r/CRPS

I have CRPS 1. 34M. Have had it for soon to be 21 years in my left leg. I walk with my cane on the left side since I also have it in my right arm and hand. Lately I’ve been going for walks to try to lose weight and my right leg seems to be done bearing the brunt of my weight for over two decades.

My doctor says it’s patellar tendinitis but it shakes when I drive and throbs when I brake. The cane is getting harder and harder to make work.

Idk how to use my walker and how do I get it out of the car every time? It doesn’t slide like a cane does so easily.

Curious to hear everyone’s thoughts. Thanks guys 😊

My crps has gotten so out of wack that my team of doctors don't know what to do anymore. I stay in a constant flare with dystonia, severe swelling where I can't even put any shoe on.

It all started as a work injury and 3 yrs later now my doctor wants to send me to Vanderbilt University for a full autonomic work up. It's gotten so bad it's starting to affect my voice. My voice is now very scratchy very low toned. Half the time when I talk no words come out....that's how bad this bullshit is.

Has anyone on the subreddit ever been sent to a major medical university for automatic issues? Id love to hear your experience. I've tried the scs and pain meds but nothing helps....I'm just in dyer need of some help

I need to get this paperwork in ASAP! I’m on FMLA, but I don’t know what to do. It looks like I can get intermittent work from home a little while longer while I try and navigate what my new life is like. My concern is my brain fog plus I’m gonna be adding more appointments. I’m terrified they’re gonna put me on a PIP because yes I’m definitely looking at my computer sometimes thinking what was I doing? I know I’m not 100%. So do I go on short-term disability? This is my insurance and my husband’s insurance and our only income and I’m terrified.

Any words of wisdom?

Has anyone here gotten adaptive driving? I know a friend that drives with hand controls. There’s a rehab rehabilitation driving place near me that requires a physicians referral. I’m wondering if it’s worth a try my CRPS is just in my legs most recently spreading to my right.. as of yesterday I’ve started to have spasms in my right leg that doesn’t cause it to move. It just gets stuck with the toes curled under, but I do worry about driving safety and no longer want to drive with my feet. As I don’t feel it is safe.

I’m just worried my doctor’s gonna think I’m a weirdo if I reach out and ask him. Like I feel like only paralyzed people use them.

I am looking to make a move to get access to better healthcare for CPRS. I want to stay somewhere with warm weather for obvious reasons, so I am looking at the Carolinas, California, and Texas. Currently in Florida but have had no success with doctors here. I've been told my conditions together make me a complicated patient and most docs here don't want to take me on. Combined with the 10+ month waiting lists to see specialist in my area I don't see a solution besides moving. If anyone has any docs or facilities to recommend that treat CRPS I would be very grateful!

Repeated shoulder out of socket injuries(lost count after 40) and had surgery. Which really is dumb when you develop more sensitivity to pain in that area. Now my arm is numb, presisting lightning feeling down every part of my nerve down my arm, it burns, if I move it just some my shoulder blows up and my hands purple(had darkblue one tine). The issue is that out of the blue: my nerves fire 100%, and I mean 100%, so hard that all my muscles in my arm cramps 100% also. I tried to make my arm relax, but I fell on the floor screaming that felt kinda primal. Then after 20-30 secounds that feels like years, it goes down some. This make everything worse, I tried to scratch my bum, then my operated shoulder just glided in and out. They tried to recreate in in surgery, but they could not(I know they did not take my arm and try to scratch my bum in surgery with that arm).
But my crps make my frozen shoulder worse and this just activates both the issues and they keep hurting because the other issue is. I know I had to do the surgery since when I slept, there was no muscle keeping it in place. So I woke up every morning having to break that arm in there. I could not wait for ambulance since every secound was hell. So now this has just become a situation where my pain doc is like: I know your shoulder hurt, but opiods won’t work long term. But I have no life now, I have to say no to everything since it hurts to much. The issue I’am having is the different pains stack on eachother- shoulderhurt, crps hurts more shouldee even worse, now Imagine 3 years with those stackings. I have no life line here, just my primary doctor, but he just half assed a request to a pain clinic that they denied. So I try again and request help, but since I’am under «no priority» because of my doctor did not do a good job and it can take a year before they require to give me an answers.
Any tips?

I’am on, oxycotin(15mg a day), pregabalin 600mg, amitryptylin 75mg, clonidine 450mcg, etoricoxib 60mg and zofran. I also get ketamine infusions every 3 weeks.

28, weight 120kg, 180cm tall

Okay where is the best of the best? I’ve had it since 2013. It’s spread to the right toes to hip. 9/10 pain most days. I’m ready to give up walking and switch to the knee scooter.

I’ve tried all the traditional things. Meds and infusions. Nerve block and scs. I see there a place in Florida that seems to ketamine coma. That seems dangerous. But where else? What else?

What about sphero clinic? I’ve always thought it’s a scam but at this point I don’t care. I’ll try anything.

Chinese researchers are testing DREADDs, a gene therapy to turn down neuronal activity, in the clinic

“Stunned silence.”

That’s how Bryan Roth of the University of North Carolina School of Medicine described the mood at a US National Institutes of Health Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative meeting in Bethesda, Maryland, this week when he told fellow attendees about at least seven clinical trials in China that are testing chemogenetic therapies in humans.

Twenty years ago, Roth developed the chemogenetic technology the trials are using, which is based on a group of proteins called “designer receptors activated by designer drugs,” or DREADDs. Designer drug is a bit of a misnomer in this case; the receptor being used in the Chinese trials responds to a small-molecule drug, clozapine, used to treat schizophrenia. But the designer receptor is much more sensitive to the drug than any human receptor, binding to it with picomolar affinity.

A researcher can introduce the gene encoding the receptor protein to a small group of neurons using a viral vector. Then, when the receptor is expressed and binds to the drug, it suppresses neuronal signaling in those cells and any brain circuits they belong to.

Dirk Trauner, a biochemist at the University of Pennsylvania who works on optogenetics, a related technology, says that DREADDs offer “a more precise knife” that, theoretically, could have reduced side effects compared with other approaches. Small molecules targeting endogenous receptors can have off-target effects when those receptors are expressed in other parts of the brain or when the molecules trigger closely related receptors; in contrast, DREADDs appear only where they are introduced.

The designer receptors have become a widespread research tool in neuroscience, where they have enabled researchers to alter brain circuits’ activity. But until now, they have not been used in the clinic.

“Over the years, folks have approached me to commercialize the technology, but there were all these barriers,” Roth says. “I think nobody wanted to take the risk.”

About 2 months ago, a rumor about designer proteins being introduced to treat brain diseases sent Roth and a postdoctoral scholar looking in clinical trial databases in the US and China. They found seven studies, which investigate intractable epilepsy, Parkinson’s disease, and neuropathic pain.

For several of the diseases in question, the therapy of last resort is to remove a portion of the brain, Roth points out. Chemogenetic treatment might avoid that, though if the treatment ended up having unwanted side effects, trial patients might seek relief through surgery after all.

Three of the DREADD trials use an adeno-associated virus as a vector to deliver the chemogenetic therapy. Gene therapies using viruses, such as these, carry the risk of serious, sometimes fatal immune reaction. Several people died recently in early-stage gene therapy trials in China. But Roth points out that six of the studies appear to have begun some months after the first epilepsy trial began, suggesting that investigators might have started after getting some indication that the gene therapy may be safe.

Jacques Carolan, a neuroscientist at University College London who was at the BRAIN Initiative meeting, posted on X on Friday, “If we needed more evidence that China is ahead in neuro, this is it.”

C&EN has reached out for comment to the investigators of record on the clinical trials.

According to Roth, the study with the greatest potential focuses on trigeminal neuropathic pain, which can be debilitating enough that it is a risk factor for suicide. “If that trial is successful, then it opens the way basically to circuit-based therapeutics for virtually all neuropsychiatric diseases,” he says.

Okay. Maybe I’m in denial. I’m managing on gabapentin. Is it because I am newly diagnosed and the best /s is to come?

I’m not convinced that it’s another problem too BUT I might have on that really does explain …. I can’t fix that problem if I do in fact have CRPS.
At a loss

Was convinced I had it but now I don’t know. Pain doc noted things that were not true so not sure if I can trust him. aahhhhhhh.

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!

Hi everyone! I have CRPS in my left arm/hand, since mid 2023. I've been trying to get off all my medication since mid 2025 so that my husband and I can start trying for a baby. Are there any women who stopped medication for their CRPS? How did you deal with CRPS while pregnant/trying to get pregnant?

I’m a newbie. Only started with symptoms Aug 1.

Was going to be home for 6-8 weeks. Just celebrated 22 years with an awesome company. Pushed back return twice because I just wasn’t recovering. They are expecting me in 2 days and the idea is ludicrous to say the least.

I am praying that I can maybe do STD while I figure out logistics and then a WFH situation so I can keep my home and benefits.

Just venting.

I just wanna say thank you to everyone in this group. I have been posting a lot and you guys have been so kind and supportive. I feel like this is the one place where I am understood. It helps me to feel less alone. It’s been a while 48 hours for me.

I ended up trying weed, it’s legal where I live, for my pain. Instead of finding peace, I found panic. Not realizing I had a deep trauma buried in my brain. With the first time I got high. That plus the pain had me struggling and just wanting to give up

Now it’s a new day and I feel so much better. Pain is 9/10. But I decided I’m not gonna give up. I don’t care if I’ve been looking for treatment for 13 years. I’ll keep looking. I’ll give ketamine another try. I’ll travel wherever it takes.

But seriously, thank you to everyone in this group. For when I’m hopeless or feeling alone, this is the place I know I can come to you for understanding.

You were all probably so sick of seeing my millions of posts in the last few days. I am so sorry to keep posting. I just feel like I’m losing my mind. The pain is so intense 9.9 out of 10. Is that the point where I’m failing the mask entirely. People are asking what’s wrong. I don’t know. I have this condition that you’ve never heard of. That’s trying to kill me. And at first, the painter just spread them out right leg halfway on my knee down to my foot now it’s slightly above the knee. Halfway up my thigh.

I know I’ve had it in the left leg for 13 years. So I don’t know why this feels so much more intense and unbearable. But how the heck do we stay alive through this? How the heck do we work through this because I don’t know how to do this. Right now I’m sitting in the parking lot of a cannabis store about to go get wheat for the first time with my friends cause I’m so damn desperate. If someone offered me something stronger, I’d probably try it. I’m losing my mind and I know I shouldn’t use substances but I think I would try about anything. I just don’t know how to live with this.

I was referred to a pain management office and they had an opening for tomorrow. I just got a text for my paperwork and it says it’s a non opioid office . I have had a nerve block in my knee that helped nothing and I’m wondering if this kind of office will just be a waste of time . Any advice ?

Hello!
I haven’t really been on here since I was newly diagnosed a little over a year ago. It’s been a hell of a journey. I was diagnosed in july 2025, following a bunion surgery (lapiplasty) on my left foot in june 2024. The pain doctor who diagnosed me did 2 nerve blocks shortly after diagnosis. I wanted physical therapy but he was concerned about insurance not covering the nerve blocks if a pt order was put in. The first nerve block helped so he did a second. Simply put, it was a very unprofessional experience. The second block caused me to get exponentially worse, and he did not follow up. I had been on 50 mg lyrica, 750 mg robaxin 2x daily for about 9 months at this point.
I have had chronic digestive issues since childhood. When my CRPS became more severe, they also worsensed. In winter of 2025 I was living in a garage, and the cold made me essentially bedbound for 3 months. Digestion got so bad i wasn’t eating, started having severe pain w urination. Got diagnosed with gastroparesis and chronic gastritis early 2026. Scheduled for a colonoscopy, prep made me vomit uncontrollably. Got admitted for a week, my IUD was embedded in my uterus. Got it surgically removed. Lack of medical marijuana for that week meant i was on dilaudid. Discharged as soon as i could eat again (was severely malnourished when admitted) and had no additional support. That was feb 2026.
Since then I’ve been able to go back to work (2 jobs, 42 hours a week!), get back to some of my hobbies, and cut my lyrica and robaxin dose to once daily. Now on 40 mg duloxetine, 2 mg motegrity, 50 mg notriptyline, hydroxyzine and zofran as needed. I’m still in immense pain every day but it doesn’t consume my life anymore. I fought like hell in ways I still can’t comprehend.
I’m only 22 and I’m so grateful that I’ve been able to keep my condition from worsening. I know I’m very lucky. Having said that, the mental aspects of this disease are really starting to get to me. I’ve had CPTSD for as long as i can remember, grew up in a religious cult, sexually assaulted more times than i can count, medically neglected as a child, the list goes on. All I’ve known is pain and sickness. I finally have built a support system that shows me that there is more to life than that.
I hate being so medicated so young. I finally found a neurologist to upkeep my prescriptions (dropped by pcp due to missing appointments, new one didn’t want to), and when i tried to discuss other options to help me get off meds, i was told there are none besides surgery or more nerve blocks. I know this isn’t true. I tried to apply to a scrambler therapy (the only one i could find in my state) and was denied bc im on lyrica and cant just go off for 6 weeks beforehand.
My brain fog and memory is so bad. I’m so depressed and exhausted. I don’t know if i should try to see a psych to switch up the duloxetine because that also helps with my nerve pain. I just feel like i need to do something different and the only options i’m told i have are to increase medication. I hate america

Feeling defeated, went through all of the things to see if I could get into the clinical trial and I was rejected because my swelling isn’t bad enough. I’m not in a bad enough position to justify going to Italy, if I were unable to work I’d consider it. So I guess I just keep shoving on in pain…

As ever, brevity is not my strong suit, though I try to be fair.

Background: I am currently being seen by the pain clinic medical director at (what I consider to be) the premier research university in my local tri-state area. He is the only provider I have ever seen that claims CRPS as a specific specialty. I have exhausted the local relevant provider options.

I specifically requested a referral to this medical director as my last attempt before retreating due to repeated bad experiences. Due to my demographics and appearing increasingly flat when I am in pain or stress, many doctors do not take me seriously or engage heavily in diagnostic overshadowing. I wanted a doctor in a more progressive metro area who could hopefully be better informed. I have now seen him four times over two and a half years.

Here's the issues:

1. He cuts me off mid-answer to keep the appointment moving forward, but then makes decisions on those half answers. My neuro diagnosed trigeminal neuralgia and put me on lamotrigine for it (in addition to the three other meds she gives me); he asked me to describe it and I got part way through the motor issues before he moved on and I didn't describe the pain or goblin/half-hag like issues I'm constantly counteracting, but he wrote down what I'm describing is more accurately facial palsy. Maybe it is, but I didn't finish telling him all of the symptoms before he had heard enough. He was only interested in the lamotrigine as a psych mood stabilizer (which, to be fair, it has also helped with that too).

I know he knows he's cutting me short because at the end of our first appointment he mentioned how he bet I didn't like being cut off repeatedly, but smugly not apologetically. He hasn't been openly smug like that again in following visits. I don't know if he was testing me or something, but it isn't really something you forget, especially when you put in as much effort, energy, and resources to get to the appointment as I did.

2. He doesn't offer me CRPS medications. To be fair, I tried a lot of medications before I made it to him and I am on several medications managed by other providers, but he has not offered to provide any or suggested any other options beyond the one I'm about to bring up. He also doesn't think I'm a good candidate for blocks or stimulators, so he won't provide those either, which---to be fair---I agree I am not a good candidate. His recommendations are trauma therapy (been in it for almost a decade), TMS (done it twice), and yoga and tai chi (I do gentle exercise).

I know he will prescribe medications to other people, because I have seen posters here talk about him giving them meds on their first visit. I know he's aware of memantine (an NMDA agonist being used off-label for pain conditions) because I've seen people here be prescribed it by him. He is aware ketamine was my most effective treatment, that the cognitive issues are what I consider the most limiting, and that I only stopped due to cost, but he has never brought up a medication before our last appointment and never memantine.

It's like as soon as he heard that I had to rely on dissociation as my primary pain management tool due to years of insufficient medical care, he decided CRPS wasn't the main issue; during the first visit based on his phrasing and demeanor, I thought he was going to revoke the CRPS diagnosis entirely, which he did not do.

At our most recent visit, he said he wanted to be careful how he worded things and he does think I have CRPS but that he doesn't think it is the main issue and that medical science doesn't have a term for what I'm experiencing. He wouldn't really expound on what he thought I am experiencing or take a clear position. He then meandered over to CFS/ME and talked about that for a while, but it sounded like he didn't think that was what I was "really" experiencing either; I left confused because there was a lot of implication under what he was saying about the "CRPS to fibromyalgia to CFS/ME nervous system spectrum," but he wouldn't actually say what he meant.

3. I recently stopped working with two providers and he responded very differently to learning about them. One was my electrophysiatry/dysautonomia team; the DO moved away and the PA cannot see me without oversight. There is no other local EP who can see me. This team filled six of my prescriptions and all of the critical ones except one; they were also my most respectful, most supportive, most "bio"-believing providers, and the best documenters. I did not choose to end this relationship, and the loss is devastating to me.

The other was my psych, who I terminated after finally reading the notes he wouldn't give me despite requesting several times. The notes were atrocious. The truthful parts were extremely sparse on details. He was frequently distorting what occurred by documenting only the lowest ranges I reported and not including medication we trialed or their side effects; they were often openly fraudulent, stating things didn't occur that did. I worked with him for three or four years and our appointments averaged seven minutes. He wasn't prescribing traditional psych meds, only two for insomnia and fatigue and I only regularly took the anti-histamine.

My PCP is taking over all these meds from both specialties, but he cannot change any of them. When I told my pain specialist, he was unconcerned about the EP team, but his head snapped up when I mentioned the psych and he emphatically said I needed to find another right away because I need a psychiatrist. I have a regular therapist who is way more helpful. I told him why I ended and that I would like it that documented that I contest those records now that I have seen them; he did not document that, though all of his records start with him expounding on my multiple mental health conditions.

I am very aware mental health impacts physical health; I adhere to the biopsychosocial model. But I do not believe my mental health is the root cause of these conditions, which seems to be what he is implying, though maybe I am reading into it too much, as he hasn't actually said that openly.

4. He suggested a medication for the first time: sodium oxybate, a heavy duty narcolepsy medication that requires a diagnosis to prescribe and generally isn't well tolerated by those with medication sensitivities. I am extremely medication sensitive; I couldn't handle the gabapentinoids, multiple antidepressants, trazodone, or prazosin for the sleep issues. I have had to stop many others for similar reasons.

It also doesn't sound like he is willing to prescribe it, but rather I should bring it up with my PCP, though he wasn't clear. He thinks my sleeping issues sound like narcolepsy, though I have had a negative sleep study, which he knows; granted, I wasn't a great candidate for that kind of testing.

I told him since I have already pursued this once and everything came back normal, if he wanted me to pursue it again, I would prefer that he sends a letter to tell my PCP that, rather than me having to bring it up. He did not send my PCP a letter. There is no mention in my chart notes of the sodium oxybate recommendation or anything under the consider with PCP section; there is a reference that he thinks my sleeping sounds like narcolepsy, but that's it.

I cannot even trial that medication without a diagnosis, but I think it likely I won't tolerate the meds and I cannot undo a diagnosis like that; sounds like a lot of risk that he doesn't intend to help me through.

Feedback: I don't know if I have been treated with hostility so frequently that I am seeing things that aren't there or if I have become so desensitized to mistreatment that I am giving him the benefit of the doubt when it is clear he doesn't deserve it. The loss of my EP hit hard and I don't know that I can rely on just this pain guy as my dysautonomia pain expert without the counterbalance of my supportive provider, but I don't have anywhere else to turn.

I mainly need him for longitudinal record-keeping and his CRPS-specific knowledge, which no other provider I have ever seen has claimed. I am willing to keep working with him if his records and reputation and social standing will benefit me, even if doing so leaves me off-kilter and confused. But if all of those factors are actually doing me harm, then it's better that I see no one than someone who will use their immense social status to undermine me in the legal record. And I am not sure which he is doing because he does not speak clearly to me and a lot of it is implications, which I'm not great at.

But he isn't willing to prescribe, doesn't reach out to my PCP even when specifically requested and explained why, doesn't record things or counteract things even when explicitly explained why I need such a thing, and doesn't let me fully speak, which sometimes seems to bring him some sort of satisfaction.

Or maybe I'm being too sensitive and need to appreciate any help that is being provided, regardless, and should keep seeing him in the long-term to allow the records to accumulate.

I'm just... tired. Am I overreacting for considering leaving this doctor even though there's no real alternative?

Does anyone else struggle with regulating your emotions? I was diagnosed with mental illness for years. Turned out the psychiatric medication’s were making things worse for me personally. I’ve been off medication now for 10 months and symptom free.

I’m not saying I haven’t had struggles. But nothing that would qualify for a diagnosis. Now that the CRPS has spread I find myself struggling so greatly. The signs of depression. But in some moments I’m okay. I’m able to pray and trust that God will use this for good. I know he will carry me through. And then others I’m begging him to heal me or take me. It can change in hours and completely relates to my pain levels.

I’m in therapy and plan to bring it up tmr. I’m just exhausted. I don’t want to go down this road again.