I use FB to keep up with friends and family. A couple of months ago someone suggested I try the various CRPS groups on FB as they can be quite supportive.

So I did.

OMG they are horrible. Every 6th post is some marketing huckster selling a cure all or it’s an influencer looking for likes. This one guy less than a month said he has CRPS then 2 weeks did a post about an uncle who cured through and then the corker - he did a post where he says he stumbled on the group seeking help for a family member who just found out that they have it. On that post he acts like he’s never heard of CRPS before. The photos he includes , which I did image searches on, come from other people’s posts. And the admins do not care.

I don’t know if it’s that Reddit’s culture has fewer bull shitters or the admins on this subreddit being diligent- I just want to say Thank You. You keep me sane.

I finally withdrew all my investments to be able to afford this treatment let’s hope it fucking works! Need any and all advice!

I was told not to eat beforehand does this mean I can’t bring a snack? How if I start feeling nauseous? Should I bring a book or will I be too out of it? Anything to be weary of? Everything?!😩🤣

Apparently I have too many side effects, so she wants to try this drug.

Nortriptyline, definitely has helped with my pain, but she thinks that my symptoms of, dizziness, numbness and tingling in my face and heart palpitations at night, are from this drug.
(I have appointments with a cardiologist and a new neurologist coming up)

Has anyone tried Cymbalta?

I did a quick google of the side effects, and they don’t seem tooo bad. I do like the possibility of weight loss :)

Also, I really hope the pain doesn’t come back this week while I’m on a much lower dose of my current medication. I really hope this new drug helps like the nortriptyline did.

Im so anxious and annoyed.

Rant over

I hope you all have a pain free evening ❤️

Hello everyone, I've been dealing with what I strongly believe to be CRPS for a year and a half now. It started out with an injury to my left foot while running in October 2024 (which was later diagnosed as sesamoiditis). I didn't have medical insurance at the time so I spent a lot of time off my foot and on bed rest. It did not get better.

Around February or March of 2025 is when I started to notice unpleasant side effects from the injury. My skin color would change, turning mottled blue/purple/red. And my foot would get very cold, significantly colder than my good foot. I saw a sports doctor in May of 2025 who was the first to bring up CRPS. Raynaud's syndrome was floated as an alternate diagnosis and I took Nifedipine for a time to treat that (which came a host of side effects). I also spent time in physical therapy.

Over the past year, not much has changed. I still experience color changes, especially when standing on the floor tile of my bathroom or in the shower. My limb still gets very cold, especially in the winter, and also tends to get much stiffer and uncomfortable to walk on in the winter. I try to get 10,000 steps every single day to maintain activity, even when it's uncomfortable. And the sesamoiditis is still not healed I'm pretty sure. However, I never did have allodynia as one of my symptoms, as far as I could tell.

As I said, I"m driving to the Cleveland Clinic in a few weeks to seek answers/treatment. What sort of preparation can I do before going there/what questions should I be prepared to ask? I'm not sure if the Neurologist I"m seeing is knowledgable in CRPS or not, but I was told I would need a referral from neurology in order to enter into the Cleveland Clinic's Comprehensive Pain Recovery Program.

This condition has greatly affected my quality of living. My lack of mobility also resulted in my developing pelvic floor dysfunction and anal fissures (apologies for the TMI, but there you have it).

Hi! I was wondering if all CRPS sufferers experience pain on the skin to touch. I am still between diagnoses (SFN, central sensitization, CRPS) but all my symptoms are sort of internal, touch changes nothing for me. It’s intense electrical hot pain from the inside that feels like being stuck in a socket or having the bones expand, break, it’s like I feel every nerve just misfiring and my nerves feel like thousands of hot light bulb wires just lit on fire, sharp and just frying me with electricity. Burning is also from the inside like my bone is on fire and the fire spreading outwards.

I did experience severe skin pain earlier on and sometimes still do but now it’s minor most of the time now that the symptoms went crazy inside.

What do you do if your clinic has a max mme limit? Mine is 65. No other place around me even gives medicine except for one that has a 45mme max. I barely feel a pill and am suffering and unable to do basic activities around the house and self-care. I also have degenerative arthritis all over my body and fibromyalgia. The 3rd clinic with medicine rejected me because they wanted to give shots and injections and I already failed those. I feel helpless. Thank you for reading.

Hi all. I’ve had CRPS in my left foot for a few years, which has now spread to my right 😩 I’m looking for any recommendations for sandals that you’ve found comfortable, that aren’t crocs. I’ve lived in crocs, and asics kayano only, and really need a pair of sandals that are just a tad less bulky for a wedding I’m walking my friend down the isle at, coming up that won’t aggravate my feet. The pain is the worst at the top on my left foot. Please share any you’ve found, if you suffer with the same issue 🙏

Yesterday a little girl asked me why I have to use a walking stick

and stuck in my mind for hours was all the struggles I went through just to be here.

My response was simple, "car accident"

But in my mind was just non stop trauma.

I couldnt stop thinking about all the fighting, with everyone because nobody could comprehend the damage done and the constant pain.

I have a work comp case and have a very clear injury -> discoloration -> severe pain etc etc.

I had bilaterial lower extremity crps accepted by all of my work comp docs. My pain management ran out of things to offer me and both he and my complex limb reconstruction ortho agreed I needed better management.

Well new pain management says it’s in my head short form and disregarded my paper work trail. I’ve seen every specialty any doc recommend from the get go. Didn’t get the official diagnosis until I did every test under the sun. Had nerve blocks approved and preformed by work comp docs.

I’ve been passed around by every doc from my severity. I do have a work comp attorney. Anyways I just need to vent.

This dude, I was crying and having an insane time concentrating through the pain. I’m homebound right now, wheelchair reliant. I have been since March, a monthish after bilaterial spreading. Traveling really sucks, waiting rooms do too. I elevate my legs by brining a soft blanket and placing it on waiting room chairs / then using my wheelchair to sit in :)

Dough bag pain management disregarded all of my records. Asked me a lot about my adolescence mental health history. I asked relevance after he wouldn’t stray from the conversation. He insisted it’s relevant. We proceeded.

For those super interested, here’s a copy paste summary of how I described it to my attorney after that doc put me at MMI first appointment and said my pain isn’t work injury related..

“Yeah, I recorded myself a bit there too. They said a lot of stuff but I corrected everything. Doc had me try to show him discoloration in person, couldn’t handle 20 seconds of dangling and said I can’t but did provide several videos and pictures of the discoloration documentation. He asked a lot of questions about my mental health and I asked relevance he said it helps him see the full picture. I told him do not touch my feet I will scream he said he’d document I refused it
Nurse slightly touched my foot and I pulled it away and verbal distrsss, she said I barely touched you I said just wind hurts. I could go on. Nurse said I was fine sitting in the waiting room and now I’m all verbal, I said I was not sitting there nice I could barely start the new patient paperwork and was crying, holding legs up in waiting room. I bring soft blanket and legs were elevated whole dr discussion with me moving my legs sporadically from increasing pain. Became very pale several times from pain. Very rapid breathing. Had one nurse come in while waiting for doc to ask if I’m okay from labored breathing she heard “

Anyhow, I’m a 25 year old woman. Specifically a mom who worked overtime construction running crews before this injury.

After the shock of doc putting me at mmi and claiming my condition is not crps, we got the official records.

This doc put that I have numerous mental health issues, he marked me as depression, and chronic pain, but both were pre injury despite my non existence of any physical injuries in my life prior.

He marked that I have tattoos on my one crps leg. As if I couldn’t get tattoos before the injury.

He explained my insane pain durning the appointment he saw, how I refused the visual appointment. I couldn’t make it discolor when he asked. It was such a waste of my time.

I thankfully see my limb reconstruction next week but Christ this has been such a blow!

I’ve been taking videos and pictures every time it discolors now (every time they’re not elevated..)

I’m excited to bring my stack of papers to limb reconstruction to share the utter head shock.

This condition is already shit on its own. I knew most docs are lucklaster about crps knowledge. But still. Yes sir, my depression from childhood is magically making my ankles purple and wheelchair bound. I’d be an Emmy winning actress if this wasn’t real pain..

Just was diagnosed with hEDS. Anyone have both and any recommendations for treatments, comfort, mobility, pain? My dr still won’t prescribe me pain meds although they help me do way more than I can right now. I just need some help on the next step. I’m younger and a woman so the pain “is all in my head” and I’m “dramatic”, etc. Also well how are you getting worse with your SCS that’s helping??

I was in remission for a couple of months. What I call remission is acceptable occasional pain I can live with and that only gets bad on my period.

I got my previous job back on Wednesday(I work from home)

The very next Monday I get diagnosed with trigeminal neuralgia.

I feel like I get a new diagnosis everyday. I feel hopeless and lonely. Like it's enough for everyne around

u

me to hear or deal with. Enough with the complains and the neediness. I feel like if I was not here it'd be better, easier.

I'm not in the worst state of this desease but mentally I might be. I want to share how my leg to better in a matter of a few months and try to help ppl but I suffer from brain rot and I m too impatient. A side effect of the medication I was on lol

i have an online friend who needs serious help. shes on the other side of the country so i’ve felt all i can offer is support and sending goodies(not even to her address youll see why). with recent developments she needs serious advice and a list of resources. my friend is around 27 years old but has been cared for by her parents since a young age due to CRPS(both legs) and other mental and physical health conditions. she has no confidence and has been trained to accept anything. the parents have allowed doctors to stack up medications without testing their efficacy, and even tried botox from an inexperienced doctor that spread her pain to her other leg. parents are both abusive and even sister has said things i cannot repeat. years ago she mentioned medical cannabis being the only thing that even remotely helped her pain, however she was “addicted to vaping”. this year she got a more knowledgeable doctor who is trying to take out unhelpful medications and prescribed her medical cannabis. since she has been able to do physical therapy at home again, so shes able to do appointments because of that (odd requirement imo). she has a new motorized wheelchair on the way and for the first time i’ve heard her say she was proud of herself and she wants to keep getting better (she’s never referred to a future before). but over the last few months i’ve realized there’s a cycle. suddenly her mom (the caretaker) stops giving her the prescribed cannabis rips (yes she won’t let her adult daughter be in control of her own pain medication). and she makes her daughter feel like an addict who doesn’t need it. going from 2 hours to 3 to 6… and while refusing to offer pain relief shes also withholding helping her to the bathroom as some abusive ammo. today they are starting gum to get her off cannabis. the final straw was when she told me she was doing her physical therapy in secret to impress her mom thinking it would help take something off her list (she thinks her mom is simply overwhelmed and not abusive) and her mom saw through the door. the mother was not proud, but angered. saying somehow shes doing this to find the vape pen and sneak in a hit. the repercussions of such being taking her wheelchair. i’ve explained my and what 99% of people would think about this but she thinks she deserves it. i’ve said this community is very supportive and i’ll make a post if you’d like. i’ve recommended talking with doctors or psychiatrists, but the mom never leaves her side and the psychiatrist portal has been magically broken for months. at this point i need help with resources for her or at least some method for her to communicate with professionals without fear of mental or physical abuse. i cannot understand the logic of her caretaker, let alone mother. my heart is broken she is the kindest sweetest most understanding person alive or dead. thank you for reading, and know you are a diamond shining from all that pressure and it’s okay to blind those who don’t appreciate your value.

Part 2, 6.8k words, 35-45 min read.

We’re here to reduce the trial and error attempts required before achieving success within the healthcare system so there’s less cumulative harm, or at least offer a guidebook to reduce confusion and discombobulation. We’re starting with the brass tacks delivered in frank and direct language; this is specifically designed to be autism-aware and trauma-informed. 

The goal in this series is to increase healthcare independence and autonomy through patient education and provide a solid foundation to be able to competently interact with the medical system, know who to seek out when concerned or frustrated with treatment or policy, and have the required knowledge and proper language to better advocate on one’s own behalf—or at least have the terminology to provide oneself a mental buffer if advocacy isn’t the selected path forward. 

This series will have three installments, and each will focus on one of the three levels of the institutionalized healthcare pyramid, one psychoemotional component that affects provider-patient relations, and two aspects of protecting oneself while within that system—one for those who benefit from clarity on next steps during confusion or isolated incidents of unprofessional behavior and one for those in a pervasive hostile environment.

Exceeds character count. Direct link.

One thing that has always confused me about the nature of my condition is that I have no swelling, redness, skin changes, etc. From an outsider's perspective, my foot (the afflicted limb) looks completely normal and exactly like my other foot. However, my pain is consistent, focal, and bone crushing. I also will get cramping, charley horse-like sensations sometimes.

Has anyone else experienced this and still felt confident with their diagnosis of CRPS? I have seen lots of the big dogs in the CRPS game (Docs in Mass General in Boston and Docs in NYC), and they are all rather confident that it is CRPS II (Causalgia), but it is so confusing to me. Any insight is appreciated.

I was diagnosed with CRPS at the age of 10. It was one of the most severe presentations that the hospital had seen and I met the full budapest criteria (as in every single domain I had multiple points in) by the time of diagnosis. I used to scream in pain, even in my sleep, and use a wheelchair everywhere.

Of course, being in this much pain meant that I had mental complications. I was then admitted to a pyschiatric hospital for over a year at the age of 12. However, these nurses and doctors had very limited understanding of CRPS and, among other coercive practices, made it so that if I didn't pretend I wasn't in pain, I couldn't see my family.

It took my 397 days but I forced myself to walk. The pain never got better. I still met the Budapest criteria. I just looked like I was OK. My quality of life was worse and I developed systemic symptoms and eventually full body spread.

I have always been in pain since the age of 10, and to be honest probably earlier. But I stopped reporting it and became focused on "objective" symptoms because I had learnt that if I reported my pain, I would be put in a mental institution and not be allowed to see my family.

Yesterday, I had an appointment with my rheumatologist. I ended up crying and going non-verbal. She had said she didn't think I had CRPS anymore, because I wasn't in pain. I exlaimed "I am always in pain! I just don't say it anymore because people have dismissed me for subjective symptoms in the past!"

She went very silent and seemed sober. She was really kind, and serious. She essentially told me that she was sorry for what they did, and that she has always believed me. It turns out she didn't know that I was using a wheelchair again. Or even my cane.

Because I'm transitioning to adult services, she has to discharge me anyway. But thankfully, one of the world experts at CRPS (they do a lot of research into it and actively create clinical trials in my area!) is nearby enough for me to be reffered to them.

I feel sad and scared but also happy. Mostly, I feel just a heaviness of the past. I am in so much pain all of the time and it exhausts me. I could genuinely stop masking now, use a wheelchair full time, and I think I would be happier and less tired.

Even though my parents have let me use a wheelchair again (I can finally go out of the house! yay!) I still feel like they wouldn't accept a choice to use it most of the time.

I'm just so exhausted and there are so many contradicting messages. Apparently, I was never meant to stop talking about my pain. But that's what I was explicitly told for over a year, and a rule I have deeply internalised. I still meet the Budapest criteria.

I suppose it was a breakdown of communication. My pyschiatrists thought my pain was behavioural. My rheumatologist thought my pyschiatrists were treating my mental health and physical health appropriately. I thought everyone knew I was still always, always in pain.

I want to cry again. It's just this unbearable, crushing heaviness. But I am glad that I'm going to be reffered to this expert. It's just so much sadness all around it.

Hi all! I am finally getting a dorsal root ganglion trial stimulator surgery in NYC. Does anyone have experience with this device, specifically for a foot problem? Any insight would be greatly appreciated!! I am very scared that it won't work :(

I have lower body CRPS. 26F. It started in my left leg. Knee/thigh area, never any pain or swelling below the knee, but there are autonomic symptoms there. My inciting injury was Oct. 2024, dx Dec 2025 after I lost the ability to walk and got admitted to the hospital.

The base of my spine began burning in Dec 2025, and I had my first 10/10 CRPS, screaming, writhing flare in my leg ~3 days later. More pain than I can even describe. I had about 5 of these over the next couple weeks, some in my leg, some in my back. For months after, my spine was incredibly hypersensitive; I had to sit with a pillow behind my back; the shower hitting it hurt badly. I couldn’t hold myself up. Even slightly twisting my body while sitting to pick up something next to me caused severe pain. Almost paralyzed. I was on 2 crutches for 6 weeks and 1 crutch for 4 weeks. Things have gotten better now, but I still have problems.

My CRPS spread to my right leg in February. I was still on crutches, messing around a bit with my toddler, trying to be fun, and I stepped down with my right leg a little hard a certain way. I knew the instant it happened that it did it. That was it. For the next 3 days, I felt strange sensations in my leg before the pain started. To me, it felt “wiggly,” like the phantom feeling of something wiggling in my leg and disappearing and reappearing in different areas of the leg. I knew what was coming. Did anyone else have this?

Hey guys, my mom is a scheduled for a PrP injection procedure to treat constant pain (over 1 year) arising from retrocalcaneal spurs in her left heel. She is 53 y/o. We’re going ahead with this procedure after physio, change of footwear, exercise, diet, etc everything has been tried but with no relief. For anyone else who has/knows someone who has gone through this procedure, what is the recovery process like? Especially for the first week. Any tips would be helpful. Also, she’s been advised to be admitted overnight for a day despite the fact that this procedure *typically* doesn’t require a patient to be admitted? Idk maybe it’s just precaution for pain management that the doctor is advising.

I have found this to be incredibly variable. I have lived with CRPS since the age of 10, and have become increasingly complex. Many of my symptoms are "organic" (though I find the distinction between functional and organic misleading and too heavily based on dualistic models) but no one actually knows the cause of them. These all followed CRPS onset and seem to masquerade as a variety of things. The majority of my organs have had objective proof of inflammation at some point.

The best doctor I have is my GP. He is a wonderful person, but structurally quite powerless to help me. He cannot prescribe me any treatment for CRPS. Next, is my physiotherapist. But he varies and it sometimes feels like he is dismissing me. My rheumatologist also can't prescribe me anything due to hospital guidelines, and my neurologist declines to treat my CRPS and focuses only on my epilepsy (which was likely present before CRPS but manifested more strongly after).

Sometimes I read my notes and feel so conflicted. I was admitted to a pyschiatric hospital for over a year at the age of 12 following my CRPS diagnosis, in part due to mental complications but also due to a misunderstanding of my condition. I've read posts on the internet of people saying CRPS is "only seen in middle aged white women who can do their nails and want attention", or doctors saying that it should be treated with the biopsychosocial model. Though the former is blatantly incorrect, the latter is theoretically ok, except in practice, it just translates to the "pyschosocial model". I feel I've even been excluded from some CRPS communities, because of my mental health complications.

I am very young and transitioning to adult services. Does it get better? Sometimes my whole body meets the Budapest criteria (I keep mentioning this because historically any "subjective" symptom I've reported has been dismissed, so I'm trying to remain "objective"). I also get angry about "small" things; for example I'm diagnosed with type 1 CRPS but somewhere along the way someone wrote type 2 on my chart so now everyone keeps copying and pasting that.

I have made a huge effort to become educated on my conditions and their historical treatments, so cognitively, I think I understand, but emotionally, I really don't: why can't people do anything? Why do people keep treating this like it's "not real". S doctor wrote in my chart that CRPS is a "benign nuisance". Following CRPS I lost 20kg, lived in a HDU for over a year, developed CNS symptoms, developed cutaneous ulceration and fullbody rashes, developed kidney inflammation, developed recurring bronchitis, developed bowel inflammation and gastroparesis, etc. How is this, in any way, a benign nuisance? I know people say you can't die from CRPS but I really think you can. If, subsequent to CRPS, I develop dysautonomia (which I have), which causes my blood pressure to drop so low that I go into systemic shock (which has happened), then how is CRPS not life-threatening?

I'm so exhausted and afraid. I feel like I should just resign to this. All of my life, I'm going to have to be explaining this to people. The disability leader at my school said to me "didn't they find out that all the pain was in your head?" When I told her I got a wheelchair again (I went from full time to not using aids to housebound to ambulatory over the past several years) she said "that's good. Once you go in your chair, you can walk there." A doctor I saw for a congenital heart issue said "chronic pain syndrome" and I clarified "CRPS". He said "chronic regional pain syndrome" and I said "complex regional pain syndrome". He said "the lingo always changes". But I feel like, given that CRPS has a relatively distinct aetiology, it's important.

I don't know. I'm exhausted. What have your experiences been? Am I even meant to expect compassion from doctors?

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I’m seeing a new pain management doctor next week. I’m 25 with severe crps in both of my legs hip to toes, my dominant hand, and having new organ dysfunction.

I’m largely bedbound. I have pictures of color differences, temp differences, but trying to understand how to write down my condition and limitations. My brain is not present, is there a guide out there or a prompt i can use to help understand what is significant to share so this appointment is productive? This is my third pain management (keep getting tossed around for being ‘too severe’)

TIA

Any one with any advice? 😅
I’m largely bedbound but can tolerate quick (1-2 minutes) in wheelchair. Can’t tolerate standing.
Am I prestigious for wanting help with meals? I’m living off of take out, frozen pizza, etc but it’s expensive. I’m coming from used to prepare every meal, debone rotisserie chickens, food pantry.
But I’m not able to do much at all now.

No friends/family nearby to help. I’m 25, got crps from work but it’s spread like a wildfire (both legs from mid thigh to toes severely, dominant fingers to mid forearm moderately, bladder & gastrointestinal dysfunction) after a year and some months of getting crps. Nerve blocks etc have all made it progress quicker. It’s work comp tho so not like a usual case.

Anyways, thanks for any pointers. It’s crazy trying to work around this crap shoot of a body im left in.

I’m in charge of my 5 year old all day too. He starts school soon thankfully (his dad will be coordinating all school transport as we live on second floor no elevator and also can’t switch housing anytime soon) It’s been just trying to get through the days lately.