I think it went well. Back in June, I tripped and kicked the concrete slab letting the dog in. Almost face planted in my bushes! Right ankle swelled up. 2 days later, at urgent care. Diagnosed with a sprained ankle. X-rays negative for a break. 7 days later, back at urgent care for a follow up. X-ray still negative. I go on FMLA , because I can't go to work with crutches, a boot or a cane. First round of PT. Painful. Swelling, bruising, nerve pain. I go into my GP at the end of July and demand an MRI, because I wasn't getting better. MRI showed lots of swelling, but bones good. GP refers me to foot doctor. They xray. Finally see the broken foot. The extra bone i didn't know I had ...and I broke it. More time in a boot. Released back to work end of September, declared well. Except the pain. It keeps getting worse. Testing time! Venous Doppler - negative. 3 phase bone scan ( shot up with nuclear goo. Alas, no super powers. Sadness.) Negative for infection, cancer, or broken bone. Leaving CRPS. Still have a nerve test thing next month. So today in PT eval " Wow, your foot and toes are very... colorful." "Yeah, CRPS." "And ice cold, too!" "Yeah. CRPS." "So, has your pain been better or worse since your bone healed?" ( I was referred to this clinic because they are known for treating CRPS). "Worse," I say, " lots of nerve pain." I pull out my chronic illness journal and folder and explain, because my brain...yeah, y'all know. At the end of the session she says " let's adjust that came for you. It's the wrong height." They couldn't get it to adjust right, so she suggested a new cane. "Maybe I'll get one of those free standing ones. That'd be nice." "Well," she said " our goal is to have you walking without a cane. Don't get anything too expensive."

So I have to ask, my fellow CRPSers...has PT worked well enough for y'all to not have the assistance of a cane?

I'm not feeling too confident about that proclamation, and wanted to see how PT went with others with this crap in their foot/ankle.

Where to start? I've suffered with CRPS for over fourteen years. I have it in my lower back and both legs.

Today was my regular visit with Pain management. It was a very heartbreaking day. I was told out of ALL their Patients, I am the worst they treat for pain. I also have severe Stenosis in my lower back. He stated it was one of the worst MRI that he had read.

He said that we're out of options as far as procedures go. And they had tried most medications that they had to offer. Since Ketimine is not FDA approved for CRPS , I ask if they could treat one of my other pain conditions with it. I've tried it before but I could only offered three treatments. He said as far as he knows it's not covered for any pain Conditions! My question is, does anyone know of a way to get it covered through BCBS??

I'm trying to get refered to a Psychiatrist that does K for depression. BCBS does cover this treatment. There has to be something I'm missing. I refuse to believe that I'm out of hope.

Hello! Me (F20) and my gf (F21) have been together for three years, and she's had CRPS since she was in 5th grade. I've heard vaguely that the condition typically 'fades out' after about a 2 year stint of continuous pain, but this doesn't seem to be the case - we've always assumed this was a lifelong condition.

She doesn't like to talk about it much, (fear that I, or anyone else, will look at her as lesser than) but I really want to know the do's and dont's. She won't tell me much no matter how hard I push, or how gently I ask, so I have a series of basic questions!

1. Does it likely hurt her to walk long distances?

2. Does it hurt her to cuddle/rub her back?

3. Does sex likely hurt her afterwards? (we're very typical, not extreme)

4. She's described the pain as being full body, does this mean her whole body feels as though it can be burning?

5. Do certain clothing textures hurt?

6. Does sitting in the same position for an extended amount of time hurt? (Like a movie or play)

7. If I were to ever make a self care kit, are there any CRPS or pain related items that would be good to add?

Either way, thank you so much! I want to be there for her as much as I can, but sometimes it can be hard to convince her that I'll love her the same no matter her condition.

So I met with the nerve specialist, and she wants to do 3 different nerve surgeries at once to numb me from the shin down beside the bottom of my foot...

She did say that no matter if everything thing went perfectly my crps will get worse. But the aim is to numb the foot foot from my neuropathy so I can do more every day.

I don't know I'm pretty scared this would be my 4th surgery. Each time it's gotten worse and taken longer for recovery. As well as I have my disability hearing in March and I can't be completely useless if I'm denied seeing as how me and my family have to move by summer. So if I don't get disability I'll have to bounce around from job to job at night. Reason I say bounce around is night is all labor jobs which I'm not able to do anymore. Because during the day I have to take care of the kids( both non speaking autistic kids) yes school but my oldest has to be driven an hour each way to a private autism school and soon my younger will be the same she is currently in half days.

If you read it all thanks and sorry for the ramble.. but I'm looking for people who have had nerve surgeries and what there experiences with it.

I live in VT. Each winter my CRPS feels worse. I realize it’s a barometric pressure thing, but Jeeze!

Anyone else?

Today marks 9 years of marriage to my amazing husband! In that timeframe, he has watched me go through hell with my health and he fought along side of me to get me the help I need. I honestly don’t know what I would do without him.

Alright that being said, he started a new job recently. He works for the county as a custodian. He loves the work, his coworkers, and especially the shift. He’s home more, and I’m loving that. I have decided not to work anymore, because he’s right I shouldn’t keep overdoing it when I don’t need to. This new job has great pay, amazing benefits, all that.

Recently he started cleaning the courthouse. He started making sure he looked the part. He’s very well groomed anyway, but this was a touch above. He also started wearing cologne to work. Now, because I’m home alone more I crawled in my head and started thinking that maybe my CRPS was becoming too much and he was looking for someone new, hence the uptick in his looks. I stressed about this for over a month! A freaking month! I started picking little fights with him because of it.

I was scared to ask him if he would leave me, because my CRPS is getting worse. This last weekend we had four days together and he put two and two together, and he told me one blank “Your CRPS is getting on my nerves. But, you my lovely wife, never have. I will never leave you over something you can’t control. I’m always here to help you fight for your health. You and I will get through this, together.”

The rush of relief I felt was unmatched by anything else. I fell into his arms and just cried. He just stroked my hair and reminded me how much he loved me. I seriously don’t know what I did to get to be so lucky to have him.

So while my pain is getting worse and spreading everywhere, I’m no longer afraid of going through it alone. I like to remind people in this sub and a few others that they are not alone. But I guess I forgot to make sure I don’t feel alone either. But, thanks to all of you, I found the courage to open up and admit how lonely I was feeling.

Thank you all, for just being you. I hope you all have a low pain day. 🧡

Hi everyone, I hope you’re all having a low pain day today. A little more than a year ago I sustained a crush injury to my lower left leg, which ended up leaving me with CRPS below my knee. While not ideal, I’ve been able to manage it decently so far. Recently though, I’ve noticed my right leg has started flaring up just as severely as my left leg, despite it never having been injured. This has made it impossible to walk more than 50 feet without my legs giving up on me. Has anyone else experienced this? I’m just feeling very lost and scared, as my pain management doctor has been very hands-off, refusing to prescribe any medication and insists on a spinal cord stimulator, which I’m not entirely sure I want. If anyone has any advice I would love to hear it

Posting this here for anyone that has trouble finding the right words to describe the pain... because when you are in a brain fog, everything is hard.

Hey everyone, 22 Male here, I was wondering if anyone had any ideas for socks to wear that were tolerable for lower extremity CRPS; I have it in both legs and feet.

Does anyone else have CRPS-related paranoia? Like any time I get new pain, I start panicking that it has spread. Or That it isn’t CRPS but the doctor will either say it is and not check for anything else and will miss something? Or is that just my anxiety brain?

I would like to have a discussion about acupuncture and its effects on CRPS . Has anyone had any luck with it ? I have acupuncture on Wednesday that we are trying for my CRPS and I’d like to know if anyone has experience with how it feels when they are placing the needles into your affected area ? I know normally your not really supposed to feel them and was wondering if that’s the case for a CRPS effected area . Any help would be much appreciated!

UPDATE (from a bit earlier):

Just finished. The judge asked tough questions and I cried and I did answer them. Things like hygiene etc Also he brought up my low pay as a programmer. My husband and I designed our business to help non profits. We took reduced pay because we wanted to do good. The vocational expert the judge appointed was on my side. They had to determine if I could do my old job because of my age I am deemed untrainable for any other job. I am exhausted need a cat cuddle, a gummy, Bobs Burgers in the background and a nap. We will know in 30 - 60 days

————

I have done 2 prep meetings with my lawyers. They say I have a strong case with 1400 plus pages of medical records detailing everything I have done to try and help alleviate the symptoms. My husband and I used to our own small web development company for about 17 years. I was a programmer.

About 4 years ago I realized that nothing was significantly helping my pain level except Lyrica. I have major brain fog from it even at lower doses. Between the pain and the fog I lost clients even long term ones as I couldn’t meet deadlines or would really mess up and not be able to complete tasks …even simple data entry tasks were very hard .

I mean I meant to post this long winded post here 2 weeks ago… it takes me time to do long things. I am unable to stand more than 5 minutes or sit in a chair more than 2 hours then the pain is too much to bear. I can lay or sit with my feet up on a table but any sitting is difficult. It’s depressing to write this. 2 1/2 years ago I applied for disability. After the first denial I got a law firm. Now we are at the hearing which is tomorrow afternoon. I am so scared I will freeze or forget something. I have been spending days trying to make a list of symptoms to maybe touch on if possible but I keep feeling confused. I know my lawyers said I did great at the prep meetings but I am terrified.

So ok … uh there is always general pain in my lower extremities (on good days 4 to 6 on the pain scale at its best). My CRPS started in my left foot but now is in both legs and maybe hips / back but that’s made worse from bad arthritis all along my spine. By late afternoon my feet - particularly the left one is an ice block. At around 3am the real fun begins my feet / legs are bright red (which I have been told is rare this long in my disease) , my left big toe’s nail is warped with gray, coal and white coloring while some of my toes always look bruised like some one stepped on them.

The lawyer says keep it simple unless asked for details. There will only be a few questions all vocational related - can I sit at a desk? Can I drive to work? (I use Google drive to go anywhere alone because I get lost even to places I have gone to for decades. ) stuff like that.

I am a female in her early 60s.

I have CRPS type 2 originating in both legs that has now spread to my mid back. I have had CRPS for coming up on 10 years now. Winter is always hard, but I always seem to forget how bad the pain is until it’s unmanageable. It makes so depressed and sad. I want to be grateful that it is not as bad in the warmer months but right now all I can feel is anguish to spend my life like this. There is nothing to do. Recently my right wrist started having horrible random pains and I am terrified of it reaching my arms and rendering me incapable. I’m not sure if I’m looking for advice, understanding or just wanting to get it out somewhere that understands more than my community IRL does. I still wish there was a magic pill, or procedure that will fix me.

Without getting into my whole diagnosis, Things are really really bad! It's to where I can't brush my teeth anymore because my hands and arms are that messed up. And the pain is pretty much everywhere else in my body as well. All started from RSI which was only in my thumbs from gaming too much texting too much during the pandemic. I'm looking for somebody to message with eventually probably talk with. Somebody who can lift me up maybe I can help them As well. I've been dealing with this for roughly 3 years so it's kind of new and the progress has been downhill. Things weren't as bad in the beginning and I had a lot more hope then.

I was happy healthy outgoing physically fit. And my whole life did a complete 180. I also can't take pain meds because what they do to My mental state. I lost all of my friends since this happened to me. I don't talk to any of my family anymore except for my mother. I have a wife that just continues to get more and more distant since my injury got worse. And quite frankly I really don't want to be on this Earth anymore. But I've been told that I should probably try and make some friends online since I can't deal with people in real life in my condition. So this is me trying to reach out that Olive Branch. You don't have to be as debilitated as I am. I just can't fathom that's being my life permanently, I can barely get through each day. How was such a strong person I made it through 10 years of post-acute benzo withdraw syndrome and got off of them while I was going through the beginning of this pain situation. And I will tell you chronic pain is an infinitely worse than mental anguish that I dealt with from that. I was in absolute psychosis panic attack akesthesia all day all night long and this is infinitely worse.

Anyway, My current interests are absolute audiobook fiend, Comic book addict, I used to be the biggest movie and television buff but sometimes my brain can't handle it because of the pain, Pain is too bad to enjoy music anymore, Gaming was the main thing that got me through the mental stuff that I was talking about but I can no longer touch a controller a keyboard anything like that. I even bought a very expensive mouth controller for quadriplegics that I can no longer use because of the pain in my neck back other areas. I keep putting off finding a therapist because it's just such a commitment for my schedule right now. I sleep whenever my body tells me I'm tired and my schedule is horrible. I lay in bed in agony until my body finally gives up and I pass out. Then I wake up a couple hours later completely stiff in excruciating pain, to go put my arms under hot water then try to get back in bed and fall back to sleep. And that can happen multiple times throughout my sleep night. I still don't even have full diagnoses because I haven't wanted to see doctors in months. Actually it's been almost a year. It's very possible that I now have extreme CRPS from a botched surgery that I got on my elbow that pretty much put me in the place I'm in.

I am an ex-long-Term Christian turned atheist. But I don't care what your religious beliefs are. My mom is still very religious and prays for me everyday and she's my best friend. And we totally respect one another's beliefs. I'm 45 m and I don't care if you're male or female. I just figured I would give this a shot unfortunately I'm not expecting too much because Humanity has let me down so much this far. But you never know I might find that person that clicks with me and gives me a reason to keep moving each day.

That's the very short version of Who I Am and what I've been through. Hopefully you can find out more about me and I can get to know you.

If there's any other communities that anyone would recommend for me to try and go about finding people to Become serious friends with who are also going through what we go through let me know? And please excuse any typos I have to use voice dictation now because of my arms and hands.

I've been dealing with these new symptoms for awhile now ( couple months and today was the breaking point... I stood up, got light headed seen spots and suddenly fell down and smacked my head on a table... Long story short... Went to the ER had a bunch of tests done and the ER doctor diagnosed me with POTS... I don't have trust in the medical field so I don't exactly believe him... I plan on following up with my G.P. to see what she says but I want to list my symptoms here and see if the people here who actually have POTS have the same symptoms...

I know no one here is a doctor and can diagnose me... I'm just curious...

1. If I sit crossed leg my feet " fall asleep " pretty quickly and take a long time to " wake up " ...
2. When I stand up I get light headed, see spots, get disoriented and it feels like my heart is going to beat out of my chest...

The ER doctor wants me to start using a cane to help me get up and I'm supposed to start getting up very slowly to give my body time to adjust...

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Whew so at the moment I have FOUR new pairs of shoes to break in after 4 of my favorite shoes have died or are almost dead. Even though the boots are orthopedic association approved, wearing them for several hours today to start breaking them in has resulted in me having to use my knee scooter and horrific pain. I've had these boots for 2 years but never even tried to break them in because I didn't feel like I could. I have only been able to wear one pair briefly a couple times a week followed by 2-3 days of recovery needed and I just can't break them in fast enough! Feels like such a losing battle and just continued torture. I was hoping to take at least one new pair on our trips coming up but there's just no way. My old sneakers are starting to talk (tip of the sole is detaching) and they're not winter shoes but they're the only ones I have been able to travel with for years. 😭

Does it feel to anyone like acid is in your tissues? I have a feeling like my thighs, lower back, stomach, hips and lower back are being dissolved by acid down to the bone. My muscles ache and burn like I am stuck on the last rep of exercise. Then it changes into buzzing deep tingling. But my skin doesn’t really bother me, it’s soooo deep! I have it also in knees and lower legs and sometimes arms but the pelvic area up and down is the worst.

My feet are feel like ice cubes. But what is the actual skin temperature range (in Fahrenheit) of someone experiencing cold feet with CRPS in them?

i had major surgery on my chest wit huge scars, I had a massive hematoma and was rushed back into surgery 2 days later. all of this did nothing, why?

Ive been referred to several pain clinics. Each one treated me like crap. The hospital reffered me to a new clinic and just the same. Plain out friggin nasty. I know it's a underpaid, stressful job. Lots of regulations. I wouldn't be able to do it! Everyone coming in acting or actually being in pain. I have CRPS in my right arm and hand and my left leg knee down to my feet. I've just been getting crapped on and I'm in extreme pain. So bad that the ER knows me. How do I find help?

Hi all,

I have CRPS in both wrists hands and elbows. Occasionally the pain will radiate all the way up my shoulders.

Someone suggested I use a arm brace/sling when the pain and swelling gets too much.

Does anyone have any experience using either a brace or sling?

I am currently using a tens machine and taking medicinal cannabis. But the cold is really making the pain unbearable.

Any advice or help is very much appreciated.

TIA

16 to 18 years old i was very athletic and liked to work out on gymnastic rings in my room, i was never strong enough to do something like a pull up unassisted but i could swing on the rings while hanging on, and i had the balance to be able to hang upside down with my feet in the air. I did lots of other active stuff too like running, biking, ect.

I developed crps when i was 18 after completing a 1 month long triathlon and i got tendinitis in my right knee, it turned into crps.

Within 1 year it moved to both my knees, elbows, and wrists, and i had become bedridden, an ambulatory wheelchair user, unable to write, use a computer, play games, work, go to school, i couldn't walk without pain, and i couldn't even sit in chairs without pain. It continued to get worse over the years and i wasn't diagnosed or receiving proper treatment until april of 2023. I am 23 now, i have had crps for 5 years, it was untreated for 4, long, excruciating years.

I have now been on proper treatment protocol for over 1 year, and i am recovering thanks to ketamine infusions, oral k, and a few other pain meds. This was a shock to me and my care team, i was told many times during my journey i would never run again, but my new doctor thinks my personal goal of being able to stand and walk for 3 hours without pain or paying a price, is actually a reasonable goal for me. I cannot explain how surreal this feels.

I can use the computer again and write if i take breaks, so I've been trying to use my gymnastic rings in my room again. These are two big rings that hang from ropes attached to the ceiling, and i started gently using them. First, i grabbed the rings and would lean back, my feet still on the ground, im just leaning back and hanging on. First try was 1 minute. I stopped there, maybe a week or two later i try again, this time 2 minutes. Then, a few weeks later i try another exercise. I lower the rings to around my hips or waist, i hold onto them in the same way you would if you were about to do dips, but instead of lowering myself i just stand on my tippy toes. The goal was to regain balance with the rings and support my weight. First try was 1 min and 38 seconds, a week goes by, i try again, this time 1:30, i had to stop because my arms were hurting, then another week or two, try again and i get 2 mins and 56 seconds. That was a few weeks ago.

Today i tried my first dead hang since crps wreaked me and i hung for 14 seconds.

its huge for me, its huge for crps, i never thought I'd even get back to this. I never thought i could play video games again either, but here i am, regaining my life one step at a time. And it only took 6 attempts at using the rings to get back to this. Its crazy how fast the body remembers its old ways.

My skin has had the classic look of being very shinny. Now though it has lost that and is dry. Maybe the winter. Can’t remember if it did it last year. Has anyone experienced this!?

So August of 2022 I'm told that what I was told prior that I had sprained ankle was false and my foot had be broken and I was working on a broken foot making it worse. So I stopped working went on short term disability, doctor said 1 plate 4 screws and you will be on your feet in 12 weeks. It's November 25th of 2024 and I have had 3 surgeries, confirmed chronic deep right peroneal neuropathy and crps in my right foot and leg.

Endless to say apparently this is how it was supposed to be.. I'm not there yet... but first surgery woke up to 4 plates 17 screws immense pain complaining the whole time just for when they weer about to release me back to work for me to yell my way to a CT which confirmed that I had no union whatsoever over the 3 joints. I had 2 weeks left of insurance before I got fired so we went with surgery 2 1 plate 5 screws and 3 staples.. after that surgery I recognized neuropathy with a constant vibration across my toe knuckles, pins and needles, lighting shooting pain, burning sensation.. I instead to see someone about this get the text back my doctor leaves. Bounce around because of state insurance, no one wants to do anything but put pain machines in my body I'm only fucking 30 years old, 3 kids.. finally I just went to er of the newly built hospital and they had to send ne to a follow up after creating a scene to get weight bearing x-rays to prove I was right again and my foot was still broke. Which was true.. somewhere between neuropathy confirmation I realized the more o pushed my self during the day to do more the more my neuropathy traveled up my leg on what felt like a highway of pain uo the shin to the knee to groin/hip.

Here I am and the new surgeon recently took everything out because it was actually causing more warm than anything the previous surgeon had screw threads exposed in one joint by not putting the screw in far enough(which also meant it could never heal) And then on the last joint had missed bone and put s staple directly in my joint. Oh yeah he found a drill bit in my foot and told me he would have had to shatter my 2 last toes to be able to get it out and must have been in there since my first surgery with how much scar tissue and bone had covered it.

Well I slipped Friday going down my ramp, and my leg is killing me thankfully I have script of pain pills which helped me get through with icing and elevating but I'm back to hobbling around like I'm old and frail. Mental it's fucking me up I used to be the person who could out work anyone, and now I can't even fully do my new role as a stay at home dad to ASD children. Without needing my wife's help with laundry. My lawyer said that the doctor documented in such a way to cover themselves. I have a hearing for disability soon with my lawyer over the phone and I'm praying for that to come through. My family has to move

Didn't even vent about that I was a year away a year fucking away from being a millwright journeyman.. my wife final has a job making close to what I was at the time. We are almost out of debt but like I said out homing arrangement is now fucked and we have to move. We can't rent my oldest is level 3 with pica sound language and hearing disorder and my middle child is level 2 with sound language and hearing disorders. We have 2 mastiffs that are amazing speacial needs pets BTW. We can't do an apartment we will get kicked out from yelling and stimming, nudity just our typical autism day.

I really need God to make away for this disability hearing to be approved for the backpack from August of 2022 even if it's just for a year of pay for me to try this nerve surgery they are suggesting to numb my leg, technically 4 nerve surgeries at once... if we get the back pay there is a down payment, and a year od benefits is the mortgage payment while I relearn how to do everything with a numb leg and hopefully put of pain to be able to at least work night shift at a gas station.

This isn't how my life was supposed to be I'm only 31 and old people in grocery stores pass me walking by its pathetic.

My doctor really wants me to try it however I'm kinda nervous about it.

My CRPS is type 2 and is the worst in my feet/toes. My life, like most here has been turned upside down in the last two years.

I am finally overcoming the mental aspect of things and my pain is somewhat lessened with meds and body work.

I worked from home in a wheelchair and can no longer walk more than 1 or 2 steps. I saw a post recently saying you can get a wheelchair prescription and they can help you get a chair that’s better than the $95 drive chair I got off amazon.

I recently had back MRIs and they found a bad disk bulge between my L5-S1 and it is getting worse from the chair.

I’m scheduled to get a DRG trial on Dec 2nd and one of my Dr is going to do the surgery. Well I got a call on Thursday and they said the damage to my L5-S1 is going to prevent them from attaching all 4 lead wires to the nerves and now they can only do 2 leads, one to each side around my L5.

I NEED to get my back fixed and I think having a better chair would help greatly.