The Reality Of Complex Regional Pain Syndrome (CRPS): What You Need To Know

Hi Everyone!
Happy national CRPS month!
In this video, we're going to talk about the reality of complex regional pain syndrome (CRPS). CRPS is a serious condition that can affect many parts of the body, and it can be really hard to understand and cope with.
We're also going to discuss some of the basics of CRPS and what you need to know if you're experiencing it. We'll also talk about some of the treatments available for CRPS, and how you can manage the condition.
If you're a person experiencing CRPS, this video is a must watch. It'll give you a better understanding of the condition and help you find the support you need to cope with it.
As always I love hearing from you so if you have questions or comments please post them!
Stay healthy and lucid 💡
Danielle

Links:

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Please watch: "DYSAUTONOMIA/POTS: A Frightening Reality"
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[TaichiStraightlife]

I got CRPS when I smashed my wrist by landing backward on it after falling on the street (I fell after a RAPIDLY accelerating cop car suddenly came at me while I was in the midst of crossing the street, but that's another story) - there was surgery, a titanium plate, screws etc. I'm 73. Luckily I was able to get back to my t'ai chi within a month; a life saver. I work hard at PT & my PT homework. Here's my contribution: my hand is very weak, clumsy- constant debilitating nerve pain was coursing through me, I couldn't open a door, close a window; I cursed my hand, etc. DON'T DO THAT. THESE ARE NERVE SYSTEMS. YOUR HAND HEARS YOU. IN IT'S WAY IT SCREAMS BACK. THERE'S OTHER, SUBCONSCOUS CONSCIOUSNESSES AT WORK GOING ON ALL THE TIME INSIDE OF US, OF THAT I'M CERTAIN. Speak gently to your wounded limb; let it know that you love it & you're trying to help it recover & feel better. When I first did that half my pain went away & I finally started my journey back to better health; who knows how far I'll get? GLTA.

[Monablues]

Please, everyone read the Study contents from the Mayo Clinic. I was diagnosed in 2000 at Stanford.
It's imperative that you all take bone building supplements.

(Because of loss of blood flow and peripheral nerve damage, I lost my teeth and bone in jaw.)

Mayo Clinic stops short of saying you can lose teeth and bone loss in jaw. Because this would cause blur the lines between Health Medicine and Dental care, along with Cosmetic surgery. Yes, health costs. 💰

Wish they're was more studies on this. I'm doing my best to spread the word.

CRPS aka RSD can cause bone loss!

[timdaley]

I was diagnosed with this 2 weeks ago after the onset that began when I was 16. The medical gaslighting I have experienced for the last 7 years. I was told: it was psychosomatic, that I was drug seeking, that it was somehow a virus, that it was just my autoimmune problems, etc etc. I had total wrist arthrodesis last april putting me at almost 1 year post op as of now- and some days I am still waking up in worse pain as the surgery itself (and my surgeon couldn't make sense of why I was in so much pain by week 2 and lemme tell you that surgery was no cake walk). I have ended up on forced psychiatric holds because the pain was so bad I wanted to die. I have been on and off so many medications to try to control this pain for the last 7 years, from NSAIDS which I later developed an allergy to, local anesthetics, narcotics, anticonvulsants and other neuromodulatory drugs (the latter two being the only ones that gave me some semblance of relief). And knowing that this is what this is- having this diagnosis, gives me little hope. If anything, it's just confirmation that I am not crazy

[kimhickman]

I have never ever met anyone with CRPS. My life changed after my 8th surgery to fix my broken heel, the doctor who cause all of my issues is he took 2 screws up threw my heel bone to leg bone, 2 weeks after surgery in 2009 I went septic I kept saying something was wrong, my leg was hot, I couldn’t put and pressure and suddenly on vacation it broke the skin and puss came out of the site of the two screws. They cleaned it up but it was too late I went septic. I fought for my life. I was non weight baring for 2 years because the infection ate all of my bones inside my ankle. I’ve had 2 artificial ankles. It’s been a crazy road now I’m in the worst of the worst right now. Every single day I live with 7-10 pain level. I now understand why doctors call it the suicidal disease.

[heatherelizabeth]

CRPS does not GO away! You can be put in remission, but it never goes away. It also doesn’t just happen in an arm or leg. It can happen anywhere you have a nerve. And it also spreads anywhere you have a nerve including your eyes and your ears. I’ve been studying this for over 13 years bc I have it.

[greenbean]

I was diagnosed after I broke my arm about a year ago. The last year has been a nightmare, but luckily it seems to finally be getting better. My heart goes out to people who have this, especially the bad cases. A couple things that might help someone that helped me is a lot of antiinflammatory foods/ diet, meditation, mirror therapy, warm/hot water ( lots of baths and swimming in the heated therapy pool), and any activity that can help take your mind off of it for as long as possible.

[elizabethcourtney]

Thank you for this video! I have had CRPS for four years now. I developed it after I broke my leg in three places. The best treatment that is working for me is the nerve blocks, pregablin (Lyrica) and tramadol. It doesn't stop the pain but significantly helps. I couldn't figure out what was wrong with me, but my doctor diagnosed it quickly. I have the constant burning sensation, edema, and skin discoloration that comes on randomly. My skin gets red, changes to black, it Iooks bruised like I took a bad beating and then it will go back to normal. It is difficult to walk and travel but I'm working on getting stronger.

[lucidmed]

Hi @ jennaleigh! In my experience symptoms of CRPS and MS may initially be confused however this is easy enough to be ruled out with an MRI of the brain and spinal cord. Also it is not common for people with MS to have pain. It’s more often weakness. So I’m curious as to what testing you’ve had to rule out MS. I’m also wondering if you have both conditions and the wrist surgery was the catalyst for the CRPS ( this is fairly clear in your case) but led to an autoimmune response that continues to worsen. I’m so sorry you’re going through this and it’s my pleasure ;). Thank you for commenting.
Danielle

[patriciajump]

Maybe I had this when both feet were dusky red, swollen to a puffy state but not pitting, and they both HURT to stand on, and shoes hurt, too. This developed after plantar fasciitis that was aggravated by incorrect care by my first podiatrist, who made custom orthotics without any support to stop my feet rolling inward (which was what was causing the plantar fasciitis, I discovered later), and he recommended a shoe that flattened my foot and this tortured, strerched, and injured the fascia even more which exacerbated the plantar fasciitis even more. A year later I lucked into a better podiatrist who made orthotics that supported my feet and he recommended shoes with room for my high arch feet. It took a year to get better and I had to be careful for years to wear the orthotics and to not lift heavy things, as that stretches the fascia, too. Oh, more wrong treatment that made it so severe - at PT they had me stretch my fascia which further injured it because it was injured already. I think I needed rest to the feet at that point, to allow healing - not more stretching that further injured and ripped up the fascia even more.

[tinathenurse]

Thank you for this coverage on crps. I was dx after a working injury that crushed my ulna nerve in 2014. 17 nerve blocks, 20+ med trials, two spinal cord stims, lidocaine and Ketamine infusions later, I’m forced to retire as a nurse of over 35 years. I hate being a patient, and living in catastrophic daily pain, mired in the workers comp system, finding /not finding doctors that ‘get’ CRPS… depression doesn’t cover it. ALL the treatments you mentioned were things I learned about in a month stay at the Shirley Ryan Pain Center in Chicago ( top notch there). Still, CRPS needs to be studied more . We don’t ‘live’ with it, we endure it.

[rebeccaboening]

According to my old pain doctor, Spinal Column Stimulators (SCS) are a placebo. The fact that the SCS company canceled my implantation surgery after I told them that I was on the fence about the procedure, and that I had real pain and not to do it if it was a placebo. I have had CRPS type 2, stage 4, since I was injured in 1987. Like it or not, I would not be here if it weren’t for the partial relief I get from pain medication.

[jenniferrhoades]

My son is 27 and has CRPS 2😢i wish i could take it completely away for everyone and all the pain that comes with it. ❤

[michaelluccketta]

I sustained a crush injury which caused nerve damage. I was initially started on Lyrica 50mg daily and received physical therapy. My symptoms continued to worsen. I eventually had a tarsectomy on the affected extremity. Everything changed after the surgery. The pain worsened. I was diagnosed with CRPS. The nerve blocks do help but are only temporary. I am now Rx’d Lyrica 600mg daily ( 300mg BID ) Diclofenic 100mg daily, Flexeril 10mg TID PRN, and Oxycodone 15mg QID PRN. I recently went to my 3rd QME. The DPM assigned to my case says no further surgical intervention. He told me my nursing career is over. The pain specialist wants to discontinue the Oxycodone and start me on Methadone but I’m just not ready for that. Our next step is going to be a spinal cord implant. This is all quite depressing. This has greatly impacted my life. I try and maintain and put on a happy face however it’s getting harder to do so. I’m happy to have discovered this channel. After reading all of the replies it’s good to know I’m not the Lone Ranger, lol. Best wishes for all.

[finndog]

Diagnosed with it back in 2012 after I broke my foot, had surgery on it and was in a non weight bearing cast for about 5 months. Started in my foot, toes. Since then it spread up that leg to my hip, into my back and is now spreading into the other leg. I have a spinal cord stimulator implant, and most recently a dorsal root ganglion stimulator implant. That plus pain meds, nerve meds, and other meds gets me through my day, but only cuts down the pain, never st it. Pain is always there, all the time, no matter what

[jbrous]

You are an inspiration not just to nursing and medicine but also to humanity...thanks for caring about us.

[lisamoore]

I was diagnosed after a thalamic stroke. For over a tear i have been in torture pain, being set on fire, electrocuted, frozen, and feels like my hand is on a hot sidewalk being dragged. Its a horrible way to live.

[mlcarey]

Developed CRPS in 2009 following a total ankle replacement. Received the CRPS diagnosis from Stanford Pain Mgmt Interdisciplinary Intermodule Team ( 6 MDs). Beginning in 2014, I have had numerous Radio Frequency Ablations that last 12 + months. Tried a DRG Implant for 5 years. Just received clearance via a psych eval to receive a new 2 month external PM modulator next month. Its a biopsychosocial journey. I advise CRPS warriors to aggressively seek CBT skills to manage the unrelenting pain.

[finndog]

I've had well over a hundred nerve blocks and probably fifty nerve burns for my crps, any relief gained was temporary.

[anntunaley]

Ive had a dozen nerve blocks, tried all kinds of meds, but bc i was misdiagnosed for so many years nothing has worked so far. Im now in palliative care and on veryy, very strong pain meds and having some relief.

[crpsdiaries]

I've recently been diagnosed with crps on my foot, after a toe fusion caused nerve damage. My surgeon diagnosed me with it during my second follow up. I knew quite quicky after my surgery that the pain was completely different from my other foot, where I'd had the same surgery. It was unbearable. I felt like I was being stabbed, pins & needles, heel pain ect. Though I had discolouration & temp change (cold) at the time of my follow-up, & swelling but more from the surgery, that has all improved. What hasnt is the pain. Alodynia. The slightest touch sends me through the roof with pain. I can't wear boots/shoes.The pain gets worse in the evenings & I don't know how I'm going get through our 8 month long harsh winters up here, not being able to wear a boot. The only thing that I can get away with for a short time, is an aircast.
My surgeon has put other surgeries that I need desperately on hold because of this now. I'm also left with no help at all aside from being diagnosed. I'm hoping it will get better but I'm three months in with no improvement on the pain. I do have RA & lupus so I'm on a small dose of perc. for that which slightly takes the edge off the CRPS.