Thank you for sharing

Ty so much! I was diagnosed with Fibromyalgia in 2000. I knew deep down that something else was seriously wrong. I tripped so hard, working as a cashier this past April and I just now am able to go without my boot and crutches. I just really pray that Workman's Comp will pay for everything, because I was diagnosed with CRPS after I tripped at work. And I have it really bad too. I literally do stay in pain. Pain pills don't really help either. Anywho, I just wanted to say Ty so much!🙏🙏🙏🙏❤️

Im a behavior specialist and a neurodiversity educator. I have worked with severe behaviors, for over 20 yrs and was injured on the job. I had third grade sprains, in both hands/wrists, with torn, ligaments and tendons. Doctors had me wearing braces on each hand and arm for over a year and a half, including when I slept. I explained a new lump in my forearm, that seemed discolored at times, and my hand would go ice cold/ numb. I kept being told that third grade sprains can take over a year to heal. Almost 2 years later, I finally convinced a doctor that something else was wrong, I was in tears. He looked at photos, left the room for a bit and came back and immediately said "this is CRPS." The fact that I used ICE and wore braces, keeping my arms without movement for long periods, caused bone /muscle atrophy and increased my CRPS significantly. I was also doing incorrect OT. I can no longer do the job that I love and have been excellent at for over 20 years. I am now almost fearful of it. Right now it is difficult to do anything that requires fine motor skills . I am one class short of a masters degree ( online)that I can barely finish , pay for, or probably even use because I can't type ,edit, use a mouse, or take notes for longer than 5 min. Even with the diagnosis and accommodations, the school staff knows nothing about CRPS, making it almost impossible to explain flareups. I've been out of work for two years, and continue to fight tooth and nail and jump through hoops for a decent amount from Workmen's Comp , which is still a joke. I continually have to explain to my lawyer, and judges what CRPS is, and to please google it . Voice text is a blessing, but a b*tch to edit. It also allows you to go on and on as I have here.😅 I think my point somewhere in here was to be your own doctor, be a strong advocate, and communicate with someone you trust to help. Also, if you have ANY trauma to a limb, pay close attention to your progress- because being immobile/ using ice increases the severity of CRPS IMMENSELY. I now have severe nerve damage, carpal tunnel, and arthritis . It has also spread to my right leg /shin, which isn't that painful yet, but at least "I" know what it is. Good luck and bless you all ❤️ 🙏🏻

I have suffered from CRPS Type 2 for almost 20 years, and am still learning about it. So thankful this documentary was made to help educate others on this devastating disease.

Wow, you know what this sounds a lot like it sounds a lot like Gulf War syndrome Tell me, doctors, have you inquired as to whether or not these people have taken fluoroquinolones or any other fluorine base drug? Because I'm no scientist and I'm no doctor, but I see the obvious correlations here. If u people would quit trying to treat symptoms (yeah I know it makes you a lot of money) and take a serious look at what's causing them. This world would be a much happier and healthier place for all of us. As I said, I'm no doctor, but you doctors poison me with Cipro, so in my opinion, that makes me qualified to speak. By the way, soldiers were given 40 days of Cipro prior to being deployed in the gulf war. Most of them are dead.

Give them Fecal microbiota transplant (FMT)

Did she ever take Fluoroquinolone antibiotics like CIPRO??!!

Crps 16 years. Had to have a mind split to survive it. To the ones with this I love you all, and hope one day we all become whole again.

I've lived with this for 35 years after an injury in the military. I've been through the gamut of disbelieving doctors, experimental treatments, inconsiderate family and friends,...you name it. It's hard to describe the pain so that people can even understand.

The depression and the “negativity” are a direct result of endorphin deficiency. The CRPS signaling is burning thru our “first responder” endogenous chemicals… A human can only make so much endogenous opioid and nitrous oxide and oxytocin…. All the “comfort” chemicals that our body sends to any site which signals “trouble”. There’s not enough left for even the silliest mental stress relief. So we are irritable, sad, unable to physiologically feel happy. Doctors should know they can supplement each one of these chemicals but their BS fight against opioids (and any TRUE medical care) means they’ll let us suffer and die. The CRPS is caused by the under treatment of ongoing pain too…. Like fibromyalgia as well… In the 50’s the dr would’ve prescribed opium and church. The human body has receptors for these chemicals (that came from plants) for a reason. We need access to the plant molecules that they lock up in pharmacies. And tell us they’re dangerous 🫡🤣🥹😂🥹 ULDN saved my life for CRPS pain. No drs want to prescribe it and mine asked me to please not even tell any one who prescribes it. He doesn’t prescribe it to anyone else. But it relives 80% of my CRPS pain in seconds. Ultra low dose naltrexone.

I have full body CRPS and not enough people know about the horror it brings.

Diagnosed in 1989 and still taking it day by day. Has progressed and spread throughout my whole body. I was a guinea pig at Cleveland Clinic when I was first diagnosed. Have been through just about every type of surgery, removing my ganglia, chemical sympathectomy’s, stimulator’s etc. Temporary, and permanent implanted, spinal fluid pumps, and many many other various surgical treatments. Received weekly blocks! including bier blocks for each limb. Just about every type of invasive treatment they came up with have tried, including morphine pumps, etc. ALL seemed to have caused more problems in the long run. Had to have bilateral surgeries cutting out, gangrene that set in both of my upper thighs and undercut the process up to breeding them as they healed every single day but I’m happy to say I still have my legs, especially after having known other RSD patients, who had their legs amputated only to have the RSD move upwards into their bodies. this is such an extremely scary medical issue! I have coded and been brought back five times now. I’m just turning 60 and switched over and OFF of all the narcotics to gabapentin and any type of more natural medicine I can find. Developed duodenal, bleeding ulcers from the NSAID drugs and was on a liquid diet for over a year. I know joke, that I am just too stubborn to die for sticking around mainly because it was just me and my kids and I did not want them to end up being raised by someone else. Today I lead a completely different lifestyle with a completely different diet I learned basically with the unbelievable support from my children, who have been through more hell than young or older kids should ever have to go through because they grew up taking care of me. To all of you out there who are in this agony, feeling like a giant medical experiment, utterly helpless, and alone… Please reach out to others with this disease in any way you can as being so isolated and so alone is the absolute worst thing for people with this disease. Learn from each other, share your experiences and find ways to laugh at the pain. Yes that may sound daft, insensitive, impossible, etc. however, I have found that laughter releases chemicals in your brain that actually help and you may too. Do whatever You must to survive! I wish you all good luck and hope that you’re able to find some type of shiny side to life while fighting this disease that you can find something to laugh about every single day that you don’t lose hope because if I could have gone through over 30 years with this disease and still find love and hope youcan too! Never give up! 💕I believe in You!

Please see Sally K Norton's book about oxalates, TOXIC SUPERFOODS.

Thank you.

Thank you for informing the public and support this huge struggle.

Thank you Mr. Mattocks for giving us a VOICE . I was diagnosed in 2005 after many misdiagnoses - accused by doctors of drug seeking, hypochondria, and by my family of being lazy. Please fight for us.❤. I’m an RN, BSN , with a Masters in Research. You’ve inspired me to speak up; to start writing or possibly a blog. I’ll be praying for you- don’t give up.

Any cure by 2024?

Was there a certain medication injected when they got their injuries worked on? Some commonality? Bacteria? Parasites? Prayers that they can find something to help! Maybe find the root cause. My heart breaks. Thanks for this video.

Maybe they DO know and they were told to be quiet about it. Just like lyme sufferers or those with fringe things like morgellons. I cannot imagine going through what those on the video are going through. I have had leg cramps and hurt my back where it was the most immense pain...but these people have it so much higher! 😢

I had to look up what it was! Tried to see in comments, but nothing was found except the acronym. Not sure how I even got this recommendation but im glad i did. I pray they find help for all those who suffer this. Sounds like the pain is like if not worse than trigeminal neuralgia!

😂😂😂 I AM OVER IT SINCE MY FULL ROTATOR REPAIR IN 2022. I WANT TO GO BACK TO WORK SO FREAKN BAD, BUT HAVE BEEN DEEMED DISABLED AT 54..SO NOT COOL!! WHEN IT RAINS IT GOES OFF THE RAILS AND HAS NOW RADIATED FROM MY DOMINANT LEFT SURGERY ARM TO MY RIGHT SIDE WHICH CONSISTS OF MY NECK BACK AND ARM. I THOUGHT I WAS LOOSING MY MIND AT FIRST. I AM ON 150 MG OF PRE GABLIN MUSCLE RELAXER AND EXTRA STRENGTH TYLENOL. COME ON GOD PLEASE HEAL ALL OF US WHO BELIEVE YOU ARE A HEALER.❤🙏🏾👏🏾👏🏾. THE NUMBNESS AND THE TINGLING IN MY FINGERS IS NOT COOL ALONG WITH THE CONSTANT SWELLING IN MY LEFT WRIST. HOPEFULLY SSDI WILL BE APPROVED SOON MY DOCTOR WANTS TO INSERT SPINE STIMULATOR TO HELP ME WITH THESE ISSUES. AGAIN GOD BLESS ALL OF YOU WHO ARE SUFFERING WITH THIS AND YOUR PEEPS DON'T GET IT OR CARE TO UNDERSTAND CAUSE THEY THINK U R DOIN THE MOST OR BEING A DRAMA QUEEN OR KING ❤. THIS ISH REALLY DOES FREAKN HURT AND IM A PRETTY TOUGH CHICK😂😂😢😮😁💪🏾🙄🎲🙄🙄😭😘👀😡🤬🙏🏾💯. ALL THESE EMOJIS ARE HOW I FEEL DAILY!

Thank you! I am watching as they are uploaded

3 family and friends died from Chemo...not their cancer-devastating😥

Beautiful, human first story telling at its finest

My journey/torture began on 1 May 2017. Please do not remove this video. People, medical aids, our “employers” have no idea and dont want to understand. The only people who have an idea are those who see us struggle every day. This is worse than cancer. At least with cancer theres treatment or an end. Thank you for this video 🌸❤️

OMG thank you. I've struggled with CRPD for as long as I can remember. In the beginning I had been told that I was lazy, mentally ill, and/or just anouther drug addict. More research needs to be done, its not nicknamed "the suicide dresse" for no reason. I know I have had thoughts about ending the suffering a few times.

Pain is pain. When people say "it's above cancer pain" it's based on nothing but our human misconception that cancer pain is worst. It's not. Pain is pain. The body doesn't diagnose or distinguish between the kinds of pain. I've heard women say that migraines are worse than childbirth. I'd say my migraines were the worst pain possible, but I've had a chance to experience other pain now that I'm older and I'd say bone on bone arthritis is equal to or worse than the migraines because though the migraines last 4 days, this never lets up.

R.I.P. Hannah Grace ❤🙏

I watched this film several times and I've never commented. Each time I try I break down in tear's because I don't know how much longer I can take the pain. I know that it started with a shoulder injury and proceeded down my right arm and into my neck. The pain is truly indescribable and spread throughout my body. Dr's kept telling me it was depression when it was an injury caused by a so-called friend who had thrown me into a brick fireplace on my 36th b.d. I searched for help from specialist to specialist for help with no results. After a few years of searching I was diagnosed with Chronic Myofascial Pain by 2 Doctors at a Hospital in Toronto. I was told that the only way to deal with this disorder was that I would have to manage this pain for the rest of my life. I was confused by their answer. I hadn't told my family or friends about what I was going through, because I felt as though I had a horrific disease, and wanted to know first before I revealed what I was feeling. When I asked the doctors what they meant about managing the pain, they said, with Morphine. I was livid and ran out of the office with my second husband chasing me to the elevator. I was shouting at him telling him that I refused to listen to them any longer. I went home crying and for about 4 month's I kept pushing myself through it until I was in my basement and crying uncontrollably and woke my husband up, and told him to please don't go to work today, because if you do...I believe I may commit suicide. I asked him to take me to the doctor and I would sign the paperwork to start the Morphine therapy. The first dose was comforting, however, the dose kept getting higher because the original dose just doesn't work any longer. And the trouble with Morphine and Fentanyl is it doesn't make the pain go away, it just exasperated it. No one ever tells you this information!! Then I left my husband and moved back to Toronto and was given a new doctor who had no idea what she was doing, and had no experience with my condition. She started adding more medication that only made my illness more unbearable. I was given Morphine/Amphetamines/Hypnotics and she also tried to give me Prozac and Olanzapine/Zyprexa. She would abuse me verbally, emotionally and psychologically. I finally called her out after 4 years, she and her assistant could never remember my name. So I referred to my Dr. as Doc. Shock, same sound. And her assistant Hillary as Helga. They never forgot my name after that. I transferred to another doctor she gave her two cents and the abuse continued with the new doctor, unfortunately. No one understood what the condition was!!! I finally found 2 Neurologists and help from a Spine Clinic. I don't receive Ketamine injections, I once tried and found they didn't work for me. Only provided very short term comfort. Lidocaine infusion made me feel extremely ill for 6-8 months? I was in and am still in isolation most of the time. In Canada we have a program called Dying With Dignity, or MAID Medical Assistance In Dying. I have gone through the process and have been approved a number of years ago, however, I am a Christian and I am trying desperately to keep putting one foot in front of the other. I have lost my family and friends. I have been called a fake and a junkie, by my family and friends. I am lonely at time's in this world, however, I am never alone. I have a VERY LARGE MAN walking beside me. I am about to be 66 years old, and was involved in a car crash in December, 2019 and the pain became horrific. I broke my right knee into 3 places and suffered a serious gash in the left shin. I was told after an MRI that I would have to have my lower spine fused which I absolutely refuse to do, knowing full well that in doing so would only be to my detriment. I lost my beautiful little companion "Curly" to Lymphoma in January of 2023 and I just don't feel as though I have the wherewithal to care for another little companion any longer. I am so tired, weak and worn. I am grateful that I haven't lost my sense of humor..although some days I just want to curl up in a fetal position and go home. My love for the Lord is my Strength, ALWAYS!! It is so very, very challenging and character building every moment of life to continue moving forward. I love to see the beauty in life and in people. I try my best to keep positive and and take care of myself as best as I possibly can. May God bless you all in this painful journey, and stay strong for there is strength in our weakness ❤🙏

The ONE and ONLY Maria Emmerich! Im in just for HER!!!!!

Insightful and practical

(ALL CAPS AS IAM LEGALLY BLIND) I HAVE HAD FULL BODY RSD/CRPS FOR 35 YRS. AND I DID KETAMINE TRAILS , I HAD A FULL BAG OF KETAMINE OPEN ON BOTH ARMS & WHEN I FINISHED N I CAME TO I STARTED SCREAMING AND MY ANESTHESIOLOGIST STOOD WITH YEARS POURING DOWN HIS FACE SAYING "THERE IS NOTHING MORE I CAN DO" SO I LAYED THERE SCREAMING FOR 5 HRS. UNTIL MY DR. RETURNED , & THERE WAS NOTHING ANYBODY COULD DO. I LIVE FOR MY CHILDREN, GRANDCHILDREN, GREAT- GRANDCHILDREN. THERE'S A REASON THEY CALL IT THE SUICIDE DISEASE- THERE ARE NO WORDS TO EVER EXPLAIN THIS HELL

Stumbled upon this film...thank you for bringing awareness to this monster. An insignificant fall with what I thought was a minor injury to my foot changed my life.I was finally diagnosed a few months ago, so Im early in my journey, but I feel as though I've had this pain forever.

Love the name “Urban Longevity “

I think you should have explained in more detail that type 1 and type 2 are two different things. Type 1 is an autoimmune condition and type 2 is because of bad diet and can be avoided and reversed. As Dr. Ken Berry says type 2 isn't named correctly, it should be called CTS (Carbohydrate Toxicity Syndrome). Frustrating that all through the doc everyone uses the word "diabetes" describing both versions.

Thank you ! There are so many warriors who don’t have the medical treatments they need nor do they have the support they need! Thank you for supporting your mother and so many more ! As a Warrior it brings tears to my eyes to know the amazing work u are doing !

I myself have lived with CRPS since 2014 I have made it my mission to motivate and help others It’s a horrible disease that NO one should have to deal with alone !

I love this bc it reiterates the same factors that play into longevity as I had previously seen on a Netflix documentary. What I take away is there is no magic pill but how we live our lives from our diets to our mental health what one would consider a healthy lifestyle inside and out

This was dope. Social isolation is dangerous.

I have been fighting RSD since January of 2015. I have type 2. It hurts physically and is mentally exhausting. I’m currently fighting for disability. I am looking at 4 surgeries in the next few summers. I’m tired.

Needed cause the chaotic rollercoaster of dopamine urges and emotional up and down has become OVERLY exhausting without battle or emasculating yourself to a physically strong mice. Seek exceptional personality is all I can validate as guidance. It has occurred to me that women seek submission (sweet but slavey) from men when initially I thought it was the other way around. A decent man just wants respect and for his nature to be embraced like she wants hers to be.

Eye opening.

I don't have crps but my beautiful wife does, she is the strongest person I've ever known. We trust in Christ 💯 and know that all things come out to the good for those that love God and are called according to his purpose 🙏🙏 we're trying to get her ketamine treatment but we're in Yakima Washington and since the pandemic everything has changed in the medical system, we trust in Jesus and 18:10

I have had crps for over ten years and live in a small town can anyone tell me if you can receive ketamine orally since the pain clinic I go to doesn't have an infusion center. I have terrible pain and only have oral meds there.

Charles, thank you for giving a voice to CPRS/RSD. I was diagnosed with RSD 27 years ago. I have had Type 1 diabetes for 52 years, and I’m also a 12 year breast cancer survivor. I must say CPRS/RSD is the most difficult of these three. I have a spinal cord stimulator which helps quite a bit. I recently twisted my bad ankle two days in a row and it’s caused the worst pain I’ve had in years. No one that I know, family or friends, understands this. Extremely frustrating. I’m a half glass full person which helps my sanity.

After 2 decades my Dr said. U know I have 2 patients out of 25 who have this chronic pain like u. 20 years to have a fulfilled true confirmation I am believed. This pain has no obvious cause and is constant with variations of type and places and intensifies. It is hard for people to accept it especially in this drug addiction and abuse world. I never understood why pressing on someone’s arm with my finger didn’t hurt them. My husband tries to understand how I can have a tolerable or good morning and be screaming in pain within five hours. So to u fellow suffering people I want u to know u r far from alone. I pray everyday for a tolerable one and will include all of u from now on. ✌🏻😘😘🙏🏻

What a beautiful work. You help change lives by providing hope. A big hug and may you continue to be successful!

Please have her try LDN low dose naltrexone. I brought it up to my pain management Dr and he read about it and started me on it. I have full body RSD. Every time I see him he is proud that I told him about it. He now has 6 patients on it and they're doing wonderful. He plans to try it on more of his patients. RSD warrior since 2001.

'PromoSM' 🤪

I had knee surgery in November 2019. 2 days after my surgery my leg was on fire 🔥! I could not put the ice pack on it as instructed. The oxycodone did NOTHING for the pain. Of course the orthopedic surgeon said it was “normal “ to have pain after surgery. I have had surgery in the same knee twice before and knew what to expect pain wise afterwards. But this pain was on a whole different level. Excruciating is an understatement. I was referred to so many specialists until a neurologist finally diagnosed me. Of course this was early 2020 now and medical appointments were very difficult to get. When the neurologist said there was no cure, I was devastated. I’ve tried everything under the sun. Nothing worked until Ketamine infusions. It helped a lot. Then my pain doctor stopped providing it because the patients couldn’t afford it and insurance didn’t cover it. No one else nearby offers it. 3 weeks ago I had a Spinal Cord Stimulator put in my back. It is helping to take the edge off the day to day pain but I’m not in a flair. So I’m hopeful it will help me when the pain is just too much.