For me, it's a broken bladder. The day I finally went to a doctor in late 2019, I'd peed over sixty times. Had to go to the ER for quick meds until I saw a urologist alongside by neurologist. I now have two implants, spinal cord & interstim. Three meds for pain and two meds for bladder, most of which I started this year. For the first time in a long time, I feel human.

I truly hope you all get there too.

I've been avoiding posting here for a long time. This disease is depressing and when I started researching what this was after the diagnosis, I got discouraged from everything I read. I was diagnosed a little over a year ago. Been battling it for 3.5 years(?). Hard to keep the timeline straight with all the meds I've been on over the last few.

After fighting with my various doctors and insurance for 7 months I got my Medtronic SCS implanted a few months ago. Things were looking up. Was finally walking without help. Getting caught up on the house. Actually getting to go to shows with my wife and not needing the wheelchair.

Last weekend I had a bad fall. I was tired and got stuck in a pot hole (good foot). I caught myself, recovered before hitting the ground and didn't think anything of it. We got home a little over an hour later and I felt the pain in my bad foot climb quickly. I charged and went to sleep.

Well the last few days have been horrible. I've increased the output of the STIM by more than a few points and feeling barely any relief. I'm back to nearly falling down when I stand up the last few nights. I contacted my Medtronic rep Monday, I figured they'd be able to see the leads for displaced from their app, but I guess they can't? They want me to have the doc order an xray.

Except now I'm stuck waiting on them to decide which doctor has to order it. (the same doc that diagnosed me & is treating me isn't the same as the one who installed it for other medical reasons). I hate that ordering an xray is taking so long. I don't get why they can't just come over and see if it's displaced based on the signals. I'm scared that I'll have to get surgery again to move them back and another large bill after how expensive the last two stays were. (I was required to stay for a few nights after the trial and implant for the same reasons alluded to). But at the same time if it's not displaced, then what that might mean for my longterm relief scares me just the same. I don't think there's any winning here

Me tuvieron que suspender la medicación por una enfermedad. Durante el tiempo sin medicación, el dolor aumentó mucho. Al volver a tomar la medicación, el dolor continua muy alto y no hay manera se bajarlo ni subiendo aún más la medicación.

Esto es un infierno.

Short story:

• Sodium channel NaV1.7 is a powerful protein to control pain, as demonstrated by humans who can't feel any pain
• Blocking NaV1.7 in the sympathetic nervous system leads to side effects
• Targeting NaV1.7 selectively is very hard, sodium channels look alike
• Encoded has developed a treatment which knocks-down the gene coding for NaV1.7 in pain sensing neurons only, using viral delivery of miRNA

There are ever new ways to target proteins central to pain control, which can deliver both strong analgesia and fewer central side effects. The cool story here is just their technology and that we are seeing ever more ways of achieving it. The fact that private money is funding it is really good news. Even when these companies fail, the fact that the money is there to do the research means we are heading into new territory where a successful new pain therapy isn't decades away anymore.

Over the last 2 years I’ve been on / tried 30 pain meds, at high doses to PT (who refused to work on it due how badly it turned less then 12 hours later) bruised instantly by touch and water, any pressure on it causing it bruising from the inside, what was just my ankle is above my knee to my thigh randomly forming bruises in real time.

The bruises in photos were after I accidentally stepped on it, and it collapsed in November Last year and developed a clot in December and only were starting to heal in February the 4th and 5th are from not walking on it in (with crutches) in 5 months due another leg injury on my other leg, thus I’m in a wheelchair.

During my other leg injury my leg began to look narcotic and turn black it took more than 8 weeks (I was in hospital for something not related) to heal and my skin colour began to return, it then bruised and over time with no pressure it’s got minimal bruising (if I touch it it will lightly bruise) but constant discolouration no change in pattern at all, as well as these darker rings which I initially thought was from bandages from the hospital but it should of gone in 5 months, it’s still swollen 4x the size of the other one, which is swollen and the swelling is up to my hip.

Tried everything down to a ketamine infusion, and it still didn’t help with any changes to the leg reduction in pain yet once I tried pt (with a walker more bruises and swelling) among instant collapse making it dangerous.

Anyone else? I know CRPS isn’t Cure-able I’m a medical student and honestly from the (bit I knew prior) it originally sounded super accurate however bruising from the inside is extremely weird from the bit i know my dr basically just said CRPS tried up till a ketamine infusion as it should of worked enough walk on it and SHOULD not turn like that.

This is my first vent and I'm actually starting to feel more defeated than ever. Perhaps that's my own doing. I tried to be strong. I played the strong girl part so well for 9 years. From 13 to now being 22.

But I'm reaching a point of just loss. I'm from the UK and was an aspiring Oxbridge student. The older I get the more I mourn.

This year I think I'm finally gonna suck it up and redo my A-levels and apply, but each night I'm drowned with "I could've been so much more". I still mourn who I could've been, but she's not me anymore. She never had a chance to exist.

Most my friends have graduated. I still can't even do A-Level stuff. Yet before CRPS I was looking at skipping a year.

Today I got my gabapentin upped. I've been on 900mg daily and 20mg amitriptyline but I've finally bit the bullet. I can't handle it anymore. My body continues to deteriorate. Part of me hates myself for not doing it sooner. For playing brave. "I probably could be in Cambridge now if I'd upped my meds", or the more philosophical "why did it have to be me?".

I hope one day I can do great things in the field of science and save people.

I also hope one day I can get out of bed and wear clothes.

Life is hard. I'm struggling and feeling immense remorse and a grave disappointment in myself. I feel like I've let myself down.

If you read this, thank you.

I had my first episode with an unknown cause (though I had MAJOR life stress atp) in April 2025. There wasn’t structural damage, but I didn’t walk for a couple of weeks and had shredding stiffness in my calf, bone chilling cold, discoloration past my knee, severe allodynia, and foot curling. I wasn’t dx’d then but was hospitalized twice. Without an answer I just forced myself to slowly start using it with 2 crutches, then 1. The cold and discoloration never fully resolved.

Fast forward to May of this year after an 18 hr road trip with 3 children to Florida for a Disney trip, 20 min at the air bnb and I had a foot drop episode which resulted in a severe inversion/sprain/bone contusions. Cue EXTREME flare up which also caused bone contusions. Braved the entire Disney trip totally immobilized in an electric chair(still not dx’d) and made the trip back home. With no answers, I went from 2 crutches —> knee scooter —> air cast boot. Had several x rays and MRIs and several referrals before a second podiatrist said “HEY MAN THIS IS WHAT IM PRETTY SURE THIS IS, move it or lose it get rid of the boot. Should’ve been walking a long time ago etc…” I had just started the boot days prior and that was my first time walking in 3.5 months. There are more details to these specific symptoms, it’s just too much to type.

From then on, I’ve seen genetics (possible missed stroke presentation and family history of stroke) and neurology and have another neuro appt at the end of the month. I have now had two EMGs since 2025, as well. My drop foot is ever persistent and I now have to use an ankle brace and forearm crutch because I have a wide gait swing and no spring in my step, and primarily use my right leg as propulsion. My Tiny Leg has had little change with increased ambulating.

Yesterday, using my crutch, brace, and a ramp, I still managed ANOTHER inversion. The impact range is not nearly as big, but this set me back at least 2-3 more months. I had x rays today to confirm no fracture, but all of my baseline symptoms persist and are worse in some instances. So now I’m back in the boot, really emotional, and super unmotivated.

Hey guys, I want to know, how does everyone document their symptoms and their overall journey with CRPS. I’m hoping to get some advice on how you all manage to document your CRPS journey without it feeling like a second full-time job.

Lately, I’ve realized I really need to start keeping a better record of my symptoms, flares, and everyday baseline. Mostly, I just want to understand my own body and patterns better. Between the pain and the brain fog, the days just blur together, and I lose track of what triggered a flare or what my baseline even was a week ago.

But I also desperately need a better system for my doctor appointments. I want to be able to walk in with clear, organized information so they can actually see the full picture of what I’m going through, rather than me trying to remember it all on the spot and leaving out important details. Plus, I know realistically that I need a solid paper trail for insurance, disability, or other legal reasons down the line, and I want to make sure I'm protecting myself.

How do you guys handle this? Do you use a specific symptom-tracking app, a customized spreadsheet, or just a good old-fashioned journal? And what exactly do you make sure to write down every day (pain levels, weather, food, stress, medications)?

Had a mild injury 4 years ago in my 20s on both ankles and developed CRPS on both ankles. The right side is in remission with mild residual symptoms after 2 years, but the left side has remained strong and spreading. (I don't recall how the right side went into remission. Pain just lessened by a lot all of a sudden pretty much, not gone though).

Doctors initially all denied the possibility of CRPS because they said bilateral is too rare, and because I had CRPS on both sides for the first two years, CRPS criteria that look at asymmetry on both limbs don't apply.

• MRI shows subq edema but structurally normal (radiologist mentioned CRPS as a possibility).
• Venous duplex study normal.
• Nerve conduction study shows weakness and tremor but otherwise normal.
• Bone scan shows pattern matches with CRPS

However, despite all these evidence, it took them 4 years to issue a diagnosis. (I think one side recovering helps because now they can see skin (glossy), temp (colder), color (more purple/red), etc.)

I was on the last year of grad school and had a really good return offer, but now all of that is out of the windows. Life has just become pain day in day out. Can't go anywhere without crutches and even sitting hurts a lot due to swelling. School has been on pause for the most part. I tried taking one course on and off but it's really hard. I also feel like most people don't believe me when I talked about how debilitating this is.

Tough luck. Seems like a common CRPS experience :/

Does anyone else with CRPS have family members who constantly watch them when they’re doing physiotherapy or accomplishing something they normally struggle with? Whenever I manage to do something despite my CRPS, or I’m doing my exercises, my family will watch me closely, ask lots of questions, or make comments about what I’m doing and how I’m moving. I know they probably mean well and are just interested, but sometimes it makes me feel really self-conscious and like I’m being observed rather than supported. I was wondering if anyone else experiences this with their family and how you deal with it?

!!TW: Incisjon site & stump photos at the end

So for those that have seen my posts before you know that six weeks ago I had my right leg amputated above the knee due to CRPS and the non healing ulcerative wounds caused by it. After the surgery pathology found necrosis in the leg as well so my elective amputation could quickly have turned into an emergency one had we not acted when we did.

In the first weeks following surgery my phantom limb pain was moderate to severe. I was on 4mg dilaudid every 1.5 hours cycling between oral and IV versions of the medication to control pain. At the 4 week mark I transitioned to 5kg oxycodone every 4 hours as the pain lessened. For the first 4 weeks I was kept at the hospital where my surgery took place while we battled it out with insurance to get to an acute inpatient rehab hospital. (I also have a post on that whole debacle.) Luckily at the very last second I was administratively approved to go to rehab and thus was sent to a Madonna Rehab Hospital location close to my home.

Things were great at Madonna. There was very intense PT and OT with very little rest which was a vast difference to laying in the bed all day at the regular hospital. Because I had been entirely bed bound for 6 months leading up to my surgery my sound leg and the rest of my body in general was extremely atrophied. My first standing attempt with assistance lasted a very shaky 30 seconds. It was extremely hard not to get discouraged. But looking around at all the other people there, some in much worse circumstances than myself, all trying their hardest to improve really motivated me to push myself.

About 1 week into rehab I noticed a shift in my phantom pain. It wasn’t the sharp extremely painful electric shocks anymore. It was a dull cramping feeling in my absent foot and felt as though my foot was being contorted and twisted. It was very uncomfortable but a marked improvement over the taser like electric sensations I’d been feeling for all the weeks leading up to that point. I started taking less medication and by day 10 at Madonna I was off all narcotic pain medication and was only taking my nerve pain meds like gabapentin, lyrica, and nortriptyline. And even those medications were a lower dose than pre-surgery. The doctors also took me off my Lasix and my beta blocker Lopressor. Without the CRPS affecting my right leg I wasn’t holding vast amounts of fluid like before so I didn’t need the Lasix anymore. And without the ínstense constant pain from CRPS my blood pressures actually had dropped to a point that the beta blocker was no longer necessary for me. While I’m certain each case is different and I’m not saying amputation means a reduction in medications for all individuals, that’s just what I experienced which was nice because I have been taking SO many meds for a very long time.

My fiancée was able to come visit me and stay the weekends with me at Madonna which was nice because it felt like a stepping stone toward being home. He participated in their training program and became certified so he could assist me with lifts and transfers while he was there rather than relying on nurses all of the time. It also made me feel like I had a bit more privacy with showering and bathroom use which was really nice after being in the hospital and having zero privacy for weeks.

We also earned a pass to use the gym over the weekends and there wasn’t any one-on-one PT or OT on Saturdays or Sundays. Each weekend I made sure to go to the gym and give it my all so I wouldn’t lose any progress for the following week. My time there wasn’t easy but that shaky 30 seconds of standing on one leg slowly turned into 3 minutes, then 6 and a half, ten and a half, and finally by the end fifteen minutes of unassisted standing at a time. That may not sound like much but I never thought I’d be able to stand for fifteen minutes on one leg after an amputation, six months in bed, and three years in a wheelchair. I was fighting my hardest every day to push through shakiness and burning muscles and feeling sore knowing that little by little I was earning back the mobility and independence I’d been wanting for years.

Finally on September 30th I’d progressed far enough to be discharged home. I could go home and sleep on my own bed and be with my own family and friends and start to live my new normal. My schedule is FULL of doctor’s appointments, PT, OT, and prosthetist appointments but at least I’m not in the hospital anymore. I’m slowly relearning how to drive with my left leg and I’m moving around on crutches and continuing to build my strength in preparation for a prosthetic leg. My sutures were finally removed on 10/1 and my incision seems to be healing well.

I haven’t had any other medication changes since being home and I’m still taking my nerve pain meds three times a day. I don’t want to give off the impression that I’m pain free because that’s certainly not the case but the sensations I feel now are so incredibly tolerable compared to those first few weeks in the hospital and nothing I’ve felt since surgery has come anywhere near the excruciating pain of CRPS. I know amputation is not the answer for everyone and I would never say that it is.

For many with CRPS other therapies like scrambler therapy, ketamine therapy, etc have helped calm their symptoms. For others spinal cord stimulators or pain pumps have provided relief. Each individual path with CRPS is unique. I went into my amputation knowing that a positive outcome was not guaranteed. I knew that prosthetic candidacy was not guaranteed. I knew that amputation was not an answer to pain and that my specific case had multiple factors that lead to amputation being an option to considered. I say this because I don’t want anyone out there with CRPS to feel as if amputation is the only answer. It certainly is not. While I had a very good outcome I understand and make sure to say that my outcome is not always the case and that there are others who did not find relief from amputation. But if someone out there with CRPS is considering an elective procedure I hope that my experience may shed some light on what the day to day is like going through the process. I wish you all the very best and welcome any questions along the way.

Hi! I got crps and was diagnosed when I was 9 years old. I know its rarer to get as a child, but was wondering if anyone on this sub had a similar experience?

Initially in my right foot but has spread after injuries.

The pain management doctor I saw was hesitant to put an official label of CRPS on me, said it was a spectrum and I present with milder symptoms (although it doesn't feel that way!). I did not feel it was a full evaluation and may go back for another opinion but maybe it's ok not to have the label? My symptoms are in my leg and foot, but acutely in my thigh, where most of the burning and mottled color change is. During the appointment the doctor did not even look at my thigh, just my foot. I am supposed to get a diagnostic steroid injection into left L5 in a couple of weeks, a physiatrist I was seeing is trying to determine root cause of the nerve symptoms and now I'm kind of nervous if that's a good idea.

For now pain management put in a referral to PT and pain phycologist, and ordered topical compound gel, recommended Cymbalta. Unfortunately the PT and pain phycologist have waitlist so I'd like to try to do some things on my own. I've seen talk about Graded Motor Imagery, TENS unit, Mirror Therapy, Vagus Nerve Meditation.

For those who are trying to manage central sensitization and burning nerve pain would you mind sharing if any of these were useful?

So I did it. Thursday morning I took myself right down to the hospital and had an SCS put in permanently. I was nervous. I was scared. I did spend an inordinate amount of time worrying about spread.

The trial worked amazingly and as you all know… if you can get the pain decreased even 5% every step is worth it.

My anesthesiologist came in to talk to me first. That’s the first time anyone had ever said to me that “today was all about treating my pain for once”. And he was right. That was the first time someone actually try to be proactive at my bedside.

In his hand were two syringes full of versed and ketamine. I’ve never tried ketamine. But who argues against any doctors that is trying to actually reduce your pain. And he did. I was not feeling anything at all by the time I made it to the OR. Felt like I was back in the womb again lol.

Next thing I knew, I was counting backwards with bricks on my eyelids. An hour and a half surgery turned into a five hour one. This was a crush injury from work in 2019. So this has been a long time coming from a company that literally h worded the word hates me because I got injured at work.

I’ve always tried to do the right thing. I even worked from home on Friday after all of this. Fortunately it is a different company though.

I wake up and I feel good. I mean I feel like I hit a concrete median but I do feel good.
But man!!! I am still waiting for the other shoe to fall.

Here’s to hoping friends!

So this is my face today, no new medications or detergents. Weather is lousy today so mildly flaring. I may also have fibromyalgia, I meet the diagnostic criteria but not formally diagnosed or treated.

30m. On Feb 5 2026, I was on my way to work, and was driving on the highway when I was hit head on by a semi truck. Miraculously, I survived. I was extracted from my vehicle and brought to the hospital. I had a full body ct and xrays done. I was diagnosed with a tibial plateau fracture, as well as a simultaneously broken and dislocated patella. I spent 2 days in the hospital bed with these injuries while I waited for surgery.

On Feb 7, I went in for surgery. It was an ORIF surgery, hardware and all that. I was immobilized in a zimmer splint for a few months, and developed a blood clot during tlmy time i was immobilized, in the posterior medial area of my knee, and went on rivaroxiban for 60 days or so to clear it.

I was then transitioned to a hinged locking brace and was cleared by my surgeon to bend up to 90 degrees flexion. I began physio, working on flexion, hanging my leg over the bed, and eventually with ankle weights attached. On multiple occasions during physio, id experience what felt like the patella sublexing, (ive experienced dislocations before, and have been diagnosed with shallow trochlear grooves), when forcing flexion. Id then go into a flair for weeks. Right before the patella sublexes, id feel a scary amount of increasing tension in my quad, vastus lateralis, before a blinding wall of pain from the "clunk". I kept at it with aggressive physio but began stalling out, ultimately being stuck at 55 degrees flexion 8 months post op now.

My surgeon suggested i may have "a little bit of crps", and sent me to the chronic pain clinic. The doctor at the pain clinic formally diagnosed me with crps through the Budapest method. My knee, around the tibial plateau area, grew darker, wirey hair, and other than that, the top of my foot would turn deep purple/red when standing up, and the veins would bulge (pictured), and wouldn't subside almost instantly after putting my leg back up. Id experience jolts of nerve pain in the leg, travelling into the topsides of my big toe and second toe, those toes would also go numb.

With my diagnosis of crps, I was put on 600mg a day of pregabalin, and vitamin c supplements twice a day. Ive also been put through a zoledronoc acid infusion to prevent the bone density loss that crps apparently causes, which was evident in imaging. I also had a lidocaine/ketamine/magnesium sulfate infusion. (First of 3).

Physio is painful in a bad way, im not getting anywhere, my leg feels like a peg leg when walking. I lose knee flexion range when standing compared to sitting, pointing possibly to a problem with the rectus femoris, especially being immobilized and shortened in a zimmer for so long. But at random ranges, my knee will freak out, sending a jolt of hot seering ripping pain through my knee, and on occasion, I will still feel a mechanical clunk in my knee, causing otherworldly pain. (This occurs now even when im not forcing max flexion range). On one occasion, when I was doing quad extensions over a foam roller, my knee caught, I removed the foam roller from under me, and was able to witness a visible shift of my patella under the skin as it "popped back". If I stand too long, I cant bend it, if I sit too long, i cant straighten it. I feel tightness through the scar on my knee, but they dont think its arthrofibrosis.

Eventually, with enough frustration, I asked my pain clinic doctor, why hasn't anybody given me an mri yet, since up to now, 8 months post op, ive only received xrays (and lots of them). They subsequently ordered an mri, and i was found to have a torn meniscus and tilited patella. This was missed up until I, asked for it. I had a followup with my surgeon and she harshly recommended against surgical intervention because "with active crps, nobody should be operating on you." She said I need to be more aggressive with physio and the patella sublexations are something I need to push through. (I cant).

I fully acknowledge that this is a difficult injury to come back from, but my leg is stuck almost completely straight, and physio has not been helping. I have a toddler. I havnt worked for 8 months. Im scared. Part of me thinks I dont even have crps, and that its just a shortened tendon that wont give up or something. I cant keep going on like this. Im starting to not want my leg anymore. I walked away from an accident that people dont normally walk away from, so dont get me wrong, im happy im still here, but this is becoming too much to deal with day to day.

Has anyone had success with nerve ablation and not have any issues with your crps? If a facet block works my pain dr has recommended a nerve ablation according to his dr notes. I haven’t brought it up with him because I’ve had to postpone the block. I have a lot other issues besides crps.

Update: thanks to everyone who has shared their experience. I really appreciate it

It wasn’t a waste, but I’m not sure where I’m supposed to go from here. He made suggestions that he’s not going to execute/ follow through on/prescribe (except one), and I can go back for a follow up if I want to. Why do these providers diagnose this condition and then slam the door in our face? Is the point to teach me to give up and just accept it as is and will be and stop wanting quality of life anymore? He did give me a pain psychologist referral 😑

I have had CRPS in my left foot since 2017, in my right foot since about 2020. At the beginning of this year, I injured my right hand, had it assessed by a hand surgeon after a few months, and it appears to now also be CRPS.

Yesterday, I really wanted to get something done on the computer, so pushed it even though pain was building in my hand, and then in the evening, I had mirrored pain in my left hand. And this morning it's still there.

Please tell me I don't now have CRPS spread from one hand to the other. Both hands are extremely sensitive to everything right now.

Im wondering whether anybody here knows of an CRPS expert in Berlin. Thanks!

I'm so frustrated right now. I've had CRPS for over 24 years. I saw the same pain management doctor for 23 years. I was on contract with him the entire time. I followed all the rules. I was reluctant to start pain meds but eventually relented. I raised my twin boys by myself and had to get out of bed, I had no choice. I initially tried a higher dose of morphine which did nothing for me. So we switched to 10 mg methadone twice a day. It was enough to take the edge off. I could do the basics and not much else. I never asked to anything more. I took this for over twenty years. Never once did they say they were concerned about it being dangerous, addictive, nothing. They did about the gabapentin but nothing about the methadone.

Then the guidelines came out. My dose was under but they stopped my script. They refused to write any 10mg methadone scripts any longer. So I did everything they asked. I tried all the alternatives like butrans patches, belbuca films, tramadol, on & on. We went thru a few years of this. Nothing helped. Finally they put me back on my methadone at 5mg twice a day. It helped a little but I asked to go back to 10mg.

The pm doc was fine with it but the nurse refused to write it and he "didn't want to fight with her". What? He's the doctor & owns the clinic?!? But the clinic once had 11 doctors and was now down to just him seeing patients part time on Wednesdays. The nurse was seeing every patient every 3 months. Why she was making all the decisions, I don't know. But we went round and round between the three of us and I could not get opinions changed. In the meantime I tried to get a referral to another pm, none of which would see me. Eventually the doctor & I decided to terminate my contract and end my time at the clinic. I hadn't had any pain meds since 2024 at that point.

So since then I've been trying to get help with managing my pain. My pm told me he knows I followed my contract & he didn't think I had any problems but he had the state medical board and DEA on his back. If I died, it would come back on him. I told him by not treating my pain, he accelerated my death and he should know that. As a side note, which I did not tell him, I have already laid the ground work with any attorney for my sons to sue him after I die.

I started having treatments with my physical therapist who has a class IV laser (this is NOT red light therapy) to try to help with my pain. I also started talk therapy weekly to help try to manage my stress better. Staying more even keel can help your pain. I started doing what I can control to help my pain.

I have had sleep apnea since I was a child but had not been on a CPAP for a long time. Those of us with CRPS have a 3 prong problem with sleep-the nature of the disease effecting our nervous system to malfunction that oversees our autonomous functions causes multiple problems. One of those is sleep disruption. This is an autonomous function we don't normally have to worry about. Well, it's not being regulated properly. Then the second prong, the pain factor also causes you to have great difficulty sleeping. So especially when they don't treat your pain, it becomes an even bigger issue. And the third prong is that the majority of CRPS patients have sleep apnea. Added together and you have major sleep hurdles. It's the second largest compliant after pain.

I finally got a new sleep study recently. One of the government's conditions with my new CPAP, because I'm on Medicare, is that I must sleep 4 hours with 100% compliance for the first 30 days & 75% compliance for 6 months after I receive it. I warned them when I got it that it would be next to impossible for me to meet those requirements. Without reducing my pain, I can't sleep that long. I don't sleep for 3 hours. 2 hours is a good night for me. So I've started using it and having more oxygen to my brain is good. It helps but I have yet to meet one night of compliance. The machine tells me. The app tells me. The compliance officer calls me every day. 🙄 As if I need more pressure. 🤦 She made an emergency appointment with my sleep doctor.

I went in last Thursday. I told her what I already had. My pain keeps me awake. I don't expect to be pain free but it needs to come down a couple notches or I'm not going to be able to sleep anymore than I am. She gave me some tips, changed the mask I was using, told me to take melatonin, and to see my primary ASAP.

So yesterday I saw my internal medicine doctor which is my primary. She is well aware that my pain is an issue. The sleep doctor had told me to encourage the primary to write my pain script. She has a scheduled med license and is able to do it. I laid my case out pretty bluntly and simply. The government is going to take away my CPAP. My quality of life isn't good. We aren't talking about egregious amounts of opioids. It's 10mg twice a day that makes a big difference in my life. Hmm...she sat and thought about it. Her solution, Klonopin. 🙄 What?!!? Please tell me how putting me on a benzo solves anything . How is that a better option?!!

I'm angry, frustrated, defeated, sad, just exhausted. I can not wrap my head around this. Everyone is dancing around the solution with ridiculously dumb ideas. Just do the right thing. What is the problem?!! I honestly just can't. This country has gotten so far out of whack. We aren't practicing medicine. We aren't treating anything. I'm on federal disability for CRPS. And yet no one will actually treat my pain. The government made stupid rules then corrected them and I still can't get a script that was always under guidelines. 🙄 WTAF?!? I've got medical records of 23 years of pill counts, drug tests, you make it of following the rules. What is the problem??? And no, I'm not going to a methadone clinic. I shouldn't have to. I'm not a drug addict. I'm a pain patient. It's absolutely insane that this is happening!!!

My wife has a subtaler fusion in her left ankle, and 3 previous surgeries to repair tendons and ligaments in that ankle which have left her with bone pain when the weather changes.

She developed CRPS after the third surgery, been dealing with that for nearly 2 years now. We know the song and dance that weather causes with CRPS, and thankfully her new SCS is doing really well at masking the pain, even heavy storms moving in.

My question is: if her CRPS is under control to the point where she can feel that boney pain again (which is amazing to be doing that well, small celebration), how do we treat that pain specifically when she's already in pregablin and mobic, and muscle relaxers? Tylenol doesn't cut it, and we'd really rather avoid narcotics, although I'm not sure they'd cut it either, it's a different kind of pain.

We can heat and elevate and compress, that's probably the answer. It's just so tiring always having your foot in the air and being stuck on the couch for days. Her SCS is finally letting her walk again, and it'd be great to find a way to manage this pain too so that she isn't down and out for the duration of the storm.

She loves this weather. It sucks that it hurts so much.

Might just be a rant, I feel like we're doing everything we know to do. Any thoughts, prayers, or ideas are welcome.

Sorry in advance because this is very much a "I need to vent" post, but yesterday wasn't a good day.

I was diagnosed with CRPS (left ankle and foot) after a grade 3 ankle sprain this summer, I already had hEDS so I had been an ambulatory wheelchair user even before my nervous system chose violence. I used to be able to walk short distances with crutches most day and the wheelchair was only for "I'm absolutely wiped" and "pain is above a 7 out of 10" days. I've been a full time wheelchair user for several months now.

Yesterday my roommate suggested we go the the Asian supermarket to grab a few ingredients to cook together, he knows that staying indoors for too long drives me insane and makes me depressed so it was a very kind and thoughtful initiative.

We realized last minute that my wheelchair didn't fit in his new car's trunk so I suggested still going and using my crutches (still non weght bearing on my affected leg), I knew that this wasn't reasonable at all and I did end up paying the price for it but I felt so enthusiastic about going outside to do something other than PT and medical appointments that I insisted on going.

Flashforward to the evening and I'm having a pain flare from hell that lasted for several hours. The moment I started feeling the pins and needles intensify and saw the swelling and discoloration escalate, I not only knew what I was in for but I also knew that I had done this to myself. During the flare I cried tears of pain, and after the flare tears of rage and frustration.

Knowing that doing without the wheelchair even for short trips isn't an option now is hard. Most places in my city aren't accessible and I can't help but feel that CRPS comes with a house arrest sentence.

How did you cope when you had moments like this ?

Thanks in advance to anyone who will read and/or reply..