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.

2.2k words, about 15 min read

A companion piece to last month’s article, Bad Vibrations: Increased Pain from Molecular Compressions. 

Vibrations are often highly unpleasant for those with CRPS, making riding in the car an uncomfortable or intolerable experience for many. People may limit time in the car or avoid going out to prevent being exposed to transit shaking. 

A vibration absorbing seat cushion—such as memory foam or an air-filled wheelchair seat—can be highly practical for reverberations coming up through the seat into the body’s core. However, seat cushions do not help with the vibrations that come up through the floorboard into the feet and legs. 

People often speak of their negative car experiences, so today I offer a practical, effective, and somewhat moderately priced DIY car mat to minimize transfer of rotational movements from the vehicle frame into the person. My personal assessment—which may not translate to your lived experience—is that this mat provides significant reduction for higher Hertz powertrain vibrations and moderate reduction for low sub-10 Hertz suspension system vibrations. 

I have tested this mat for several weeks now in a car with fair-to-middling suspension quality. The bumps and jostlings from road debris and potholes can definitely still be felt, but the harshness of impact is notably blunted. The constant hum of the car itself is much more effectively mitigated and makes a massive cumulative difference in ride quality, especially over longer distances or if making multiple shorter trips in a day. 

All together, this mat will be 2.4” to 3.25” thick, making it primarily oriented towards passengers. Users may need to move their seat backwards or upwards for comfort to prevent knees or hips from being at awkward angles, particularly for taller or lankier individuals. For safety reasons, drivers should not use more than the thin base layer to prevent pedal interference. Let’s begin.

Base layer

For the layer touching the vehicle floor, use heavy-duty butyl rubber matting. This is often advertised as “sound deadening,” “noise insulating,” or “vibration dampening” material. It uses low resilience to absorb lower-frequency structural vibrations and rumbles, turning energy into heat. These are often targeted towards those with large sound systems that tend to resonate through the vehicle’s frame, but they will serve the same function of muting vibrations from the road or engine. 

The most practical and cost-effective choice will likely be a 10sqft, 80-mil [0.08 inches or 2mm] thick option. This can be purchased online for about $20. Cut the pieces to the size of the footwell and turn 2-3 layers into one thick, solidly connected layer through their adhesive backing to maximize their density and ability to mute vibrations. 

The 10 square feet option I selected had nine 16”-wide pieces, which perfectly fit the width of my footwell. Three long covered my full footwell length, overlapping slightly, and then I stacked three high. This became a very solid, fairly heavy mat that filled the footwell quite snugly. Only the stack closest to my chair needed to have a small section cut out of the lower left corner to lay flat. I did the cutting before sticking all the pieces together, as each raised piece needed a slightly smaller section removed to keep a snug fit within the footwell. 

These butyl squares are generally intended to stick directly onto the metal chassis, and their adhesive is very strong. If you do not want the base layer permanently attached to your vehicle, do not remove the backing of the bottom-most layer. Instead peel the backing away by an inch or two in order to overlap the layers together and then smooth the adhesive backing flat again after they are connected. 

I recommend taping over the places where the adhesive backing is loose, so that any shifting during transit doesn’t peel it off and accidentally stick it to the flooring of your vehicle. Additionally, the edges should be secured with something like foil HVAC tape, roofing seam tape, poly film tape, automotive harness cloth tape, or gaffer tape to prevent the adhesive from seeping out the sides onto the floor during hot weather, especially if your car is carpeted. 

If you feel the need to have additional stabilization, you can use some heavy-duty velcro to prevent sliding or shifting. If you have carpet, you can use just the velcro’s hook-side and it will attach directly to the fibers. If the butyl mat is both several layers thick and sized to fit snugly in the footwell, it is likely heavy enough that it will not shift or slide and may not need to be additionally secured.

Middle layer

To help feet float over heavy vibrations that don’t get absorbed by the base layer, choose rubbery, high-density, closed-cell foam; specifically, use thick and flexible NBR [Nitrile Butadiene Rubber] (preferred) or EVA [Ethylene-Vinyl Acetate] yoga mats, approximately a 1/2" thick. Cut to the size of the footwell and stack loosely in 3-4 layers to a height of 1.5-2". While these can be purchased new for about $20, a used NBR or EVA yoga mat will work just fine and be much more affordable. 

Unlike the base layer, do not connect the yoga mat layers together with glue or other adhesives. Intentionally allow the middle layers to decouple with movement, which reduces the intensity of vibrations that make it to the top layer. 

To prevent shifting or slipping, connect only the corners together using elastic bands, silicone grip dots, or small sections of non-slip carpet mesh or cupboard liners, allowing the individual layers to slide just a bit without moving too much when getting in or out of the car. As an additional option for those who feel the need, you can also place a tiny square of non-slip mesh or grip dots in the center of each layer for a bit of extra stability while still allowing the majority of the decoupling movement that dampens the vibrations. 

When to replace?

The yoga mat will need to be replaced in 2-3 years as constant shaking and extreme temperatures will degrade it over time. Cabin heat during summer is the primary threat, but using a sun shield or tucking the vibration mat under the seat can significantly extend its lifespan. If you want your mat to fill the entire footwell, it will not tuck away well and you should pursue the sun shield instead.

Where is the most prominent slip point?

Personally, I have found that—without any form of added stabilization at the corners or center—the most sliding and shifting happens between the top two layers of the yoga mat closest to my feet as I get into and out of the vehicle. The butyl matting is too heavy to shift, the bottom layers of the yoga matting are held in place by the footwell, and the top-most layer grips the yoga mat quite well of its own accord. 

If you only have a little bit of additional grip to work with, I’d suggest prioritizing the gap between the highest yoga mat layers. A great deal of the shifting can also be reduced by adjusting how you get in and out of the vehicle, particularly if you are someone who tends to pivot on the heel of your foot, which causes the layers to pivot with you. 

Is there a practical difference between using three or four layers of yoga mat? 

I was able to tell the difference. It is noticeable enough to me that I put the fourth layer back in the stack, even though it raises the top layer above the door sill and significantly increases the shifting risk unless additional measures are implemented. For someone who has long legs or who really struggles with bending their joints or who isn’t able to raise where their rear end actually sits in comparison to the mat via a cushion or seat controls or who has significant stability challenges getting in and out, removing that extra half-inch to increase leg room or drop the entirety of the mat below the door sill may provide significantly more comfort and peace of mind than the little extra vibration reduction the fourth layer brings to the table. 

Top layer 

To absorb ultra-fine, higher-frequency hums, use a 3/4"-1" memory foam mat with a gel-enhanced or high-density polyurethane core and a vinyl or weather-proof outer layer instead of fabric. Too thin—such as a 1/2”—doesn’t offer enough density to absorb the hums, but too thick—such as over 1”—allows for too much jiggling. I found a thickness of 4/5” [0.8”] to be ideal for me. Those with very sensitive feet should avoid deep or heavy texture stamps on the vinyl. 

Cold temperatures will make the top layer extremely hard, so warm the cabin before driving or bring the memory foam into the house during wintery weather when not in use to keep the top layer soft and absorbent. 

To prevent slipping or sliding, get a mat that comes with anti-slip silicone dots or other treaded backing options and tuck the edges under the door sill or the footwell if there’s enough space to do so. 

When to replace?

If the rubbery layers of the yoga mats in the middle layers can be felt against the heels or if the memory cells remain collapsed or pop back up instantly instead of slowly melting back to flat, the memory cells have degraded and need to be replaced. Uncut mats will last for 12-18 months and cut mats will degrade faster. 

For those who prefer to buy a larger mat and cut it in half, use a sharp utility knife to size it to the dimensions of your footwell and seal edges with heavy-duty gorilla tape, HVAC tape, roofing seam tape, poly film tape, or silicone caulk to protect the foam against moisture damage. Keep the spare half as replacement for when the memory core begins to degrade due to "foam fatigue" in 3-12 months, depending on use and driving habits. New vinyl memory foam mats can be purchased online for between $15-20. 

Yoga Mat Testing

Not sure if the yoga mat you’re looking at is NBR or EVA? Firmly press your thumb into the mat for 5 seconds, then let go.

NBR is heavy for its size and feels gummy, doughy, and soft with a dull or matte finish, has porous or foamy edges on the cross-cut, and horizontal ridges or ribs on the surface. A thumb sinks deeply, and the dent stays visible for a few seconds before melting flat. It rolls tightly and easily, and will droop, flop, or hang like heavy rubber.

EVA is lightweight and feels firm, springy, plastic-like, and air-filled with a waxy or sheeny appearance under light, has solid and smooth edges, and often has smooth surfaces or is stamped with geometrics. It resists thumb-pressing, will pop back up instantly, and stiffly resists folding or rolling.

Avoid yoga mats made of PVC, TPE, or natural rubber.

PVC makes for very thin yoga mats that completely compress with a sticky or plasticky feel that smell like a shower curtain.

TPE makes lightweight yoga mats that bounce back quickly like EVA, but they lack shock-absorption and have a velvety or powdery feel.

Natural Rubber makes for incredibly heavy yoga mats that are usually very thin with a fabric-like weave on the back and an intense tire smell.

Additional Considerations for Drivers

Since most of the mat layers won’t work for those who need to operate foot pedals, here are three alternatives to consider in addition to the thin butyl mats. Drivers should aim to keep their vibration reduction methods to under ¼” [6mm] and secured to the floor to prevent safety hazards. 

⅛” to ¼” commercial-grade high-density SBR [styrene-butadiene rubber] or closed-cell neoprene sheets. These do not compress and absorb low-to-mid frequency vibrations.

3mm to 6mm industrial-grade anti-vibration equipment matting made of compressed recycled rubber compounds. These are tough, high-grip, do not compress, and are designed to mute mechanical hums from machines or treadmills. 

Vibration-dampening shoe insoles made of Sorbothane or Poron XRD, which absorb up to 94% of impacts and high-frequency mechanical shocks. This is considered the safest option for drivers as it is in direct contact with one’s feet and will never interfere with the pedal clearance.  

Quick DIY Reference

• 2-3 layers of solidly connected, heavy-duty butyl rubber matting, about 80-mil / 0.08 in / 2mm thick, seal edges, can use velcro to connect to vehicle flooring for extra stability
• 3-4 loose layers of NBR or EVA yoga matting, total height of 1.5-2”, connected only at the corners with optional non-slip mesh at the very center for extra stability
• ¾”-1” memory foam matting with weather-proof exterior, high-density core, and anti-slip backing, if possible tuck edges into sill or footwell to prevent shifting

Closing

This DIY vibration-absorbing mat is customizable to the size of your specific footwell dimensions, easy to replace in sections as parts degrade over time, and can be made as thick or thin as you need it to be for optimal vibration reduction. May you find this as useful as I did and may it greatly expand your quality of life and transit comfort. 

Thanks for sticking with me, I hope you learned something, and I hope to see you next time.

Just wanted to share that I’ve been excepted into a clinical trial for CRPS type 1, pain management! I am over the moon and will update what I can as I go along for those interested. 🥰😁

I know this frustration is never going to end as she will never understand.
My mom constantly invites me to her house on Sundays to sit and “go out to eat”. This issue is even though I have CRPS, I work full time and have my own home. I am “lazy” aka pajama day on Saturday after getting up at 6:30 am 5 days a week, working 8 hrs and barely sleeping the night before. Sunday I usually get my groceries or get a few errands done and clean my house. I try to push it. My mom keeps on wanting me to go to birthday parties for family members or just go to her home to sit. She lives a good half hour away. She doesn’t understand the stress my body goes through and the fact that I don’t get to rest through the week. I’m frustrated. I have tried to explain this to her. She continues to not listen.
Once again this weekend she asked me to come out. Once again I told her no. This morning she once again asked me to go to an event in January. I’m mentally tired. I’m tired of explaining to my own family why I can’t do something or why I want to stay home.

Please help: I have tried everything to lessen my nausea after taking hydrocodone for chronic lumbar pain—nausea pills, crackers, kefir, etc. Nothing works—anyone ? advice?

As the title says, my flareup days are getting worse, and my doc won't prescribe anything other than Buprenorphine. This doesn't help on my bad days, and all they'll do is send me on for regular Qutenza treatments. Not really feeling too confident about this one.

I think I just need to rant for a minute because I'm honestly so overwhelmed with everything right now. I'm supposed to be heading to my GP today, and I have so much on my mind.

I've been having such a frustrating experience with my rheumatologist. Every time I see her, it feels like I'm being told the exact same things over and over again, and I'm honestly starting to feel like I'm not being heard. It's always CRPS this, CRPS that, and then, "Oh, your blood pressure is good today!" Like, respectfully, I don't really care about my blood pressure right now. I'm sitting here suffering in serious pain, and it feels like she doesn't understand just how much I'm struggling.

And apparently, I'm dealing with both CRPS and fibromyalgia, which I honestly didn't even realise you could have together. Double trouble, I guess. 😭 The craziest part is that I only discovered the fibromyalgia diagnosis because I actually read my referral to the neurologist. There it was, typed out on paper: CRPS AND fibromyalgia. The first time in roughly six months that I've seen fibromyalgia mentioned in anything relating to my care. My rheumatologist has only ever really spoken to me about CRPS during our appointments, so imagine my surprise when I find out there's apparently another condition in the mix that I wasn't properly aware of. Like, wow, thanks for the surprise diagnosis!

Last week, I also mentioned something that genuinely concerns me. I've been having episodes where clear fluid pours out of one nostril, almost like someone has turned on a tap. It's not just a couple of drops, either. It can be a ridiculous amount, and it seems to get especially bad when my chronic migraines hit. Instead of really explaining what might be happening, my rheumatologist told me to stop taking all my medication and see a neurologist.

Now, I've wanted to see a neurologist for a while, so I'm not against that at all. But being told to stop all my medication has left me confused and honestly a little scared. Maybe she has her reasons, but I don't fully understand them. My medication doesn't even seem to help much anymore, but I've become so attached to having something to take that the thought of stopping everything is overwhelming. I've been dealing with this for so long that medication has become part of how I cope, even when it barely helps. I'm still suffering every day, and it's not just migraines. My entire upper torso feels like it's on fire, and I'm struggling to cope with the pain. It's like we're focusing on one problem while I'm still left trying to manage everything else.

And there's another thing that makes all of this even harder. I can't even seem to experience intense emotions or cry without triggering a severe migraine almost immediately. Imagine not even feeling like you can have a proper emotional breakdown because your body might punish you for it afterwards. Sometimes I feel like I have to hold everything in just to avoid triggering more pain. Everything is so sensitive that even the slightest touch can hurt, and I genuinely feel like I'm going to shatter if someone touches me. I know that sounds dramatic, but that's honestly what it feels like living in a body that reacts so intensely to everything.

Today, I need to explain all of this to my GP and ask for a referral to the neurologist, using the referral from my rheumatologist so I can hopefully get some financial assistance with the consultation. The frustrating part is that even my GP doesn't seem to have a clear picture of everything that's going on with me, so I feel like I'm constantly having to explain myself and piece everything together.

I've also asked my rheumatologist for copies of my medical notes, and she hasn't responded. Now I have to ask my GP to request them on my behalf. It's exhausting having to chase people for information about my own health when I'm already struggling so much.

And honestly, I'm scared of seeing the neurologist. Not necessarily because I'm afraid of the appointment itself, but because every time I learn something new about my health, I feel like I'm discovering another thing that's wrong with me. It's starting to affect how I see myself as a person. Sometimes I feel so overwhelmed by everything that I don't even know what to think anymore.

Sometimes I worry that I'll eventually become unlovable because of everything I'm dealing with. I don't know why I put so much pressure on myself when it comes to love and relationships, but lately, I've been questioning whether I even want to pursue them. I feel like an absolute mess of problems, and the last thing I want is to become a burden to someone else. Who wants to deal with someone who's constantly having flare-ups, struggling with pain, attending appointments, and trying to figure out what's happening with their own body?

But the truth is, doing this alone is hard. The flare-ups, the uncertainty, the constant appointments, the frustration of not feeling heard, and the emotional toll of living with CRPS and fibromyalgia are all becoming a lot to carry. It's not just the physical pain anymore. It's affecting my confidence, my emotions, my independence, and how I imagine my future.

I'm so grateful for my mom, who continues to support me and comfort me when things get bad. I honestly don't know what I'd do without her. Having someone who understands that you're struggling, even when they can't take the pain away, means more than I can explain.

I guess I'm just tired. Tired of hurting, tired of trying to get answers, tired of feeling like I have to fight so hard just to be taken seriously, and tired of feeling like my own body is working against me.

I don't even know what I'm looking for by posting this. Maybe I just need to get it off my chest, or maybe I need to hear from people who understand what it's like to live with CRPS, especially those who also have fibromyalgia. Does anyone else feel like the emotional side of chronic pain can sometimes be just as difficult as the physical side?

Hope everyone has a good day ❤️ I'll update what my gp says today.

I need help. Google isn't being helpful. My doctor wants me to try the SCS for 5 days. Honestly. I'm petrified about any sort of spinal procedure. I'm reading a lot of good about them. But i want real experiences, and I want to know how it changed your lifestyle.

Tell me EVERYTHING because I'll be damned if CRPS is the reason why I won't be dancing at my wedding next year.

Edit to clarify: I'm asking the really sensitive questions here. Did it change how you sleep, your sex life, your way of bathing, etc. My husband is freaked out about it, and so am I. We are terrified that I will wind up with a pointless device in my body that changes everything for me.

Been suffering from flare-ups for the past 10 days, and my pain doctor flat out told me that there is nothing else they can do other than another trial of a stimulator (tried the Nevro, but they want to try DRG).

Sadly, my insurance is pushing back telling them that they don't believe the DRG trial will work.

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.

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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?