Living With Chronic Pain That Even Doctors Don’t Believe - This Is Fibromyalgia

I've had fibromyalgia and M/E for 14 yrs now. On really bad days I often go to bed hoping that I won't wake up in the morning , the pain and feeling of illness can be unbearable , it sucks all the joy out of living until you have nothing left.

I have been suffering from FIBROMYALGIA since 2004. The pain is 24/7. However, sleep is the only good thing for me, as that is the only time, I don't feel the pain. I LIVE ONE DAY AT A TIME.

This is growing in America as well. It's taken over my life.

Being able to outwardly portray that you're okay when you're actually in so much pain is something I've found only others with chronic pain understand. In my case it's chronic joint pain, not fibromyalgia, but a lot of what was shared as personal experiences with chronic pain in this video applies to my experiences too. It's so important for videos like this to be made and shared. Thank you to everyone who chose to speak about their experiences and to the medical professionals who acknowledge how real and how much chronic pain impacts every aspect of our lives.

Hello! It's Rina here. Thanks everyone for the kind support for this video. I would like to express my heartfelt thanks to producers, Zhi Xin, Jinee and the CNA team for featuring all of our stories! I hope by sharing our stories, it will educate everyone on what it is like to live with chronic pain and how to support those affected.  If you are struggling with chronic pain, please know that you are never alone and thank you for being strong. You are important in this world. <3

I wish a speedy and easy recovery to everyone featured in the video and to those who commented here expressing that they are facing pain. ❤

I had fibromyalgia young and it wasn't until i was 37 and finally put on pain management with proper pain killers that I started to be able to live my life again.

Thank You to the Team at CNA for sharing our Story <3 Hope this will create awareness and help many more people ◡̈

🙏💜Thank you for sharing. This is validation. A silent killer is not something I wish for anyone. I was diagnosed Fibro and Lupus in 2005. It took years to discover. The chronic pain feels like bruising on my bones with numbing and pins. This video says it all. I always wished my results showed something so that at least I can take something. The worst feeling is not knowing but living with it while others can't see it. Of course this led to depression, anxiety, suicide, basically my mental health was broken. I had to leave an abusive relationship for obvious reasons and was left with no insurance. Having this chronic illness makes it difficult to get approved for insurance or even disability. So, I've been living without it since 2014. I've learned to embrace what is, manage my pain as best as I can as I continue to learn more the holistic approach and surround myself with only those that support me and not gaslight me. I pray for all those that are suffering. Much love and light to you. 🙏💜 You are not alone.

it took me years of testing and various doctor visits before I was diagnosed with fibro and then concurred by another doctor. Im constantly tired, sore, etc and flare ups are horrendous. Healthy people do not understand and only think we are lazy.

Not sure why I have pain in my body sometimes too. But I did realise that in my previous workplace, stress triggers it. The pain was real but nobody understood it. Spent so much money at doctors who just gave me painkillers. In the end, I had to take NPL for 3 months because taking mc or having to rush to doctor appts after work stressed me out even more! The pain magically disappeared but even until now, the numbness and pain will return when I'm stressed out. Watching this video, I feel like trying out a healthier lifestyle. There's no harm to doing that, and I hope so much to be normal and healthy again. I relate to the person who said that he had to fake he's ok every day because I'm also aware that ppl may start to find you annoying or a problem and it can be an obstruction to making friends or being promoted. It's really very troubling and upsetting. But my takeaway is to treat myself better.

This aggravates me how they tend to imply that something like chronic pain is always somehow related to past traumas. WTF? It is a medical condition. Like cancer. They do this to make you feel you are responsible to get therapy and perhaps they wont have to hear you complain

I've had bladder pain for over 10 years without an actual diagnosis because US doctors would do like 1 test, see nothing wrong, and then shrug and give up. The problem was the test WOULD show something wrong and they either weren't trained well enough to see it OR they didn't care to tell me because having me coming in for surgeries and pain medication made them more money. My whole family thought I was a drug addict because all I could do was take pain meds just to make life bearable. I finally got my diagnosis last year and it's been really wonderful going to physical therapy and being more productive and reducing my pain meds. Nobody wants to sit at home all day missing out on life. If someone says they are in pain all the time, believe them.

This is so informative! Thank you for raising awareness about this issue.

I understand JJ, It takes a lot of mental strength to get through everyday,taking it one day at a time helps, some days are bearable and other days are torture. Personally I try to focus on anything that takes my mind off the constant pain like music, hobbies etc, if I think about it too much I actually feel worse

I’m so so sorry that you are experiencing this awful illness. I’m sorry that you are suffering. And I’m even more sorry that no one seems to believe nor understand you. I’m 47 yrs old and in 2011 I was diagnosed with the rare disease Avascular Necrosis. In short my bones, mainly at the joints are decaying and dying. I’m a critical asthmatic and the high dose steroids prevent the blood from flowing to the bone essentially, killing the bone. My disease is extremely rare. There is no treatment. There is no cure. It is disabling both physically and mentally. Currently the necrosis is in both knee, both hips, and 3 other areas. The pain is excruciating!!! Like described here a sharp pain from a knife over and over at times. But it mostly feels like a bone is broken, again, again and again. Even today I sit in my bed screaming and crying for two straight hours. I would not wish this disease on anyone. Being that I am a critical asthmatic, I often need the steroids to keep me alive while at the same time killing my bones. I have been told to learn to deal with it because it will only get worse. I hate that I can relate with you, because I don’t want you to suffer either, but I can understand.

Much needed video .

Thank you so much for this video and spreading awareness. What hurts me, besides physical pain, is the excessive interest of the medical world in long covid. The symptoms are exactly the same as fibromyalgia. They have even done studies on how the cell nucleus of their muscles show extreme activity even while doing little or nothing. This has been proven for fibro patiënts years ago but nobody seems to care. The brainfog, the not being able to sleep, the tiredness. Say you had covid and everyone feels for you. Tell people you have fibromyalgia and they 'forget', don't care or even tell you to get over it because it must be between your ears. For everyone interested: a pain management course really helps! It gives you a lot of insight in your behaviour and teaches you to better listen to your body which, if implemented correctly (that takes time!) can help you prevent in being in more pain than necessary. Love from the Netherlands ❤

Thank you for this video. I have a relative with fibro, and I knew a little about it, so this gives additional information we need. I am a 60 year old male, in very good condition, my wife and I are athletes, we have played multiple sports, we strength train every week, and our latest addition to our routine over the past year and a half is outdoor stair climbing. Unfortunately, I have been dealing with chronic pain (from July of 2023 to now, February of 2024) in my right lower back and right flank area. This pain is from when I get up in the morning until I go to bed at night. All day, every day, non-stop pain. My side feels like it is in a continuous cramp, and the muscles along my mid to low spine on the right side are as hard as a rock all of the time. The other symptom I have is the "love handle" on my right side has been completely numb for the entire 8 months. And none of the medical professionals I have seen seem to care. None of them have even mentioned what it could possibly be, or what type of treatment to try for the numbness. They just move on, tell me I'm fine, and send me home. I have been to 11 different doctors over these past 8 months, and I have had multiple blood panels, multiple CT scans, Ultrasounds, and MRI's of my abdomen, pelvis and Thoracic / Lumbar spine areas. Just like what was mentioned in this video, all of my blood work comes back normal, and none of the imaging has shown anything wrong with my muscles, hip, or spine. I have been to the ER twice in this time due to the severity of my pain, and the CT scans (with and without contrast) did not show anything that could cause the pain. So they sent me home without looking any further. The only good news was the blood tests and scans have eliminated infections and cancer. But none of the doctors can tell me why I am in pain. They can tell me what it isn't, but not what it is. I am starting to feel like they do not believe me, as I have not heard from my latest doctor, an Orthopedic spine specialist, since our video call on February 8th. He told me he had a couple of things to try, but no one has contacted me since. Back in December of 2023, the spine specialist told me there might be an issue with a herniation of the T12/L1 vertebrae (which of course, is very rare). He performed an Epidural on January 2, 2024. Two weeks after the Epidural, there was no change in my condition. The spine specialist then tried a Cluneal Nerve Block on January 25, 2024. Two weeks after the nerve block, there was no change in my condition. This is when I had the follow-up video call, on February 8, 2024 to tell the doctor nothing had changed. And now I have not heard back, no email, no doctor's site message, no texts, and no phone calls. Even after messaging his office directly on Monday, February 19, 2024. Crickets. I have also been trying many things on my own; chiropractic treatments, acupuncture, physical therapy, and last week (Feb 16th) I saw a Trigger Point Therapy specialist. None of the treatments I have gone through have helped relieve any of the symptoms, and I follow the suggestions of who was treating me for what to try next. I am starting to feel like I am losing my mind.

I went decades without help. I have been laughed at by medical professionals, had others write terrible things in my medical notes - such as that I might be a drug addict. I know there are others worse than me but I have no memory of having any cell of my body being without pain - apart from when I was put on morphine patches and the bottom of my feet were without pain for a few hours. Mental health interventions haven't made any difference at all. I have tried everything, taken part in experiments, paid what I can for any treatment imaginable. Every single breath is agony to take...the movement to do that is hell.