Відео

My hand therapist thinks i have this. Im a nutritional therapy student and i have glutamate dysregulation, and i know that a lot of pain and inflammatory conditions involve high glutamate and it overstimulates the nervous system. One paper on crps showed a 500 percent increase in glutamate. Also arginine has been found to be low in crps which means it may be being used up in an upregulated inducible nitric oxide synthase pathway. I got off pain killers by doing a strict low glutamate diet,supplements to support the GAD enzyme for glutamate regulation, 80 percent plants for alkalinity, and herbs to inhibit nitric oxide synthase. I also needed a few sessions of lymphatic drainage massage for the swelling. Hope this info is of help to someone as this condition is horribly painful and im now pain free, though my hand is very stiff and rehab may take a while but im grateful im no longer in horrendous pain.

It's like you're telling my exact experiences. It's so isolating..debilitating

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 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 😢❤🇺🇸🇺🇸🙏🙏

My primary care doctor gave me 5 mg percocet. I need 3 of them to help at all. Someone gave me a few 60mg hydromorphone extended release and I was able to wear normal shoes and had almost no pain for about 10 hours. I am hoping my dr will write me a rx for those. Idk about developing tolerance with those. I know I have already got tolerance to the percocet. All the nerve meds I have tried made the CRPS worse. I am pretty much in bed now. Its like stepping on jagged rocks or legos but amplified by like 10. The bottom of my foot is the worst. Mostly my heel and the bottom outside. The colors are crazy! ❤kt

Awesome advice , thanks , I’m 31 and was diagnosed in February of this year was trying to get diagnosed sense August of last year from a work injury involving my ribs and hip , I struggled doing PT and had to stop , put off pain management for awhile because I’ve been scared of taking opioids so I’ve tried just being tough which has only made this disease worse , gabapentin only creates massive brain fog with little relief . How did you engage with the pain management doctors to bring up opioids as part of your treatment? Thanks .

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 have CRPS and I'm on my 3rd Spinal Cord Stimulator and I'm still in alot of pain

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 just wanna know. How are you right now?

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.

4 1/2 years before diagnosed. Can't fix you so they throw you away.

34 years dealing with RSD. Not done yet.

We found out RIGHT AWAY my husband had it after an accident at work involving his left leg. Yet, we never understood why they say if you find out right away your chances of remission are higher bec they still don't know what to do for it - "right away"...They put you on Gabapentin, Nucynta and schedule a spinal cord stimulator surgery for it. All which we did. Spinal Cord stimulator was done within 6 months. It worked for almost a year then just stopped one day. Did every adjustment to it imaginable. Even with it, he had only about a 50% pain reduction but was able to walk again and function. Without it though, he was rendered completely unable to walk and was in constant pain with spasms and flares. When it stopped working... it completely stopped. One year later after being bed ridden, we felt we had no choice but to get the damaged leg removed. He was amputated above the knee but has never been able to wear his prosthesis. Its been 6 and half years since the accident and has been a complete and utter hell since then. He has gone through numerous surgeries including a pain pump, has had many personality changes, ups and downs due to pain and medicines... As a care-giver I have even contemplated suicide so we completely are there with all of you.... The only thing saving me is mediation and a deeper sense of spirituality. Dilaudid in his pain pump along with continuous use of Nucynta is the only thing that seems to bring him some relief but never enough to wear his prosthetic.

I’m crying with you

I know what you mean about doing the dishes. When I have my pain at a 5-6 and I can clean I feel so fulfilled 😢

Do you the pain meds in addition to this or is ketamine enough? I’m desperate for help, but I don’t have a good team of doctors. Do you have any recommendations on doctors? Sorry for all the questions. I wrote you on another post and have been watching your videos which are very helpful. Please read my other comment about my condition.

If you don’t like me asking what dose and medication are you on or recommend. I am on pain meds for crps after a severe car accident by a drunk driver. I’ve had 12 surgeries including an ankle replacement . I’m on these meds and they claim that I’m on the highest dose but I’ve been on the same dose for 4 years and never adjusted. Any advice I would appreciate. We can talk in private if need be. I am desperate.

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.

I have opiods, on occasion. I have a separate one for 10/10 pain. Having that helps so much as I don't have the fear of going to the ER and being labeled. I have many tools for pain and use the opiods rarely.

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.

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".

Look into “The Water of Life” by John armstrong

Have you ever tried urine therapy?

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

Are you still here sweetheart? Xh

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! 😢

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.

I hope you are doing well today... God bless you

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.

Would you even realize she was in “that kinda pain,” if her voice was muted?

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.

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.

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 🙏 😢 💔

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🫶🏼🫶🏼🙏🏼♥️💐🎶

Exactly! No one knows what others are dealing with, especially with CRPS! Dr. Pradeep Chopra (Brown University Prof, CRPS expert) talks about the way a CRPS patients process opioids is different than other forms of chronic pain! Check it out! Also, there is a the Patient's Bill of Rights that establishes legal grounds for patients to treatment of their pain so they can recover from injuries and illness, to get an increase in functionality, etc. This should help open the discussion!

What is range cost for ketamine treatments? Please thanks

im so sorry you have to go through this.

I love this for you and I pray I one day get proper access to ketamine ❤

I have CRPS. I take Fentanyl for round the clock pain and Dilaudid for breakthrough pain. I agree with you 100%!

Thank you for this video. You read my thoughts and was seeing if anyone talked about the same thing I am soon for awareness on tiktok on youtube then found your video. I subscribed to you and am praying for you! Where do you go for your doctor as I have stage 3 crps and em, spinal stenosis and ruptured disc's. I have full body crps both legs and hands. I'm on opoids for 13 yrs. I run a non profit ministry. I can't function without opoids. My doctor retired and now I have no doctor. I've done everything spinal chord stimulator l, nerve blocks, injections, ketamine and lidocaine infusions, etc. Doc retired and now I can't find a doc anywhere in cali or Texas and treating me like an addict. They pushed me through severe withdrawals for 14 days, more pain then ever before, no sleep and I couldn't move. I am in a wheelchair. Docs are telling me to get back on spinal chord stimulators that don't help and made me worse and put me in a "box"and know nothing about crps and stage 3 type 2. I get out once to twice a week max and just to sit on a couch it takes everything out of me. I am now out of meds in 2 weeks. I'm willing to go to any state needed to find a good doc in my transition period who will see me,even for a few months as I try and get to venice. I have no luck here in texas. I can't do physical therapy soon if not for meds. They want to put me on suboxone, take me off all meds that help and then leave me with nothing. They want me to go to an addiction center. I've never had an issue with addiction. Its dependance and im on these for a reason. I never took drugs just to take them in my life and never will. If i could gef off these I would. I am a positive person because of my faith in God. Other wise, no way I cojld get through all ive been through past 3 months alone yet the yrs prior witj doc who retired who constantly put me through withdrawls and didnt fill meds and forgot about me or filled wrong and then retires no notice and knows how hard it is to find a doc for me or i never would have stayed with that doc and I cant get a lawyer as doctors are way too protected. Im going to go to austin to the governors office and pray he will see me or my awarness on our tiktok will go viral. Our page is overcome church on tiktok and jaminjohannashow. We mostly use overcomechurchca on youtube and overcome church on facebook for all sermons, worship, zoom meeting links, etc. In going to go live as i go to the governors office on tiktok and if anyone can help share that video so we can spread awarness and fight back against these docs, please do or/and please make a video if you feel lead. The doctors here tell me there is no way doctors will see a patient with opoids over 60mg. It's just insane. I take a few types of opoids and since considered higher doses, they treat me like an addict and told me that all my specialists for 13 yrs...hundreds I've seen, are wrong. I did find a place in Venice, Italy for crps that I'm looking into but it's self pay and a lot of money and we don't have it. I'm praying for a miracle. I have less than 2 weeks without meds and no doctor wants to take me on unless I get off ALL my medicine! They act like soma is terrible too. I tried everything for 13 yrs there is to try and they tell me to get on a pain pump, do what i did in past same spinal chord stimulators that dont work and are white noise, or dont go there. I don't want to do a pain pump as all crps specialists who saw me for years in past said it wouldn't be a good idea but they can't help me as in texas and cali and the laws prevent them, they say from giving me m meds and told me to go to other states. I'm a medical refugee right now. My husband can't work and got in a semi truck accident with severe concussion but thankfully he is recovering more daily and remembers the first year and half together out of 5. I am not able to work outside of the home and work from in bed as I lay down doing our non profit ministry to help others with mentoring, prison and homeless ministry, we also do bible studies, sermons, prayer, men's and women's groups, etc as my husband is a pastor and it's amazing how He remembered the word. We love doing whaf we are called to do! I cant do it without meds unless I'm healed. We have even thought of going to Mexico but don't feel right about it to see a doc. We have had to not pay rent this month, get rid of our car, take bus, sell all in home, etc to try and ger into apts for me and every single apt is not working out. I've never had that issue until now since doc retired and he left me without records, Rederral, and meds for 3 months. I had to travel to cali to see a doc who saw me one month only then husband had to go twice to pick up meds, then we had to go to a doc here who saw me 2 months and now no docs. They wont help me longer as they are scared about the dea. The laws are supposed to NOT affect chronic pain patients who are disabled and have tried everything else. All pain docs don't listen, won't look at my records or talk to doctors in past who diagnosed me at very well known offices, etc. I finally got doctor to send referral. Please share what doctor/s to go to no matter what state. I won't say who sent me unless you want me to but I just found their office if they ask online. Thank you and hope you are doing well and look forward to more videos. Blessings.

Loving with crps is the hardest thing I’ve done. No one can truly understand how much it took from me. I had to have surgery this past Tuesday bc of complications in my knee,!where the crps/rsd started. I pray for all my fellow spooners. This is so hard and so so lonely. My kids just don’t understand at all. They think mommy wants to see them and she always wants to cancel. That’s the thing. I hate so much how I’m not able to be a mom, and how even if I’m in a flats up and I try to have a normal bc

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.

To anyone who has CRPS DON'T GET A SPINAL CORD STIMULATOR! I had one placed and it amplified everything, caused more pain, other problems! DON'T GET ONE, IT'S ALL A LIE! DRS GET PD TO PLACE THEM/PUSH THEM!

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. ❤

I have doctor abandonment. I have no prescription now for anything. Because I stopped taking Gabapentin since it cause horrific side effects no pain relief and I can’t do anymore injections. Opioids have helped my pain in the past. No doctor I’ve found knows about crps and will prescribe pain meds only off label meds. The epidemic is illicit fentanyl not prescription! I have pain all the time and crps is killing me, financially, emotionally, mentally and my relationships are hurt.

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❤️

Its been 7 years for me... meds don't work.

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 am at the edge of a clift