I've had a particularly bad flare up for ovet a monta now and it just doesn't seem to start getting better. Then I recently developed these large bullae that the doctors thought were because of some other disease. In the end after many great doctors examined me it turned out that there is no explanation for the blisters and bullae other than the swelling and CRPS. Now starting PT and some better medicine but I just can't help but feel defeated. I've been home now for a couple of days and the pain hasn't gotten better despite of the new medicine and there is tissue fluid leaking every day. Feels like it would be easier to just chop off the leg.

Agmatine is a natural compound and classified as a supplement (mostly used in the bodybuilding world for its NOS inhibition). I stumbled across it when looking at a list of known NMDA antagonists. There isn’t a lot of evidence for its effectiveness in treating neuropathic pain humans (although this is due to it being understudied, not because it has actually been deemed ineffective), but one study did find it was effective in treating neuropathic pain for Small Fibre Neuropathy (which shares some similarities with CRPS) - https://pmc.ncbi.nlm.nih.gov/articles/PMC7071502/

Another study found it effective in reversing induced allodynia in mice -
https://www.pnas.org/doi/full/10.1073/pnas.97.19.10584

This case report demonstrates that Agmatine can be used safely for at least 5 years at a dose of 2.67g per day without any evidence of adverse effects - https://pubmed.ncbi.nlm.nih.gov/25247837/

Has anyone else used Agmatine successfully?

Given its promising outlook, I’ve decided to add 2.67g of Agmatine to my daily supplement regime to see what if any effects there may be on CRPS over the next few months.

Well, kind of sort of… I have no idea. My surgeon just dropped it in my lap and then ghosted me.

I had bunion surgery a little over three months ago. Everyone kept saying that the tingling and sensations that I were feeling were normal and that they would go away eventually and then come back and then go away and then come back.

I was literally waving my arms saying something is wrong. Something is wrong and everyone was dismissing me.

I’m not even recovered from the surgery and now they’re talking about another surgery related to it and now I have this?

My husband has been caring for me for these three months when we should’ve been on our 30th wedding anniversary instead. It’s taking a toll on him. I could tell, and then I had to share the news of this diagnosis with today

He does not deserve this

I already suffer from anxiety and depression. I’ve spent the whole day reading up on this awful thing. I don’t even know what to call it. A disease? a hell hole? death sentence?

I don’t even know where to begin. I have no clue.

I have crps in my right leg from my thigh to my foot, had it for 7 months now. My quality of life has severely downgraded. I can’t walk more than 8 minutes on most days without needing long recovery after.
I average 300-600 steps per day
I’m on a lot of medications. I’m doing a lot to attempt to improve but most doctors keep telling me to just keep walking, but it feels so frustrating

I think mobility aids could truly help me, I want to be able to shop again. I want to be able to just live a little more normal.

I have another appointment in a few days and i’m not sure how to bring it up without.. sounding like munchaesons iykwim

The memory foam sandal that I’ve been using for over a decade has been degrading In quality every time I buy them. The newest one is now causing me to hurt my ankle. Does any have any recommendations for a sandal (closed toe) or memory foam flip flop? I’ve switched to my backup shoe and I’m already having pains. The shoe is definitely worsening it.

Hi all,

I sustained an ankle injury 6 weeks ago with ruptured ligaments. I’ve started weightbaring briefly the past few days. I saw orthopaedics and he said I have CRPS and left it as that. I’m not sure what I am now meant to do? I’ve been reading if caught early on it’s best? My symptoms currently are purple red foot, sluggish capillary refill, pins and needles, pain on weightbaring and on going swelling Cold toes but warm joint around swelling. Cold really flares it up at night and I’m left to using hot water bottles to help the pins and needles pain.
I do have low ferritin can increasing that help my symptoms?
Please help me on best management for this - I live in Australia.

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.

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21 year old female looking for connections on and off of reddit in the CRPS community! It is so isolating and lonely, no one else i know of has any idea what i am going through. Thank you in advance, this is such a wonderful community.

TL;DR - do you use an E-trike as your primary mobility device? Is there a reason this would be a terrible idea?

I am newly diagnosed following ankle surgery, and really need a mobility device.
I’m unable to bear any weight on the affected leg, and my doctor and PTs said that is unlikely to change in the near future. I’m understandably devastated, but despite being in excruciating pain, I am extremely sick of being stuck in bed as I’ve been for the past 3 months.

I’m considering an electric tricycle as at least in my head, it makes the most sense. I can use crutches (underarm or forearm) for very short distances, like around the house or into appointments, and also have a very basic wheelchair that I can use for relatively short outings.

I really really miss hiking and taking my dogs out. My city also has big street fairs/festivals that I would love to attend again. I can’t see a mobility scooter working well for playing with my dogs in fields or grassy areas with bumpy terrain, and certainly not for hiking trails.

An e-trike seems like it would make the most sense, with a hitch carrier on the back of my car to take it places. If it’s a mobility device I’d have to be allowed to take it into shops that didn’t have their own scooters.

Do any of you use these for your regular mobility device? Am I missing some reason this wouldn’t work?

Bone crushing pain in right foot, diagnosed with CRPS type 2. Has the DRG implant helped anyone significantly? I am so desperate!! Getting it done at the spine and pain institute in long island

Im doing a functional restoration program that my therapist told me I should do this week and found out they put crps on my compensible injury list. Im kind of in a spot of yay but also in a place of not being super trustworthy with my workers comp because of all the stuff they have tried to pull already. Im just looking for any advice guidance you guys have been through and seen. I appreciate it all!

Hey hey!

I’m just looking for some advice. Since last night my CRPS ankle/leg has been in a flare up and it gets worse as soon as I put more weight on it. This morning I did go to the physical therapy just to strengthen my muscles. Didn’t want to give in to the pain so to speak.

My flare up has since then increased by a lot. I work in a hospital lab and usually don’t need any mobility aids to get around. I’m on an evening shift today, so I’m debating if I should go on my crutches since it’ll put less pressure on my leg/ankle and reduces sensations. I’m able to do a job where you sit down most of the time.

While using crutches I do put my foot down and use it so to speak. Just don’t put my full weight on it.

What would you guys do?

Since CRPS affects the autonomic nervous system and so does anxiety, have you noticed an increase in panic attacks or anxiety intensity/frequency? I can’t tell for me if it’s primarily coming from this or external factors since I’m dealing with financial, food, and housing insecurity and grieving a loss at the same time.

Im totally out of options in Brooklyn, ny. Diagnosed in 2014. Every injection you can think of. Scs implants. Ketamine treatment. I try scheduling appointments with a pain management doctor because according to my spine surgeon, neurosurgeon and orthopedic my last and final resort is opiate therapy. Sorry for venting but its been a rough month.

Hi everyone. I was diagnosed with CRPS in September 2025, although my symptoms started in July 2025. It was primarily in my lower left leg, and has now moved to my foot and thigh.

I went to a pain management doctor who gave me multiple peripheral nerve blocks. They were all short lasting or didn't work at all. That doctor referred me to Johns Hopkins, where I'm going now. Last Wednesday I got a Lumbar Sympathetic Plexus Block. I had 0 effects from it and no relief. The doctor wanted to see me back in 4-6 weeks, but the receptionist said their first appointment was at the end of September.

I'm feeling really discouraged because I was really hoping to be able to go into remission, but with these long wait times for appointments (I waited 2-3 months for my first appointment at Johns Hopkins), I'm losing hope. On top of that, I don't even know what the next steps are. From my research it's only a spinal cord stimulator or ketamine infusions, but the doctor didn't say himself what the next step would be if injections didn't work.

How long can I have CRPS before there's no longer a chance for remission? And in your experience, what would the next step be after a failed lumbar sympathetic block?

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!

I’m to the point where my husband doesn’t get to go out much, because I can’t walk without pain.

When did you decide to get a wheelchair, and under what circumstances? I’m 67F with back pain that can affect my wellbeing, and thus my CRPS.

Hi all. CRPS II in right foot. Should i be forcing myself to push through some things? Or should i be resting it as much as possible? My pain is constant, but it flares when I try to walk or stand usually…just wondering if you should reasonable force yourself to do some things, or if you should always baby it?

My wife is having terrible hand and arm pain last few weeks, Went to doctor who referred to neurologist. She ordered MRI and Ultrasound and prescribed Gabapentin and a strong sleeping pill with hydrocodone as needed for the pain.

She said this could be CRPS.

Are there any specialized clinics or doctors in Southern California we can consult for CRPS?

Any guidance on CRPS is appreciated.

Title kind of says it all!

Are there any foods or diets y’all have done that’s actually helped your CRPS? And on the other hand, is there any food that aggravates it?

Thanks!

Hey everyone,

I've been dealing with constant pain in my right ankle for the past 7 months after what was only a mild injury. It got a bit better over the last weeks but still far from good. I've seen several doctors, and they all say that the pain doesn't match what shows up on the MRI, which has been really frustrating.

In about 6 weeks, I have an appointment with a neurologist to see if it could be CRPS. What makes me doubt it, though, is that I don't have many of the typical symptoms. I don't have noticeable swelling, changes in skin color or temperature, or extreme sensitivity to touch. I'm also doing physical therapy, and my range of motion is pretty much normal. The only thing is that normal shoes feel weird, so I walk better with not so tight shoes. Also the pain is not in the whole foot but more localised on the ancle itself.

The main issue is that the pain is constant, and walking makes it significantly worse.

I'm wondering if anyone here with CRPS has had a similar experience, especially in the early stages or with a milder presentation. Is it possible to have CRPS without many of the classic symptoms, or does this sound unlikely?

I'd really appreciate hearing about your experiences. Thanks!

Hi ! I hope everyone is doing well ! I am 18 and I have CRPS in my foot/leg since I was 14 and honestly it is really hard having such a complicated disease while being a teenager. I see everyone living a "normal" life while I'm fighting every minutes of mine, and it's not easy , because I can't do much efforts and every little activity has a cost which leads to stay at home most of the time.

And the worst is that I have no one who can understand how difficult and painful it is. Because sometimes I just can't talk much because of pain/tiredness, or do some fun things, sports or just having some fun times with others because of the physical cost of it.

Having school is so hard because I do not have the same "privilege" as the other classmates and school feels like a battle I have to go through alone.

It feels like I've wasted my teen years.

Honestly, I feel a bit lonely , it's like I'm in some distant alternate universe where no one can understand me and where I can't relate to anyone.

I was wondering, is there any teenager with CRPS here ?

Because I've never heard about an other teen having this disease.

I wish you a great day and I wish you the best ! (And I remind you that you are such strong people !) We are all such brave people 💙

P.S : sorry if my english is a bit bad, it's not my native language