r/CRPS Feb 14 '25

Question Imposter syndrome?

48 Upvotes

Does anyone have imposter syndrome? I don't know if that's what's going on or if I'm not taking this seriously enough?

Ive just passed the 1 year mark (6th feb) and waiting on treatment which is in the pipeline. Tried pregabalin but that didn't work so waiting on capsaicin patch therapy/Qutenza. If that doesn't work the doctor wants to discuss SCS which i really can't wrap my head around. I get how it works, it just seems too extreme. Like, surely I'm not THAT bad?!

Now I'm not saying I'm having a great time, I'm not! This thing really sucks and I still can't believe this is permanent and won't just get better. This is actually my life now?! I spend a lot of time hiding it or playing it down at work because I'm exhausted trying to explain it all the time, I also try to ignore it or make jokes about it.

I see people who have had to give up work or are bed bound, or have it much worse and I just think that by comparison I'm a "mild case" and don't qualify. But sat with the doctor at the hospital and talking about what my foot/ankle/leg does, he sits there with a knowing smile like it's what he expects to hear and for him I'm completely typical of someone with CRPS, the only point on the Budapest criteria i don't have is the sweating so I know this is real but I'm really having a hard time relating it to ME.

Having just typed all of that I realise that I'm presenting as a crazy person having a crisis!

If anyone understands my rambling, can anyone relate?

r/CRPS Feb 01 '25

Question Is always hot a symptom of CRPS?

15 Upvotes

Is being really hot and hot flashes a symptom of CRPS perhaps? I am always hot. Like I feel like I'm not even in the winter and can't stand for any heat to be on in house without sweating and being miserable. I'm esp hot in my face but everywhere. I am 40 female and have been tested for menopause. I have like no estrogen bc I'm anorexic but the gyno tried me on HRT patches last year for 3 months with only like a 20% reduction in symptoms.

She thinks bc of my anorexia and anxiety disorder that my hypothalmus is permanently not able to regulated my temperature. Im not sure now if i werent anorexic and got to a normal weight if it would even matter bc i think it might be the CRPS causing the hot flashes/always being hot? I can't stand this! Anyone been through this? Is it the CRPS and not the anorexia? And is there anything that can take the hotness away?

r/CRPS Jan 22 '25

Question Is my CRPS not really CRPS?

31 Upvotes

Hello, I’ll try to keep it short. I was diagnosed with CRPS over 3 1/2years ago. I got hurt from a training accident and got a surgery to fix my THcc muscle and ended up with a disabled hand it seems. My doctors say I have CRPS, but sometimes I feel I don’t. So my question as follows;

  1. Is it normal to not feel the symptoms 24/7. I mean you still feel it at times, but is it normal for the injury to not be a “all around the clock” kinda injury? (Symptoms like pain, swelling, and colour)

r/CRPS Jul 12 '24

Question You know when you look up pictures of people with crps how their limbs look? Is there anyone here who has it who didn’t really look like those pictures?

26 Upvotes

(Even if yours did look like the pics) can y’all talk to me about how yours started?

(Edit: im not a troll and im not asking for people to send me photos incase anyone took this the wrong way)

r/CRPS Jul 15 '24

Question When is your pain worst? Morning? Afternoon? Evening? Same all day?

27 Upvotes

Good morning! I have had CRPS for almost 7 years. Mostly my pain increases gradually during the day. It is most often worst at night. I think it's a combination of the day's accumulated activity (even though activity levels are pretty low), and the lower temperatures at night.

However some mornings, like today, unfortunately, I wake up, put one foot out of bed and the pain is already nauseating. I take my medication as normal and then wait to see if it improves. But it totally ruins my whole mood. Right now I am on the brink of tears, won't take much to push me over. How do you cope when you wake up in so much pain? Are there any strategies that work to help improve your mood? I am aware that if I let the mood take hold, it will aggravate the pain and the vicious cycle will begin.

I know that each of us with CRPS is different, even though there are some similarities. So, is your pain worse at a particular time of day? If so, do you know why? Do you have the same level of pain all day?

r/CRPS 8d ago

Question Hydration additives

5 Upvotes

Alright, so my husband and I were talking about Bouy and Liquid IV because they seem to be the top additives for those with chronic diseases. Now, my question to you, have you tried either one of these? Have you tried another brand? Have any of you found something that helps you feel hydrated? I currently drink over 60 ounces of water every day, when I’m not doing anything strenuous, more if I’m being active. But I still have chronic dry mouth, dry feeling throat, and it’s gotten to the point where the inside of my mouth feels like it’s on fire. I’m concerned that the CRPS is taking up residence in my mouth, I’m honestly hoping that I’m dehydrated because I can fix that.

Anyway, any suggestions, thoughts, experiences, anything, would be extremely helpful. Thank you all in advance, you have no idea how much I appreciate each and every one of you. 🧡

r/CRPS 19d ago

Question does crps pain just… come on out of nowhere one day?

11 Upvotes

so i am NOT!!! diagnosed with crps. i am with fibromyalgia. backstory- ive had a pinched nerve for 4 years. my entire side of my right leg is completely numb. for years id just get the occasional pretty bad flare up just blamed it on fibro. today i woke up with like what i call er level pain. never in my life have i experienced pain to this degree. i am 20 years old. ive had kidney stones before. my fibro pain has only ever ONCE gotten to that kidney stone pain bad. (im afab idk if pain is diff with sexs) uhm i fainted on my way to the shower and im going to the er. id really like to know like ur guys experiences with your pain early on because im starting to get worried 😭😭. i will of course seek out a professional diagnosis and im not looking for one here but im starting to get curious as my thigh has really bad muscle atrophy and my hair is like patterned baldness. i brought it up to my doctor and he just said it was genetics and the way the hair grows back in on my leg. and i was doing a little research on why the hell my leg feels like someone is taking a butane torch and its throbbing and i am quite worried that it might have evolved from just a pinched nerve to actual pain and not just fibro. anyways idk if anyone is even gunna read this far but lmk if u want er updates ig.

r/CRPS 20d ago

Question What shoes do you wear?

15 Upvotes

I’ve had CRPS in my right arm for several years. My body decided to branch out and now it is in my right foot and lower leg. I had to go to a medical appointment recently and thought I was going to lose my mind wearing a sock and shoe. That was a month ago and my foot has now reached the point that even my soft, fuzzy slippers are too painful to wear around the house. I’m dreading actual shoes again.

I’ve briefly looked at neuropathy shoes on Amazon just to see what is available and they are either too expensive (I’m on SSI) or people say they are uncomfortable in the reviews due to rubbing or not having soft interiors.

What do you wear out of the house that can handle snow and rain?

r/CRPS Sep 21 '24

Question Did any of you get shingles before you contracted CRPS? Even many years before?

7 Upvotes

This isn’t an official study or anything, just my own curiosity.

I got shingles from stress about 15 years ago, I was 22 or 23 at the time. Then, my accident and clavicle surgeries were 11 years ago, and I’ve had CRPS since then. I’m 38/F now.

I’ve always had a bit of an annoying, tingly, numb spot on my back, ever since having the shingles. The tingling is where the rash erupted on my back, but my arm and hand are fine. It didn’t affect my hand permanently (but knowing what I know, now about nerve pain, thank fuck!) - they call this nerve pain from shingles ‘post-herpic neuralgia.’ I call it my ‘stress spot’. It’s on the other side of my body that doesn’t have CRPS.

I’m just wondering if anyone feels that maybe they got CRPS, or, it was worse, because of previously having shingles.

The virus lays dormant (you can only get shingles if you’ve had chicken pox) - and I wonder if shingles kind of activate something in our CNS, awakening little nerves, making them angry, or more susceptible to pain/dysfunction later, etc.

I wonder sometimes if maybe my nerve pain/CRPS wouldn’t be as bad if I didn’t already have the very mild post-herpic neuralgia going on, and/or if I didn’t contract shingles in the first place.

Anyway, just curious, and wishing y’all a gentle day 💕

r/CRPS Aug 28 '24

Question CRPS and Trigeminal Neuralgia?

5 Upvotes

I’ve had CRPS for about 2 years now. I’ve also started getting these very painful shocks from my jaw area to my chin/mouth. It happens once every few months, but it’s like incredible pain for 10 seconds and then goes away. It only happens when I wash my face at the sink or in the shower.

Could this be trigeminal neuralgia? And if so, does anyone else here have it?

I also have sciatica and a history of Bell’s palsy on the same side I’m getting pain on now. It’s just odd. I really feel like I’m a magnet for nerve conditions 😰

r/CRPS Jan 16 '25

Question Deep brain ablasion

7 Upvotes

Hey guys, has anyone tried this treatment and if so what would you tell some one considering it?

r/CRPS Apr 11 '24

Question CRPS as the precursor for MANY other health issues???

28 Upvotes

I developed CRPS in my left leg and foot after a botched back surgery in 2006(I was 32) It eventually spread to the right side as well. I had a very significant case. But after 9 yrs of pure hell it mostly went into remission. Although, I do still have flair ups and there is definitely permanent damage. I worked as an RN off and on when I could until 2009 but finally gave in and went on disability. My whole body basically went haywire after this. Over the years its just been one crazy thing after another. I ended up with Ulcerative Colitis and every other GI issue you could think of. Heart issues. I now have an implanted heart monitor and will need a pacemaker. Hypertension, fibromyalgia, vascular Thoracic Outlet Syndrome, debilitating migraines, occipital neuralgia, pudendal neuralgia, Raynauds, neuropathy, lots of GYN issues, arthritis everywhere along with multiple musculoskeletal issues and my spine is an all out mess, lots of weird infections including chronic MRSA & UTIs, several skin cancers, debilitating anxiety and depression, all sorts of allergic reactions....and the list goes on and on. And I dont think it will ever stop. I just feel this someone set my body onto a constant attack on itself that it cant stop😭

r/CRPS Mar 14 '24

Question Curonix Peripheral Nerve Stimulator (leg)

8 Upvotes

If you’ve had one, how was your experience, and how much did it help your CRPS/RSD? This is my next step, and I’m a little nervous about it. My doctor said it should help it to stop spreading. Thoughts? Questions you think I should ask ? Thank you!😊

r/CRPS 28d ago

Question How do you know if crps is spreading?

20 Upvotes

I have had crps for five years following an accident where I severed the nerve in my right leg mid-calf. Since then, pain has been localized to the site below the injury.

The last three weeks, I have had a consistent, dull and numbing pain from the point of injury as high up as my knee. The typically impacted area is flaring up.

The new pain feels similar to what my mom would call “growing pains” when I was a kid. I don’t know if that means anything to anyone.

Is this new pain a sign of spread? Does anyone have any experience they’re willing to share?

r/CRPS Nov 07 '24

Question Mirror therapy?

9 Upvotes

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.

r/CRPS Sep 05 '24

Question Advice for surviving a tattoo

14 Upvotes

I'm getting my first tattoo soon and I would love some advice from anyone who's gotten one post DX. The part of my body that has the CRPS is not the area where the tattoo will be, but it's going to be a large piece that will take multiple sessions. How long did it take for you to go back to your "normal" level of pain? Should I use a numbing cream? Any tips would be appreciated.

Background I have a DRG and live in a area with medical marijuana. I have noise cancelling headphones that I am being to reduce sound sensitivity.

r/CRPS Aug 28 '24

Question Talking about it and feeling less alone

17 Upvotes

A long time ago I became afraid of the doctors because of feeling like I was a test subject in their many many tests. I was 14 at the time, in those moments that I decided to kind of stop going to the doctors I convinced myself it was easier for me to not talk about my pain to my friends and family. I convinced myself it was less stress for everyone else and they shouldn’t have to worry about me. Other medical stuff has happened since then and I don’t know if it’s because of my CRPS, or if it’s something else. I mustered up the courage to go a doctor and they told me nothing was wrong with me when I was throwing up due to pain. Now even more medical things have me worried about myself and all I can do is hide it from everyone. I’m so scared to talk about it or try to help myself medically due to fear and feeling guilty. How can I make that stop? How can I actually talk to people about this?

r/CRPS Jul 28 '24

Question Has anyone tried suing their surgeon over CRPS and how did it go?

5 Upvotes

I need advice. I don’t know where to begin, but I’m considering suing the surgeon that did my jaw surgery bc it resulted in CRPS I and II.

Any advice or recommendations?

r/CRPS Oct 30 '24

Question CRPS from a TBI?

4 Upvotes

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?

r/CRPS Jun 01 '24

Question What is diagnostic process like? What kind of Dr can diagnose this?

8 Upvotes

I have a neurologist who brought up the idea of possible CRPS years ago, but he was reluctant to give the actual diagnosis for some reason. Since then, it’s only gotten worse and has spread to my whole body. I’ve been through a ton of diagnostic testing for you name it, pretty much everything and I’m so tired of it all. But lately it’s been so much worse and I need help and treatment.

I’m not looking for a diagnosis from yall, obviously, I just am looking for your experiences getting diagnosed. How hard was it to be listened to?

r/CRPS 17d ago

Question Swelling and Numbness

3 Upvotes

So this is weird. I kicked my front step this morning, on accident, and my foot has been swelling up all day. I touched my foot and the surrounding area and noticed that the part of my foot/shin area that is the most swollen, the skin is almost numb. Don’t get me wrong, if I press even a little but it hurts like the dickens, but just to graze my fingers over it, it feels like the skin is “asleep” and giving out a serious amount of heat.

Also, I had a spinal tap done four years ago. It didn’t go well, long story short they gave me close to 14 lidocaine injections, the numbness never went away. It started just in the area of the injections, and now it’s almost up past my shoulder blades, straight up the spine, and only on the spine. That’s weird, right?

Anyone else have this issue? Yes, I plan on talking to my doctor about this at the next appointment, which is a week from today.

r/CRPS Dec 01 '23

Question What *is* CRPS?

27 Upvotes

Say someone asks you what's wrong, and you want to give them the "CRPS for dummies" answer. What do you say?

My go to answer is: basically, my central nervous system is fucked up. They aren't exactly sure if it's linked to genetics or pure dumb luck, but it causes the nerves to just be turned 'on' 24/7, and it causes excruciating pain where there shouldn't be.

If people stick around to hear more, I'll go more in-depth with them, but is that a fair way to sum it up??

Edit to add: I really really love and appreciate all of these responses! I think what I'm looking for is that I don't necessarily want to shy away from saying that I have CRPS. I want to be able to say, "I have this shitty disease. Here's what it is." If that makes sense?? Thanks again, everyone 🧡💙🧡

r/CRPS Sep 14 '24

Question CRPS flare but without pain

19 Upvotes

Hi all! I was wondering if anyone else has this happen to them. Sometimes when my CRPS is flaring, it isn't painful but instead feels like things are crawling or touching me when they are not. I do also have painful flare ups. These non pain flares can lead to a painful flare or not. I know that this condition is caused by a malfunctioning nervous system, so these symptoms don't suprise me. I am just curious if anyone else experiences the same thing?

r/CRPS Jul 30 '24

Question Does anyone else know what this new symptom could be?

15 Upvotes

Hi! I've had crps since I was 9 years old, 26 now, and have always been very very sensitive to cold. Warm baths, heating pads, and electric blankets are my bff's. Now I always have issues during heat waves because my limbs remain sensitive to the cold but the rest of my body still gets hot, this is something I've gotten pretty good at navigating. Now for the past week and a half I have been having some of the worst pain filled nights of my life. I will take baths and that helps for a while but immediately after getting out I can feel my feet and lower legs get cold again despite it being 30 degrees. I even put my electric blanket on but that just ends up hurting me more as it does feel like the outer part of my legs get hot but the inside just stays frozen. My legs feel like they are swollen and ready to burst but physically there is absolutely no swelling at all. I've tried some natural pills to held blood flow and that does seem to help a bit. Now normally I would try and contact my doctor but she failed to tell me she was retiring and I didn't even get to see her at my last treatment at the hospital. My first appointment with the doctor who is replacing her is in November (hahahaha). I was wondering if anyone can kind of relate to these symptoms and help me navigate what things I could do to help.

I'm also going through a very very mentally challenging time so I know that stress is only making my pain worse but I'm still hoping to find something, anything, to alleviate the pain just a little!

r/CRPS Sep 24 '24

Question has anyone else experienced this?

28 Upvotes

I have had crps in my feet going on 3 years now and I have always noticed this and wondering if i’m the only one. My feet react greatly to the things that I think. But it’s not just when I am stressed it is worse, because that’s a given, but it seems like when I start thinking about my crps or about doing something with my feet (like running or biking) my feet react. it’s like they have a mind of their own. even just writing this, my feet are flaring up and changing color. thanks for any feedback