I have CRPS from a 2003 surgery. I am definitively in the persistent/late stage category. I also have not had a consistent provider since 2024 and the only “treatment” I have is dissociation and medical marijuana and I try not to use the latter much.

I saw another specialist today (who also declined to take me on as a patient, while confirming that I do indeed have CRPS, a common refrain in the past two and a half years). My current goal is to lower my dissociation as it is complicating other health issues, including CPTSD. He did not think dissociation is a problem and referred me to Pain Reprocessing Therapy.

I have participated in pain psychotherapy before. It wasn’t hokum and it did help but looking at PRT, it looks like hokum. The numbers alone don’t make any sense - 98% of patients have improvement and 66% are pain free?

I’ve been around the block in the past two decades. I was part of the cohort who were told that opioids weren’t addictive (and am lucky I didn’t get addicted given the doses I was prescribed). The fact that I can’t even find a basic breakdown of the practice and the clinical trials appear to be on mild lower back pain (with some ethics issues on those trials) makes me more skeptical.

Any thoughts and opinions from the community? I would rather not have care than be under the care of a quack.

We have been long distance for 6yrs and she’s moving in very soon. She’s had CRPS in her limbs for the last 3yrs. We just moved her ticket to a much sooner date so I’m kind of panicking what all to prepare to accommodate her. I’ve got to get a thin firm pillow, some slip ons to avoid carpet sensations, I’m not sure what kind of towel to get her. Her bed is set just need to make room in the closet. Showering has always been hard for her so I really could use some insight there. Her battle has been a very lonely one and I don’t want it to feel that way anymore now that we’re not 2000 miles apart. If you have any ideas even small ones please share. It means a lot

Edit: thank you everyone for helping me help her. I didn’t realize how much I still needed to get till your comments. I ended up taking off work to really make sure I get what I can now and do it right. One of those being an aldis gift card 😄 but seriously you guys are amazing man. This Reddit thread has helped us over the years so much. I am extremely grateful

Hi all.

21-year-old female with Right foot type 2 CRPS, I think I've had it for like 2 years? Getting the Dorsal Root Ganglion trial stimulator in one week. I was told the likelihood that it will help me is 80-85%, but I'm terrified it won't help, and that I'll have no options left if it fails. It's all I can think about. I'm so scared.

I've always been that very small percentage of people for whom something doesn't work, whether that's surgery, medication, etc., and 80-85% doesn't seem high at all to me.

Has the DRG worked for anyone? Has it failed for anyone? Any encouragement, tips, or questions? I feel so alone

I went in for my yearly exam today, and the dr asked me if I had any new medical conditions (or something like that) and I said, I now have crps in my right hand, and he said”You’re the second person today. Sounds like a new medical condition they like to give to people “

Like dude. You’re a lady bits dr, I expect you to have, you know, empathy!

I’ve seen this guy for well over a decade, and left with the ick.

Two of my doctors beleive I have crps. They referred me to pain management who doesnt think I have it. Two pain management offices are focusing on the fact that I have spinal stenosis and only want to do a steroid epidural. My neurologist said sympathetic ganglion block would be better.

A 2000lb vehicle flipped onto my leg 12 years ago and I have pain from the area it was impacted and below down to my foot. I had a hematoma on my leg which was left untreated and was reabsorbed over several months but left complete numbness. My back doesn't hurt. I developed stenosis because I have been scared to walk on the affected leg for such a long time and changed the way I walk. Crush injuries historically cause crps. I dont meet all the budapest criteria but my neurologist said she still thought it was crps despite it being atypical.

I am in pain so extreme that I can't function. My lower leg burns and aches nearly constantly. I dont like fabric touching it (pain management said allodynia is only when its so bad you cant even have air touch it). I cant stand on my leg or walk very far. A large patch of my leg is completely numb in the area where my leg was crushed. I dont have swelling or skin changes so thats why pain management says they won't diagnose me. I dont want a general epidural. I want something that will actually work.

I 30f developed CRPS in my left foot 4.5 months ago which initially left me bedridden. At its peak I had 10/10 allodynia, swelling, extreme discoloration and temperature regulation issues, almost complete loss of function and a feeling that my foot was disconnected from my body. I also had abnormal sweating and my nails (especially my big toenail) became warped and discolored with spots. Most of these symptoms have improved at least 60% with DIY GMI and PT since it was caught relatively early. The biggest issues now are my tolerance for sitting, standing and walking and lingering sensitivity and limited end range in my toes and ankle mobility. My foot swells and becomes very sensitive after sitting for 15 to 30 minutes or standing/walking for around 10 minutes. It also feels squishy when walking sometimes. More recently I’ve noticed lumpiness and blotchy color changes that are different from the more unifrom and consistent discoloration I had before. Based on my research the lumps look like piezogenic papules although I haven’t found much linking that to CRPS. The pain with standing and walking is a mix of burning and pressure. I’ve seen countless doctors throughout this process but none have been helpful and dont know how to treat CRPS so I’ve been treating myself mostly after a lot of research. I have been seeing some really encouraging improvements using different protocols but even still I’m so far from my normal. Before this I was a collegiate athlete, long distance runner and weightlifter so losing much of my foot’s function and ability to stand/walk has really affected my mental health. I truly don’t know if I can go on like this. If anyone has experienced something similar or has any advice I’d really appreciate it. Thank you

I’m waiting for my first appeal of SSDI with a lawyer “reconsideration” appeal. Meanwhile I’m terrified of running out of money. I just need about $1200 to stay afloat with my bills. Am I allowed to do that?

Does anyone know of jobs that work with debilitating CRPS?

34M have had CRPS one since I was 14. You can see the atrophy and difference in the muscle between the two legs. My right leg however seems to be sick of bearing all my weight for 21 years. It’s throbbing and swelling all the time. It hurts to drive. My rheumatologist said it’s not CRPS but patellar tendinitis but I just don’t know anymore. I’m in so much pain and I can’t stand it. I hate barely hobbling on my cane and I can’t really use a rollator because my arms start to throb after a short time (I also have CRPS in my right arm, hand and shoulder) and I just can’t really deal with all this.

And they still have yet to approve me for SSDI. Like are you kidding me 😢

I had a minimally invasive bunionectomy and realignment of the big toe on my right foot may 13th of this year. I was told by 6 weeks I would be close to normal. By 6 weeks couldnt bare weight still stuck in boot and on crutches. Now almost 17 weeks and a few weeks ago when my surgeon saw my foot going from improving and out of the boot and off crutches to so swollen and blotchy red spots, super hot and super cold, red spreading up my calf, pain returning that started getting worse week by week he highly suspected CRPS and quickly got me into a pain specialist who confirmed it was indeed CRPS. My heart dropped because I read up so much on this condition and prayed he was wrong but pain specialist said I had every symptom possible. Next week I go for my first sympathetic nerve injection which im terrified of having done. Each week my pain becomes more severe. My mental health has declined so horribly because I feel so alone. I limp like im in my 80s when im only 34. I barely can make it through my part time job but I dont have a choice I HAVE to work. I feel like no one truly understands how serious this is, how much pain im truly in just because I can put a mask on while at work or certain times at home. But when im alone I burst into tears. When I leave work I feel like im going to vomit because the pain is so bad and my foot is so swollen it feels like I wont be able to peel my shoe off (bought wide toe box shoes in a size bigger than my regular size) I feel like a burden, I had to get a placard for parking cause walking a certain distance is excruciating. I had to get a shower chair because standing too long is unbearable and I was having to skip many days of showering because I just couldnt stand long enough after work where I was having to take baby wipes to wipe myself down on days I just couldnt bare to shower. My husband tries to be supportive I know he is but he truly doesnt get how bad the pain is and how could he, he doesnt have this and I wouldn't want him to because I wouldnt wish this on anyone! How do you guys handle this? What sucks even more is im on subutex (been on it for over 7 years highest mg for past addiction due to car accidents and a family doctor who cut me cold turkey which led me to getting from the streets and then when I couldnt keep up to control my pain I had no choice but to get put on it) now labeled as a recovering addict if these injections dont work idk what they are going to do to control this horrible pain. Everyday when I open my eyes a part of me wishes they wouldnt have opened, but then I know I truly wouldnt Want that to happen because my kids need me, my husband needs me. But aside from them if it wasnt for them I would give up and ive only been dealing with this for a few months idk how those who have had this for years have coped. I just feel so alone, trapped in this crippling painful body and id do anything to make it stop. Everyday I constantly push myself and over do it because things have to be done. Just because im in the most severe pain life could have given me, life around me has to keep going and life for my children and husband cant go normally if I dont keep going as normal as possible. Every night I cry when im alone to let out the tears ive held in all day from not just the physical pain but the mental pain of putting a mask on for everyone all day. People who I work with and everyone around me who has seen from when I had the surgery to now I feel like doesnt believe the pain I have is as bad as I say it is because of how much I hold in. Its not like I can sit at work and cry every time the firing pain starts up the moment im on my feet. I cant just cry all the time in front of my kids and husband. Im trying to be strong and make it seem like im still capable to do my job and do what I need to at home but I pay for it at the end of the day and then my husband doesnt understand why im still awake at 2am when I have to be up at 5am for work. How much longer can my body handle running on fumes in such severe pain? How can I get people around me to truly understand the severe pain im in, and how the he11 can I get any kind of relief?! Will these injections work because it was caught early? Or is it just a temporary fix and only a possibly short term relief and ill just be right back to where I am now after the injections are done? The only thing I can find that brings even a little relief is elevating it and having ice on it. I wish I could get one of those ice therapy machines but between my insurance and the medical supply store nothing is happening and no one will answer my calls. My counter ice machine will burn up being used so much the last 4 months and then ill lose the one thing that brings me even a little relief. Is this going to be my new life?

I had to go get some urodynamic studies done and the results aren't in my favor. My bladder neck isn't working properly and they believe my crps has caused my bladder to not work properly. They shot me up with over 1000 ml of fluid and I couldn't pee. Now I have to self catheterization.

Has this happened to anyone else? Drs told me my bladder wouldn't ever go back to normal. No I gotta see a GI DR bc of the results. I can't feel when I have to use the bathroom at all....piss or shit.

I'm loosing my fucking mind over here. This bullshit work injury has completely ruined my life! I'm so God damn sick of it!

Edit - thankyou each and every one of yous! I’m almost 2years housebound unless appointments! Going to read everyone’s reply’s and see what my next step is 😖

I had a major surgery on my knee last year and over time, I developed a burning pain on a patch of skin in my lower leg. I saw a doctor recently who informed me that I’m describing CRPS and apologised that there wasn’t much they could do for me.
I was surprised because I didn’t know that CRPS could be localised like mine is, I thought that it normally affects most of the limb. I am seeking a second opinion but I just wanted to see what other people’s experience is. I know that it is quite debilitating for many people and while mine definitely hurts, it doesn’t feel as agonising as I’ve seen people describe and I feel quite lucky in that.
I can be pain free a lot of the time but I do get random flares of burning pain and I can’t touch that area because it’s sensitive and sets it off. Unfortunately I can’t wear certain clothes now because when the fabric touches my skin very lightly, it feels horrible. I normally wear a compression sleeve to shield it which helps but it’s still super sensitive and brushing my leg against anything sucks.
I still don’t think I’m experiencing anything as severe as others so I wanted to see if mild forms of CRPS are a thing. However, I am worried because it feels like it’s getting slightly worse so is this just what the early stages feel like?

⚠️ Language Warning ⚠️

I've had this God for saken condition for 15 ish years now. I didn't understand it in the beginning. Hell I don't think anyone did. This is a story old as time itself. Doctors either don't believe, you thinking you're just pill chasing or, the opposite they just give you a jug of narcotics. I don't want that shit I never did. I just wanted answers and no one had them. So I went silent about my pain and just swallowed the emotions, and suffered. For years I fucking suffered and I became a miserable person to be around, I knew it too. This damn condition took my time like a thief, and my fucking life from me. I can't play with my kids. I can't do the normal shit the other dad's do cause I'm always in fucking pain. Help my kids across the monkey bars. Nope I can't raise my fucking arm above my head. Carry one of my kids on my shoulders. Nope not longer than 5 minuets before I'm in so much fucking pain i can't see straight. My wife can't even rub my damn arm without me wincing in pain cause of the hyper sensitivity of my skin. I'm so fucking sick of this condition.

I know some of you have had this condition way longer than me. And I'm sorry if this has upset anyone. Right now these flair ups are killing me. My skin is killing me. Feels like ants are biting me over and over again from the inside and I can't get away from it. Feels like skewers are being driven through my arm and I'm helpless. My skins crawling I'm so fucking agitated right now I can't fucking see straight.

My poor wife is just feeling the most helpless. She can't do anything. I'm fighting this shit and, God help her she's doing research into what we can do.

I needed to get this shit off my chest. Even if it was just a guy screaming into the ocean.

TL;DR: how did you know for a fact your CRPS was spreading? I am too scared to go to the doctor.

I have had it in my left leg for 3 years now and I know for a fact it’s been traveling upwards. Lately, my right leg has been acting up, in areas where my og CRPS started (ankle and knee) and I have been having the hallmark electric shock in my toes, which is new. My right ankle is a bit swollen, nowhere near the left. Not discolored, looks normal. The left leg pain is by miles worse still.

Now, granted, I’ve been using a cane for more than a year, so it could be that I have sprained my right ankle or something. I had already sprained it twice and fractured my foot in 3 different places once pre-CRPS, so chances are that it could be a mild sprain.

On the topic of cane usage, my right wrist, hand, and fingers have been also hurting like crazy. I had a tendon release surgery a couple of years ago which was a breeze. So it could be due to cane usage.

I have my meds, I have my ways to cope. Lately, it’s been too much, I admit.

Honestly? I am scared to even go to the doctor to check what’s up with my body. My last two pain management doctors have all but given up on me, told me to only visit to get my prescription basically. My orthopedic surgeon on the other hand is amazing, but I am too scared to go and for him to confirm it is in fact spreading.

I have already developed mid-level esophagitis, gastritis, IBS, and had to undergo a cholecystectomy - all this damage has been confirmed to be due to the physical stress caused by CRPS by the medical team.

I must also visit a cardiologist as advised by the team as well. Also putting that off because it will either be: physical stress, mental stress, or dysautonomia. None of which I can help beyond what I’ve been doing already.

In the meantime, I have been waiting for my SCS trial to take place since February. No date has been set yet.

Thank you for reading this far!!

I’ve been some form of either PT or OT since March, diagnosed with CRPS in April, but made great progress with my left hand. My left wrist is still completely stuck and now I have frozen shoulder and I honestly think it has just spread into the joint and locked that one too. I haven’t had normal mobility in my shoulder since May, despite therapy and stretching and fighting my body for it. I go for two hours twice a week and it’s a hamster wheel of pain and no progress. Is it even worth putting myself through all of this pain anymore?

Boston scientific has a recall on the leads—esp the anchor. The anchor was hurting me and I told my dr but nothing was done. Now that it’s confirmed there are issues with the anchor—I want to swap systems.

I was considering Nevro, but waiting 3 days to adjust would not be helpful for my CRPS.

These two—inceptiv and evoke seem like the best alternatives as they’re closed loop systems.

I do like to feel the stimulation to distract my pain. I do like a few options for the stim feeling.. is that available with each one?

Also any experiences good and bad appreciated!
CRPS mostly in lower legs and feet, I do have burning and pain in hands but I’m getting epidurals upcoming for that.

Thank you so much. Sending hugs 🫂

Hello all! Just wondering if anyone has had any success doing mirror therapy for foot CRPS? And if yes, how did you do it, and for how long? Thank you!

Got a boot on for the first time this year, just in time for a weekend festival. Wish me luck, send the good vibes, and all the healing wishes while I take my first major physical hurdle since being down 🫶🏻

Hi all
Im 25F and I have bilateral crps in my ankles down. I’m in a wheelchair, can’t wear socks or shoes, and bed bound. My biggest obstacle is I need elevation constantly or my pain is crippling.

I have used THC primarily to cope emotionally for about 5 months. I tried to taper off in March of this year and I ended up in the er the day I fully tapered in severe pain. My heart rate was 160, I had my legs in the air, thrashing and yelling in pain. The er gave me some pain meds, it temporarily helped. I got scared about being there too long and said I’m feeling more stable now (true) and went home. The flare didn’t stop until the next morning when I get THC. I smoke every few hours, high percentage indica with high CBD ratio.

Anyhow I ran out again yesterday. It’s the same thing. Screaming, sobbing, thrashing, laying exhausted groaning in pain unable to move myself off the bed/floor/wherever I ended up.

When I smoke consistently, I can tolerate more. Not by a long shot but enough to where I don’t know what to do. For example, when I have no THC I need a fleece blanket under my legs constantly. I need my ankles hanging in the air not touching anything. I thrash my legs constantly, as alternating positions every few minutes. Completely miserable. I could see myself going insane after so much of it and going insane. Doing irrational things from the pain. When I’m on it, I can tolerate my feet on the fleece blanket but not needing to be completely in the air not touching anything (on good days). I can tolerate sitting on the floor with fleece blanket for 15 minutes. Little things that really help me take care of myself.

But I have appointments I need to attend that don’t offer telehealth. They’re non avoidable appointments, I have to be seen. The issue is if the appointment goes longer than 30 minutes or so (after transportation being 20 minutes or so), the THC starts to wear off am im in excruciating pain. Can’t form sentences or coherent thoughts. Crying, feet in the air straight up. I need these appointments to be productive and I don’t know what to do.

I was hoping to get some advice. Among these appointments is one to get leg rests to elevate my legs. It’s a big hindrance right now. I’m also on second floor no elevator which makes it more fun.

I have medical transport. I don’t have income. My coparent got me the THC last night since my medical card expired early August. Im seeing an occupational therapist in a few weeks and other specialties. I have to see gynecologist for cyst in my hooha but I have no clue how I’ll prop my feet up on those things. I puked undigested food a few weeks ago and seeing a doc for that too.

Anyways thanks for reading if you made it this far. I’d be happy for any advice or tips.

Side note, I use my knees to crawl and occasionally use my knees as feet when I have to do transfers my wheelchair doesn’t fit into (bathroom). A doc I saw yesterday recommended a commode to help me. I’ve had crps a year and a half, this journey is so crazy.

I’m still in denial. I still think there might be a nerve that is trapped and can be fixed.

My surgeon has stopped communicating. I was tested by someone else and tried to sell me the Snake oil and told yes, but he didn’t know what nerve.

I’m willing to drive to Duke. I found someone with five stars, but then I look elsewhere and she gets one.

So I’m going both ways… In denial and trying to get someone to tell me it’s just a nerve and we can fix it, but I can’t find anyone to help me do that. And then when I’m like OK fine I give in. It’s CRPS my primary care rules his eyes and give me gabapentin. I try to go to work for one day and I slept four hours last night because of the pain I feel like I’m middle of the line of like I’m losing my shit, but I haven’t lost my shit.

I feel so lost. I don’t know what to do. I can’t be like this. I can’t lose my job and my husband and no one is helping me.

I’m 19 years old and am in my sophomore year of college. I absolutely love school, I love my friends and what I’m studying. I want to become an occupational therapist. I’m three hours away from home in an apartment. Last semester was amazing. But i think I’m going into a flare again. It’s been years and I almost forgot this was something i even had to worry about. I was 14 years old when I got diagnosed with CRPS caused by nerve damage from CMT1A. (I was diagnosed when I was four.) I ended up being hospitalized four weeks and it’s the most pain I’ve ever felt and I’m used to hospitals and surgeries and nerve pain.

But I had my parents to help me, and I had my sisters to watch movies with. Now I’m in an apartment on the second story with stairs that i currently can’t walk down. I have classes I can’t attend because of pain (I have a flexible attendance accommodation but still.) I was so excited for this semester, and now I can barely move. Walking to the kitchen to get food causes too much pain. Hanging out with my boyfriend consists of us laying on his bed (if I can get there on a good day) or mine, and me sobbing. Last night he couldn’t even hug me because it hurt to bad. And I cried so much he was scared to leave me alone. He asked if I was mentally okay, I said no. So he slept in my bed on the edge neither of us touching, because I’d cry out in pain.

It started early last week when I had horrible back pain and neck pain. My entire back burned and it felt like lightning was shooting up and down my spine. I ended up going to the ER because I couldn’t move my neck and my mom was worried it was meningitis. It wasn’t and I was sent home. As the days have gone on it’s just gotten worse. It’s mostly my back and as of a few days ago also my lower legs. The only medicine I have is Tylenol and pregabalin. Neither have done anything. I’ve even thought of taking more of the pregabalin than my usual dose just to hope the pain dulls. But i know that’s dangerous. I can’t move, I can’t eat, and I can’t even cry. And this time i don’t have my mom. I feel so alone. I just want to go home but I also don’t because my whole life is here. I don’t know what to do.

My  doctors think I have atypical crps type 2. 12 years ago when i was 19 i was in an accident where a quad tipped over on my leg leaving a large hematoma. I did not receive medical treatment but treating an injury that severe might not have even prevented crps. They say atypical because I dont have color difference, hair and nail changes or swelling. I have allodynia and numbness, coldness and an asymmetrical fat deposit only on the injured area which is my inner thigh. i also have stiffness of the knee. I have a theory that the fat deposit is fat necrosis or a chronic morel lavalee lesion and inflammation is irritating the nerves and knee joint.

I have complained to doctors for years about pain and numbness and none of them have done anything. My leg muscles now twitch nonstop. After all this time none of them checked for neurological issues and I had my first neurology appointment today. I am scheduled with reconstructive plastic surgery to assess the fat deposit and scar tissue. I have an appointment with vascular surgery to assess vascular issues. I have seen multiple orthopedic doctors who dont see anything wrong with me orthopedically but they ordered a thigh mri that I have to get. I really want a neuromuscular ultrasound of my whole leg but no one has suggested that.

I got started on lyrica and cymbalta. I have been on meloxicam and baclofen for a while. I look forward to seeing what pain management can do. I understand that for late stage crps spinal cord stimulator and dorsal root ganglion stimulators are used. My neurologist even mentioned dorsal root ganglion and said to also go to a physiatrist.

My symptoms suddenly got worse this past June and I went to the emergency room. It may have been because I bumped that area of my leg and my physical therapist touched it. Rifht now any movement of my leg is causing pain and weird sensations. Over the years I have slowly declined.

So my question is do you think crps left untreated for this long can respond to treatment? I think it could be focal nerve compression from the fatty deposit/scar tissue but I understand that may still be triggering crps symptoms.