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Does anyone have a rec for a doctor who really knows CRPS but won’t insist on a SCS? I really don’t want to go that route but I have been turned away by two docs who insisted I get one and if I wouldn’t they could not help me. Frustrated and in such a bad flare/spread

I think I spelled it correctly but has anyone had a ganglion nerve block? It’s my next step for my CRPS in my dominant hand from a work injury and honestly, I’m feeling uneasy about it.

hi guys so i got a MRI of my brain and it has a bunch of tiny little white matter spots and neurologist and i are stumped. Not a diabetic, no migraines, no high blood pressure, no cardio issues, lol im 22 not 60, and i dont have MS. So i google searched can crps cause white matter spots in the brain and they said yes it could. They also said it affects the white matter in the central nervous system, thats what made me think to search for crps. I have a phone call with my neuro in the morning so i thought id ask u guys if this sounds like spreading crps? bc realistically there is no concrete reasoning as to why 3 years ago my CT was clean and now its lighting up like a christmas tree.

TL;DR: L&I seems to be sabotaging my diagnosis and treatment, refusing to accept CRPS and manipulating things to push me back to work without appropriate support.

About 6 months ago, I sustained a crush injury to my dominant wrist. It was initially treated as an occult scaphoid fracture but recorded as a contusion and sprain by workers' comp. I work as a cook and wasn’t properly accommodated, which led to my condition worsening until I was pulled from work in June.

About 6 weeks after the injury, my symptoms worsened, and 3 months in, I was referred to an orthopedic specialist who suspected early CRPS type 2 but noted that it might not meet full diagnostic criteria yet. My primary doctor later diagnosed me with CRPS as my symptoms continued to progress. Since then, I’ve had worsening symptoms at every appointment, with my primary doctor advocating for me strongly.

Here’s where it gets suspicious:

1. My original ortho retired, and I was referred to a new one. L&I changed this new doctor to my attending physician without my consent. I reverted back to my primary doctor within 2 days, but L&I still sent APFs, job offers, and documents to the new ortho, who signed off on light duty work that wasn’t appropriate.

2. The new ortho cleared me to drive one-handed (in Washington’s winter weather, with icy, winding roads) and said my employer would give me breaks. My lawyer pointed out that L&I shouldn't be prioritizing this doctor’s APF over my attending physician’s.

3. L&I sent an incomplete medical history to the IME, omitting 3 months of critical notes since my diagnosis, which led to the IME confirming only a contusion/sprain 6 months post-injury.

4. The IME signed off on a light duty job offer but misunderstood the form, thinking the person offering the job was the position itself. He restricted my grasping and movements yet approved a hostess role that required frequent use of my hand.

My concerns:

Is L&I intentionally bypassing protocols to avoid acknowledging my CRPS?

Has anyone else faced L&I changing their doctor and using that new doctor’s APF over their primary’s consistent recommendations?

How can I fight the contusion/sprain diagnosis when the IME had an incomplete history and didn’t record obvious CRPS signs visible during the appointment? He noted 2 in the appointment (burning pain, and poor ROM & strength) but not others. I did record it though so you can see my arm is red aswell. That's 3 of the criteria met, 2 records, but only 2 is needed to be witnessed at an appointment for diagnosis. The rest unfortunately are either not visible or not recorded (types of pain sensations, my arm being freezing etc)

I’ve been given a 10% impairment rating, with my doctor saying I'm at max medical improvement. The IME disagrees, which makes recognizing my CRPS diagnosis even more critical for proper treatment. Any advice on fighting this would be greatly appreciated—I can’t drive or manage full shifts under current conditions, especially in winter. I am barely functioning and still waiting to be approved for OT and pain management - I've only gotten worse. The idea they are going to make me drive (either one handed or disregard my APF to use both), and work for 8 hours is so scary - it's already spread up to my shoulder, and I am so scared if I don't get this treated, and do things that will aggravate it, it's going to spread even more. I can't even see myself making the drive there, let alone the rest of. And they just won't accept my diagnosis.

Does anyone have any stories or experiences with mirror therapy to share?

I recently went to a new clinic where the doctor recommended mirror therapy to help treat CRPS in my lower-right leg.

If it helps, I got CRPS as a result of an accident. I have had it for over 4 years but was diagnosed somewhat recently.

Looking for any experiences with Pulsed Radiofrequency (PRF) to reduce CRPS pain. My doctor is recommending it since my stimulator effectiveness has been low for a while and flares have been bad (feet/ankles).

Important Note: PRF is different from traditional radiofrequency ablation.

Instead, PRF is a non-destructive alternative.

More info here:

https://pmc.ncbi.nlm.nih.gov/articles/PMC2913603/

Thanks for your help!

Not Duke.

Does anyone else have issues with the skin on their affected limb peeling off as if it had blistered and popped? How do you prevent this?!

This is a symptom that first happened in April. I woke up one morning before OT and my skin looked as if it blistered and popped overnight. This continued for 2 days until ALL of my skin on my hand had fallen off and my hand was, along with all the other usual sensations, raw. I began making sure to lotion at least 3 times a day, even when it was extremely painful to do so, and I hadn’t had an issue… until this morning… once again, I woke up to my hand looking as if it was covered in blisters overnight and they popped leaving behind tons of peeling skin. I know this is going to led back to that raw feeling.

Due to work comp, I cannot see a dr about this.. two weeks before the first time this happened, my dr said without a SCS he would no longer see me but also didn’t put me at MMI; went to court for the stimulator in June and it was ordered however no surgeon in my state implants SCS and work comp is fighting going out of state… in the meantime I await another court date and cannot seek medical care linking to my CRPS… so frustrating!

Dermatologist diagnosed my 22GF with TE and didn’t provide much help because her CRPS is essentially the cause.

I’m not a fan of her being blown off like that so I was wondering if anyone else with CRPS is experiencing telogen effluvium and had any insights.

I’ve spent quite a bit researching and have a routine prepared for her TE but was curious if ketamine pill/cream, clonidine and Lyrica is causing her TE. Potential side effect?

How do you cope with the weather change? I’m newer to CRPS and the cold weather has brought me back to being bedbound most of the time again. I had been able to leave the house 1-2x a week during the summer and things seemed better. Now it feels like I’m fresh out of surgery and nothing that used to help is working.

My head is trying to make sense of things.

I think I was told it’s not that I don’t have CRPS, but that there might be an underlying cause… TOS.

I’ve got some swelling and a growth on my one limb without CRPS my doc thinks could be Thoracic Outlet Syndrome (TOS). The surgeon she wants me to see is booked out 8 months and she said I can’t wait that long to see them.

The idea of having surgery to address TOS is terrifying… fix TOS get CRPS?

Looking for all the things I should be asking and at what point I should be seeking emergency care, my one arm is 2ish” larger than the other arm.

This sucks

I guess a little backstory about myself. I am SO sensitive to most medicines (including about everything that treats this). I’ve had this beast for 13 years and was in remission until I had 2 ankle surgeries. The only medication I can handle is very small amounts of Gabapentin, Klonopin, and Silenor (Doxepin). I’ve taken that for fibromyalgia and it doesn’t really help this. The weird thing is that antihistamines are basically the only things that help me with this pain that don’t give me major side effects except the loopiness that I don’t love. Does anyone else here have sensitivity issues with CRPS drugs? Other drugs that have helped that are really off label? I really don’t want to go the stimulator route and I’ve been doing a lot of non invasive neuromodulation techniques which so far have not helped. I’ll try anything at this point. I might try Memantine next and at this point I’m doing my own research from studies to try drugs that have been in small clinical trials. I may ask for an opioid at my next visit but doubt I’ll get one.

Hey friends

I’m looking for some advice or help from anyone that has a SCS. This is a bit of a long post to explain everything, so I appreciate your help! I posted in the SCS sub and didn’t have any luck with help.

*edit: I have CRPS in my left leg and flares to my right leg.

TLDR: Has anyone had the parasthesia move from the area that it’s supposed to be stimulating (my left leg, for example) to a completely different body part, and cause pain or irregular symptoms? Without the leads breaking or migrating?

I had a Saluda Evoke trial in June for 7 days, then the permanent implant inserted in the start of July this year. I then had a revision surgery in September to replace and reposition the leads. 

I had a great trial and it was all very exciting and promising. My permanent SCS started off great but then the parasthesia started to migrate to my right leg, then my hip bones, and then my abdomen. I could literally feel my bowels and kidneys being “squeezed”. My hips felt like they wanted to snap shut into the foetal position. I started to feel nauseous and my urine output began to be reduced. 

I went through several reprogramming sessions within a few weeks. During some of these, the parasthesia would be painful, or in my spine, or I would feel instantly dizzy. When the stim was turned off, all of the symptoms went away. My leads were in T12-T9 but nerves in different vertebral regions were being stimulated. The reps determined that most of my symptoms were being caused by the right lead.

I had an X-ray and nothing had broken or moved. I had a revision surgery in September to replace and reposition the leads. My PM moved the leads to another epidural area and move them 1 vertebra higher and now in T12-T8

Again, I had moderately good results for the first couple of weeks but it has started to shift again. Which was incredibly frustrating and emotionally exhausting. My med reps explained that whilst I had good coverage right after my surgery, it now appears that ~ 95% of the leads aren’t connecting in the appropriate areas.

My PM or medical reps cannot understand or explain why this is happening to me. My med reps had a fricken global meeting to discuss my case and no one had seen anything like this, nor could they explain it. There aren’t any medical reports or journal articles documenting this that I can compare or reference.

My PM has explained that CRPS can mess with the entirety of our nervous system (obviously). It can be unpredictable with how it affects us and this could be causing the negative side effects.

I dunno though. I have to admit, that I call BS. It seems like a weak response. Because if that were the case, surely there would be more people with these issues?

If you have made it this far, I am seriously thankful. Anyone with any advice or similar information would be SO helpful.

Hello all! I do hope everyone is feeling at least half a number better than normal today!

So, back in the beginning of September we finally moved from our house to our RV, to save money, downsize a little, the usual. Anyway, I had bought an RV that I fixed up over the course of three months. All was well, right? Nope. First night, one of my cats gets out and I was home alone, I went all over looking for her, finally found her, put her back inside and then fixed how she got out. Just to go back inside and one of my other cats has somehow gotten out, she came home two days later. The first kitty, sadly and suddenly, passed way less than a week later. Ever since then, husband doesn’t want to be home alone because that sweet little kitty passed way on the couch.

So, since then I have been looking for another RV to move into. My credit sucks, so private party sales only. Great! Huh, not so great. I don’t have ten grand in my back pocket. Anyway, long story short, one of the people who live in the same park I do was moving out and didn’t want to take their RV with them. The space rent is less, the RV is bigger, and closer to the laundry room. We finally signed the contract about a week ago. Husband also quit his job a week ago (he had one lined up before quitting), so since he was home he did a lot of the packing and what have you. I’ve been alternating between a flare and working for my mom.

I was under the impression that the camp host wouldn’t care if I was taking up two spaces, so long as the rent was paid. Well, she cares. Ok, so there is cleaning to be done that I was unaware until 3 days ago! I mean massive massive cleaning! Tobacco and weed smokers, indoors, no windows open for over a decade. Left his pets there, alone, for months without cleaning up after them. Cleaning that should have taken a week, we have finished in two days. While I hurt like there is no tomorrow, I’m really proud.

Alright, if you don’t want to know exactly what I’ve been up to, feel free to stop reading now. If you do want to know, well, it started innocently enough. Wipe down the inside of the front door. Great. Easy enough. I have great cleaners, and I was a janitor for almost 20 years. So, the door lead to me looking up and seeing the ceiling is the same color as the door used to be. So, wipe that off. In about an hour I had the front entry way scrubbed to white. Yay! I just kept spraying and scrubbing until husband told me it was time to be done for the day. It was 6 hours later! What the eff!?

Now today, oh today, I had to scrub the kitchen sink, scrape out the ice buildup in the freezer, cleaned and polished all of the cabinets, scrubbed the floor by hand, did some carpet shampooing (hand held model as RVs do not have a lot of space), scrubbed the bathroom from top to bottom: including but not limited to removing all the cobwebs, fixing the leak in the bathroom cabinet by tarping outside, scrubbed the shower to the point of finding and fixing two holes in the shower floor, scrubbing the toilet and managed to remove the gunk holding the seat to the toilet, I had to take a metal putty knife to the floor to get the cat litter (new, used, wet, dry, you name it) off the floor. The bathroom floor alone took me over half an hour, crouching the whole time. It looks so beautiful now!

I am very aware of how bad this is going to catch up with me. But I’m hoping it will hold off until husband starts his new job on Monday. After the cleaning, we moved the cats 5 in total, and the cat things, our mattress, and blankets. Done for the day. We are at my mom’s house to shower, because ours has to cure. Oh as a final eff you from the old rv, it started leaked, hard! The bottom two feet of the mattress is soaked, and it dripped on husband’s face, waking him up. And in the PNW, the rain is cold.

But seriously, I haven’t done so much since my diagnosis. I’m really hoping it doesn’t backfire. I hope everyone is having a productive time! Or if not, I hope you are happy. May your pain leaves you alone, and your happiness overflow. 🧡

This weekly thread is for those without the combined karma to make their own posts, and a general location to ask questions or provide support, especially for our newer users. If your posts are getting auto-removed by the subreddit filter due to account age or low karma, you can post your question here.

We ask that our community members regularly check this post for new content, and reply where they can. Please abide by our subreddit rules, and be kind to each other!

Please help, tried asking many times please please!Almost every 5-16 minutes my right eye twitches with pain, severe cluster headaches, left bottom lid hurting - I’ve posted more than once trying to get help

I am a 32 year old female, living in South Africa. 5”2 and weigh 59kg. Suffer from CRPS (based in C Spine), hyper mobility disorder and epilepsy, on top of mental issues. For the last few months I have this constant eye twitch between 5-15 minutes apart. I am extremely light sensitive, I’ve kept myself indoors because the sun just sets it off and makes the pain even worse! I’ve tried everything warm towel over my eyes. Different pain killers that didn’t really help. I honestly need guidance because my doctors are kind of at loss, and any information that could be helpful and pass on to my doctors as a option to investigate

Doctor has started prescribing quite a few compounded medicines that aren’t covered by insurance, was wondering if anyone had any means of acquiring these cheaper?

I saw somewhere that GoodRx and focusscript have a card, that’s all I have seen as of now. Thanks for any help. I’m in the US, California.

WIth Monday being this year's CRPS awareness day, also called Color the World Orange Day, I will be seeing 2 of my regular healthcare providers that day, both of which have been amazing in handling my CRPS, and I'm so grateful to them. I have had so many bad experiences over the years, as I'm sure you all can relate, so I wanted to do something small to acknowledge them on this day, maybe orange-themed or somehow related to CRPS. I'm looking to keep the cost relatively low, and preferably something that can be gifted to the offices as a whole (or maybe several little things).

With it just being Halloween and everyone overloaded on candy, I don't really want to do something sweets related. One of the places got plenty of sweets brought by patients when I was there yesterday for Halloween. I thought about maybe orange flowers if I can find it, but I'm still looking for other ideas. Anything you can up with or maybe have done in the past?

TIA!

For a long time i saw my chronic pain and a rotting pit i was sinking into, clawing at the walls trying to get out but watching the light above me grow smaller. But overtime as i began to accept it i started seeing it as a cave. Its dark, hard to navigate, i don't know the way out, but the cave has hidden treasures, there is life hidden in the cave if you look close enough. My crps ruined my life, and then it forced me to look inward and deal with my insecurities and trauma because when you are bedridden and cannot move for months, all you have is your mind, so you HAVE to make it a safe space. So i worked my ass off doing therapy and meditation, one night the pain was so bad i meditated for 6 hours straight to distract myself. Because of this i learned important things about myself, solved issues in my heart that would have taken me so much longer if i wasn't forced to do it. Now, 5 years after getting crps, im slowly recovering with treatment, and my mind is a safe place. Im at peace with myself, and my life.

My OP was removed and I was asked to reword it:

I had an accident at work in 2022 which caused me to have a spinal fusion which didn’t work followed by an SCS which does nothing. I’m in pain everyday, usually it’s a good day if my pain level is under an 8. My feet hurt to the point of wearing shoes is an issue. There are more nights than not that I wake up several times to try to get comfortable but my legs hurt so bad I could cry. It’s all from my lower back down, mostly on the right side. My surgeon finally said “failed back surgery syndrome” and then discharged me from his service. I’m absolutely miserable and have lost mostly everything I once enjoyed. I never want to go anywhere because I know that at some point the pain will be so severe I need to medicate and try to lay down. I don’t even recognize myself, feels like I’ve aged 20 years in the last 2. Someone posted something I could read on my original post, please post it here.

Hey everyone! This is probably an odd request but I figured where else better than to ask here. Right now I’m in an EMT class and soon we will be going over special patient populations such as patients with chronic pain, and with all the EMT courses I’ve taken before not once have I seen CRPS in a textbook. My mother has had CRPS for 30+ years, so I asked my instructor if it would be alright if I could possibly do a small lecture about CRPS. So I’m asking for all your help to possibly DM some photos of your flare ups, or other signs an EMT would be able to see and assist you. I am very passionate about getting my classmates to know about this disease and to make all of us better providers. I have information from my mother, but I would love to get some other info from anyone here who is comfortable to share. :) I’d also like to know if there is anything EMS can improve on if you have needed their assistance before because I’m sure most of them have not heard of this disease. I know my instructor who has been an EMT for 20 years hadn’t until I inquired about this and he is really interested in hearing about it. So any and all help you guys would like to send me, or comment here is much appreciated :)

Almost a month ago, I posted about being very upset because of repeated episodes of vertigo. See Previous post

I have since been referred to an ENT and had a diagnostic audiogram. If they can't find anything, then the next step is a neurologist. All of this is months away... waiting lists! Anyway, in the meantime I have seen my psychologist and mentioned this to her. She has told me about persistent postural perceptual dizziness. I hadn't heard about it before.

Here is a link to some information about it - https://www.ncbi.nlm.nih.gov/books/NBK578198/

I was so upset in my previous post because I was very scared that I had POTS, a condition that is often found in people who have CRPS. I am just starting to manage my CRPS and have some kind of life again, and the thought of another debilitating chronic disorder quite shattered my equilibrium!

PPPD seems like it may be more manageable than POTS. I don't quite understand it fully, but that is my impression so far. I thought that others that struggle with vertigo may find this information interesting.

CRPS is known to cause mood disorders and such… this is something I’ve known since diagnosis. Before CRPS, I’ve always had sensorimotor OCD (hyper awareness of body). After my CRPS diagnosis, I was diagnosed with adjustment disorder. Which made sense because I’m a 31F that can’t do anything I was able to 3 years ago. However, I didn’t realize any correlations within the 3 diagnoses until this morning…

A part of Sensorimotor OCD is a fear that your body will not return back to normal; adjustment disorder is a lack of acceptance of the situation; CRPS is a constant state of pain and sensation…. So I’m in a vicious cycle.

So somehow I have to convince myself to accept I won’t be able to do anything I was before (while somehow staying positive that remission could be a possibility) and that it’s okay for my body not to return back to the way it was.

For me understanding makes everything easier to process, which has been one of my downfalls with CRPS because it seems like no one fully understands CRPS.

So I have CRPS in my right leg, it took 2 years to diagnose and almost 10 doctors before somebody gave me a diagnosis. I’ve had nerve conduction studies, imaging, biopsies, a SCS that’s now failing, injections, medications and an epidural.

Do you ever feel sometimes like your body hates you? It’s 3am here and I slept 2 hours before my pain woke me up. I’m so tired of being miserable all the time. I feel it oozing into my relationship when I snap at my partner before I realize it because the pain is driving me bananas and I’m just trying to manage myself. It’s like my body is the volcano from science class and my pain teeters at the 8-10 all day when it hits the 10 I’m like a snapping turtle. It’s just so hard to control emotions when you’re in pain. I’m juggling being in college full time, I’m graduating with a masters in social work on May, doing a practicum at a mental health clinic right now. That is killing me slowly right now, being out and about 7-8 hours a day. The pain is so overwhelming sometimes I just don’t wanna do anything. I just wanna lay in bed but I never have time. Does anyone else feel like the pain controls every aspect of who they are and what they do?

Basically what the title asks... I'm wondering if anyone has tried this and if you have had any relief at all...

Hey all! 30F and currently on the hunt for answers about my chronic pain and im heavily leaning towards CRPS and pushing for a referral to a pain specialist.

So my chronic pain is complex for sure. I had a TBI in 2014 which is when all this started. Ive also accumulated a handful more joint injuries since which make it all worse.

Has anyone been diagnosed with CRPS due to a TBI? How did the hunt for a diagnosis go?

Today is surreal, my custom wheelchair was delivered and adjusted. There is now a wheelchair designed and fitted just for me staring at me from across the room.

I fought needing a wheelchair for bad days for 15 years, and started the process of being fitted and ordering my chair in May after spread and an accident in public that could have been easily avoided had I not been so stubborn.

It’s going to take some getting used to, and I don’t know if/when/how I’ll be brave enough to use it in public. I’m not stoked about the looks and whispers etc that come from being an ambulatory user, But my chair is one more tool in my toolbox.

It feels strange, I’m sad, and excited, and scared.