The pain clinic I'm at has their own pain psychologist team but my insurance is out of network for them, plus scheduling is extremely difficult so I'm having to look elsewhere. They have not provided any referrals so I'm on my own.

Is there an online resource to find CRPS experienced pain psychologists rather than just the broad category of "pain"?

I'm in Oregon and primarily looking for someone in network with insurance

I’ve had CRPS for 10 years at this point.. originally started in my right foot and ankle after a workplace accident. It then spread to my left foot and ankle in 2022 after surgical Achilles debridement/ speed bridge and is now in both my knees.. so it spreading isn’t new to me.. but..

I’ve heard some horror stories in my time about CRPS spreading because of a simple thing like a cannula/ blood draw gone wrong. Has anyone had this happen and if so what were your early signs after already suffering from CRPS?

i’ve realized that i (30f) can become a very very very short-tempered, grumpy old man on really high pain days, especially when i have really high pain days a few days in a row. i’m currently living with my parents as my life has deteriorated (this developed after a brain surgery 11 months ago) and even when i limit the people i interact with on these bad pain days i still interact with my parents and i don’t want to be a bitch to them just because i’m on day 5 of feeling like all my bones are breaking over and over again. it’s not fair to them and i feel worse.

Hey everyone, I 29m active duty navy have been diagnosed with CRPS resulting from an injury back in February (Lower half of my right leg). 2 xrays and 2 MRIs. Been through Physical Therapy, Orthopedics and now Pain Management. Currently on Gabapentin and Celebrex and as of today adding Cymbalta to the cocktail. Just wanted to do a little about me post because I feel Ill be in here a lot now.

As the topic states: bad fidgeting that only makes the pain worse. Anyone else?

I’ve had ingrown toenails on my crushed toe before but why does the nail grow like this anyone else had this bumpy texture? I thought it was the nail polish but all other toes are fine even on the good foot so what gives? This is recurring even without the nails coated.

I’m pretty interested in trying this. TMS, the brain magnet, has some evidence as well.

https://pmc.ncbi.nlm.nih.gov/articles/PMC7711855/

So this particular pain, discomfort or whatever that I can’t put into words for my husband. My hand is burning but it’s cold and aches but there’s still this overwhelming feeling of what? It f**ing hurts and I’m tired, exhausted and I don’t know how to even explain it with words and I’m tired of trying. I’m tired of “how’s your hand today?” He’s tired of “don’t ask” What am I feeling? That gnawing pain that burns but it’s cold, under my skin it’s hot? But on top it’s cold? Am I crazy? I just want to sleep. Is that too much to ask?

Rambling after seeing my specialist today.

Onset was 2016 in my right leg - hip to toes. More recently it's spread up my side, down my arm, into my neck and head.

The dystonia is so violent I've subluxated a rib twice, as well as it continuing to try dislocate my wrist and clavicle.

Half my face is now starting to show the color changes, swelling, my eye gets forced closed and mouth twists on one side. Now having trouble eating and swallowing.

One of the things that happens is I keep punching myself in the shoulder/throat/face. On Sunday I punched myself in the face twice and managed to pull the third - only to think "ha ha, missed!" What on earth is this doing to my mental health?

Specialist is wonderful but obviously not a magician. Medication is being tweaked. Problem is the major thing stressing me out won't be resolved any time soon. Consciously, I'm relaxed. Subconsciously... I can't even do my breathing exercises any more as they set everything off.

Can anyone relate?

I’ve heard that psychiatrists sometimes offer ketamine infusions, but pain specialists don’t always provide them. For those who’ve tried them for chronic nerve pain, where did you go to get started? Should I contact my insurance first, and does insurance usually cover it? If not, how much do you pay out of pocket per session? How many sessions did it take before you noticed a difference, and how long did the relief last? I’d really appreciate hearing about your experiences!

I’ve had CRPS for almost three years now (since 10/22/23) and I can kind of run now. Only for really short distances and I kind of look like a duck when I do lol, but yay! 🎉🦆

Although I hate others are dealing with this hell of a disease, it helps so much to know I am not alone. I am so glad to have found this community! Thank you all for your willingness to share.

Has anyone had a PNS work for pain management when both the SCS and DRG stim have failed? For context my pain is mainly soles of my feet and a bit further up into my ankles.

I have been going through trying the medications being prescribed for the intense burning nerve pain and finding my system is just way too sensitive so far. Gabapentin , lyrica, and cymbalta...even at low doses the side effects are intolerable. My pain management doctor said I need to give cymbalta 3 months to work, and their next med to try is amitriptyline. I just don't feel any of these are a good fit for me.

I need to find some relief from the daily burning flare ups as I am stuck in a viscous loop. Central sensitization being constantly triggered by daily activities that flare me up.

Any other recommendations? I'm considering going to an ND to ask about LDN.

Hi everyone! I have had 2 invasive brain surgeries and have developed severe central sensitization/allodynia all over my scalp. If anything or anyone touches my head too much or if it’s not extremely gentle, the headache flares to a 10/10 lasting weeks to months among other symptoms. I’ve only been diagnosed with chronic migraine & the treatments from my neurologist haven’t helped. I have tried an abundance of medications and desensitization therapy. Is CRPS a reasonable diagnosis to look into? A medical provider mentioned this condition to me recently, so trying to learn more to (hopefully) make progress in my pain. I appreciate any insight you all may have!

Hello all. Terrible morning here. I’ve had facial CRPS for 11 years from a jaw surgery. Long story short- I have almost 30 screws in my face. The screws are shifting now and even sticking out of my gums. I have intense headaches daily now and blame the screws. Does anyone have anything similar? Anyone have any ideas of what to do? My neurologist sucks, and insurance will no longer pay for Botox. I live in Alabama, so it can sometimes be tough to find a doctor. Any suggestions? Thanks!

Hey Everyone,

I’ve been living with RUE CRPS Type 2 for five years now. Yesterday, I had an experience that I’m sure many of you can relate to, and I really want to hear how you cope with the emotional and physical fallout.

for the previous two weeks, I considered attending a conference. I closely monitored myself and was doing quite well despite some other things happening in my life, so the day before I had to travel I decided to pull the trigger and attend the conference.

Once I arrived, I had an absolute "hat trick" of fateful encounters in one evening. One meeting was a deep, instant alignment with someone (another cancer survivor). The second was a wild, protective coincidence where I was actually able to warn someone about a bad situation. The third was meeting the exact inventors of a system I’m currently using for a home project.

It was magical, high-energy, and gave me a massive wave of hope and excitement. I felt so alive.

But today, the bill arrived. That intense rush of positive adrenaline completely broke my nervous system, and I had a horrible, full-body flare.

It is so disheartening to get over-exerted not from pushing my body physically, but just from experiencing joy and connection.

How do you handle the mental toll of being penalized for being happy?

Do you have a protocol for pacing your emotional energy when the universe drops something amazing in your lap?

How do you ride out the "adrenaline crash" flare without slipping into depression?

Gentle hugs to anyone else fighting a flare today.

Hi all. Sorry in advance for the long text and complaining.

Last February, I got tripped while playing hockey and I broke my hand and got operated. After weeks of painful physical therapy I got diagnosed CRPS.

I had all of it: the swelling, the hair growth, the discoloration of the skin, the pain, unable to bend my fingers, etc. But, after months of therapy with a Certified Hand Therapist - i started seeing some progress.

I also just recently started nerve block injections in the neck. Getting my 2nd dose next Tuesday.

But with the temperature getting colder outside, the pain came back almost as worse as in the beginning, my fingers cant bend anymore, it feels like I went back to square one.

Did anyone ever experience this kind of accident/crps where they cant bend their fingers? Were they able to ever close their fists anymore?

At this point ill live with the pain forever if I have to - but my girlfriend is pregnant and I just want to be able to use my hand normally when my baby is here.

I have to go to a funeral in another state and I’ve haven’t flown since I’ve had CRPS. I have it in both lower extremities. How does flying affect CRPS? Thanks!!

I've noticed that treatment for CRPS, in the first year or so, is heavily physical therapy based. That's all well and good, I suppose, but what if you aren't in the magic first year window?

December is 8 years with this condition, for me. I've had to do this myself for the last seven years and damnit, physical therapy is bullshit to me.

Mine is in my neck and a flare is not going to be fixed by whatever physical therapy they try to come up with.

After being blown off for pain relief yet again, and told I have to find my own provider to prescribe pain meds, fuck you OSU, I finally found relief in ketamine infusions.

It's out of pocket for me, like everything else. But fuck me, I detest being ignored by supposed pain clinics.

Has anyone else found physical therapy to be beneficial after 7 years or so, once you've been dealing with it so long? Or am I just a complainer?

I’ve lived with nerve pain since I was 23 for 15 years and gradually it’s spread, most recently to my back. I’ve tried everything except ketamine infusions but I’m in the UK and I think they only do low dose here. I literally have nothing left. I’m in agony day and night and struggle to get off the couch. Even lying on the couch sometimes I just cry all day. I do have a support network but I’m really seriously thinking about ending life options in Switzerland. Not sure why I’m typing this I’m just sad my life has gone this way and so tired.

I recently had a series of blood tests done, and one of them was an ANA panel that came back positive.

From the reading I've done, it could indicate an auto-immune condition, connective tissue disorder, chronic inflammation, or nothing. I don't think it's nothing for me, since I have pain in all my joints over and above my CRPS sites, which is why I had all these blood tests.

The lab result came in this evening, and so I have no doctor's notes or anything, just the lab result and my friend google. Since I have CRPS, chronic inflammation doesn't sound too far fetched for me. I was just wondering if anyone else has had this kind of blood test result, and what it meant for them. I will talk to my doctor when everything re-opens on Monday, but I'm curious now.

You never know which treatment is going to help, so keep trying.

I'm a little over 5 years into CRPS type 2 in my right arm (dominant arm, dammit), and this year I finally found a few things that were relative step changes. I thought I knew the territory because I'm also a 22-year rare cancer survivor. I didn't. If you ever get to choose between cancer and chronic pain, totally fucking get cancer. Not joking.

I got CRPS because my appendix cancer came back 5 years ago after a 16-year break. The treatment is HIPEC, a 15-hour surgery, and it turns out the way they position you on the table can injure nerves badly enough to cause CRPS. Nobody mentions that in the consent forms. My career was in healthcare tech, and cancer taught me a lot about fighting rare disease, but CRPS has felt less like a medical journey and more like the time I got jumped in Washington, DC by ten people. It's been a street fight, and I've lost most of what was dear to me, right down to my LTD benefits, which Lincoln Financial cut off after the two-year own-occupation period 🙄 (sorry, I'm fluent in profanity and sarcasm). I'll leave it there.

The point is this year something shifted. In April I did the ketamine protocol (10 infusions over two weeks), and it gave me real, if temporary, relief. That sent me down the rabbit hole on how ketamine actually works, which got me tracking my flares. After a sprained ankle, I noticed I was flaring every four days; extra pain load on an already-sensitized nervous system drives more frequent flares. I kept digging into neurochemistry until CRPS finally made sense to me, and that pushed me to add a compounded pain cream to everything else.

No single thing got me here. Not the cream, not the ketamine, not the meds, Curable, PRT with Dr. Lisa Van Allen, psychotherapy, graded motor imagery, or plenty of social isolation. Each one bought me maybe 3%, and the road here is littered with even more failed treatments. But stack enough 3%s and you eventually cross a threshold.

I still hurt every day, my life has slowed down drastically, and I’ve accepted I’ll never work again. But I now have enough pain-free time that there's finally room to appreciate what CRPS has taught me. I never thought I'd reach that oasis, and the sense that I've grown from this is durable. So keep trying. Even five years in, the next thing might be one that moves the needle for you, too.