What is CRPS?

A filmmaker tries to bring awareness to this debilitation disease
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[valerieedwards]

I have had crps for 6 years now. I give up trying to tell family how much pain I'm in.

[christyinthecarolinas]

I have crps and I started a channel to do my part in bringing awareness to this disease. It took me 9 years to get diagnosed and in those 9 years, I had zero treatment. It's very frustrating. Soft, gentle hugs to my fellow crps warriors. Xoxo to you all and you're in my prayers!!

[alphamystique]

Thank you, I have battled this in my right hand. I was a right-handed woman, a professional photographer. An assault took it all away. I get why they call it the suicide disease. This changes lives, and nobody seems to understand. All I can say is thank you for trying to bring awareness! Bless you!

[alyssadailey]

I've struggled with CRPS for 5 years now. I was diagnosed as a 10 year old and it was terrible. I had grown adult doctors telling me I was faking it. After 2 years I was finally diagnosed. It was absolutely the worst pain I've ever been in. I was on the highest doses of all kinds of medications. I also became extremely depressed for about 2 and a half years. My whole life has always been revolved around soccer and I was obviously not able to play for a very long time. I felt extremely alone when I was dealing with CRPS. If anyone needs to talk I'm here. This awful disease has changed my life and I'm stronger because of it

[elliesmaking]

I have CRPS in both of my feet. It is horrible but we have to stay strong. All you people with it you stay strong. And it is really hard because it is like excruciating pain 24/7.

[debbliles]

I have CRPS and it's in my ankle and legs. And it is so compleatly hard to explain and in the beginning I was always asked aren't you better yet, or what's wrong with you?? And that hurt and was hard to take all the time. I am looking forward to this movie to get the word out!💛🙏💛🎗

[marthabalev]

PRAYING for all of u beautiful souls I have a 32 year old daughter that I believe has had this disease but no one recognise it 🥺 praying an cry to see her crying of pain😪💓🇦🇺

[hanpierce]

i was diagnosed with CRPS about 6 months ago. it’s awful but luckily i have amazing doctors that have helped me cope with the pain and found ways to manage it. finally feeling normalish again. thank you for bring it to light.

[ires]

I found out today that I had CPRS and all my muscle is starting to waste away... It's so horrible, I would not wish it upon anybody.. <3 Everybody who has CPRS Good luck for future treatment and getting better! It's like hell... I have a horrible type and I'm only a young teen...

[AngelStars]

I'm extremely concerned that I was not aware of this disease, as someone who is studying biology. I found my way here through my own curiousity. There NEEDS to be more awareness and education on this condition so we can speed up the process of finding a cure. I believe that everything in this universe is reproducible, if there was a way something can get a nervous system to malfunction, it CAN be reversed, we just haven't discovered how yet. I really hope that once we combat covid19 and get it out of the way, there will be more research and energy put into finding a cure for this disease, because it is incredibly unfair for anyone to have to endure something like this.

[heidiburke]

I have RSDS/CRPS going on 21 years. The public and especially the medical field need to learn more about this complex disease. Mine has been slowly but extremely painfully spreading. Now with these opioid guidelines that are in place I really can't go on for even another 5, 10, 20 years. WE NEED HELP NOW !!!! Stop lowering or taking our opioids away. I had

[tracimckinnon]

I am so glad someone has come out with this I developed cprs from a needle stick and it is the worst pain by far I have every experienced. Mine was on my left wrist and hand but is now effecting the other arm and causing migrane headaches. I have had three nerve blocks that caused my blood pressure to sky rocket and I could not swallow for 8 hours. all of the 3 blocks have failed and now they have to implant a spinal stimulation device in my spine to control the pain for life. At one point I asked about amputation and they said that may not help because the nerves are attached every where. So, this disease is real and horrible pain... It is not in our heads....
Thanks for listening.
Traci McKinnon Lewistown, , Pa

[walterdelorrelliv]

I was diagnosed with CRPS 4 years ago and now I am in semi-remission because it was caught relatively early with a bone scan. It is predominately in my right leg below my knee and it jumped to my left heel and toes. Still burns like hell, a nice 6/10 pain wise on a good day.

[valeriejewell]

I was diagnosed 4 years ago, I have gone from a fun, loving, kind, giving, beautiful woman, to a “MISERABLE CU -T”

[rachelarena]

i have crps and people constantly ask me why are you always hurt? or tell me stuff like wow you have really weak bones. It’s so annoying that people don’t understand it when i explain it so i just say oh it’s a nerve thing now. prayers to everyone else struggling with crps i get your pain, stay strong❤️

[Brittsgotit]

I was in an accident in 2007, broke my pelvis, sacrum, and lumbar spine. My left side from the waist down was paralyzed on impact. Unfortunately, many nerves were damaged and severed which lead to living with CRPS 2. Insane to think that I've just recently been diagnosed after 12 years. Never gave myself a chance to rest properly, so it does get better once you've researched and understand the disease better. 🥰

[shereehewings]

I have had CRPS for 3;years now and I can say I took my life for granted before I got this torturous and excruciating CRPS
I feel sorry 😔 for children, teenagers and young adults that get CRPS because they have not lived their life fully and it's hard to live a normal life with this.
Im grateful that I got to do things in life and have many memories of the better times.
I was 47 when I got CRPS
I could not imagine being young and having it

[nataliaandrews]

I got CRPS in 2019 as an 11 year old after 2 surgeries and multiple sprained ankles. Took 2 years to diagnose it. In the meantime, I couldn’t do what I love best: playing sports. To this day, as a 14 year old, I still can’t play sports. I was on a lowkey volleyball team for a month last year, then had to drop out because I began having bad shoulder pain which still hasn’t healed. It started in my left leg and ankle and is now in my right arm mostly. I have been doing physical therapy and various other things since it started, none of which have really done anything. In pe class at my school, I have to watch everyone have fun doing things I would absolutely love to do but knowing that if I try to do those things, I will only be met with pain. Both physical pain and mental pain because I know I am so much more than I am and have so many skills that haven’t been shown to anyone in 3.5 years. My pe coach never believes me when I say I can’t do an activity because all the other kids are fine and healthy. It’s so tiring constantly saying “I can’t do that” when all I want to do is say “Yes, I can do that.” People constantly ask me “Why can’t you participate” in various activities and I’ve gotten so tired of explaining everything that I just tell them its a long story because nobody understands anyways. Reading these comments from other people has made me feel a little less alone. Stay strong yall

[wolfjack]

Thank you!!! After 9 days of non stop pain 4 nights no sleep no food. I just left the 2nd hospital today with dx of CRPS. I wanted my arm cut off my hand is cold my arm is swollen I sweat so bad on my left side. The pain gets worse each day and faster riding in car the turns stops bumps and even my shirt touching my arm sends me into intense burning crushing pain! I'm on Lyrica for the pain I pray it starts soon to work as I can't take it no more!!!

[MrHawkwind]

I have had this for 3 years but am very fortunate because Tramadol works for me, I take only 100mg each morning and 100mg each evening and it reduces the pain considerably. If you haven't tried it ask your doctor about trying it, you have nothing to loose. I hope this might help someone, this condition is a nightmare.