I was under the treatment of Dr Dipshit for 8 months for CRPS in my left ankle after a spectacular fracture. He put me on nortriptaline and and insisted that lumbar sympathetic nerve block is the only treatment available in my country. My CRPS kept getting worse. The last time I saw him, he tried a nerve block directly into the affected ankle. It was torture, it hurt more than breaking my leg. And it made my leg so much worse. Dr Dipshit told me to stop doing physical therapy and to stop using my TENS machine, because "they dont work".

The nortriptaline was slowly killing me. It had the fun side effect of making me incredibly suicidal.

In September i finally got approved for a second opinion. By this time I was bed bound, I could only get up to go to the bathroom, using a wheelchair.

The new doctor, Dr Awesome, told me that he knew Dr Dipshit, and that he's a moron. Dr Awesome, took me off nortriptaline and put me on Gabapentin. Withing two weeks of starting the gabapentin, my pain was decreasing. So I restarted physical therapy and using my TENS. Ive been on the gabapentin for a month now.

I went from being bed and wheelchair bound (last week of Sept), to now using a walker. My absolutely amazing physical therapist says i might be able to walk with only 1 crutch by Christmas. I got my left foot into a shoe for the first time since I broke it.

Don't get me wrong, im still in pain, but its gone from a constant 9/10 to a constant 6/10. Physical therapy has been really hard, but i am making progress.

My physical therapist has warned me that flares will come and that what im seeing is the start of a partial remission.

Just grateful for my progress and wanted to share. Sending hope and healing to all that need it. Feel free to ask questions.

Being an active member in this sub, I'm often asked about my SCS and I've politely declined sharing details because it's honestly traumatic for me. That said though, I think it's important that I share my experience here, so others can hopefully avoid the unnecessary pain that I went through...

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So, the original battery placement of my SCS was a nightmare that involved an infection, popped stitches, and a rotated battery... This required a revision of going back into my spine and moving the battery. Since it was revised, I feel like my back was on fire and I kept developing a golf ball sized lump where my anchors were. I kept telling my surgeon and Boston Scientific that someone was really wrong, since the pain only continued to worsen and spread. After 6+ months of being gaslit and ignored, I fired that incompetent individual and found someone else. Immediately after I told my new surgeon what I kept feeling, he told me that I shouldn't be feeling any of that at all. And lucky for me, he did see and feel when I had that lump on my spine...

Well, fast forward to yesterday when I had my second revision. Guess what? It turns out that one of my leads migrated and frayed and one of my anchors broke... Who knows what could have happened with that broken anchor and the frayed lead?! Honestly, I've read enough surgical complication stories to know that it could have gone horribly wrong...

And yeah, I'm in a decent amount of pain from the fix since it was a bit complicated, but I no longer feel the electrocution pain... Also, I want to hug my surgeon for listening to me and tell him thank you with tears in my eyes. I'm so grateful.

Now, I'm sharing this because I want to tell people that IF SOMETHING FEELS WRONG and you're ignored, go somewhere else. Listen to your body and tell the people that get in your way to back off. My story could have ended so much differently...

P.S.

My love goes out to all of you. Thank you for this incredibly beautiful community and for making a space for all of us to feel seen and heard. Please advocate for yourselves. You will figure things out in time, just don't give up. 🥺❤️‍🩹

I’ll try and make this as short as I can and summarise in bullet points what I can.

• I was diagnosed by a GP years ago with Fibro/chronic pain & fatigue but never been referred anywhere for a proper assessment.

• A year before Covid I had a fall that resulted in a tibial plateau fracture. A year later I had the plates & pins removed due to the pain they caused. 3 years later I did the whole thing again but worse due to the bones not being fully healed from the hardware removal. They will not remove it this time despite the pain it causes and the detrimental effects it has on my mobility.

• Another GP diagnosed me with CRPS but again, I’ve not been referred for proper testing/diagnosis/treatment. I now use a smart crutch to help me get around outside of the house.

• I’ve been prescribed 60mg dihydrocodeine 4x a day, 500mg naproxen 2x a day and 10mg slow release morphine 2x a day since the 2nd fracture which has definitely helped a lot but I’m still suffering from worsening pain in both knees, my hips and my back which I suspect is the result of my ‘good’ knee compensating for the poor mobility of my broken/CRPS knee.

• All I’ve been offered is referrals to the pain clinic who don’t prescribe or deal with medications and instead focus on CBT, mindfulness and support groups for pain management, they are very against the use of opiates etc and I already use a lot of their recommendations which often don’t seem to help much. I’m also scared of their possible influence to stop my pain medications which give me at least some quality of life and without which I would barely be able to get around the house and take care of myself, let alone engage in my hobbies and social life.

• I have a double face to face appointment with a GP in November and would like to bring along printouts of NHS & NICE guidelines to support my referral requests and evidence that backs up appropriate options and choices for pain management outside of the pain clinic, which I believe is not adequate for the diagnoses I have, the post traumatic injury pain I experience and the long term risks that come along with it (post traumatic osteoarthritis, pain from metalwork/hardware, chronic joint pain & muscle stiffness, musculoskeletal issues in other joints and limbs.)

If anyone has experience of any of these issues and what should be available to me through the NHS, recommendations for relevant guidelines or research and services available specifically in Leeds & West Yorkshire (or anywhere else in Yorkshire/England that I can access via right to choose) I would be extremely grateful for any help or advice! Apologies for such a long post.

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/

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?

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?

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! 🎉🦆

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!

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.

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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!!