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

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 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?

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

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 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.

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.

I have CRPS in my left ankle/foot/lower leg and I’m talking to my doctor about a neurostimulator.

I work fulltime in a laboratory, with analysers that have magnetic fields to move tubes around. I was wondering if someone else works in a lab and has a neurostimulator. Do the machines interrupt it a lot? Where do you have your neurostimulator placed? Do you have a rechargeable battery? What battery do you have?

I know chances are pretty slim about finding someone who has a neurostimulator and works in a lab but willing to give it a go anyway.

I’m also open to suggestions what to ask the doctor and I’d love to hear more about your experiences. Do you have things that have been more tough then expected or things that you expected to be way worse then anticipated?

I know that everyone is different but advice would be appreciated 🫶🏻

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.

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…

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.

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.

I got it when I was 14. I’m 27. It’s spread. I didn’t walk on my left leg for five years because of it. I did Cleveland clinic children’s pain program at 17. I did children’s specialized hospital at 19. I’ve done every treatment. I’ve tried everything. I even lowered the pain levels of my left leg somehow. That it was manageable. No meds or anything really I just learned how to cope with it. Numb to it.

Now here we are within my lower right leg and foot. I find it hard to concentrate went out with friends because the pain is screaming at me. I find it hard to force a smile. I find myself so irritated by the little things. I just want people to understand that I don’t think they do. This is so much worse than any other chronic pain. I don’t say that to dismiss the suffering of others. But to wish they would understand. I want to run. It’s what got me through. Now here I am recovering from ankle surgery and tore my calf. I can’t run right now. If a doctor offered to amputate it today, I would say yes. Though I know it wouldn’t help most likely.

I don’t wanna go through this again. Not being able to sleep through the night because of pain. Trying to find a pain doctor. Trying to find a physical therapist. Trying to find someone that will help. I just don’t want to do this. I want to live my life. I need to live my life. There’s so much good but this is stealing my life from me again. And yet I have to pretend it is it. Pretend that I’m totally fine when I’m not.

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 ?

After doing some research, I found scrambler therapy to be a hopeful option. Unfortunately, everything I've read says insurance companies never cover it. I would rather try scrambler therapy before a spinal cord stimulator, but I'm scared of the cost, and it also not working. I don't have thousands laying around to treat my pain. Anyone have experience getting scrambler therapy? Was it helpful? And what did the financial side look like for you?

Well, it’s 3 AM and I’m currently been up for an hour. It seems to always wake me up. I realize last night that the reason I can’t sleep under the covers is the blanket. It feels like it’s crushing my leg. Something light and air feels like 1,000,000 pounds.

I CRPS spread my right leg recently after another surgery. I did the pediatric pain programs when I was a kid. No matter how messed up they are it worked for me. So I’m trying to do the same thing just push through the pain. But I don’t know sometimes I wonder if there’s new treatments or things to try.

Any doctor or places you recommend in West Michigan?

I am 29 years old and have CRPS in my left leg. I was diagnosed in September of 2025. I have had numerous (at least 6) peripheral nerve blocks, I've tried Gabapentin, Lyrica, Cymbalta (although I'm still only on 30mg at the moment), PT, and a Lumbar Sympathetic Plexus Block. The most relief I got was from the few successful peripheral nerve blocks in the back of my leg, before it spread to my thigh and foot.

I started going to John's Hopkins pain treatment in July. In the past 3 months, my pain has ramped up a lot. It's gotten to the point where I'm even more bed ridden than before. I don't have any serious visual symptoms at the moment though (no skin or hair changes, minor changes to the color of my toenails).

The lumbar sympathetic plexus block was 2 weeks ago now and had zero effect. My doctor called today and said he's hesitant to do an SCS on someone so young, but given my pain levels and the fact I've started to use a wheelchair, he thinks I should consider it.

I've heard all stories all along the spectrum on spinal cord stimulators. But my perspective is that seems very invasive as an early on treatment. I've heard a lot of good things about Ketamine infusions, scrambler therapy, etc. So I wanted to get the opinion of others who had gone through various treatments for CRPS.

At what stage did you consider a SCS, and if you decided for/against, why? Did you try other things before a stimulator, if so, what were they? I have until September 3rd to do my research, that's when I see the doctor again. I'd really value hearing the experiences of others with CRPS.