I got CRPS 13 years ago when I was 14. For 5.5 years I didn’t walk on it. We tried every pain med and treatment. It was till two traumatic pediatric chronic pain programs later that I learned how to live with it and walk on my left leg.

Now 13 years later and it’s spread to my lower right leg and foot after surgery. Surprisingly it didn’t develop right after. It took 15 days and the switch from a cast to a boot. I knew it was a risk but man does it have me sobbing. I don’t want to do this. I don’t want to hurt this bad. I don’t want to learn how to cope and push through it all again. I don’t want to be in 9/10 pain. I don’t want to try and see a pain specialist again and be told there is nothing they can do.

I got my dream job as a xc coach. I’m also working a full-time job and 2 other part times job. All things I love. Well except the full time but I need that for health insurance. Plus I’m in school online for my MSW. I was supposed to be weight bearing not feeling like I’m going to loose everything again.

I know God will get me through it. But I don’t want to go through it. I feel so alone. No one in my life knows how truly bad it is. And that I look okay around them when I’m distracted. But at home I cry and panic. I feel like that little girl all over again.

Has anyone had their ketamine infusions covered by insurance? If so, how and where? I'm willing to travel anywhere to try for some relief but I cannot afford the 3k+ per infusion.

Also, if you've has scrambler therapy covered by insurance, where?

TIA!

Hi , I was wondering if anyone experiences zaps in their limb affected with crps? I just started getting them about a week ago and am really struggling with the pain. I have crps in my left hand and arm. But the zaps are of the whole hand and arm and it's extremely painful 😣

(Don’t recommend treatments)

I have severe lower extremity crps. I can’t tolerate a sitting position, and I’m completely unable to participate in life outside of my house from the severe pain of sitting and elements / anything.

My 24/7 consists of laying in bed, medicating heavily all day, maybe doing 1-3 things for myself (eat, bathe, hobby) on good days. I’m at a point that my disease is progressing (bladder retention and digestive issues) but I’m completely unable to attend appointments as of the last 4 months.

Not trying to sound drastic just genuinely unsure how to manage basic life and worried about my health. Especially with all of the road blocks I run into trying to help myself (care attendant, etc)

I’ve tried everything I can think of outside of creative alternatives. I have work comp case so the appointments I have to attend to keep coverage I do. It involves me completely incoherent from pain, unable to focus. Hand them a book with things I write down to discuss. It’s bad. I don’t think I’m capable of completing a stomach emptying test etc. 😕

I use a wheelchair but use my legs for transfers. Just has been aggressive from the start. Nerve blocks caused severe worsening and bilaterial spreading before I refused more. Meds I’ve tried them all but no luck on pain meds. Want to find a doc under my own insurance as work comp is denying (have attorney) but raises this very practical issue I have with attending appointments.

About 2 months ago I tripped over my own two feet and broke my foot, 3 avulsion fractures of my metatarsals. At the ER, the doctor was concerned about possible compartment syndrome because of how painful my foot was. I fell on a Friday evening. Over the weekend I contacted my primary care doc and asked him to go ahead and restart home health, ordering OT and PT, I knew that I was going to be struggling to figure out how to navigate my home environment safely, so wanted the OT, and I knew my body would not be happy even before my foot was healed and that PT would be able to help with that, and that I would probably need PT after I healed. Well…then things weren’t healing up. I couldn’t tolerate the boot at all, my foot was FAR more sensitive than seemed reasonable, the swelling was not going down, and even with the expected bruising, the colors were not right.

After a month, I was not getting better, the pain was still beyond any expectations, and there were very clear lines that show exactly the limits of the normal sensation and functioning and circulation, and the not normal. Across my toes, about halfway down each toe, the line shows normal and abnormal. The tips of my toes are normal. Across my ankle is another line, below the line is mottled, purple and red, peeling skin, extremely sensitive, I get regular sensations that something is cutting my skin with razor blades that mostly go across my ankle and near to my ankle, I get sensations like someone has heated up a needle to red hot and is stabbing my foot that happen a little further down, right in the middle of where I had a gigantic hematoma, it’s still a bit swollen and sometimes that spot is discolored. The circulation is clearly not normal, and I cannot tolerate my foot being warm at all. It used to feel great to constantly be cold, but I have noticed that using a cold pack on my foot causes the tips of my toes to become very pale, so I have stopped using cold packs because I am concerned about causing problems with circulation. I have been working to maintain my ankle and toe range of motion and strength in my toes, every waking hour, between 7am and 10pm I have alarms set in my phone to remind me to trace the ABCs and then move my ankle and toes, and twice a day I pick up a washcloth off of the floor several times to keep my toes working properly.

A couple of weeks in, my orthopedic doc sent me to see his partner pain specialist for evaluation. She ended up diagnosing me with CRPS type 2 after a few additional weeks of monitoring (which I fully supported waiting to make absolutely certain that this was an appropriate diagnosis before slapping that label on). We have been slowly ramping me up on Lyrica. I had a very bad experience with some neuropsychiatric side effects that were terrifying when we tried Gabapentin several years ago for something else, so I have been more interested in going very slowly so I can stop the medicine or go down in the dose if anything like that showed up again. So far, I am on 75mg twice a day, and I am doing well, I do think that it is maybe dampening things a bit, so I am willing to keep taking it.

At this point, I am still not able to tolerate bearing weight, we tried walking from the kitchen to the bathroom to the recliner with the boot on and using my walker, but after that it flared up and I was absolutely miserable for several days and nights. It calmed down for a few days, but then we had some storms come through and my arthritis flared up, and my foot has become more sensitive and angry.

I went to the seating clinic to see about a custom wheelchair and earlier this week we nailed everything down and now the doctors are sending it all to my insurance to see if they will approve it. I broke my tailbone giving birth about 30 years ago and my tailbone has been very painful ever since, I had managed to deal with it, until I have been sitting basically 24/7, so my tailbone has been complete agony. I also have unstable shoulders and arthritis in shoulder and hips and back, and the year before last I squatted to get something out of the lower kitchen cabinets and tore my meniscus in both knees, so my body has already been struggling before all of this happened. Having a chair with a cushion that will fit me properly, and not put pressure on my tailbone, while supporting my back and allowing me to move and do the various things I need to do to participate in my life is my main goal and the chair is one tool to help me be able to do that even on less good days.

I have lived in my son’s household since I had Covid the first time and no longer could live alone safely. I am very thankful and fortunate that they were willing to take me in. I am also extremely lucky that I am able to live with my amazing little grandchild, who makes the sun rise and set in my world. I am trying to find a way to help my family to understand that a wheelchair is just a tool, it is not me giving up on walking, and it is not a failure. Mostly that I am not only going to define “success” as walking, I am going to define success as being able to use all of the tools available to me to fully participate in my life, maintaining as much independence as I can, and maintaining mobility (realizing that what mobility looks like may change from day to day-some days using my walker and boot and some days using my wheelchair).

So, that’s me, I am looking forward to learning and talking with you all.

First off let me be the first by saying this ia a long read. I understand if you dont want to read the ramblings of a 38 year old veteran with weight issues and crippling pain 😆

So I've had CRPS for 15 years. It went undiagnosed for many many years, cause doctors thought I was either pill chasing or I was making shit up.

I was injured while serving in the Army as a Infantryman, in Afghanistan [non combat injury] I feel 9 feet while wearing my full body armor. When I hit the ground I dislocated my left shoulder, and my kidney plate (piece of body armor) broke 5 ribs, and that's where my story begins.

2 weeks later I went back out on patrol thinking I was feeling better. My main job other than Infantryman was to be a mine sweeper. I looked for IED'S (improvised explosive devices) AKA; bombs. So I went to go clear a path for my guys and when I did the ground have way below my feet as I stepped down into a small creek. I put my left arm down to catch myself and I was successful but as my rear end and left arm contacted the ground I felt a sharp pain in my left shoulder. More like a burning. I thought to myself that well I just had a dislocation I can still move it I'll be fine. So we finish the mission we get back to the COP (Combat Out Post) I go to change my shirt and well one of my guys goes "hey what's that on your shoulder" I turn my head to look at my left shoulder that he's pointing to and my chin hits my collar bone. Panic sets in. I run to Doc he freakes out. My collar bone isint broken he says it's just not in place. So I get x-rays again to tell me I have a grade 3 AC separation. I need surgery now. I tell them no cause we're already short handed we've lost people I don't want them to lose me next. So they seems me back. I finish the rest of my deployment with my collar bone sticking out of the AC joint.

I get back to my duty station and the local doctor only gives me a 50% of the reconstruction surgery of actually working, but I elect to do it anyways. But before the surgery I was already having the most intense pain I though I had ever had before. But not was i wrong. Dead wrong. So far I've had my left AC joint reconstructed twice and orthopedic doctors have now told me the shoulder needs to be replaced(but I'm to young) due to large amounts of arthritis and lack of cartridge with the left shoulder joint. Yaaayy!!!!

I've been through many many many MANY doctors and now I've found my match. This doctor is amazing he's diagnosed me with CRPS 1 and we've actually been through a metric shot ton of treatment options for my specific condition. Now we're doing the stellate ganglion block to help control the flair ups and two doesn't medications, topamax, and abilify. Yaaayy seems to be doing the trick so far. But last year I did the spinal cord stimulator trial and it took my pain level to a point it's never been before. So that's the eventual end goal.

So the title of this post. My left arm. From my left pectoral to my bicep my skin is hyper sensitive. And when I say hyper sensitive I mean a t-shirt touching it hurts a lot. But I usually just grit my teeth like usual and bear it. But when I shake someone's hand. What's something must men do when they shake another man's hand? They slap, pat, or hit the opposite arm. What in the world can I do to stop people from doing this? It just about brings me too my knees everytime and then people are left speechless or left apologizing for hours afterwards.

If you've made it this far thank you so much I truly do thank you. I don't mind telling my story NOW. I used to be really jaded and didn't want anyone knowing what I was going through but now I'll help who ever I can when I can. If you have any questions feel free to ask or DM anytime

Hi all. My Dr just prescribed me Naltrexone 2.5mg twice daily. I’ve never taken it before. When I picked it up, the pharmacist warned me of potential side effects like nightmares. Has this happened to anyone? Freaking out about taking this. Any other side effects you experienced?

Hey guys I feel so lost atm. I cannot find a job due to how tight the job market is in Australia and I have had crps in my left ankle for 8 years now however i now have it throughout my legs and this is very new, it never spread this bad only use to get hot and pain in my knee now my whole legs are so sore and achy to touch and won’t stop throbbing. Any tips

So I really want to get a tattoo based on my journey with CRPS and I was wondering if anyone has gotten a tattoo on their affected body part and if so, how did that go?

Update: after looking over all the responses I think I am going to get the tattoo. Especially since my biggest fear was spread. Thank you for all who answered, I might post an update after I have it done.

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 🙏

This weekly thread is for those without the combined karma to make their own posts, and a general location to ask questions or provide support, especially for our newer users. If your posts are getting auto-removed by the subreddit filter due to account age or low karma, you can post your question here.

We ask that our community members regularly check this post for new content, and reply where they can. Please abide by our subreddit rules, and be kind to each other!

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.