r/CRPS

I have it in my right wrist,hand and elbow. But I think I’m in remission since it doesn’t hurt as bad as it did in the beginning.

I have been experiencing sharp horrible burning pain in my right ear, and jaw and my face feel’s fuzzy or tingling?? I’m also super dizzy when standing and looking up.

I’ve had a cat scan, and an mri on my brain (all clear) and I currently have a cardiac holter monitor, to rule out any heart problems. The drs also ruled out ear infection, vertigo and MS.

My pain dr doesn’t think the dizziness and face pain is from my crps. I think it is.

I hope this makes sense, I’ve taken a few thc gummy’s for pain, and it’s not helping with the pain(but I am a little stoned)

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I have had CRPS in my left foot for 23 years. I was recently diagnosed with an insufficiency fracture in this foot and the medical team is concerned about bone loss in my foot.

I do not currently have a CRPS specialist nor am I receiving any treatment - I have not been able to successfully tolerate any anticonvulsants or tricyclics and I have had very negative reactions to steroids and nerve blocks. (I am not a candidate for SCS or other implants).

I assume other have experience with this since persistent CRPS is known to affect bone. Is there treatment? Is there a particular kind of specialist I should seek?

In early may i was hospitalized for a suicide attempt. Upon regaining consciousness I have been experiencing a worsening pain in my right foot that has lead to me being mostly bed bound / on crutches the past week or so. Ortho yesterday was very certain it was crps, pain management specialist today agreed. It’s speculated that the preceding incident that caused my CRPS had something to do with the attempt because I had no physical injury otherwise.

Luckily it was caught early on and I will (hopefully) have access to adequate treatment, I kinda feel like I was just given the death sentence. Obviously my mental health was pretty horrid before given the attempt and all, this has been the case as long as I can remember, but alongside debilitating nerve pain??? It’s almost funny how swamped I am in the health department. I just don’t know what to do. I’ll do the treatments and I’ll take my meds but what was already a miserable existence is now accompanied by debilitating pain + living with my mom. Cool cool. This is awesome. In the grand scheme of it all I am so young and this feels like a sawed off shotgun shell cascading through whatever i thought my life would look like going forward. People my age are in school, partying, planning futures and so was I a few weeks ago.

There cannot be a loving god who has allowed me to hold myself together for the sake of my loved ones all these years only to with one of the most painful neurological diseases known to the medical community. (or so I’ve read) And I have only been experiencing this condition for a short period of time. I have so much respect for all of you who have suffered decades. I have no intent to commit suicide, I am just wanting to vent because it feels as though my life is over. Feel free to ask clarifying questions i dont feel like reading this back I just want it to be thrown out into the ether and for all to be well. I dont want to be miserable anymore

Hello everyone,

I hope you’re having a great day ☀️🤍

I’m sorry for the long post…

I recently underwent a 7-day ketamine infusion for CRPS in Switzerland and received a total dose of approximately 3 g.

I am a 28 year old woman, 169 cm (5’6”) tall and weigh 63 kg (139 lbs).

I have Type 1 CRPS affecting both upper limbs, from my fingers up to my shoulders/scapulae, following a ski accident. It initially started as what was thought to be a skier’s thumb tendinitis in both thumbs. Unfortunately, it never healed properly. Over time, the pain spread from my thumb to my hand, then my forearm, and eventually both entire arms.

Because my forearms would become extremely tight, rigid, and painful with activity, my doctors initially suspected chronic exertional compartment syndrome. I underwent MRI scans both at rest and after intentionally triggering a flare-up, and the findings appeared consistent with that diagnosis. Based on these results, I underwent a complete fasciotomy of my left forearm and thumb. Unfortunately, the surgery did not improve my symptoms, and after extensive testing and exclusion of other conditions, I was eventually diagnosed with CRPS.

My ketamine treatment was based on the protocol from the Sigtermans study, although my infusion lasted 7 days rather than 4.2 days. During the last two days, the dose was increased to approximately 0.5 mg/kg/h. The total cumulative dose was about ~ 3g.

The results were remarkable:

• Before ketamine:

* Resting pain: 3–4/10
* Physical activity: 5–8/10

• During the first 2 months after treatment:

* Resting pain: 1–2/10
* Physical activity: 4–5/10 maximum

For almost two months, I had very little pain at rest, tolerated activity much better, and generally felt like I had regained part of my life.

However, now that I am entering the third month, I can feel the pain, stiffness, and sensitivity gradually returning. One month after the infusion, I also received three booster infusions of 100 mg (one per week), but I did not notice a significant benefit from them.

Since I live in Switzerland, ketamine protocols are often quite different from those used in the United States. I would therefore be especially interested to hear both from people treated in Europe and from those treated in the US, so I can better compare protocols and outcomes.

For those who have undergone long-term ketamine treatment for CRPS:

• How often do you receive infusions ?
• What maintenance protocol or cumulative dose works best for you ?
• How long do the benefits typically last ?
• Have you found that repeating longer infusions helps maintain the effect over time ?

For reference, my current treatments include pregabalin 300 mg, amitriptyline 50 mg, memantine 40 mg, diazepam 25 mg, daridorexant 50mg, and medical cannabis (THC/CBD). I recently stopped fentanyl patches. I also tried multiple short ketamine infusion (12), it helped but it was not phenomenal.

Despite these treatments, long term ketamine treatment has been by far the most effective intervention I have tried so far.

Thank you for sharing your experiences and advice 🤍

Hey everybody! I have CRPS in my right foot for a year now which requires me to walk with a cane outside of my house. I'm looking for any shoe recommendations- going through winter and having to stuff my foot into a fur lined Ugg boot was NOT a great time but I managed. I've been living in my Asics (I loosen the right shoe and have orthotics) and Crocs when the weather calls for it but I'm looking for other options, specifically sneakers. I've tried slides and while they're not horrible, the nerve pain becomes too much around my toes so I end up dragging my foot. Any recommendations would be great!

I thought this could be a helpful thread. If you've achieved remission, even partial or a month of relief, please share what did it for you and for how long.

I wanna go to the beach.

I have CRPS, and I walk using a cane.
I was wondering if anyone has any experience with going to the beach with a cane. i know the sand has to make it difficult but can i use my cane on the sand or is that insanely unrealistic?

I love the beach. I spent 2-3 days a week there in the summer before my illness kicked up this bad.

All i want is to go to the beach with my partner. I’m really lucky that even if it doesn’t work, my partner would carry me, but I want to be able to do it on my own.

This is both practical and a mildly emotional post. I really miss the beach, it’s one of few places that relaxes me instantly. I’d go sometimes at night to relax, during the day to tan and swim. I miss it

Any help or advice is appreciated

I'm in the mid Atlantic eastern US and while I'm not entirely sold on my diagnosis, I'm moving forward with nerve blocks and what not. So far the only thing that's had an effect on my pain is the nerve study, which has left me in a lot more pain, going on 6 days

Id like to find an expert on this condition, ideally other neuropathy as well, within a few hours drive, but I'm willing to go farther if necessary .

Anyone have suggestions for someone in NC, SC, VA, East TN or beyond if necessary?

I (25 M) have had CRPS for 4 years after I fell through a grate at work. I have tried what I feel is everything and have reached MMI due to workers comp. I have tried Ketamine infusions(Didn’t work at all,) Physical Therapy, Nerve Blocks, Spinal Cord Stimulator (the trial worked great but the permanent didn’t work at all.) What else is there to try? I live in Virginia.

I am unsure about how I will react to this medication, but it's scary with my history of alcohol abuse, withdrawals, and self harm.. I don't want mania and I don't want to hurt myself. Love you

hi all! wondering what had been more successful for people with very peripheral, focal, and persistent chronic foot pain.

i experience a crushing sensation in my right foot, like my bone is made of rock. Diagnosed with CRPS Type 2, and my pain is getting worse and worse everyday. i can’t walk on it i am getting mixed information on which one is better for my condition. i’m worried because i’m already on track for the trial SCS surgery, and it seems (?) like DRG surgeons are much more rare.

i am so so scared. any advice or experiences using either device would be so helpful!! 🫶🏻🫶🏻

(Kind of a vent plus questions, my questions are marked at the end if anyone wants to skip the rest, but I appreciate anyone who reads the full post. Thanks!)

My TLDR is I was diagnosed after an injury in my right foot 10 years ago. The worst of it went away after a year or so, and I tried to ignore my CRPS for many years -- I feel blessed that I could ignore it for so long, but I've come to realize that wasn't healthy coping at all. For a while it was kind of like I "didn't have it at all". Because, to me, CRPS meant... burning pain. Inability to walk. Glossy skin. And those things went away. So for maybe 7 years I ignored my CRPS and didn't attribute anything in my life to it.

Recently, in the past 2-3 years as I've tried to ignore my CRPS less, I've randomly had little eureka moments. Like wait, that probably isn't normal, is that actually because of my CRPS? Allodynia on my arms, legs, back, chest. My foot is often stiff when I stand after sitting for a long time. Sometimes that dull pain returns. It's been refreshing to not just shrug away moments of pain as "mysteries I should ignore" (bad habit of mine, in all areas of my life) and actually try to think about the source, and land on an answer. I haven't been back to a doctor specifically to speak about CRPS since I was first diagnosed (for reasons I don't want to get into, but I do want to start seeing a doctor again when I'm able), so I'm not actually sure if those symptoms above are due to my CRPS or not, but they seem pretty standard. Basically I've started to look at a lot of health issues through a CRPS lens when I hit a dead end, and it's been helping my stress a lot.

Anyways, the main reason for this post is for the past few months or so my lower arms have been kind of... reddish. It's hard to describe, it's not so red it's "RED", but there's a bit of soft blotchiness that isn't present on other parts of my body. I've always been a person that turns into a tomato when I get even a little warm, and I've moved to a country known for its insane humidity, so I kind of passed it off as "heat-related issues" and didn't think much. But the more I've been staring at my arms (fun pastime) I'm kind of like "huh, that's pretty reddish." It's not even purely when I feel warm, it's kind of *most of the time*.

The worst part is they've been pretty itchy lately too. It's not soo bad, but generally my lower arms always feel like they need a good scratch. Very fun when combined with allodynia -- "touch me, but also don't you dare!" I can ignore it most of the time but it's getting to a point. I had bad eczema when I was a kid, but it never manifested like this. I try to use lotion but it doesn't help. This isn't flaky or "dry", it's just... kind of blotchy and itchy. Like a heat rash, I guess, but not as intense and not bumpy at all. I'm trying some methods to help relieve the redness and itchiness, but I'm still clueless on the source.

So recently I had another eureka moment. Is this also related to my CRPS, or am I falling into a bad habit of overgeneralizing any health issue I have and attributing it all to CRPS?

My questions:

First, has anyone else had these symptoms (blotchy/itchy skin)?
I know skin changes are like symptom number one, but I don't know, the itchiness and it being so far from my foot (the "origin site") is making me think it might be something else. It feels like too wide of an area to be "phantom itch", and would a "phantom itch" come with blotchy skin too? But I don't get "the rules" with this stuff, so perhaps.
I know nobody can actually give me a solid answer, but I'd love to hear if anyone has had this experience so I can know if it's even a possibility for it to be due to CRPS, and then I can jump off from there.

Second, how do you discern what's CRPS and what's "something else"?

I'm kind of a hypochondriac and it's weird what my brain will sort into "must be CRPS, nothing I can do, bliss..." and "must be something HORRIBLE, panic...!" categories, without my input (=_=)...
How do you guys deal with knowing if you need to investigate something further, or if it's just another CRPS symptom? I feel like so many people on here speak with such confidence that something is "due to their CRPS". I'm envious of that confidence -- maybe it's just due to my inexperience in investigating and listening to my own body, or because I haven't returned to a doctor about it, but I feel like I never truly know.
Do I just have to decide it is CRPS and go from there? But then I feel like I might be ignoring something important. Cue the stress spiral.

I feel like my health is an eternal guessing game and I'm always the fool in the end. It's either "you should have checked that out sooner, wtf" or "why are you worrying so much, it's nothing". So here's my latest query, my itchy arms.
I feel like the obvious answer is "go to a doctor" and I agree, but I'm also asking on a day to day basis, how do you deal with something as mysterious as CRPS?

Thanks for reading. I'm always a bit too long-winded on these posts, but I appreciate anyone with any insight! :)

Being in the UAE, it is next to impossible to find a specialist in CRPS, like what you see in the States. After seeing two other pain management doctors I was referred by my surgeon (I developed CRPS post knee surgery for a hypermobile lateral meniscus) to a pain management doctor who is a consultant anaesthesiologist. While not a specialist in CRPS explicitly, at least he does know about it somewhat, and he is willing to test treatments that have shown efficacy. Unfortunately it seems that everything is an uphill battle with health insurance and even the hospital sometimes, which is mentally taxing when coming from the UK public healthcare system.

Fortunately my doctor was understanding of my pain and prescribed OxyContin which helped. Now I know that many of us have been on opioids and while I believe they do help with the pain in the short term, in the long term I believe they only make the situation worse. The problem with opioids is they activate glial cells, which further inflame the nerves and leads to the well known opioid hyperalgesia - adding this to the hyperalgesia caused by CRPS it appears to be a recipe for disaster (or pain).

Enter Low Dose Naltrexone (LDN). As a lot of you may already know LDN has shown promise for treatment of nerve pain, and specifically within CRPS. Think of it as the anti-opioid medication, which instead of being an opioid receptor agonist like OxyContin (and other opiates), it is actually an antagonist, which blocks the opioid receptor from receiving any other substance that might activate it. This leads to the small amounts of natural opiates being available in the body that provide their own pain relief. It also deactivates the glial cells lowering nerve inflammation (due to its NMDA antagonist properties). So it seems like we get the best of both worlds in that regard.

The only issue is, I now have to wean myself completely from the opioid medications in order to use LDN, otherwise it could cause severe opioid withdrawals.

Now, my insurance does not want to pay for me to have the ‘experimental’ ketamine infusions by pain doctor has been requesting, so I will likely have to pay for this out of pocket (and I’m waiting for a quote on this to see if it is affordable), as the doctor seems to think it won’t cost much more than £100-200 per session.

I am certainly looking forward to starting my LDN next week after I’ve weaned off OxyContin with the help of a psychiatrist who will provide medications to help. From my research it seems that LDN can attenuate the anti-depressant benefits of ketamine and I’ll need to do further research to see if there is any evidence it can help with the benefits for chronic pain but I may err on the side of caution and not take any LDN during and shortly after the ketamine infusion period.

For those of you that have been on or are still on LDN, how has it helped you with your CRPS?

Hopefully this wasn’t too long or uninteresting, and if you made it this far - thanks for reading!

I will be back in a few weeks to provide my anecdotal experience with both LDN and Ketamine for those who are interested.

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 wanna donate some plasma to get some money for rent, but I'm not sure if people with CRPS can.

My question is: CRPS survivors, are we even allowed to donate plasma/if you did donate plasma, what was your CRPS reaction to it afterwards?

I think I am worried about spreading and also when I come across a doc that doesn't understand CRPS, I find myself having difficulty explaining it myself.
So when it comes to the dentist do you do anything specific before getting dental work done or have it done? Just meaning like do you check in with your pain management doc for anything? I kinda feel silly but at the same time I want to ensure I protect myself if that makes sense?

My new dentist ( old one retired and I'm pretty good with hygiene so I haven't had to go in for like 3 years ) new guy said he saw a few cavities and one tooth possibly need to get a root canal'd or extracted. I didn't like the "possibly" part I just wasn't sure if there's anyone in the same boat?

I went through the files. I felt like I should have done so before hand! Because I should have brought in the one dental provider sheet but I also feel like he may be like why didn't you bring this up before? But honestly i just nervous about having any dental work done in general. I have decent hygiene because I HATE the dentist lol

Anyone found a trick to help them? Ugh they hurt so much. Thank you!!

Where are the specialists located that are extremely familiar with CRPS? Or the ones that specialize in only CRPS? We live in South Carolina

Our situation: My husband has been dealing with severe CRPS of the entire left side of his body for four years. Almost all progress that has been made with his care is because I have experience in the medical field (I am a nurse practitioner). I have spent too many hours to count studying what goes into this and fought with tooth and nail to advocate for him. I AM TIRED. I am so tired of trying to get someone to take his condition seriously. Pain management doctors are just shrugging their shoulders and sending him on his way. They "know" about his condition, probably from a few paragraphs in a textbook in med school. I get that this is not very common, but if you have a patient coming in and you are not overtly familiar with the conditions you need to either research it or help find a specialist who can!!

I apparently meet enough of the Budapest criteria to be diagnosed, and my symptoms make sense, however I'm still on the fence as my case is a bit atypical (I had no acute injury, only overuse from exercise that lead to BME, almost completely symmetrical in but feet/ankles).

I had a nerve conduction study yesterday, and my pain has increased a ton. I understand this is pretty common after the test, for people with CRPS. My searching indicates someone with a healthy nervous system would not have this reaction.

It seems to me this points to at least some kind of neuropathy. Looking for others opinions.

Thanks in advance.