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

[@JustAndreaEdna]

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

[@annekabrimhall1059]

If you poison the environment, long enough, it starts to poison the people

[@XSemperIdem5]

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.

[@TheLawWon]

@@XSemperIdem5 Very true and constant and intolerant pain is debilitating and it doesn't matter what the name of it is. Chronic Pain is pain and it's life altering when all you feel is pain. People who don't have chronic pain have no worries however the day they begin to feel pain everyday is the day they can read our comments.

[@davebarlow6457]

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.

[@allisonwales999]

Exactly how I feel...

[@86Smally]

Same here. Keep fighting buddy

[@davebarlow6457]

Thank you, same to you.​@@86Smally

[@fairyXXmystery]

same here 🙃

[@greatestever8976]

I'm right there with you. I highly recommend that people stop seeing doctors. They will kill you after first making a living off you. Focus on quitting everything that brings you more pain...for me it was driving, sitting, wearing bad shoes, eating poorly. I plan to do a fast again soon and am seeing a chiropractor 1x/wk. Severe insomnia and constant pain are extremely dangerous combinations. Be kind to yourself and know your limits. Walk away from anything or anyone that's toxic. In my case, that means not interacting with most people. I'm in so much pain I have little to no patience for bullshit anymore. Keep on fighting for what you deserve...a pain-free life!

[@IamFallingFeathers]

Thank You to the Team at CNA for sharing our Story

[@misskathleen490]

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

[@0NeverEver]

My words. I compare IT more to Having the pest in medival ages. People Had absolutely No clue what it was and If your Body would Not fix IT you where doomed. Nevertheless people would Tell you what it IS ("a punishment of God") for the simple reasons that Things that you think you can understand seem more controllabel. People don't realize that the "punishment of God" fallacy now turned into "it's all in your head" fallacy. IT Sounds more modern but IT IS Just the latest language Fashion of how To hide social failure in a societal acceptable way. What worries me Most IS that this crap Idea influences medival Research on fibromyalgia 😢

[@goop847]

Not to mention how HARD it is to find therapists who are trauma-informed and have real experience and understanding of chronic pain. And how most mental health practitioners have caused me more harm than good… you get really burnt out from the constant trial and error. Making yourself vulnerable and hopeful. And medical doctors rarely offer any resource for mental health. People really underestimate the limitations of mental health care.

[@mysecretlifeofpain]

I agree 100%. I’m so sick of it. Even when you have done years of addressing any trauma with all kinds of therapies…as long as you have medical issues, you’ve never done enough.

[@fairyXXmystery]

this is the most relatable video I've ever seen and it pains me I can say that 😶

[@ziddib8522]

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.

[@123pripri]

is the pain severity similar or is it in some days it is negligible, some moderate, and some days extreme? Or does pain differ by the hour?

[@ziddib8522]

@@123pripri the pain is always there, which I got adjusted to. I know my limitations. No sudden jerks, no weight lifting, no two-wheeler, always driving a car, wearing loose clothes - no tight clothes, wear only sketcher shoes, keep always warm, every morning hot shower, slow dynamic exercises for neck and upper black. And some days the pain is very severe, due to which I cannot exercise on that day. And sudden weakness sometimes out of blue for no reason. I always have a headache, I cannot think much. Brain fog.

[@fiona.musique]

@@ziddib8522Have you experimented with reducing your exposure to wireless devices? Some people report they reduced the pain by staying in a Faraday cage (radiation-free room or net).

[@jwsuicides8095]

@@123pripri For me it's 24/7 in every single cell.I don't remember anything else so can't quantify it that well. I know that even morphine doesn't stop it.

[@123pripri]

@@jwsuicides8095 have you gone to some doctors? Perhaps you can try steroids?

[@notrinaong]

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.

[@drpritanand7193]

Thanks for sharing your story and hopefully we will have more patients and carers coming forward to share stories and hopefully we be able to help them in near future

[@jove65]

Hi Rina, do share your support group so that more can be blessed. I know a few others who have fibro as well :)

[@fiona.musique]

Some people have reduced their chronic pain by reducing their exposure to WiFi and cell phone radiation etc. The industry claims that non-ionizing radiation is harmless, but they're just trying to protect their business. Telecommunication technologies often use polarized and pulsed radiation, which causes negative non-thermal biological effects (no heating required to do harm). There is plenty of independent research that proves this. We constantly repair our damaged cells, but at some point the body can't anymore and we get severe symptoms. Luckily, if the body gets a few days to repair itself in a Faraday cage (that is, without the damaging influence of radiation), symptoms can decrease and even disappear.

[@dexterm7666]

May you get well soon 🙏🏼🙏🏼

[@jenniferwithers1655]

Please please look up Howard Schubiner and the mind body syndrome. There is no physical cause for your pain. You are perfectly healthy. It can be cured. Or look up the TMS wiki forum. It has changed so many lives, mine included

[@martidiamond7109]

32 years... God bless you 🙏🏻🙏🏻❤️

[@SabBliss]

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. ❤

[@kcgrant9410]

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.

[@Fizzypopization]

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.

[@Truerealism747]

Do you have hypomobility I've had CFS 27 years pelvic pain 7 years fybromyalgia upper body the worst

[@specialagentorange4329]

How do you find a proper doctor to give you pain killers for such a diagnosis?

[@shannondominguez9725]

@@specialagentorange4329Do your research for doctors in your area who specifically specialize in chronic pain management or look for a clinic that has experience in treating patients with varying chronic conditions. My mom & I are blessed to go to a pain management clinic/have a provider we see who will see us & help us get the medication we need to live our lives with this pain.

[@kalatbasura]

​. With my experience, they don't need to be pain specialist. A good measure is if they LISTEN. If they do, chances are they believe and would give you pain reliever. Fibromyalgia has 3 FDA approved meds now. It shouldn't be a problem with any dr (i hope). In my case, a low dose of opioid helps. I believe it's crucial for my case. Now, if that's yours too. You gotta find a dr who believes in their oath to help and not to be scared by Govt's regulation against opioid. With mine, it's low dose so he said there's almost no possibility of abuse. Goodluck.

[@johneslick5139]

Half of people diagnosed with Fibromyalgia they have found have small fibre neuropathy. So people should get a small fibre neuropathy skin biopsy. It gives you a cause for your pain and other symptoms.

[@theOlLineRebel]

Thanks for that interesting tidbit. I have had lots of problems especially this calendar year. Finally orthopedics found I have “mild” lower neuropathy, though still no reason why. I’m wondering if it’s much more widespread and I’ll keep this in mind.

[@taneshabeverly6516]

I'm going through this agony now chronic pain all through my body, brain fog, migraines, dizziness 😢😢😢

[@marcd1981]

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.

[@jwsuicides8095]

I know what it's like to try everything and anything. Please don't give up.

[@goop847]

I’m so sorry. I’m so young and have had so many doctors abandon me. I understand.

[@sarahberesford4724]

If you have relatives blood line it will be fybromyalgia started at 17 now 44 check out Dr lenz

[@Universal8Connection]

🙏💜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.

[@cynthiajohnson798]

Eat a carnivore diet and both will go into remission.

[@DavidHarrison-js3ji]

Hi , I have lived with the most chronic pain ever for 30 plus years as the result of a work injury. I am so drained and worn out , pain is all I can think about , everything is shut out . I am coming to the end . I cannot live this way and always said I would not put others through what I experience . Anyone else come to this point in their life so I don't feel alone .

[@BRB123]

I've had this for over three decades, after all these years, I have just become extremely grateful. The pain is just a cruel amount of sadness I have to pray away for the future.

[@tajjie_taj]

Thank you so much for making this video. I am a Black Canadian dealing with chronic pain.

[@ago819]

hope a cure will be available soon 🙏

[@nate6045]

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.

[@johnsonwee6029]

what pain medicine are given to you if i may asked?

[@nate6045]

@johnsonwee6029 hydrocodone and Lyrica. The hydrocodone is probably not necessary anymore unless I intentionally eat something I shouldn't (like pineapple😭💔) but I think I'll still need the Lyrica.

[@sarahberesford4724]

Do you.havenhypomibility​@@nate6045

[@mysecretlifeofpain]

This happened to me, too. I suffered for so long with issues caused by something that were dismissed. The failure to address them led to more issues I’m dealing with now, even though I got several years of wellness in between. 😢

[@marymorris7396]

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

[@joannetan1939]

Thank you CNA for always bringing awareness for rare diseases. I am a rosacea patient with red face and ears, feel hot daily, skin burn and sting. I went through multiple blood tests and bound between specialists, a lot $ was spent. But no conclusion. Such derm issues are rare, people will give comments that hurt, why are you so hot? It does affect one’s mental health.

[@0NeverEver]

Cause and effect ...I mean why should anybody get depressed Just because He feels torture-style pain everyday? The truth IS that very rare disease get almost No Research because there IS Not enough Money in IT. Did you Look into this Idea of to much Histamin? I am Not Sure of what to think about that, but I noticed quercentin Had some positive effects.

[@greatestever8976]

People are healing themselves by going carnivore. No more drs or prescriptions needed!

[@muncibedduSicilia]

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 ❤

[@marcd1981]

Hello, thank you for your comment. Today is February 21, 2024, and I was researching pain management courses this morning. That led me to this video on KZbin for doctors not believing their patients. Which pain management course did you find? I have been reading about them, but the ones I have found say they are for medical professionals, and many are for when they are going for their degree. Are there any for the average person to take? Thank you, again, have a great rest of the week!

[@PinkiL]

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.

[@theresarobinson9141]

So true

[@evec2308]

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

[@DavidHarrison-js3ji]

I have a friend who suffers from this , it sounds truly aweful .vi wish doctors would believe the patients more . Why would anyone imagine chronic pain .

[@freemagicfun]

I have dealt with 24/7 pain since 1992. After all the testing, the doctors shrugged and said it must be a migraine. I have never believed that diagnosis. I do not know if it is fibro or not, but it sounds much closer.

[@ShipCreek]

It will more than likely be auto-immune based. Which is diet based. Stop eating sugar and grains, and increase meat and butter. Give it 3mths to see how you do. I wish you the very best.

[@Schermanaa]

Is the pain similar to chronic tension headaches?

[@freemagicfun]

@@SchermanaaIt is a 24/7 headache. Chronic for sure, not sure if it is tension... 😎

[@0NeverEver]

Have you checked for chronique nasal cave infection?

[@sarahberesford4724]

​@@freemagicfunany pain in body any hypomobilty check out Dr silver

[@geru5040]

It took me a week of research to come down to this condition , it took doctors 6 months to tell me I had fibromyalgia, I was laugh at , Doctors would look at me as if I was crazy bouncing around no one seem to care this condition has no mercy your body is throwing at you the worst feelings and pain it affects all your senses .. I related to high levels of stress , bad eating habits , pushing my body to the extreme , poor sleep . I’m in the search to find a way to live with this is a nightmare

[@Priyadarshini1993jesus]

I too suffered from body pain for three months. I consulted many doctors. In one of the tests, I came to know that my vitamin D is low. Then, I started taking egg a day. My body pain reduced immediately.

[@TheLawWon]

All patients with Fibromyalgia have low Vit D. Take 1000 units of Vit D in the summer and 2000 in the winter.

[@tornado7066]

My vit D is fine yet i still feel the pain

[@TheLawWon]

@@tornado7066 Yes, taking vit D will not take the pain of FM away. Every FM patient are different from the other. You need to consult with a Dr. who is a specialist in FM. I've been ill for 40.3 years, since I was 20. I'm still studying and researching FM. I Wish you the best.

[@rubychurch3466]

My sister went to a pain clinic on the Gold Coast Australia. They were useless according to her. Most of it is in your head she reckons she was told.

[@pennyiuliano7604]

From Melbourne, you wonder why they have this pain clinics ,useless,from doctors to specialists no one cares about,try these and that and come back in 2 weeks or so 😢

[@jwsuicides8095]

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.

[@annekabrimhall1059]

After 30 years my best treatment is diet! Once I saw that it really helps I was able to give up sugar, dairy, red meat. I eat salmon, sweet potatoes and kale a lot.

[@0NeverEver]

Anne , it's mportant to understand that WE are all genetically different when IT comes to what WE can digest.

[@0NeverEver]

You are victim of a confirmation bias. Because when there are people where mental health treatments Work, people notice that and say : Aha thats the Problem. But when you say IT does Not Work you can be Sure Nobody Takes Notice or remember what you Said.

[@jwsuicides8095]

@@annekabrimhall1059 Done very type of diet and treatment imaginable.

[@raheem2845]

@@annekabrimhall1059 Same bro ,after taking diet very seriously I've seen huge improvement.

[@marcoyeo9387]

100% this is what I went through

[@weilingliew1947]

It's so sad that people might not believe them when they say they're in genuine pain :( thanks for sharing these stories! Also the new painting style scenes and edits are interesting! 👍

[@Mr2Am3]

Well, if u looked at another perspective, where people did not understand or even know that fibromyalgia existed (like myself), then you might see why they did not believe it. I believe in most people lives, they have seen more Chao kengs (malingering) warriors over fibromyalgia cases. This shows the importance of such videos, creating awareness to educate the general public, so we could be a little more empathetic the next time where someone displays such symptoms.

[@taneshabeverly6516]

I have fibromyalgia and its so painful and the fatigue and nausea and vertigo is awful. I can't sleep fatigue 😴😢

[@anneeli3089]

Fibromyalgia is an umbrella term for unexplained chronic pain - just like irritable bowel syndrome, the dr can only come to this diagnosis after excluding all the other possible conditions. Whilst waiting for the test results to come back, make adjustments to your lifestyle such as exercising outdoors, eating an anti inflammatory diet, eliminating processed foods and sugar, take probiotics and probiotics. My friend who had fibromyalgia eventually sought psychiatric help, got diagnosed with bipolar and after taking medications, his fibromyalgia symptoms went away and his bipolar came under control. I’m not suggesting that everyone with fibromyalgia symptoms has bipolar but to consider the possibility that in some cases, there could be an underlying mental health condition.

[@yourfuturewaifu9061]

Chronic pain and mental health conditions are often comorbid.

[@EbonyHoopGyal]

Not eating processed foods is real expensive. I did it for years but i would also eat dangerously minimally at times which i think made my condition worse. Now i way processed foods because i can't afford plus also is too painful to cook😢

[@coleworldcole9438]

😂😂😂😂 everyone who doesn’t have it has the cure …. Ps helping doesn’t help saying it’s all in your head gets people killed

[@jwsuicides8095]

@@coleworldcole9438 You're right. Always a useful idiot out there. Usually they're the first ones to feel like they're dying when they get a cold.

[@0NeverEver]

Chances are high you got the cause effect correlation wrong. In the case of mental Problems, those could be caused by an unkown Body Problem Not Vice versa. I took the Same medication than your friend and they helped Zero to keep the pain down. And this IS AS Well what placebo studies are sugesting on this subject. You can Not build scientific Insights on anecdotal evidence Like the one you Just gave. There IS some statistical evidence for - I think- pregabalin to Work on both bipolar and fibromyalgia but the painkilling effect IS Close to non-sigjificamt. Similar stuff for antidepressants: there are positive effects in some but the significance IS Not very strong. There IS some research too that indicates one Type of neuroleptic has a general painkilling Activity (means IT would act AS painkiller for anyone, be He mentally ill or Not). This IS a KZbin discussion so jumping to conclusions and Not establishing what IS cause and what IS effect Like you Just did IS normal. But I pray that scientific researchers are a Bit more curious than you before they Draw conclusions. I Wish all the best to your friend however. If IT works for him IT works for him.

[@jennifert-lewis9426]

I had to comment in hope that it can help even one person, fibromyalgia is essentially the output of increased excitation of neuronal firing within the central nervous system. The central nervous system is where all sensory info is translated. Depending on how sensitised to threat the regions of the brain that process the signals have become, the sensory info will be determined as more or less dangerous (pain is a danger signal after all). And pain is protective. Another influence is that low level subconscious chronic stress in people who already have certain nervous system sensitivities, results in the release of peptides and other signalling molecules, which in turn influence how much activity there is within the central nervous system as a whole. This process is not set in stone. It is reversible (I’m living proof) when we can treat you through the lens of psychoneuroimmunology. I wish you all the best!!

[@0NeverEver]

I am Not Sure of how this Type of pain actually works. If I think of maximal "neuronal exitation" I actually think of a Major epileptic Attack and that makes you Not feel more, but loose consciousness. But the sleepiness that comes with the fibromyalgia could be some sort of last emergency effort to shut of the Signals coming from the Body. Because during sleep you consciously receive almost no information of the Body. Trying to use that mechanism in the daytime Just to kill pain however has obvious disadvantages. With claiming that IT IS reversible you a. Claim that all types of fibromyalgia pains have the Same cause and b. Claim based on a statistics of one (you) that IT IS reversible by psychotherapy. That IS Not a scientific approach.

[@jennifert-lewis9426]

Hi @@0NeverEver . It’s not necessarily maximal neuronal excitation, rather certain neuronal networks become more excitable over time due to too much perceived threat for too long. This may be due to a combination of past traumas, genetic disposition for sensitivity (which in itself is not enough to cause pain as an output), our accumulated beliefs and habituated emotions or emotional suppression, as well as any other stressors that mean our needs go unmet for a large period of time. With regards to sleep, pain mainly involves the subconscious regions of the brain (the lower brain associated with survival and safety, and the limbic regions associated with staying connected and feeling loved). These are not in our conscious awareness. So when we are sleeping, those parts of the brain are active, and our cortex (our conscious mind) is majoritively offline. As pain is an output of too much threat (the result of which is increased neuronal ease of firing), those survival and limbic brain regions areas which have become more sensitised are still active which can result in pain at night.

[@jennifert-lewis9426]

@@0NeverEver sorry missed the last bit. Everyone will have a completely different set of factors which lead to their unique neuronal networks becoming sensitised. No one’s will ever be exactly the same. There is absolutely no link between my stating that it is reversible and the cause being the same for everyone. With regards to the second point, psychotherapy really has it’s limits and is definitely not the approach to lead treatment in most cases. It needs to be a practitioner who is thoroughly informed in the neuroscience of pain/psychoneuroimmunology, yes to a degree psychology, preferably the neuroscience of trauma as well as the human condition.

[@0NeverEver]

@@jennifert-lewis9426 Dear Jennifer, Thanks for the explanation. The Problem IS that I have viewed some technical Videos in how scientist try to measure and Modell neural exitation/Neuronal firing patterns and I got the impression that they have little clue about what they measure. For example If they actually measure in different Angels to the Neurone firing than a Network might Look active or Not depending on that Angel. A Further Problem in this Idea that it's Neurone firing that create our Sensation IS that the Signals of the Neurons actually do Not Provide enough informational space to distinguish sensations from each other. Or in other words what you can read from a Neuronal firing pattern IS Indeed the strengt of whatever IT initially exited IT - but no more information than that. The reason IS that coding the strengt of that Signal in space and time into a Neuronal firing pattern already use Up all the pattern variations WE can See and that are possible in such a geometric pattern. It's Always possible that there IS something below the scale that WE can See but this are measurements Taken at living Neurons under strong microscops. But stuff that IS smaller than Neurons should be AS Well chemically very unstable/unreliable. To make IT short: I do Not believe anymore that brain science even has a remote clue what IT IS measuring. In this Sense "Neuronal exitation" sort of have become a Trigger Word for me because AS a Word, IT suggest a deeper understanding of the brain that is simply Not there.

[@0NeverEver]

@@jennifert-lewis9426 Sorry I did write a Long Response why pain and other Sensation can Not BE really encoded in Neuronal firing patterns from a Computer science Point of View. Sadly KZbin somehow lost IT. I am suprised that there are actual therapist WHO Specialize on the Immunsystem AS that IS so komplex that one does Not find a Lot of expert Doctors in that.

[@marielieful]

I caee across this video I have fibromyalgia 15 years now and is pure hell. This is awesome aware. Thank you

[@RayMak]

It’s tough

[@striverFor]

Much needed video .

[@TheLawWon]

I've been sick with Fibromyalgia/ Chronic Fatigue Syndrome for 42 years now and since 1982 when I was 20. I'm 62 now and have never had 1 day without debilitating symptoms. To be honest and to let you know just how I feel I can't take anymore suffering. I want so badly to die now. I'm sorry I told the truth.

[@theresarobinson9141]

O love try and stay strong I no fibro and fatigue takes everything you have i no for me I Try and think ever day a joyfully thought am sorry if that sound ridiculous bless you

[@TheLawWon]

@@theresarobinson9141 Thank you for the kind words. I wish you and the family only the very very best. Take good care and peace to you and no the comment does not sound ridiculous at all. I can tell that you are kind hearted, this world needs more people like you.

[@sarahberesford4724]

​@@TheLawWonhave you been checked for hypomobilty autism ADHD causation genes one now diagnosed after b27 years CFS fibromyalgia

[@TheLawWon]

@@sarahberesford4724 No I have not been checked for that. How do they check for it?

[@TheLawWon]

@@sarahberesford4724 I was reading about it today infact. No I have never been checked yet. Thanks for the interest point of the ADHD connection. Gabor Mate talks about it. Look him up, he very inteligent doctor.

[@Adonna2424]

I have fibro along with celiac & HLAB27 and it's living in hell 24-7. Like someone is constantly beating you, you ache constantly and no tests help. I'm very glad they mention that pain is different for everyone and the pain scale is subjective. Also finally getting an answer is such a weight lifted off you but then it's replaced with the realization that this is your life now - you will always be in pain.

[@docalexander2853]

A. S.

[@docalexander2853]

Have you tried gluten free Vegan diet?

[@Adonna2424]

............did you read my comment? I have celiac LOL that IS gluten free dafuq@@docalexander2853

[@123pripri]

No pain killlers can help?

[@Adonna2424]

@@123pripri not really. I'm currently on injections but they make me immune compromised.

[@yashnanda3427]

Been suffering from 12 years, I have no idea what to do, now my face pain has really increased! 😢

[@123pripri]

do painkilllers help?

[@yashnanda3427]

​@@123priprinope

[@g7u930]

My pains and fatigue were changed by taking 50,000mg vitamin D each week and taking grains and sugars out off my diet. World of difference!

[@yashnanda3427]

@@g7u930 I do that

[@ElishaRusli]

I live just across the border. I’ve been diagnosed with bipolar disorder in my 20s and fibromyalgia in my 30s. Thanks a bunch for this video! Finally something closer to home that I can share with my loved ones to help them better understand what we go through with fibromyalgia. Every experience in the video mentioned I could strongly relate to. Im glad I’m not alone. Anyone know a support group for fibro in Malaysia?

[@elingchin1886]

Just wondering how do u get fibromyalgia diagnosed in Malaysia? I am a Rheumatoid Arthritis patient, my first blood test that show RA factor was abnormal when my pain caused me can’t even stand up & walk, the doctor told me all I can do is ONLY get painkillers & physiotherapy. omg… 🙄 Then after I finally get a Rheumatologist, took NSAIDs got so much side effects & asked them why I’m still in so much pain? The doctor said she have no idea because my tests was all normal 🤷🏻‍♀️

[@faithf5846]

Fibromyalgia or Ehlers Danlos Syndrome? Often misdiagnosed for Fibromyalgia. Ehlers Danlos & Fibromyalgia can respond well to Low dose naltrexone (LDN) also prolotherapy by a talented doctor. 🙏 You are valued and should be taken seriously.

[@faithf5846]

Also look up the Low Dose Naltrexone website. Lots of information & utubes on multiple diagnosis.

[@mamemo359]

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.

[@lesleybrewis7217]

Definitely stress related.

[@gerryong1694]

I have been in chronic pain everyday since 25 years old and now I am 48. It is due to Gotham disease and septic arthritics, among other conditions.I am happily married with a child and career. I have been posted to 5 countries in these twenty years. If I can do it, everyone can. 😂hope this can bring encouragement to those in chronic pain.

[@gerryong1694]

Gorham disease

[@g7u930]

Vitamin d and diet changed my life. Cutting out all sugar and grains, and taking 50,000mg of Vitamin D a week changed my whole future.

[@erinlovenjak2501]

I have fibromyalgia

[@Joshua-m1q]

I think my fibromyalgia diagnosis was just a way for my doctors to cover themselves from lawsuits because they refused to help me until i ended up in a psych ward and it became obvious i couldn't be faking.

[@pia1938]

Could you share the type and scale of pain you feel?

[@EbonyHoopGyal]

Can relate so much to them... the hardest part i think is being not believed and still being expected to perform like an able bodied person. I'm honestly thinking of getting a cane but so scared/embarrassed how people will respond...😢

[@merplight]

Go for it. Get the cane. Anything that can assist you and improve your quality of life, don't hesitate to do it. People might talk, but they have no idea what you are experiencing and they don't understand. I can relate because I felt similarly when getting my cane. If people can wear glasses with no shame to improve their eyesight, surely people can use canes and other devices to assist with their mobility. It is a part of life.

[@lalalallalalallalala]

let me be super clear as somebody with fibromyalgia, do not listen to comments about eliminating food variety in the name of “solving” the problem, like 0 sugar, 0 processed foods, 0 “anti-inflammatory” foods, which are also incredibly broad categories . a registered dietician is far more likely to be able to help with that avenue if you choose it, but managing pain through restrictive or rigid eating practices can create an eating disorder that would greatly risk an increase of pain and bodily damage, i’ve seen it happen.

[@badsworthcats]

I have CRPS,Lupus and Long Covid the latter two can be tested for.. My daughter has Fybro and because of it and the fact previous she was not believed she now rarely goes out of the house 5:29 she also has sensitive skin and we both have depression. We are both on Pregabalin and antidepressants I am on both oral and tablet morphine in both cases the medication just take the edge off but some days nothing works and you just can’t get out of bed.

[@marcd1981]

Hello, and thank you for your comment. I am sorry to hear about you and your daughter. It is disheartening to find out how many people are going through something like this, and the medical community seems to be so far behind. You mentioned Long Covid can be tested for. How do they test for that? My wife and I started reading up on Long Covid as a possibility for my condition, and I am wondering if it is part of why I have several issues with the same symptoms.

[@Withhisloveandmine]

Had my doctor tell me that Fibromyalgia is not real, and is just a blanket term used when doctors have no idea what's wrong. My condition and pain was dismissed in the same manner. I still don't know what's wrong. All they can offer is pain management.

[@123pripri]

does pain management help?

[@muncibedduSicilia]

​@@123pripriyes!! After years of pain and doctors not knowing or saying it's between your ears I finally got a pain management traject. At first I thought it was stupid and something to keep me occupied, but the fact that we were with multiple people made me realise I wasn't alone but also that I wasn't excaggerating or making it up. It was a 9 months traject, very intense, but I learned so much! The most important I learned was how to regognise 'the orange flag' - feeling pain coming up in an earlier stage so you can change your behaviour at that moment (for example washing the dishes and take a break for a while as soon as you feel discomfort and before the pain would become excruciating). This way you will have to deal with less pain than when you continue untill you can't no more. It is a process, and a pretty hard one because it might feel like you're giving in. It means excepting, which is hard because you don't want to. After the course it took me at least a year to implement it because of stubbornness and even now, 10 years later I still find it hard to accept and sometimes crossing my boundaries but I am now more in control of the amount of pain. Do it! ❤

[@olliviermae]

I need the right people 😢

[@puffinjuice]

Modern doctors are useless. They do the basic tests and if they dont find anything they just stop trying to help. I have chronic headaches and they also couldn't help me. I feel your pain!

[@metasamsara]

they don't want to admit cannabis and psychedelics are the answer.

[@yeoweian9523]

Modern doctor just come work at 9, go home at 5. After that bye bye wash hand.

[@Linda-it5sn]

I had similar symptoms in the past for more than 10 years and tried numerous remedies to no avail. Luckily few years ago I read articles about Gut Health which is gamechanger for me. I started to take good concentration of probiotics + prebiotics supplements which bring my health back to normal. No more inflammation, fatigue, brain fog, feeling depressed due to this condition ... No more feeling like an old tired hagged elderly woman....

[@sam5381]

What dosage of pro n pre did u take?

[@Linda-it5sn]

@@sam5381 i took Biogenics 16 & Floragenesis - 1 sachet each

[@cragre28]

It's not just fibromyalgia patients that Drs. seem to think you are either faking or that's it's mental. I have degenerative disk disease and I had to have my neck fused at age 39 and I also have 3 herniated and bulging disks in my lower back with one protruding out even farther. At my last Dr. appointment, I told them my pain was increasing and that at night it was waking me up and I had take an extra pain pill, and I only 4 10mg perc a day and I asked them to go up to every 4 hrs instead of 6 or at least give me 1 extra pill a day The treated me like I had just asked them for a crack and pipe to smoke in the lobby. They told me I better not take that extra pill to make it through the days and nights because I would run out 3-4 days early and if they drug tested me, I would fail and they would fire me. That is pychological torture. The Dr. said to not just not sit around and think of the pain all day and that would fix it. I asked 'how is the pain waking me up at night having to do anything with that?' In other words, she stopped just short of saying it's all in my head, even though I have the MRI's to prove my condition.

[@jana8599]

I STRONGLY disagree with the one Doctor's statement that we feel pain more: meaning if you hit us, we feel it more. As a child, I thought people were so whiny about shots or skinned knees. OK. Second point My Granddaughter and I stopped being able to breathe at 6 months, which is when we humans lose our Mother's immunity. Granddaughter was diagnosed with Myotonia. Is it the same thing? When I was pregnant, I felt absolutely joyful and FULL of energy. I read that a fetus can correct the mother's inability to do something metabolic that I don't quite understand. But I know NOW what the rest of humanity feels like when they wake up. Wow. Joyous. We, on the other hand have to stretch before we move (like the dog and cat). I slap a leg, to break up a feed-back. I take the hated Gabapentin. I was diagnosed in the 80's. It's great to have a name for it. (sigh) It's like going to a mechanic with a flat tire, expecting help. He tells you that he can't fix the problem, but you have TIRER-MUS FLATICUS. That will be $100, pay on your way out.

[@shawnafsworld7431]

Dealing with 24/7 Chronic Pain DUE to a Rare Chronic illness ( HyperMobile Ehlers Danlos Syndrome ) is what I have & Takibg ( The OTC Advil , ibuprofen, Tylenol, Aleve ect Nothing I Take that Drs Push & so far Nothing help stop my pain maybe a Short Hot Bath Momentarily helps but pain starts all over again and I hurt All over my body. 😢 Most people don’t understand How bad ( us complaining About Pain , ISNT Your Typical - Ouch My leg aches ) My Chronic Pain Equivalent Would be the Feeling of like ( a Charlie horse ) all over . And At Time’s & I can have Multiple Area’s throughout my Body Hurting at once & on Different pain Levels too it’s horrible honestly.

[@yashnanda3427]

How do we join a support group?

[@m.j.golden4522]

I had when I suspected to be fibromyalgia. Everything in my body hurt except for my head but I could not really describe the exact type of pain. My mother has trigeminal neuralgia so maybe there is a family link. In any case, I went to my doctor. They told me I didn't have fibromyalgia, so I wasn't going to get any help there, but they didn't know what I had. I decided to stop with sugars and go on any vegetable soup, salad, purified, water, diet to see if that could help I think it did because I have a lot less of that invisible, mysterious pain that my doctor says, is a fantasy called missing limb pain.

[@damonhill4909]

I have sciatica which started in 2013 and continues to this day. The amount of pain is similar to fibromyalgia. My doctor at Kaiser prescribed meloxicam, gabapentin and duloxetine which doesnt help. Ive tried all kinds of online products to relieve the pain in my gluteus, and right leg but nothing has reduced it. The only thing that works temporarily is 800mg of ibuprofen taken 3times a day. Chronic pain sucks.

[@user-co8uf1mj6c]

Life is not worth living anymore

[@annekabrimhall1059]

Been there!

[@sarahberesford4724]

​@@annekabrimhall1059are you bit better

[@harishantosh2228]

Im diagnosed fibromyalgia too 😢

[@Findingsunshiness]

Omg i feel like that's me. I am constantly dismissed by countless doc and even psychiatrist tell me my subconscious develops these pain. But my pain is bad. My whole body just hurts. Tenderness is just through the roof. 😢 Nothing works. I am like JJ. Did everything including Tcm n even church because I'm desperate. I also download papers n read and read

[@LYJManchesterUnited]

Now with covid-19 and long covid more and more ppl are getting this out of nowhere. I have LC and I'm so scared what it will do in my body.

[@robynfoss9449]

Fibromyalgia and myofascial pain syndrome. Find a myofascial release practitioner near you to release the painful connective tissue, and get your gut health in order, so you do not have overgrowth of bad bacteria in your digestive system

[@Valir15]

My pain reduced significantly by adapting a vegan diet, sleeping 7-8 hours a night, exercising every morning, and practicing meditation. Doctors dismissed my symptoms too so I had to cure myself!

[@sarahb9240]

I feel for them. A tick bite left me with chronic dizziness. Lyme disease is one cause of fibromyalgia. I wonder if a tick bite be the cause of some of these folks suffering. 🙏

[@mrandom4765]

I got my results and I couldn't process it? Until I had to explain why I had to miss my finals and I just was grasping for an explanation that wouldn't just sound like a whiney excuse... until my lecturer said "that must have been hard for you." And i just broke down crying for the first time and it was- AWKWARD? but cathartic.

[@muncibedduSicilia]

❤

[@wh6055]

Healing Back Pain by Dr. John Sarno. Helped me.

[@g7u930]

Have you gotten your vitamin d checked? That helped my pain. Also there are parasites that cause pain too. It's amazing what comes out when you go on a parasite cleanse diet!

[@g7u930]

And western doctors don't regularly promote parasite cleanses. More money to the pharmacy companies!

[@easymukbang3835]

Pain from body is to communicate with brain that something is wrong with the body like alarm system...

[@0NeverEver]

The discrimination through the doctors is so hard. I don't even dare to go to the doctors anymore. I anyway want to die, so not going to the doctors seems to be the right choice. Remember if you are a doctor and reading this: none of your patients will clearly tell you that the pain is so bad that he or she constantly wants to die (for fear of hospitalisation). That the patient does not imediately suicide is not as sign that he or she wants to live. In the case of disabled person relatives often in some form depend financially on disability pensions or financial aid as caretakers. So that patient will carry on through the worst forms of torture without showing it much to the outside. I don't know how to fix this sort of delusion on the side of doctors, it might be necessary to make them sit on some kind of anonymous help line for an hour per month, where people explain how it really feals to talk to doctors when you have a non-standard disease (a disease for which the cause is not really known). And they certainly need a training in the idea of "just world fallacy" because this idea that it is all "in the patients head" is just another form of that fallacy. I feel like what in the mediveal ages would have been the "its a punishment from God"reaction to disease with unknown causes has now become the "it's all in your head" reaction. It's just a psychological fix to put distance between you and the suffering person, to shut it off, so that you don't need to hear the bad news anymore 😢

[@MooonChild711]

They don’t think people are “making it up” but that “fibromyalgia” is only in your head. WHICH IS TRUE. People who claim to have “fibromyalgia” are suffering the effects of OTHER issues such as depression and anxiety. It doesn’t actually exist.

[@BethHutch-pg5yi]

me too too many doctors don't have the courage to help us i've tried everything too

[@melvyncarrot4741]

There could be a test to find out the cause ,i came across a video on a doctor who talked about fibro, he said it has to do with mitochondrial cell dysfunction. Unfortunately mitochondrial testing is not available in singapore .

[@mrbigb12]

Seeing a chiropractor helps alot

[@eeazizi4609]

This kind pf pain is similar to kratom withdrawal pain, you felt pain at your joint,muscle and bones, your emotional stress because you can't described that constant pain you felt, when check everything is normal, I would suggested try suboxone as alternatives to reduces the pain,

[@ShipCreek]

***I had fibromyalgia for 20yrs. I couldnt take painkillers because they would create even worst pain. I healed myself. There are many testimonials of others who healed themselves as well. ** I started a ketogenic diet 6 yrs ago. By the end of the first year I realised I hadnt had a flare up. 6yrs later Im carnivore and all my auto- immune diseases have cleared up. They return if I eat sugars and grains. So I cant eat any type of flour that is made with any type of grain. You dont have to suffer.

[@Ash95900]

Does anybody with fibro feel paresthesia in their body ? Especially, hands and feet

[@frederickgent1918]

Can this issue be very similar to osteoporosis / work enduced degeneration degeneration

[@EmilyEverglot]

This sounds like a genetic connective tissue disorder, like Ehlers Danlos Syndrome, which is often misdiagnosed as Fibromyalgia.

[@tofumonster8913]

To downregulate the pain / inflammation signals, perhaps can try a series of chiro adjustments / acupuncture, Qigong etc

[@kellwx]

There are definitely advance lab tests to investigate further, BUT it really depends on WHO is analysing the result. Conventional doctors usually treat the “paper” but not the person as a whole, and they are not trained to link patterns within various lab results. If the only tool you have is a hammer, everything looks like a nail. That’s how modern medicine failed 😅

[@schadenfreude6274]

Chao Keng. :)

[@radhika5206]

Rather than killing myself it is better I would go to college for atleast 2-3 days..Im doing exactly this..

[@robynfoss9449]

Don't buy into it that you have to live with your pain! It all starts if your gut health is compromised, then in turn everything starts to struggle, get you flora overgrowth of bad bacteria under control thru a naturo pathic dr, get on natural thyroid supplements and adrenal supplement support.

[@suhendrasunario1009]

Interesting to know

[@MrGalaxygs]

Gabapentin helped me get relief of chronic back pain and become more productive. This significantly increases the pain tolerance threshold

[@johnsonwee6029]

may i know the dosage you are on?

[@MrGalaxygs]

@@johnsonwee6029 It can start with a dose of 3x100 mg, then increased to 1-2 x 300 mg. Up to a dose of 3x300-600 mg. The dose is increased every 1-2 days depending on patient tolerance. Better consult to your local MD

[@ilaylacmillikan6650]

@@johnsonwee6029 Doctors will always start you on the lowest dose and work their way up, according to how well it’s working for you. It’s a type of med you weane yourself on and off of.

[@no...4687]

Been through it,healed myself.

[@muncibedduSicilia]

Please tell us more 🙏🏼

[@no...4687]

@@muncibedduSicilia it's just sunken chest problem. Muscles is tight near the heart and spincter and you get all sorts of problems. For a start you can try face pulls, but with 2 bands hold your hands and shoulder behind body vertical. You might faint a few times if you go too fast. Keep the area safe. ....too long to write a recovery programme here. Sorry

[@carlakenyon6073]

Get a grounding mat

[@GodspowerJames-r5v]

*GOD bless Doc uromi* on KZbin for the healing he gave to my daughter who was suffering from herpes virus.❤

[@stevenjames9487]

I think this is caused by third spacing. Sometimes when i have a cold my symptoms will present with back pain or body aches. The pain is the skin level, even my hairs hurt. Warm epsom salt baths are the best treatment i have found.

[@metasamsara]

Try magnesium supplements, especially chelated magnesium, epsom salt contains magnesium so that might be why. magnesium is a powerful muscle relaxant.

[@sam5381]

Even esr?

[@ruruama3666]

My mother has had fibromyalgia since I was 2 years old (year 2002, most people didn't even know this existed). I know from up close how awful it can be. It's even worse when doctors don't believe her when she says she's in pain. I don't know if anyone is looking for a cure, but nobody seems to care, and it breaks my heart. I pray that it's not genetic, because I don't want to live in pain like she does...

[@muncibedduSicilia]

As a mother of a child similar to your age, my tip for you would be to pay really close attention to the real you. Stay close to yourself, you should never run ahead of yourself. You are number 1 in your life, not your boss/work for example. I think a massive burnout triggered my fibromyalgia. Personally I don't think it is genetic. Nobody in my family has it. Stay positive ❤

[@elierry]

Is this conected with trauma?

[@elierry]

Ok, now they explaine it, it is.

[@robynfoss9449]

Yes it can be the result after a trauma

[@elierry]

@@robynfoss9449 I think that I have it too.

[@PlanetofHearts]

❤

[@miamise6667]

There is so much missleading guessing. I have it..but less and less. Find a book of Anthony William about Thyroid gland or others. All is real inflammanation. Most of viruses are not known or measured. Thats what after covid is similar( new virus). And its important to heal body from old trauma and stress. Good luck

[@kimdehoop-lanting6043]

Hi, have you been tested for vitamine b12? Sometimes those results are misinterpreted or oral vitb12 can give false results. And if you have not enough of this vitamine in your blood, it will cause pain, fatigue and brain fog and a lot of symptoms. Have you tried vitamine b12 injections? Hope you will less alone and in there will be a treatment for you.