis in September, but doctors here made me get a neurologist to confirm it. They did. Anyway, I couldn't really walk the other day, and the pain and numbness was uncontrolled with gabapentin and celebrex. I went to the er and described my symptoms, and showed them an emg report that showed a pinched nerve in my spine and active nerve death. They did their due diligence, maybe a bit too much, and flew me to another hospital that has an mri. They did the mri, and sure enough theres something seriously wrong with my back, but theyre calling it chronic and referring me to a university neurologist. They can't figure it out and say theres nothing there that can be fixed with back surgery. Idk what im gonna do. I can't live like this. Hopefully the neurologist will be fast and good and figure it out because this is horrible. Thanks for letting me vent

I’m reconsidering amputation after I had bilateral spreading following a targeted nerve block.
My ortho specializes in complex cases, has had a vast number of crps patients.

I initially saw him to do an above knee amputation with osseointegration. He preformed a targeted nerve block for standard protocol, which caused the crps to spread bilaterally. The pain is identical on both feet and I’m 4 months past the targeted nerve block now.

My ortho said we can’t do osseointegration now, as you need a good leg to stand on for recovery. Though I’m going to bring up standard bilateral above knee amputation with him this following week.

I’m marked as severe with progressive worsening and I’ve had crps for a year now.

I’ve been home bound since the bilaterial spreading. I leave the house for appointments in my wheelchair (I last roughly 10 minutes before the pain creeps to a 9 or 10 and Im crying in pain) but besides that I’m home all the time.
I try to do public outings (30 mins max in wheelchair once a month / every other month) but it’s come to a point where I have to reserve that stacked rest for my appointments.

I’m 25 with a 4 year old and this just isn’t a reality I’ll accept. I trust my ortho entirely but was hoping for some perspective on others that have gone through similar.

If my legs were amputated, I’d be able to sit in my wheelchair longer / drive / and more as my limbs wouldn’t be pooling with blood like it does when it dangles.

TIA!

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I (29f) have had lower limb CRPS since I was 13 years old, diagnosed at 14, well managed after having a dorsal root ganglion stimulator (drg) implanted in 2016. Off all maintenance medications since 2019 except for a daily muscle relaxer at night. When the stimulator is off, the pain is so bad i cannot function.

My pain clinic informed me that my stimulator is unsafe for pregnancy and they strongly advise turning it off. My family dr who has delivered kids for 30 years says he doesnt see why it would be dangerous. Maternal fetal medicine dr said I don't know, I cant help.

I would like to try to conceive but am worried about the stimulator being off causing too much stress on me and the baby during pregnancy. Consequently, I am also worried about the safety of the baby if I leave the stimulation on. Has anyone here had experience with this? TIA

*Maybe trigger warning? I talk about being afraid and my symptoms/flares.

Hi everyone. I’m new to this subreddit and I want to rant/ask some advice.

I was formally diagnosed with CRPS in 2022, months after a second surgery on the top of my foot. The area that was affected at the time of diagnosis did not seem big (about the size of the top of my fist). They thought I had maybe fractured my foot, so I wore a walking boot for two months before my next xray came back with nothing unusual. They have me steroid shots in that part of my foot, numerous cream and ointment medications, arthritis medication… The pain persisted and I was sent to get a three-phase bone scan and was confirmed to have CRPS as a result, along with my other symptoms IN BOTH FEET. The left was very impacted and the right was impacted less intensely upon first diagnosis.

From there, I was referred to a pain management specialist who never explained what CRPS was or that it could spread to a larger area. The first treatment that was recommended was a spinal block. Then a second. Then a third. All that happened was my leg turned red and was warm for a few hours. Back to normal the next day after all three blocks. After this failed, he said that the next step would to be a device in my spine to shock my spinal cord and interrupt the pain signals sent by the nerves my feet. I was 21 years old at the time and did not like the option of having a device implanted into my back at such a young age, so I declined and was never given any other options or treatment so I did not return.

Fast forward… My flare ups and discoloration now encompass my entire foot and reach above my ankles IN BOTH FEET and I really hadn’t thought about the affected area being so much larger until I decided to go and look at photos around the time of my diagnosis. When I compared the two… wow. I was so shocked and afraid because as I’ve mentioned, I had no idea it could spread like this.

From there, I started doing my own research. Nobody, at any point during diagnosis or treatment, told me anything that maybe could’ve helped me or at least made me aware. No nerve medications were given, no physical therapy or cold therapy, nothing. I don’t even know if the right foot ever had damaged nerves in the first place or if it just mirror spread.

So… Is there anything I can do to slow the spread? I’m terrified because I’m now 25 years old and don’t want it to keep spreading the rest of my life. I’m looking into different pain management doctors that specialize in CRPS in my area — but should I also see any other specialists?

TLDR: I was diagnosed with CRPS in 2022 and was never told it could spread. Realized this year that it has spread to encompass a much, much larger area and didn’t realize until I compared photos. What kind of doctor should I see besides a pain specialist?

I'm looking for a new pair of shoes. I got VERY lucky 3 years ago when I got CRPS in my right foot that I found an amazing pair of pumas that didn't make my foot hurt "worse'. Now they have worn their wear and I'm on the hunt but I'm anxious about it. I tried before going from shop to shop looking for shoes but it just left me frustrated and in even more pain because I couldn't find anything that fit and didn't feel like I was standing on a rock. I would gladly take any recommendations at this point. I would also like to add I also have fibromyalgia "yaaay" so that just adds to the nerve pain. So I really need something that is gonna support but also feel like I'm wearing next to nothing.

So, I’ll give some background before I start asking any questions in case the background details are useful or interesting to you. I’ll add a little point you can skip to if you don’t want the story of what caused it and all that stuff

TW:Severe Medical Complications, Blood, vomit

I first found out I had CRPS after an incident that happened when I was 14 which triggered it. I’ll try keep it short, but this is a long story.

I had to get emergency surgery when I was 14 to stop major internal bleeding that put me to the point of being Peri-Arrest, somehow, I didn’t die from this, but I had to be put in a 2 day coma to increase my chances of survival post surgery, and it took weeks before I was able to be discharged.

Then after having a relapse where I went back to hospital due to dehydration(since it was kinda difficult to eat or drink after having your intestines cut into), things were looking up, I was going to go back to school, I was meeting up with friends again.

Then, one day I felt this slight pain in my leg, it wasn’t that bad but it was always there. Then the next day it was pretty sore, and there was some swelling and redness, and I was starting to relapse again and had to be taken back to hospital due to dehydration again. Then, that night, fucking agony begun. From the evening until about midnight, that moderate pain developed into full blown CRPS pain. You’ll all probably know how it feels, so I won’t go into too much detail on the pain, but I remember the way I described that night was “like getting stabbed with a thousand knifes every second, while having boiling water poured over my leg”

Luckily, I was in a hospital, so I hoped they could give me painkillers or something, but as you’ll all know, there isn’t really any good painkillers for it, so all they could do was check there was no clots, relief my dehydration, and send me back home :(

The next two months were arguably the worst of my life, potentially worse than the vomiting blood, nearly dying, and all the other shit that happened in the 5 weeks before this started.

SKIP HERE IF YOU DON’T WANT BACKGROUND DETAILS:
Somehow, it only lasted 2 months until I went into complete remission, at the time that seemed like centuries, but after reading up on here, 2 months with no physical therapy, and only 1 medication I can’t remember the name off, seems like an actual miracle. Maybe it was because I was only 15 when it started(turned 15 between surgery and getting CRPS). But whatever caused it to be that short, I’m fucking thankful for

I’m in complete remission now, that leg is still a bit of a shit show, some pains I don’t feel much, some I feel far too much, I have very bad proprioception in the affected leg, I have phantom pain sometimes, and as would be expected, I have PTSD from the CRPS and more so the incident prior.

However I’m quite concerned that well, it’s not really gone. I’m aware that it never seems to go away, like Emperor Palpatine I guess in episode 9, it just kind of waits, but I don’t really know what it’s waiting for?

I guess what I’m trying to ask is, what would cause my remission to end, because I’m sacred that one day it will happen, which is very likely.

Is it injuries, mental trauma, physical trauma, and to what degree. Like would a broken leg cause it to come back, or would it need to be something more serious than that, or, is it one of those things where it just depends, and everybody is different?

Thanks for taking the time to read this, and I hope you have a great day :3

Hey all! I have CRPS in my right knee and about 8 inches up & another 8 inches down my leg. It is now spreading to my foot and up towards my hip. My knee cap has also started popping out of place if I put weight on it at all now. I used to be able to at least limp on it for about 5 mins or so but now I can’t even stand on it without it popping out. And getting it back in is excruciating. I also have been having spasms ramp up like they’ve never been before. It feels like my bones are in a vice and about to break or that my knee cap is just going to pop up and out of my skin.

While I am in pain management & do have a significant dose of pain medications, I feel like my body has gotten used to them & they aren’t as effective any longer. So not only do I feel my meds aren’t as effective, I also have these new issues going on and I’m terrified to talk about it with my drs.

I am so scared and anxious to even say a word to my doctor about it, though. I’m scared that they’ll think I’m drug seeking or that they’ll change me to something worse than what I have now. I’m worried about seeming ungrateful for the meds I have now. They really want me to do a spinal cord stimulator but I’m super hesitant about it. I really am just at the end of my rope.

I am in bed 24/7 unless I have a doctors appointment or a super special occasion like wedding or funeral. And even then I’ve missed plenty of those over the years because I just can’t get my pain controlled enough.

Since I’ve had CRPS, many other things have been snowballing on top of it medically speaking. I have so many other issues that I never had before. I’m to the point that the next time I’m hospitalized I want to ask them to just keep me comfortable but decline any other treatment and let myself pass. If I had access to physician assisted death, I’d be signing up immediately.

Basically I just need advice on how to bring it up to my doctor that I need more or different meds than I have now. I need something to make my life livable. I want to be able to explain to him that I have 0 quality of life and things are so bad that I’m ready for life to end so that my pain ends. I just don’t know how to have an open and candid conversation in the medical climate that we are in surrounding pain control.

I am open to any tips or recommendations on helpful ways to approach a conversation with my doctor and also any advice on what has worked for you.

Thank you all 🩵

I got CRPS when I was in the military so I go to the VA for care related to my disability. My CRPS is manageable, but it's been a while since I've looked into treatment options, so I got referred to the pain clinic by my PCP and went Thursday after work. I had concerns that its moving into my right arm and right lower back. I do have chronic back pain but it's usually okay since I move around a lot and exercise, but the right side literally always hurts more and nothing helps. The doctor basically said it spreading is "near impossible" and I'm looking for something that isn't there.

She said that I probably just have a pinched nerve in my arm (that's fair and possible) and I need to move as much as I can because physically therapy has proven to help people with CRPS the most (I've never read those studies, so I need to look into it). She's going to have the pharmacist look into medications that can also help with my anxiety (yes, I do have anxiety, but not really about medical stuff. I was telling her that my job moved me downtown and the drive makes me have mild panic attacks some days) and is also referring me to a pain psychologist, which made me think she believes I'm not mentally okay. I don't really have time to do all these extracurricular activities since I haven't been at my job for long, so I refused physical therapy for now. I've also done it in the past anyways and it didn't help me.

I'm looking for a more flexible role because I need to go to these appointments at the VA and I'm stressed out over missing too much work. Maybe I'm just being sensitive but she actually made me feel like shit. She was only really positive about how I exercise and said I'm the reason it's not worse because a lot of people just "give up" and their muscles atrophy and mine didn't. And it's like, do you not understand that some people are literally constantly in pain and physically can't do what you're suggesting?

I like to workout, but I'm limited like most people who have CRPS and I actually get really frustrated when I'm at the gym some days. I was still doing all the "military stuff" my peers did when I was active duty, before I was diagnosed, so I probably actually made my leg worse during that time for pushing too hard. But she made it sound like I saved my leg from getting worse. Maybe I wouldn't even have CRPS if I had listened to my body more back then, so who knows. I'm just irritated at her. Anyways, if you made it this far thanks for letting me vent.

My orthopedic surgeon has put in a request for me to see the group’s orthopedic pain specialist but that was a month ago and I haven’t heard anything. If I find someone on my own, should it be ortho-specific or should it just be pain management who can do a stellate ganglion nerve block and any other reasonable treatments for my hand/wrist CRPS? I was diagnosed in mid April but showing signs since March so I’m getting antsy about missing my ideal treatment window and worrying about permanent disability.