I know your pain unfortunately as I have it too with other chronic pain conditions. May God bless you. I hope you have found ways to manage through it. Distraction is the best way I’ve found.
I got diagnosed with CRPS a few years back after nearly a decade of pain and crippling depression. One of the clues my pain doctor found is that I have such a high pain tolerance I have walked my toes bloody, got 3rd degree burns while mixing molten caramel candy with my bare hands... like an idiot, and most recently I spiral fractured my hand and only realized it was broken because of the snap, crackle and pops when doing chores or art. More research needs to be put into this, I know outhers with this and getting called a lazy drug addict by nurse, doctors and pharmacies is just wrong.
I’m already at the back door. I’ve had it since 2009 or the first injury was 1998. Surgery was 2009 that made it that I can no longer walk, and everyday I live in 7-10 pain level every single day nonstop, my world in been bedridden. I’ve tried medication,opioids, spinal stimulator, any treatments are just bandages. Mine is in my left foot then to my knee then to my bum, right ankle to right knee. I’ve had doctors drop me like a hot potato. If I have surgery on any part of surgery I scream, I had the batteries changed last fall and I screamed and cried threw the whole 1 1/2 hr surgery. My doctors and nurses in the operating room had tears in there eyes because when they put me under I can no longer control so my screaming comes out freely. I felt so bad for them. They all realized how my pain I’m in every single day, if I didn’t have my husband I would be dead by now, he got me a puppy to keep me alive. I rarely have any good days anymore it’s laying in bed unless I have to visit my doctors then I have wheelchair. I wish it was in my hand, shoulder but your foot when you have to get up and if walking to bathroom will just set it off. I too have to take Methadone just to get out of bed. I have stomach issues my bowels don’t work right, I have issues with my heart. I eat like a toddler. I would love a doctor to live one day of my life. I’ve been called a drug addicted at a Walmart Pharmacy drugstore part, because I was in town and just thought it might be ready but that’s what she thought I was, I’ve never ever abused my medication ever in my life. Pharmacy don’t know what your issues are so I explain that I live with CRPS and most go I don’t know or some already know what it is. I’ve has Steven Johnson Syndrome from taking 3 heart medication, it’s a complete body burn over 80% of my skin feel off. And I’ve also had pericardia the sack around my heart got infected by a sore throat. I’m always that 3rd% to get infections from surgeries. I’m 58 but look 68 all from stress and sooooooooo much pain. I’m going to book a appointment with MAID. My babies are growing up with little babies of there own, 2 this year, daughter and her husband having a May Baby boy and Son and his wife on 2nd baby which will be a surprise. I’ve had a wonderful life with my husband, he has been the best husband anyone would want, he cooks, cleans, take care of me. We have been together for 40 years but he’s 66 this year and I see how tired he is. I was 18 when I met this wonderful man, we had our ups and downs but we got threw it. But now I’m done no more. I don’t want bandages anymore from the pain clinics I want someone who knows what I’m going threw.
The fact that it's referred to as the suicide disease is no surprise whatsoever. After 35 years of CRPS type 2 I have profound empathy with you fellow warrior.
I am so grateful to hear you speak. I hate hearing someone else having to suffer as I have been but in the same breath it also feels good to know someone else that has the same condition. I have been suffering ankle pains since my sprained ankle. First a doctor had me wear a boot until my X-rays showed that I healed ok. My ankle kept hurting so I decided to see a few more ankle doctors. Every foot & ankle doctor, in my area that I saw, all wanted to do surgery on my ankle. So finally I saw a foot & ankle that seemed to know about everything, so I let him do the surgery, he said that he had fixed my sprained ankle, but I continued to tell him how badly I was hurting so he operated on my ankle again another time thinking I had bone spurs, and another surgery because he thought scar tissue may be the problem, then he thought I had valgas ankle and that that’s what might be causing the pain so he broke through my tibia & fibula with a sledgehammer like tool and then put a fixator cage around my lower leg- ankle w/ pins going through my leg & the cage in multiple places. This was the straw that broke the camels back. It made everything so much worse. Soon after I was told that I have CRPS. I’ve also been treated like a drug seeker by doctors and nurses, then treated even worse at the hospital. I’ve been to the hospital several times and they let me lay on the terribly hard hospital bed in the emergency room for 6 hours before sending me to a room or anyone giving me anything to help with the pain because they thought I was drug seeking. The last time I went to the hospital for my CRPS I screamed uncontrollably for 6+ hours😢 The nurses came into my area of the Emergency Room asking me to please be quiet, that I was scaring all the other patients in the ER. Oh! I have a Spine Neurostimulator for my back, I don’t notice much relief with my CRPS but it has helped with my spinal stenosis. I did notice a slight amount of relief when a person from the company that makes the Neurostimulator came in and made some adjustments on the program for the machine, plus a few hours later my pain doctor did a procedure on my back that I can’t remember? It definitely help relieve the pain. Actually it took my pain level score from a 10 down to a 1-2, and I can live with that, but 2 weeks later the burning/stinging/stabbing/crushing/jolting pain slowly returned. After I heard your comments about the Neurostimulator and that it can be a bad thing, it worries me and I can’t wait to speak to my pain doctor on Monday to hear what he has to say about it? When this all first started to get worse, my pain began to visibly worsen and I was starting to struggle with walking and also struggling with my normal everyday stuff, like chores, workouts, etc., my fiancé would treat me horribly, at times even borderline verbally abusive. He thought I was faking and that I was just being lazy and making excuses for laying in bed all day watching TV. He has always known me to be a strong healthy woman who loved to workout, ride bikes, dance, and a hard worker. It was hard for him to believe that I wasn’t that same woman. Then one night he witnessed just how much I was hurting, I collapsed in his arms. The next day he went along with me to speak to my pain doctor. I told him I’ve been hurting for quite some time but I’ve always been pretty good at hiding my pain, but as you well know the pain intensified as time went by and then I couldn’t hide it anymore. By then my fiancé understood, thanks to my doctors ability to explain everything I’ve been going through. Soon after that my fiancé and I set our wedding date and got married🥰 My own family treated me a little bit worse. They thought I was just being a drama queen and an attention seeker. Oh boy! I only wish that was true! I would be out having fun with my friends on my boat this weekend, it’s supposed to be gorgeous out. But in reality I’ll be laying inside my house, on my sofa, with my legs elevated up off the floor. At least I’ll be surrounded with the cat I recently adopted from a local Humane Society, along with the 4 kittens my husband and I recently rescued. Since our wedding my husband’s been a total angel. He’s my night in shining armor. The past 7 years my husband has been taking wonderful care of me. He’s been dealing with all my screaming and cursing surprisingly well, especially the late night screaming, thankfully he’s retired now. My husband says whenever I have a BAD attack from the CRPS, he has had to try to hold my arms & legs down or even lay on me so I don’t hurt myself while my arms & legs are flailing all over. My husband says that whenever I have a bad attack I look like I’m having seizures and that he has to pretty much protect my whole body, not just my arms & legs. He says I’ll hit my head and back pretty hard. He just wants to keep me from hurting myself. This past January my husband & I received horrible news, my husband has stage 4 lung cancer and it has metastasized to his lymph nodes, bone, spine, and his brain. He’s been getting weaker and weaker as time and chemo goes by. It scares me because I’m afraid I won’t be able to help him when he needs me most? I feel like a horrible wife when he’s forced to pushing me through the hospital just to get to his chemo appointment on time, because I’m hurting and walking too slow. I know he’s worried about me and I know he’s going to feel horrible if he’s in the hospital or too weak to help me if I have another bad attack? I hope he doesn’t, and he shouldn’t feel guilty that he can’t help me. I’ll have to just scream into a pillow, and hope that he doesn’t hear me screaming 🙏🏼 My husband has been struggling with thoughts of how I’ll be able to get along without him, of course I’ll survive, but I’m not going to handle losing him well at all either. He has been putting up handicap bars, poles, ramps, you name it. I can see he’s tired but he just won’t slow down and take a break. He says he has to get things done and that he knows I won’t be able to do it. His doctors say he may only have 2-3 years unless he suddenly takes a turn for the worse, such as pneumonia or any bad bacterial infections. Hopefully some kind of miracle cure gets discovered soon. I pray that a cure can be found in time, not for my own sake, I need him around not for his help. I need my husband around because he has my heart and he’s the reason I look forward to the future. I may be in pain 24/7 but at least I’m happy when he’s next to me. I have no idea what’s in store for us/me in the future? I just know I’m quite terrified. I have thought about possibly getting a service dog? But then I did a little research and I found out how much a service dog would cost me😵🫣☹️ I definitely can’t afford one since I’ll be looking to pay all the hospital bills and treatments for us both. Thank you for letting me vent. Thank you for sharing your story❤️
Ur story made me cry. Very similar to mine. I’m so sorry u have all this to deal with. A couple ideas. See if u can get Medicaid and ask to b put on a waiver then u can get someone to come to ur home to help cook clean etc It’s hard for me to get out so I do video visits with my pain dr. That helps I’ll pray for u!!
I feel you on the ankle thing. I sprained my ankle, both, a lot, ALOT! Of time but that wasn’t the end of it. One day, hanging up my purse and my ankle popped out! I got the fixator, too! And then surgery and then I sprained that ankle and it was this sharp radiating pain going up my leg. I went back to my podiatrist and he saw that even though I healed from the sprain, I was still in pain. He diagnosed me with CRPS. I went to a couple pain specialists who all said yup CRPS, get a SCS. I said no to each and every one until the neurosurgeon. He pushed it, made it sound like everyone he had operated on with the SCS was all successful. I wished I never did it. It was great at first. I went from bedridden to driving, visiting friends, walking my ex friends kids to the dollar store. The pain came back, I thought breakthrough pain, it happens until it kept happening and I ended up bedridden again. I’m working on getting it out. I know it’s another serious surgery but it’s causing new areas of pain and I believe if I get this thing out of me, it’ll stop or mostly stop. I been having pain where the generator is and he said it was pocket pain but it was getting worse that anything I did like washing the dishes hurt so bad that if I bend down, it hurt so much that it was so hard to get back up. Right now, my SCS is off. The pain from CRPS wasn’t as bad but still bad. But it made me realize a different kind of pain. I can’t walk without a walker. Pain in my upper thigh. There’s a degenerative changes in my spine. It might be sciatica. I don’t know if the SCS caused it, if I already was developing it or what but this thing has put me in more pain every day with the CRPS happening less. The X-ray of the SCS is fine so there’s nothing wrong with it that could cause the pain. It was the device itself. Even my SCS rep is the one who asked me if I believe that my SCS is causing me more pain and I said yes. He’s been very supportive. However, to get it out, I have to do some type of protocol. I don’t know what it is. I truly think the SCS caused me to have more pain and spreads. Caused the degenerative changes that might be sciatica in a severe case. I don’t know what’s going to happen from here on out but that f’n SCS is coming out one way or another. I hope you have a case of success. I truly do. Best wishes
Dear, Dear Sweet, Amazing and Brave Invisible Warrior! I worry for you and your fight re: "The 46/50 McGill Scale Pain Show". I am so terribly sorry you are one of the selected who must live with and Battle this disease. Pain is such an individual experience and can be soooo lonely to deal with and to find words around without being called out as a "Self-Proclaimed Victim", or for being dramatic even though you have said nothing -- not even a wince, whimper, or grimace. But, we do need to make noise, I was told, to allow others the opportunity to accompany us along our journey and learn things about life's tests and difficulties. I'm still considering that idea. Good job covering this topic -- it is difficult to cover CRPS in a way that someone unfamiliar with it might begin to understand the magnitude of this illness. My current situation (diagnosed in 2004 after several years being undiagnosed) is, again, has me trying to educate her. i have had an increase in the depth and breadth of my illness. After being required to listen to the three legs of pain lecture: Emotional, Social, and Physical. My blood pressure climbed over 20 points due to a horrific increase in pain in several places, so I was given a BP med which would touch the numerous aspects of my autonomic nervous system that I only recently was able to get it to calm down through my own research and sequential application of recommendations found at rsds.org/ 14:51 I have two resources I just discovered in addition to one that's been around for a long time as a leader in this: Please Consider Going to the Mayo Clinic in Rochester, MN -- Call them. They really do a,aging things🎉. Or, at least read their publications on this disease. Ask them about ways to afford your visit and their work up -- you may be surprised at this valuable resource. There are two other discoveries I found last week on youtube 🎉that seem to be worthwhile. One is a dentist who used lidocaine injections around the neck/head following nerve pathways. Another is a former patient, now doctor, who does a wellness camp approach in Idaho. I'm not ready, or able to go as yet, but I am using her list. I'll try to find these links and add them. ua-cam.com/video/ZIC_GP7Fmn4/v-deo.htmlsi=ceG9ffvl8IHmaXs_ ua-cam.com/video/0o-0mxNUeF8/v-deo.htmlsi=vsVymckXBgQQYsJL Best of Luck! God bless🫶🏼🫶🏼🙏🏼♥️💐🎶
I was in a motorcycle accident 9 months ago. I woke up with a broken body too much to describe. But worse than all of it the CRPS I have a paralyzed left foot paralyzed right hand, but in my left foot I can’t even be paralyzed properly because I have CRPS in my left foot. I can’t touch it, it starts burning constant electrical current morning bouncing around in my foot. It is a horrible horrible thing. I finally said I don’t wanna be on opiates. I went through opiate withdrawal for a month and now I’m smoking pot. I think it helps. It’s not a cure, but it helps me manage it and I’m not addicted to painkillers, good luck to everyone out there with this horrible unknown disease
As someone who was recently diagnosed, I agree with everything you said in this video. You're a warrior, inside and out. The medical community knows so little about it that I was in the ER 3 times last month and two if the times the doctors their didn't have a clue what crps is. Then the one who did instantly said it's one of, if not the nastiest chronic pain condition he ever had seen in all the years he practiced medicine. This is my first year with this condition and I thought I knew pain before. I was a wrestler and even dabbled in MMA, and studied material arts. I worked out daily and trained hard. I really thought I was tough Then this condition set in. Nothing I went through before even touches the level of pain I experienced daily . You're awesome for raising awareness. I'm looking to do the same. If I can't be cured, perhaps I could help raise enough awareness so others won't suffer like we are
I really enjoyed your video and you are calming. I suffer too it’s chronic. I hope you have more videos to watch. Prayers and sending good thoughts your way. ❤
So many of us are in the same boat. It is so sad. I give you immense credit making this video. As a fellow sufferer for eight years, I know how hard it is to discuss this. And especially to impart to others just what a rough road this puts you on. I have said and echo practically every word you say. I have NEVER sat across from a doctor who knows even close to what I know about this. And I came down with the symptoms, and ended up in the ER, right smack in the middle of CRPS awareness month (nov 16th, 215)!! It didn't matter at all. It took me 3.5 years to get properly diagnosed. I believe that your estimate of 2 years for a typical patient to get diagnosed right is accurate- as opposed to other far shorter estimates I have heard from "experts".
I have had crps since i shqttered my legs & ankles in the army. I have had it for over 18 years now. I cant explain to anyone just how bad it truly is. It has brought me to the breaking point over qnd over. I dont personally belive in suicide so its not an option for me but to be honest i see why they call it that. She is so right when she says doctors are afraid to touch you. I do highly suggest a pain pump i had one implanted and it helps a ton. Lastly a nerosrumulator does not cure it. I have one implanted in my spine as well and it definitely doesnt help. The pain pump is the only thing that has ever helped. But anyone who has crps like me dont give up. Just dont. I know exactly how you feel. Dont give up. If i can do it you can do it. Lets stick together. Praying for anyone with crps
I just got "diagnosed" because the doctor didn't want to put it on my medical record to prevent insurance coverage problems. Thankfully mine is fairly well managed with nerve pain medication, but it took years for doctors to believe someone as young as I am could actually be in so much pain.
So sorry to learn of your diseased condition… truly I am. But I wish to explain that people with my disease would envy the fact that you’re sitting up and able to speak clearly and intelligently. We suffer from a iatrogenic disease of the spinal cord and brain called Adhesive Arachnoiditis … most of us live in severe burning hell 24/7 without any relief…ever! 😢
It’s not a competition, but I think you very much know that, and suspect it’s why you posted this comment of yours here. I’m not in pain that OFTEN, and lucky I know… but when I am I’m “at one” with the pain. MERGED. I can’t listen to others or process what they say, or speak unless to mumble “I’m in it now… I can’t…”.
Have you heard about the “Don’t Punish Pain Rally? I am the state organizer for Texas. Sounds like the organization is getting somewhere with your legislators and things are getting better in your area regarding restrictions on pain medications. I have full body CRPS. I’ve had 2 spinal Stimulater’s (both times I got worse) I’ve had nerve blocks, nerve cauterizations and about every medication you can possibly think of including psychological meds thrown at me. None work! The only relief I get is from MS Contin. I’ve been asking for the fentanyl patch but my doctor does not want to write it as of yet. Hoping at some point I can wear him down. Thank you for sharing this video ❤️
I had been on MSContin and felt like a shadow of myself, but it was helpful. My pain doctor retired and her recommendation was XTAMPZA 18 mg/ 1 every 12hours. It did a good job with the time release mechanism which is difficult to find. For me, the 18/mg x 2 @ 12hrs rather than the lower dose 3x a day. Maybe it will be helpful... don't know. Wishing you the best! A Companion Traveler in Orange!
I have hypermobile Ehlers danlos syndrome, the doctor has ignored me , rolled his eyes to the nurse said horrible things to me he has given others false information about me l have a bad reputation at the hospital because of these mean people, l know exactly what your talking about l have a terrible quality of life l am by myself at 76 years old l have lived with this all my life I will. Keep you in my prayers thank you for you spreading your information 😢❤🇺🇸🇺🇸🙏🙏
I have been suffering from CRPS for over six years and have been gaslighted by everyone including so called doctors who are supposed to understand my predicament. I am living a life with 24/7 unending nightmare. Making no bones, there are no words in English vernacular which come close to in describing this horrible and terrifying medical condition.
I was diagnosed almost one year after my injury in 2017 because of negligence of the first doctor that treated me. Then It was too late for me to start a CRPS treatment . I tried almost everything, ketamine, stellate black, pain killers and more... my pain doctor told me that because I was diagnose almost a year later and because I couldn't start a pain treatment in time, the pain killer and other treatments were most likely to not work on me. Some doctors also suggest me to do the spinal cord stimulator, but a few nurses told me not to, because it would not cure me. I've been in pain for almost three and a half years and still some people believe that it is all in my head...
I was recently diagnosed after a foot surgery. It only took 6 weeks but I've got no help or support. There is nothing where I live. I need more surgeries too, one being on the crps foot & now my surgeon keeps putting them off. The surgeon diagnosed me.Because prior to all surgeries & diagnosis of crps, I was living with Rheumatoid & osteo, I get pain killers for that. I've built a trust in that regard with my idiot gp. So I at least have a little & I mean little relief with the small amount of perc I take. One pill a day. Half at noon, half before bed. That's all though. I had to go to the dentist recently & I was so scared of spread. I thankfully only needed one filling fixed & so far I'm okay. But dentists know nothing about it either. I'm just in limbo, trying to wrap my mind around this new diagnosis while not being able to wear anything on my foot when I go out, but an aircast. I don't last long with that either. I've lived with a ton of physical pain in my life with ra/oa but crps takes the cake & it's definitely hard to mind over matter. The surgeries I need are to get the hardware out after toe fusions. The hardware causes me a lot of pain, & I wonder if its irritating the nerve on the crps foot. Thank you for saying that it sukcs. I'm new to this & not ready to be told to be positive about it. I left one support group for that reason. I'm still in denial & grieving. I'm sorry you suffer so horribly too. My heart goes out to you. Nerve pain is no joke.
Hi kelly 😢it took almost 15 years to find why i was in sooo much pain pain that i couldnt deal wi5h anymore 😢my body was in pain all day all night i kept asking god topls guide me give me hope pls b3c this is not the way to live 😢😢i cryed for years 🙏 doctors hospitals till 🙏 2023 this year i was dignosed with crps at the hospital 🙏 😢 💔
Oct '21 is the start of my 15th yr with CRPS. I have had the spinal cord stimulator surgeries. NOT fun!! If it's anything you're considering read the articles first on how the company's were pushing it. Be informed! After the surgeries the tech tries to manipulate the stimulation to cover the effected area. Mine is mainly on the bottom of the foot. Driving foot of course and they couldn't push it there. So most of the stimulation is on the top of the foot and does mostly nothing for the pain. It's horrible brutal pain. Stick your toe in a light socket and leave it there type of pain. 9 hrs is my record. 9 straight hrs of laying in bed screaming like a banshee gripping the sheets kind of pain. That's my 10! There's no end in sight, how f-ed up is that.
I guess this won’t last long as a disease, but I’ve had Fm celiac disease and peripheral neuropathy and chronic insomnia and now I don’t because I don’t eat normal foods I eat only clean foods try steamed rice and bottled water for a month and my son has schizophrenia from this chemical glyphosate but now he understands not only listen to not eating the cereal and processed foods. He says when he eats the stuff he goes into a trance.
Just watched this episode and wonder if you r still active on your channel currently 2024? I broke my ankle summer 2023 and as the break healed the pain continued. Now 6 months later I’m told it’s CRPS on R ankle to knee. Had never heard of it and it is excruciating. It’s began to affect my uninsured foot as well. My orthopaedic Dr. Has suggested pregabalin (oral). Have u heard of this drug & treatment for CRPS? From 🇨🇦 and hoping I hear from u.
A neurologist put me on that and it made my CRPS much worse. My right foot, especially the bottom, is where it started and stayed for almost a year. I took that S*** for 2 weeks and it spread up my calf and now feels like I'm being burned all the way through my calf bone. This disease sucks. I can't do ANYTHING anymore. My son has considered dropping out of high school to care for me. I would die before I allowed that. He has to carry me from room to room. He cooks all my meals. I feel like it's totally unfair to him. But he has seen me break time and time again. I've seen 9 doctors. My primary finally wrote me a rx for 90 percocet. They are only 5 MG, so obviously, they don't help all unless I take a copious amount. My sister is talking about taking me to the mayo clinic in Florida... the doctors around here, Charleston SC, don't seem to know anything about it and I can't convey how bad it is properly. To get out of bed requires a bunch of percocet and Valium. By the time I'm at a doctor appointment, I'm pretty f**** up. Good luck to everyone here in this hell. I'm going to show this video to each doctor I see from here on out. Starting tomorrow with my neurologist. Maybe we should all do that? ❤kt
I have had CRPS FOR OVER 30 YRS I was diagnosed within a within two weeks or less bc my circulation was so bad along with the pain. My arm was dark purple and they talked Abt amputation I am fortunate to live in a state where we have pain clinics that are not afraid to prescribe the meds needed. The only catch is they just don't work that well. I have been shocked to find that over the last two yrs after talking to people who live in different states and countries how hard it is for some to get pain meds. Law makers need to understand there is a difference between a junkie and a patient in pain and that our bodies use up the drugs differently . I think before you know it none of these doctors will be able to prescribe us our pain meds yet they will open marijuana dispensaries on every corner and say that is not harmful.. go figure.
I came across this video as the title "Suicide Disease", which has been a title to describe my condition, Trigeminal Neuralgia. I was surprised to find this was a video to describe something else entirely The title 'suicide disease' has always been assigned to those afflicted with Trigeminal Neuralgia which was given by a neurologist because it was reported 50% of those with this condition take their life within 2 years of being diagnosed. I mean in no way to diminish your pain, but those of us with this neuropathic pain condition of TN, who live with this every day, with no cure in sight, do not need to have our condition diminished in turn. Also, if you Google Suicide Disease, the first thing that comes up is Trigeminal Neuralgia.
I know your pain unfortunately as I have it too with other chronic pain conditions. May God bless you. I hope you have found ways to manage through it. Distraction is the best way I’ve found.
I got diagnosed with CRPS a few years back after nearly a decade of pain and crippling depression. One of the clues my pain doctor found is that I have such a high pain tolerance I have walked my toes bloody, got 3rd degree burns while mixing molten caramel candy with my bare hands... like an idiot, and most recently I spiral fractured my hand and only realized it was broken because of the snap, crackle and pops when doing chores or art.
More research needs to be put into this, I know outhers with this and getting called a lazy drug addict by nurse, doctors and pharmacies is just wrong.
I’m already at the back door. I’ve had it since 2009 or the first injury was 1998. Surgery was 2009 that made it that I can no longer walk, and everyday I live in 7-10 pain level every single day nonstop, my world in been bedridden. I’ve tried medication,opioids, spinal stimulator, any treatments are just bandages. Mine is in my left foot then to my knee then to my bum, right ankle to right knee. I’ve had doctors drop me like a hot potato. If I have surgery on any part of surgery I scream, I had the batteries changed last fall and I screamed and cried threw the whole 1 1/2 hr surgery. My doctors and nurses in the operating room had tears in there eyes because when they put me under I can no longer control so my screaming comes out freely. I felt so bad for them. They all realized how my pain I’m in every single day, if I didn’t have my husband I would be dead by now, he got me a puppy to keep me alive. I rarely have any good days anymore it’s laying in bed unless I have to visit my doctors then I have wheelchair. I wish it was in my hand, shoulder but your foot when you have to get up and if walking to bathroom will just set it off. I too have to take Methadone just to get out of bed. I have stomach issues my bowels don’t work right, I have issues with my heart. I eat like a toddler. I would love a doctor to live one day of my life. I’ve been called a drug addicted at a Walmart Pharmacy drugstore part, because I was in town and just thought it might be ready but that’s what she thought I was, I’ve never ever abused my medication ever in my life. Pharmacy don’t know what your issues are so I explain that I live with CRPS and most go I don’t know or some already know what it is.
I’ve has Steven Johnson Syndrome from taking 3 heart medication, it’s a complete body burn over 80% of my skin feel off. And I’ve also had pericardia the sack around my heart got infected by a sore throat. I’m always that 3rd% to get infections from surgeries. I’m 58 but look 68 all from stress and sooooooooo much pain. I’m going to book a appointment with MAID. My babies are growing up with little babies of there own, 2 this year, daughter and her husband having a May Baby boy and Son and his wife on 2nd baby which will be a surprise. I’ve had a wonderful life with my husband, he has been the best husband anyone would want, he cooks, cleans, take care of me. We have been together for 40 years but he’s 66 this year and I see how tired he is. I was 18 when I met this wonderful man, we had our ups and downs but we got threw it. But now I’m done no more. I don’t want bandages anymore from the pain clinics I want someone who knows what I’m going threw.
The fact that it's referred to as the suicide disease is no surprise whatsoever. After 35 years of CRPS type 2 I have profound empathy with you fellow warrior.
I am so grateful to hear you speak. I hate hearing someone else having to suffer as I have been but in the same breath it also feels good to know someone else that has the same condition. I have been suffering ankle pains since my sprained ankle. First a doctor had me wear a boot until my X-rays showed that I healed ok. My ankle kept hurting so I decided to see a few more ankle doctors. Every foot & ankle doctor, in my area that I saw, all wanted to do surgery on my ankle. So finally I saw a foot & ankle that seemed to know about everything, so I let him do the surgery, he said that he had fixed my sprained ankle, but I continued to tell him how badly I was hurting so he operated on my ankle again another time thinking I had bone spurs, and another surgery because he thought scar tissue may be the problem, then he thought I had valgas ankle and that that’s what might be causing the pain so he broke through my tibia & fibula with a sledgehammer like tool and then put a fixator cage around my lower leg- ankle w/ pins going through my leg & the cage in multiple places. This was the straw that broke the camels back. It made everything so much worse. Soon after I was told that I have CRPS.
I’ve also been treated like a drug seeker by doctors and nurses, then treated even worse at the hospital. I’ve been to the hospital several times and they let me lay on the terribly hard hospital bed in the emergency room for 6 hours before sending me to a room or anyone giving me anything to help with the pain because they thought I was drug seeking. The last time I went to the hospital for my CRPS I screamed uncontrollably for 6+ hours😢 The nurses came into my area of the Emergency Room asking me to please be quiet, that I was scaring all the other patients in the ER.
Oh! I have a Spine Neurostimulator for my back, I don’t notice much relief with my CRPS but it has helped with my spinal stenosis. I did notice a slight amount of relief when a person from the company that makes the Neurostimulator came in and made some adjustments on the program for the machine, plus a few hours later my pain doctor did a procedure on my back that I can’t remember? It definitely help relieve the pain. Actually it took my pain level score from a 10 down to a 1-2, and I can live with that, but 2 weeks later the burning/stinging/stabbing/crushing/jolting pain slowly returned. After I heard your comments about the Neurostimulator and that it can be a bad thing, it worries me and I can’t wait to speak to my pain doctor on Monday to hear what he has to say about it?
When this all first started to get worse, my pain began to visibly worsen and I was starting to struggle with walking and also struggling with my normal everyday stuff, like chores, workouts, etc., my fiancé would treat me horribly, at times even borderline verbally abusive. He thought I was faking and that I was just being lazy and making excuses for laying in bed all day watching TV. He has always known me to be a strong healthy woman who loved to workout, ride bikes, dance, and a hard worker. It was hard for him to believe that I wasn’t that same woman. Then one night he witnessed just how much I was hurting, I collapsed in his arms. The next day he went along with me to speak to my pain doctor. I told him I’ve been hurting for quite some time but I’ve always been pretty good at hiding my pain, but as you well know the pain intensified as time went by and then I couldn’t hide it anymore. By then my fiancé understood, thanks to my doctors ability to explain everything I’ve been going through. Soon after that my fiancé and I set our wedding date and got married🥰
My own family treated me a little bit worse. They thought I was just being a drama queen and an attention seeker. Oh boy! I only wish that was true! I would be out having fun with my friends on my boat this weekend, it’s supposed to be gorgeous out. But in reality I’ll be laying inside my house, on my sofa, with my legs elevated up off the floor. At least I’ll be surrounded with the cat I recently adopted from a local Humane Society, along with the 4 kittens my husband and I recently rescued.
Since our wedding my husband’s been a total angel. He’s my night in shining armor. The past 7 years my husband has been taking wonderful care of me. He’s been dealing with all my screaming and cursing surprisingly well, especially the late night screaming, thankfully he’s retired now. My husband says whenever I have a BAD attack from the CRPS, he has had to try to hold my arms & legs down or even lay on me so I don’t hurt myself while my arms & legs are flailing all over. My husband says that whenever I have a bad attack I look like I’m having seizures and that he has to pretty much protect my whole body, not just my arms & legs. He says I’ll hit my head and back pretty hard. He just wants to keep me from hurting myself.
This past January my husband & I received horrible news, my husband has stage 4 lung cancer and it has metastasized to his lymph nodes, bone, spine, and his brain. He’s been getting weaker and weaker as time and chemo goes by. It scares me because I’m afraid I won’t be able to help him when he needs me most? I feel like a horrible wife when he’s forced to pushing me through the hospital just to get to his chemo appointment on time, because I’m hurting and walking too slow. I know he’s worried about me and I know he’s going to feel horrible if he’s in the hospital or too weak to help me if I have another bad attack? I hope he doesn’t, and he shouldn’t feel guilty that he can’t help me. I’ll have to just scream into a pillow, and hope that he doesn’t hear me screaming 🙏🏼
My husband has been struggling with thoughts of how I’ll be able to get along without him, of course I’ll survive, but I’m not going to handle losing him well at all either. He has been putting up handicap bars, poles, ramps, you name it. I can see he’s tired but he just won’t slow down and take a break. He says he has to get things done and that he knows I won’t be able to do it. His doctors say he may only have 2-3 years unless he suddenly takes a turn for the worse, such as pneumonia or any bad bacterial infections. Hopefully some kind of miracle cure gets discovered soon. I pray that a cure can be found in time, not for my own sake, I need him around not for his help. I need my husband around because he has my heart and he’s the reason I look forward to the future. I may be in pain 24/7 but at least I’m happy when he’s next to me.
I have no idea what’s in store for us/me in the future? I just know I’m quite terrified.
I have thought about possibly getting a service dog? But then I did a little research and I found out how much a service dog would cost me😵🫣☹️ I definitely can’t afford one since I’ll be looking to pay all the hospital bills and treatments for us both.
Thank you for letting me vent.
Thank you for sharing your story❤️
Ur story made me cry. Very similar to mine. I’m so sorry u have all this to deal with. A couple ideas. See if u can get Medicaid and ask to b put on a waiver then u can get someone to come to ur home to help cook clean etc
It’s hard for me to get out so I do video visits with my pain dr. That helps
I’ll pray for u!!
I feel you on the ankle thing. I sprained my ankle, both, a lot, ALOT! Of time but that wasn’t the end of it. One day, hanging up my purse and my ankle popped out! I got the fixator, too! And then surgery and then I sprained that ankle and it was this sharp radiating pain going up my leg. I went back to my podiatrist and he saw that even though I healed from the sprain, I was still in pain. He diagnosed me with CRPS. I went to a couple pain specialists who all said yup CRPS, get a SCS. I said no to each and every one until the neurosurgeon. He pushed it, made it sound like everyone he had operated on with the SCS was all successful. I wished I never did it. It was great at first. I went from bedridden to driving, visiting friends, walking my ex friends kids to the dollar store. The pain came back, I thought breakthrough pain, it happens until it kept happening and I ended up bedridden again. I’m working on getting it out. I know it’s another serious surgery but it’s causing new areas of pain and I believe if I get this thing out of me, it’ll stop or mostly stop. I been having pain where the generator is and he said it was pocket pain but it was getting worse that anything I did like washing the dishes hurt so bad that if I bend down, it hurt so much that it was so hard to get back up. Right now, my SCS is off. The pain from CRPS wasn’t as bad but still bad. But it made me realize a different kind of pain. I can’t walk without a walker. Pain in my upper thigh. There’s a degenerative changes in my spine. It might be sciatica. I don’t know if the SCS caused it, if I already was developing it or what but this thing has put me in more pain every day with the CRPS happening less. The X-ray of the SCS is fine so there’s nothing wrong with it that could cause the pain. It was the device itself. Even my SCS rep is the one who asked me if I believe that my SCS is causing me more pain and I said yes. He’s been very supportive. However, to get it out, I have to do some type of protocol. I don’t know what it is. I truly think the SCS caused me to have more pain and spreads. Caused the degenerative changes that might be sciatica in a severe case. I don’t know what’s going to happen from here on out but that f’n SCS is coming out one way or another. I hope you have a case of success. I truly do. Best wishes
Dear, Dear Sweet, Amazing and Brave Invisible Warrior! I worry for you and your fight re: "The 46/50 McGill Scale Pain Show". I am so terribly sorry you are one of the selected who must live with and Battle this disease. Pain is such an individual experience and can be soooo lonely to deal with and to find words around without being called out as a "Self-Proclaimed Victim", or for being dramatic even though you have said nothing -- not even a wince, whimper, or grimace. But, we do need to make noise, I was told, to allow others the opportunity to accompany us along our journey and learn things about life's tests and difficulties. I'm still considering that idea.
Good job covering this topic -- it is difficult to cover CRPS in a way that someone unfamiliar with it might begin to understand the magnitude of this illness. My current situation (diagnosed in 2004 after several years being undiagnosed) is, again, has me trying to educate her. i have had an increase in the depth and breadth of my illness. After being required to listen to the three legs of pain lecture: Emotional, Social, and Physical. My blood pressure climbed over 20 points due to a horrific increase in pain in several places, so I was given a BP med which would touch the numerous aspects of my autonomic nervous system that I only recently was able to get it to calm down through my own research and sequential application of recommendations found at rsds.org/ 14:51
I have two resources I just discovered in addition to one that's been around for a long time as a leader in this: Please Consider Going to the Mayo Clinic in Rochester, MN -- Call them. They really do a,aging things🎉. Or, at least read their publications on this disease. Ask them about ways to afford your visit and their work up -- you may be surprised at this valuable resource. There are two other discoveries I found last week on youtube 🎉that seem to be worthwhile. One is a dentist who used lidocaine injections around the neck/head following nerve pathways. Another is a former patient, now doctor, who does a wellness camp approach in Idaho. I'm not ready, or able to go as yet, but I am using her list. I'll try to find these links and add them.
ua-cam.com/video/ZIC_GP7Fmn4/v-deo.htmlsi=ceG9ffvl8IHmaXs_
ua-cam.com/video/0o-0mxNUeF8/v-deo.htmlsi=vsVymckXBgQQYsJL
Best of Luck! God bless🫶🏼🫶🏼🙏🏼♥️💐🎶
I was in a motorcycle accident 9 months ago. I woke up with a broken body too much to describe. But worse than all of it the CRPS I have a paralyzed left foot paralyzed right hand, but in my left foot I can’t even be paralyzed properly because I have CRPS in my left foot. I can’t touch it, it starts burning constant electrical current morning bouncing around in my foot. It is a horrible horrible thing. I finally said I don’t wanna be on opiates. I went through opiate withdrawal for a month and now I’m smoking pot. I think it helps. It’s not a cure, but it helps me manage it and I’m not addicted to painkillers, good luck to everyone out there with this horrible unknown disease
As someone who was recently diagnosed, I agree with everything you said in this video. You're a warrior, inside and out. The medical community knows so little about it that I was in the ER 3 times last month and two if the times the doctors their didn't have a clue what crps is. Then the one who did instantly said it's one of, if not the nastiest chronic pain condition he ever had seen in all the years he practiced medicine. This is my first year with this condition and I thought I knew pain before. I was a wrestler and even dabbled in MMA, and studied material arts. I worked out daily and trained hard. I really thought I was tough
Then this condition set in. Nothing I went through before even touches the level of pain I experienced daily .
You're awesome for raising awareness. I'm looking to do the same. If I can't be cured, perhaps I could help raise enough awareness so others won't suffer like we are
I really enjoyed your video and you are calming. I suffer too it’s chronic. I hope you have more videos to watch. Prayers and sending good thoughts your way. ❤
So many of us are in the same boat. It is so sad. I give you immense credit making this video. As a fellow sufferer for eight years, I know how hard it is to discuss this. And especially to impart to others just what a rough road this puts you on. I have said and echo practically every word you say. I have NEVER sat across from a doctor who knows even close to what I know about this. And I came down with the symptoms, and ended up in the ER, right smack in the middle of CRPS awareness month (nov 16th, 215)!! It didn't matter at all. It took me 3.5 years to get properly diagnosed. I believe that your estimate of 2 years for a typical patient to get diagnosed right is accurate- as opposed to other far shorter estimates I have heard from "experts".
I have CRPS and I'm on my 3rd Spinal Cord Stimulator and I'm still in alot of pain
I have had crps since i shqttered my legs & ankles in the army. I have had it for over 18 years now. I cant explain to anyone just how bad it truly is. It has brought me to the breaking point over qnd over. I dont personally belive in suicide so its not an option for me but to be honest i see why they call it that. She is so right when she says doctors are afraid to touch you. I do highly suggest a pain pump i had one implanted and it helps a ton. Lastly a nerosrumulator does not cure it. I have one implanted in my spine as well and it definitely doesnt help. The pain pump is the only thing that has ever helped. But anyone who has crps like me dont give up. Just dont. I know exactly how you feel. Dont give up. If i can do it you can do it. Lets stick together. Praying for anyone with crps
I just got "diagnosed" because the doctor didn't want to put it on my medical record to prevent insurance coverage problems. Thankfully mine is fairly well managed with nerve pain medication, but it took years for doctors to believe someone as young as I am could actually be in so much pain.
So sorry to learn of your diseased condition… truly I am. But I wish to explain that people with my disease would envy the fact that you’re sitting up and able to speak clearly and intelligently. We suffer from a iatrogenic disease of the spinal cord and brain called Adhesive Arachnoiditis … most of us live in severe burning hell 24/7 without any relief…ever! 😢
It’s not a competition, but I think you very much know that, and suspect it’s why you posted this comment of yours here. I’m not in pain that OFTEN, and lucky I know… but when I am I’m “at one” with the pain. MERGED. I can’t listen to others or process what they say, or speak unless to mumble “I’m in it now… I can’t…”.
It's like you're telling my exact experiences. It's so isolating..debilitating
Have you heard about the “Don’t Punish Pain Rally? I am the state organizer for Texas. Sounds like the organization is getting somewhere with your legislators and things are getting better in your area regarding restrictions on pain medications. I have full body CRPS. I’ve had 2 spinal Stimulater’s (both times I got worse) I’ve had nerve blocks, nerve cauterizations and about every medication you can possibly think of including psychological meds thrown at me. None work! The only relief I get is from MS Contin. I’ve been asking for the fentanyl patch but my doctor does not want to write it as of yet. Hoping at some point I can wear him down. Thank you for sharing this video ❤️
I had been on MSContin and felt like a shadow of myself, but it was helpful. My pain doctor retired and her recommendation was XTAMPZA 18 mg/ 1 every 12hours. It did a good job with the time release mechanism which is difficult to find. For me, the 18/mg x 2 @ 12hrs rather than the lower dose 3x a day. Maybe it will be helpful... don't know. Wishing you the best! A Companion Traveler in Orange!
34 years dealing with RSD. Not done yet.
I have hypermobile Ehlers danlos syndrome, the doctor has ignored me , rolled his eyes to the nurse said horrible things to me he has given others false information about me l have a bad reputation at the hospital because of these mean people, l know exactly what your talking about l have a terrible quality of life l am by myself at 76 years old l have lived with this all my life I will. Keep you in my prayers thank you for you spreading your information 😢❤🇺🇸🇺🇸🙏🙏
im so sorry you have to go through this.
I have been suffering from CRPS for over six years and have been gaslighted by everyone including so called doctors who are supposed to understand my predicament. I am living a life with
24/7 unending nightmare. Making no bones, there are no words in
English vernacular which come close to in describing this horrible and terrifying medical condition.
I hope you are doing well today... God bless you
I was diagnosed almost one year after my injury in 2017 because of negligence of the first doctor that treated me. Then It was too late for me to start a CRPS treatment . I tried almost everything, ketamine, stellate black, pain killers and more... my pain doctor told me that because I was diagnose almost a year later and because I couldn't start a pain treatment in time, the pain killer and other treatments were most likely to not work on me. Some doctors also suggest me to do the spinal cord stimulator, but a few nurses told me not to, because it would not cure me. I've been in pain for almost three and a half years and still some people believe that it is all in my head...
I was just diagnosed in April 2019 and my pain singles also have not stopped trying to learn to cope. Thank you for being brave for posting
4 1/2 years before diagnosed. Can't fix you so they throw you away.
I was recently diagnosed after a foot surgery. It only took 6 weeks but I've got no help or support. There is nothing where I live. I need more surgeries too, one being on the crps foot & now my surgeon keeps putting them off. The surgeon diagnosed me.Because prior to all surgeries & diagnosis of crps, I was living with Rheumatoid & osteo, I get pain killers for that. I've built a trust in that regard with my idiot gp. So I at least have a little & I mean little relief with the small amount of perc I take. One pill a day. Half at noon, half before bed. That's all though. I had to go to the dentist recently & I was so scared of spread. I thankfully only needed one filling fixed & so far I'm okay. But dentists know nothing about it either.
I'm just in limbo, trying to wrap my mind around this new diagnosis while not being able to wear anything on my foot when I go out, but an aircast. I don't last long with that either.
I've lived with a ton of physical pain in my life with ra/oa but crps takes the cake & it's definitely hard to mind over matter.
The surgeries I need are to get the hardware out after toe fusions. The hardware causes me a lot of pain, & I wonder if its irritating the nerve on the crps foot. Thank you for saying that it sukcs. I'm new to this & not ready to be told to be positive about it. I left one support group for that reason. I'm still in denial & grieving. I'm sorry you suffer so horribly too. My heart goes out to you. Nerve pain is no joke.
Hi kelly 😢it took almost 15 years to find why i was in sooo much pain pain that i couldnt deal wi5h anymore 😢my body was in pain all day all night i kept asking god topls guide me give me hope pls b3c this is not the way to live 😢😢i cryed for years 🙏 doctors hospitals till 🙏 2023 this year i was dignosed with crps at the hospital 🙏 😢 💔
Oct '21 is the start of my 15th yr with CRPS. I have had the spinal cord stimulator surgeries. NOT fun!! If it's anything you're considering read the articles first on how the company's were pushing it. Be informed! After the surgeries the tech tries to manipulate the stimulation to cover the effected area. Mine is mainly on the bottom of the foot. Driving foot of course and they couldn't push it there. So most of the stimulation is on the top of the foot and does mostly nothing for the pain. It's horrible brutal pain. Stick your toe in a light socket and leave it there type of pain. 9 hrs is my record. 9 straight hrs of laying in bed screaming like a banshee gripping the sheets kind of pain. That's my 10! There's no end in sight, how f-ed up is that.
I just wanna know. How are you right now?
I guess this won’t last long as a disease, but I’ve had Fm celiac disease and peripheral neuropathy and chronic insomnia and now I don’t because I don’t eat normal foods I eat only clean foods try steamed rice and bottled water for a month and my son has schizophrenia from this chemical glyphosate but now he understands not only listen to not eating the cereal and processed foods. He says when he eats the stuff he goes into a trance.
Just watched this episode and wonder if you r still active on your channel currently 2024? I broke my ankle summer 2023 and as the break healed the pain continued. Now 6 months later I’m told it’s CRPS on R ankle to knee. Had never heard of it and it is excruciating. It’s began to affect my uninsured foot as well. My orthopaedic Dr. Has suggested pregabalin (oral). Have u heard of this drug & treatment for CRPS? From 🇨🇦 and hoping I hear from u.
A neurologist put me on that and it made my CRPS much worse. My right foot, especially the bottom, is where it started and stayed for almost a year. I took that S*** for 2 weeks and it spread up my calf and now feels like I'm being burned all the way through my calf bone. This disease sucks. I can't do ANYTHING anymore. My son has considered dropping out of high school to care for me. I would die before I allowed that. He has to carry me from room to room. He cooks all my meals. I feel like it's totally unfair to him. But he has seen me break time and time again. I've seen 9 doctors. My primary finally wrote me a rx for 90 percocet. They are only 5 MG, so obviously, they don't help all unless I take a copious amount. My sister is talking about taking me to the mayo clinic in Florida... the doctors around here, Charleston SC, don't seem to know anything about it and I can't convey how bad it is properly. To get out of bed requires a bunch of percocet and Valium. By the time I'm at a doctor appointment, I'm pretty f**** up. Good luck to everyone here in this hell. I'm going to show this video to each doctor I see from here on out. Starting tomorrow with my neurologist. Maybe we should all do that?
❤kt
I have had CRPS FOR OVER 30 YRS I was diagnosed within a within two weeks or less bc my circulation was so bad along with the pain. My arm was dark purple and they talked Abt amputation
I am fortunate to live in a state where we have pain clinics that are not afraid to prescribe the meds needed. The only catch is they just don't work that well. I have been shocked to find that over the last two yrs after talking to people who live in different states and countries how hard it is for some to get pain meds. Law makers need to understand there is a difference between a junkie and a patient in pain and that our bodies use up the drugs differently . I think before you know it none of these doctors will be able to prescribe us our pain meds yet they will open marijuana dispensaries on every corner and say that is not harmful.. go figure.
What is range cost for ketamine treatments? Please thanks
How are your Ketamine treatments going for you? I'm thinking of giving it a try.
I am at the edge of a clift
I know that feeling.
Would you even realize she was in “that kinda pain,” if her voice was muted?
Its been 7 years for me... meds don't work.
Look into “The Water of Life” by John armstrong
Have you ever tried urine therapy?
I came across this video as the title "Suicide Disease", which has been a title to describe my condition, Trigeminal Neuralgia. I was surprised to find this was a video to describe something else entirely The title 'suicide disease' has always been assigned to those afflicted with Trigeminal Neuralgia which was given by a neurologist because it was reported 50% of those with this condition take their life within 2 years of being diagnosed. I mean in no way to diminish your pain, but those of us with this neuropathic pain condition of TN, who live with this every day, with no cure in sight, do not need to have our condition diminished in turn. Also, if you Google Suicide Disease, the first thing that comes up is Trigeminal Neuralgia.
Are you still here sweetheart? Xh