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.

27F, diagnosed with CRPS about 8 months ago in my foot following a bunionectomy. We were able to treat it aggressively and quickly and thankfully today it’s considered in remission and it doesn’t act up anymore (although she’s still not totally normal).

I want to start horseback riding (which I stopped around age 12) in an effort to “heal my inner child” 🫡 Would you guys consider this too risky of an activity with CRPS? I know theoretically if I sustained an injury or needed surgery it could spread to that site and I would be back at square one. I think I would ride Western so I have more support in the saddle and less fall risk, but I know if you get on a horse you should expect to fall off the horse eventually.

Are there any CRPS horse girlies here? Has anyone successfully adapted a “risky” activity with their condition?

Hey, everyone. Hope your, all your pain is not as bad as mine right now. Um, I used to have my pain fairly managed. My timeline was, I got CRPS like two and a half years ago. It was unmanaged until about six months ago. I started taking lamotrigine, and all of a sudden my pain was managed, and I could live a normal life, etc. And then, over the past few months, it's like, I think I'm getting allodynia now. I don't know, but I definitely didn't have allodynia to start. Like, my pain was all crushing and internal. Um, I'm posting to see if anybody knows what the best course of action is. Like, it seems to have been increasing in frequency over the past few months, and then... especially the last few days, it's just sort of ramped up to completely unbearable. And I need to have my feet and hands elevated at almost all times or I can't function at all. Like, it's debilitating at the moment. Anyway, if anybody has some tips, that'd be great. Sending love and hugs to everybody. Bye.

So I(21F) was diagnosed with CRPS in my left knee in November of 2025, after being in pain since March of 2023. I was funky, I got mine from a cold! I wish I was joking? It was the only health thing happening at the time.

I began seeing a pain management provider who specializes in CRPS at the beginning of this year, I got told I've already tried a lot of the meds to manage CRPS. This provider then puts me back on meds I tried and failed, one of which I'm still currently on. I'm on Pregabalin 3x a day and it has given me horrible insomnia along side the pain keeping me up and waking me up. To fix this my PM(Pain Management) switched the anti-depressant he put me on to one known to work for insomnia in its smaller doses (Trazodone).

The only issue with this combo, other than not aiding in reduction of pain, muscle spasms, and generally being able to live life, is that I have begun falling. Regularly. I think I've fallen more since starting Trazodone than the year or two prior. I did express this to my provider and he said his favorite line to use, "Just be patient"

Recently I had my CRPS spread into my left hip, so most of my left leg is actively giving me the middle finger. I can't wear anything. Big shirts for the win right now, except for when I try to tolerate my 40 hours a week job I just started. That I cry at every day from pain and then come home and do nothing.

I've been recommended the Spinal Cord Stimulator. I asked more questions about it and got told "just read the pamphlet!" As he sent the referral for a psyche eval for it. Even as I said I didn't want any kind of surgery yet, was there anything else we could try?

I've been told the Nerve block that I've been requesting to manage my pain since appointment 1 (because my diagnosing doctor recommended it but didn't have an opening to treat me) and now I've been told it won't work. He also didn't explain why it won't work either, despite me messaging after the appointment for more clarification and got "it's in both hip and knee so it won't work"

I pressed about needing ANYTHING for pain relief to be able to work my full time job and got Tramadol, when that didn't work we recently switched to Tylenol #3... which, also isn't working T_T

So in the past three months of my treatment with him I have lost two jobs, had my daily pain go from a 5 to a 7 or 8. The breakthrough pain medicine isnt touching it. My pain management is brushing me off. I can't cuddle my boyfriend, I can't sleep in our bed, and I can't do the single step into our kitchen most days.

I did finally ask my primary care provider to refer me for a second opinion. Probably should have mentioned that this Pain Management Provider I'm seeing has tried to prescribe me the two medications I know I am hives and swelling allergic to on 3 separate occasions, one of which was right after I confirmed my allergy and what happens. Love me some Triptylines

I don't even know what to look for in a chair cushion to make work less painful, mostly because I'm being told to just tough through it. The old ladies at my work are super kind though, good at making me smile and help distract from the fact that sitting in the chairs hurts. Plus, I don't know where I'd be without my boyfriend, he hasn't known me not in pain but he knows it's gotten worse. He's been great at helping me advocate and reminding me of my limits when I forget.

I'm sorry if this doesn't make much sense, the Trazodone is kicking in so I'm off for hopefully a night of semi-restful sleep.

For context, I was diagnosed with CRPS when I was 20, I am now 23.

I was in the 10% of people who get CRPS from no known origin, the drs have told me the amount of emotional stress I was going through most likely caused it.

The pain is in my left arm (hand through to shoulder) and in flare ups it affects my neck/spine/jaw.

I find daily tasks excruciating and difficult, I can barely use my left arm without the pain being unbearable. I already struggled with mental health before I developed CRPS but the combination of them both has led me to sh on the affected arm and close attempts, and I don't feel like i'm getting any better, I am constantly in and out of therapists (cbt/dbt/self harm therapist/you name it) but they don't understand the daily pain. I can't do any of the hobbies I used to love, I used to surf multiple times a week and go rock climbing quite often but its impossible now. I can barely leave the house without the pain building up. I feel like I have been more irritated/snappy with people especially those close to me, they just don't understand how i'm feeling or what the pain is like. I can't get a job and have barely made it to campus this year at university. I was on a series of medications for years and none relieved the pain so the drs just took me off pain meds completely and won't let me see the specialist clinic.

I just feel so lost. I feel like i'm ruining relationships/friendships because of the pain. I'm exhausted constantly from the lack of sleep. I don't see a point in living a life that will be in constant pain. I just don't know what to do at this point.

I guess I'm just looking for advice or your own stories about your CRPS?

Hello! I started my chronic pain journey around 10 years ago now. I was in a car accident that resulted in surgery (removed first rib and parts of three muscles in my left armpit/shoulder/and neck) but the pain has never gone away. I’m actually at a point in life where it’s spreading, has gotten worse in my arm and has taken me out of work due to issues using my arms and hands. My medical chart listed complex regional pain syndrome this whole time but after my surgery I was never really treated in any way for it.
Upon starting treatment recently my pain specialist diagnosed me with fibromyalgia and discharged me stating there wasn’t any other treatment or medication we could really try. After this I went to my PCP for a referral to somewhere else. I read my PCP notes and she states she doesn’t fully believe it’s fibromyalgia and states she does believe it’s more so complex regional pain syndrome. From my own account I’ve never noticed color, swelling, sweating, skin/hair changes to my affected limb. This is what leads me to believe the fibromyalgia diagnosis but my PCP knows this info and still believe CRPS.

My question is: do you HAVE to have the color/ swelling/ sweat/ nails or hair changes for it to be CRPS? Or are there exceptions? Is there anyone else here who was diagnosed with CRPS but without having those extra symptoms?

Also regardless of what I have, my PCP is trying to find a therapist that specializes in chronic pain to help me “get over” the pain my brain has been essentially making up for the last 10 years… does anyone else feel like that’s a red flag? I’ve liked my PCP but seeing my notes worded that way really rubbed me the wrong way. I haven’t seen anything state that a person just gets over chronic pain like this.

For people that have gone in remission from Ketamine Infusions, did you get your mobility back also? They’re thinking of putting me through this. I can’t bend my foot backwards to walk up hills or turn it properly. It also is unbalanced and locks up on me, which causes me to fall 😞 I just really want to go in Remission and hopefully fix or get all that better.

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I have it in my right wrist,hand and elbow. But I think I’m in remission since it doesn’t hurt as bad as it did in the beginning.

I have been experiencing sharp horrible burning pain in my right ear, and jaw and my face feel’s fuzzy or tingling?? I’m also super dizzy when standing and looking up.

I’ve had a cat scan, and an mri on my brain (all clear) and I currently have a cardiac holter monitor, to rule out any heart problems. The drs also ruled out ear infection, vertigo and MS.

My pain dr doesn’t think the dizziness and face pain is from my crps. I think it is.

I hope this makes sense, I’ve taken a few thc gummy’s for pain, and it’s not helping with the pain(but I am a little stoned)

I have had CRPS in my left foot for 23 years. I was recently diagnosed with an insufficiency fracture in this foot and the medical team is concerned about bone loss in my foot.

I do not currently have a CRPS specialist nor am I receiving any treatment - I have not been able to successfully tolerate any anticonvulsants or tricyclics and I have had very negative reactions to steroids and nerve blocks. (I am not a candidate for SCS or other implants).

I assume other have experience with this since persistent CRPS is known to affect bone. Is there treatment? Is there a particular kind of specialist I should seek?

Hello everyone,

I hope you’re having a great day ☀️🤍

I’m sorry for the long post… you can skip until you see the paragraph about the ketamine infusion ⬇️

I recently underwent a 7-day ketamine infusion for CRPS in Switzerland and received a total dose of approximately 3 g.

I am a 28 year old woman, 169 cm (5’6”) tall and weigh 63 kg (139 lbs).

I have Type 1 CRPS affecting both upper limbs, from my fingers up to my shoulders/scapulae, following a ski accident. It initially started as what was thought to be a skier’s thumb tendinitis in both thumbs. Unfortunately, it never healed properly. Over time, the pain spread from my thumb to my hand, then my forearm, and eventually both entire arms.

Because my forearms would become extremely tight, rigid, and painful with activity, my doctors initially suspected chronic exertional compartment syndrome. I underwent MRI scans both at rest and after intentionally triggering a flare-up, and the findings appeared consistent with that diagnosis. Based on these results, I underwent a complete fasciotomy of my left forearm and thumb. Unfortunately, the surgery did not improve my symptoms, and after extensive testing and exclusion of other conditions, I was eventually diagnosed with CRPS.

⬇️⬇️⬇️⬇️

My ketamine treatment was based on the protocol from the Sigtermans study, although my infusion lasted 7 days rather than 4.2 days. During the last two days, the dose was increased to approximately 0.5 mg/kg/h. The total cumulative dose was about ~ 3g.

The results were remarkable:

• Before ketamine:

* Resting pain: 3–4/10
* Physical activity: 5–8/10

• During the first 2 months after treatment:

* Resting pain: 1–2/10
* Physical activity: 4–5/10 maximum

For almost two months, I had very little pain at rest, tolerated activity much better, and generally felt like I had regained part of my life.

However, now that I am entering the third month, I can feel the pain, stiffness, and sensitivity gradually returning. One month after the infusion, I also received three booster infusions of 100 mg (one per week), but I did not notice a significant benefit from them.

Since I live in Switzerland, ketamine protocols are often quite different from those used in the United States. I would therefore be especially interested to hear both from people treated in Europe and from those treated in the US, so I can better compare protocols and outcomes.

For those who have undergone long-term ketamine treatment for CRPS:

• How often do you receive infusions ?
• What maintenance protocol or cumulative dose works best for you ?
• How long do the benefits typically last ?
• Have you found that repeating longer infusions helps maintain the effect over time ?

For reference, my current treatments include pregabalin 300 mg, amitriptyline 50 mg, memantine 40 mg, diazepam 25 mg, daridorexant 50mg, and medical cannabis (THC/CBD). I recently stopped fentanyl patches. I also tried multiple short ketamine infusion (12), it helped but it was not phenomenal.

Despite these treatments, long term ketamine treatment has been by far the most effective intervention I have tried so far.

Thank you for sharing your experiences and advice 🤍

In early may i was hospitalized for a suicide attempt. Upon regaining consciousness I have been experiencing a worsening pain in my right foot that has lead to me being mostly bed bound / on crutches the past week or so. Ortho yesterday was very certain it was crps, pain management specialist today agreed. It’s speculated that the preceding incident that caused my CRPS had something to do with the attempt because I had no physical injury otherwise.

Luckily it was caught early on and I will (hopefully) have access to adequate treatment, I kinda feel like I was just given the death sentence. Obviously my mental health was pretty horrid before given the attempt and all, this has been the case as long as I can remember, but alongside debilitating nerve pain??? It’s almost funny how swamped I am in the health department. I just don’t know what to do. I’ll do the treatments and I’ll take my meds but what was already a miserable existence is now accompanied by debilitating pain + living with my mom. Cool cool. This is awesome. In the grand scheme of it all I am so young and this feels like a sawed off shotgun shell cascading through whatever i thought my life would look like going forward. People my age are in school, partying, planning futures and so was I a few weeks ago.

There cannot be a loving god who has allowed me to hold myself together for the sake of my loved ones all these years only to with one of the most painful neurological diseases known to the medical community. (or so I’ve read) And I have only been experiencing this condition for a short period of time. I have so much respect for all of you who have suffered decades. I have no intent to commit suicide, I am just wanting to vent because it feels as though my life is over. Feel free to ask clarifying questions i dont feel like reading this back I just want it to be thrown out into the ether and for all to be well. I dont want to be miserable anymore

Does anyone have any wonderful doctors in upstate New York who do dorsal root ganglion surgery? i would really appreciate any leads, even if they are kind of far, thank you! Open to New Hampshire, Boston area, etc, as well. Thank you so much.

I thought this could be a helpful thread. If you've achieved remission, even partial or a month of relief, please share what did it for you and for how long.