What It's Like Having a Fibromyalgia Flare | Fibro Chat #10 

I can't hardly remember what not having any kind of pain in my body actually felt like. I know there was life before fibromyalgia and chronic fatigue but it seems like a far way dream.

Another thing that's difficult to deal with is its an "invisible illness." 😕 People don't believe you're suffering because you appear "normal." Like we don't have to explain anything to them.

Does anyone find that after a certain amount of time trying to lay down to try & sleep that the pain gathers in certain areas so intensely that it eventually becomes so excruciating that you need to get up?? Thank you SO much for the video btw!!

The pain is throughout my whole body along with my skin is on fire. I’ve been diagnosed 1997. I didn’t know that this even existed. My family and friends thought that I was faking before the diagnosis and even after the diagnosis they thought that I was faking. So I learned not to express the pain during the flare ups. It’s so funny when they are not feeling well that they except you to care for them but they cannot reciprocate the care when it’s you who is in need.

I was recently diagnosed with fibro…. It’s shocking to hear other people describe what I thought was “just me” thank you

I am 57 year old. I have suffered for more than ,30 years. It's nice to know that someone else gets it. It is a tough illness. It really is.

The burning and joint pain, stiffness and stabbing pain, migraines, ibs and back pain Is terrible. Everything hurts sitting, laying or standing, noise or stress makes it worse. None stop pain and 10 times more in a flare. The whole body feels like it’s been sprained. People have different levels. My normal level of pain everyday is always at 5-6 and gets worse as soon as I move. I have Severe ME a lot more symptom, paralysis, FND, Nausea. I am mostly Bedridden and use a power chair. Have to be driven to appointment, The brain fog is bad my vision also is affected. Thanks for this video it explain a lot more then most. Giving some idea what we are experiencing, Some worse then others. I pray the Lord will keep you strong to continue your work.

Anyones skin hurt? Even a breeze hurts much less touching -clothes bother me. Sometimes feel on fire

Is nice when you realize you're not alone in this situation. I'm currently in a flare and yes, is hard and sometimes your body doesn't want to move but your mind is going so fast. But still, it's just another flare and it won't last. I really enjoyed your video. Thanks for sharing.

After my daughters wedding day, I woke up and couldn't walk. I had been so busy with the travel and plans, that I got too fatigued. I was on my feet from morning till night that day and woke up to so much pain. I finally was able to hang on the walls to get to the bathroom. This flare was the scariest thing!. I understand all your comments and hope you have many better days than bad ones.

"it's not me against my body, it's my body and me against the Fibro" I will forever live by this saying now. Thank you for this video, I haven't found many people publicly talk so in detail about anything Fibro related and it's helped me see some of the symptoms I have are shared throughout. So really, thank you!

I've never heard anyone explain fibro as well as you do ..thanks I feel your pain as a fibro sister.

I've been looking up videos like this lately. Mostly to feel not alone. I was struggling with pain for a long time without knowing what it was, and I was diagnosed with Fibro in the fall last year. Your description of the pain... is *exactly* my experience too. When I have a really, really good day it's like a 3. Your frustrations too about people thinking you're just being a whimp... same here omg. It's a vicious cycle for me too. Stress is a huge trigger for me, so I stress, flare up, then stress cause I flare up, and it just keeps going on. I am lucky enough to have a lot of support from my boyfriend of 5 years, who even goes with me to every doctor appointment. ♥

This felt like every word was coming out of my mouth. I’m in a flare now and I feel everything you are talking about. ❤️

Hi - this is exactly the video I needed to see today. I always feel like I can’t properly articulate how it feels to be in a flare, but you describe it perfectly. I was also diagnosed in 2016 but have really struggled to accept this and fighting ourselves is certainly not the answer. I’m so glad to have found this video today and it has given me a lot to think about. Thank you and I hope you are currently in a good space and that your symptoms are under control ❤️

Good wishes to you. I've had it for 6 years. It's the never ending and relentlessness of it that crushes me. It absolutely grinds you down. Love to all those fighting this dreadful battle.

Thank you so much for truly expressing this and explaining it! And you did NOT come across as complaining!

Thank you so much for this. As a fellow fibro sister, this so hits home. It's hard to explain to others what you are going through, even loved ones.

I have lupus, fibro, raynaud's, sjogren's, hypothyroidism and the list goes on. You did a really good job of describing what we go through and breaking down the day to day. It might not be extremely severe every day, but having pain every second of every minute of every day of every week of every YEAR, it rrreally gets to you. It's physically impossible to think correctly when you are in pain. Imagine that pain constantly!

I have been watching RU-vid for a few years and never thought to look up fibromyalgia. I was diagnosed with fibromyalgia (chronic fatigue) about 16 years ago. I am so glad to have found someone that speaks my language. I have been in a flare-up for the past week. Aching pain in shoulders, elbows, back, blurry vision and stomach pain like I've been coughing for hours. I feel comforted that someone else truly understands. Looking forward to supporting you in future

I really enjoyed this Andrea, and sent it to my daughter who also has fibromyalgia. I think you gave a very detailed and informative explanation of having a flareup. You have a good understanding of it, especially since you’ve only had your diagnosis such a short time. I’m happy to see more of your posts on fibromyalgia. Blessings🦋Victoria

I’m crying right now because I knew that other people dealt with this, but I never had someone explain what I’m going through exactly as they are going through it. Thank you SO much for this video!

Thank you so much sweetheart. I'm 52 and this really helped. You're better than any doctor. Extremely helpful. I can't thank you enough. I wish you love and peace. Bless you. Ellie. I'm rewatching this. I'm not surprised that you have a PHD. You're so eloquent and thorough.

Brilliant description!! Found this particularly helpful to think about breaking down the components of a flare. Loved the idea of working WITH your body to fight the real enemy (fibro). I've spent the past 30+ years being frustrated and angry AT my body. It's validating to know that the extended flare periods are not just me being lazy, giving up, not being motivated, etc. You nailed the explanation about how even moderate pain can be debilitating, draining and exhausting when it extends over a long stretch of time. This video has provided me with more emotional and mental relief than anything I've come across on a very long time. You are very relatable and articulate. Thank you for spending your time and energy to educate and encourage! ❣️

Thank you for sharing. I literally feel your pain, every day, as a sister Fibro girl.💜 Stay Strong!

Perfect description of the pain scale and how it is tolerable or intolerable depending on how many days you are going through it. Thank you for your articulation. 20+ years myself and still haven't perfected how I talk with family and friends about fibro.

Thank you so much for sharing this video. It’s good to know that you’re not the only one that experiences these symptoms. I’m 61 years old and have suffered from it since 2009. When I have flareups it feels like I have the flu but worse. Thank you so much for sharing this video. I’m so glad that I happened across your video.

You are a beautiful, powerful woman. Thank you for helping us better understand what our daughter is dealing with.

Thank you for sharing! I was recently diagnosed with fibromyalgia and stumbled across your video while doing a bit of research on it since it's such an alien word for me. It's amazing how much I can relate to what you've said. I went to see one doctor after another and another and then another again for bodily joint pains I've been having that started out as mild and then progressed to severe fatigue for no apparent reason since about a year and a half ago. All blood work came out either normal or negative for autoimmune disorders. Regular painkillers stopped working so I stopped taking them altogether even though the pain gets so unbearable it woke me up in the middle of the night and I'd cry my eyes out back to sleep, unable to do anything else. Fibro fog is something I started experiencing in the recent months. This bothers me a lot since I have a PhD in engineering and yet I couldn't do simple maths calculations in my head without taking out the calculator. At first I thought it was a side effect of an antidepressant I've been taking for almost 4 years now, although it never really affected me this badly before. My doctor changed the medications because of that but the fogginess is still very much there. Sorry for the long comment on here but I'm looking forward to watching your other videos here!

Thank you thank you thank you. I was crying and cheering throughout your video!

It is encouraging to hear about fibro from someone else and so validating. I was so shocked when I was diagnosed…but the diagnosis was never explained or understood. I just kept pushing through until I had my first heart attack and disregarded early symptoms because I was used to pushing through the pain due to my high stress levels and caregiver responsibilities. The brain fog and profound fatigue and sleep deprivation are really difficult. Your podcast is helpful! I am a former type A, energizer bunny myself!

I watched this to help me understand my friend's fibro, but your tips at the end were actually helpful for me with ME/CFS as well. Thank you!

Thank you. I feel more validated after listening to this. I was recently diagnosed, but have lived with the symptoms for a long time. It's good to have answers, and know that I'm not crazy or imagining these things!

Lady you are telling my story. All you said is my life for more than 25 years. Now 62 and days I want to Leave the world. Thanks for sharing.

I love your video. Your amazing at explaining this and truly have great analogies to further make it connect. Great job. I’m currently experiencing the very same symptoms and being tested.

Just thank you for sharing. With my flares, they can last as long as 6 or 7 months. The area where I live, has a facility for people that are dealing with addiction. It makes it hard to be comfortable speaking with ANYONE in the medical field because the first thing you are met with is 'I'm not giving you a prescription for anything!" This includes a condescending look. Most times I just don't say anything about what i am experiencing. My only outlet is finding others who understand. Only people that live with this understand. We are not looking for pity. Sometimes we just need to acknowledge what's happening to us in a safe space. When you said you didn't want to sound like you were complaining, it brought tears to my eyes. I spoke volumes. I get all these weird things happening at random times and it helps knowing I'm not in this by myself. I live your life and walk in your shoes. I get it, so again thank you for helping me with my voice.

Thank you for this video. I have been dealing with chronic pain for the past 10 years, but had several terrible encounters with the medical staff in my area, so for fear of not being believed, I didn't get it checked. Fast forward 5 years and I got way worse really rapidly and now, in 2023, I have made my health a priority. My doctor believes me. She's young and enthusiastic that we will find what's going on, but no matter what it is, I have flares and it gets BAD. So thank you! Because everything you just said, EVERYTHING, is how I feel right now. Thank you so much and good luck to you.

I feel your pain. You have it down to exactly what I feel constantly everyday for 10+ yrs. Thank you for making me feel that I'm not alone. I can't work at all. And the guilt is horrible of not being productive.

Thank you . Most people can’t understand Fibromyalgia. You gave a good explanation.

This is hands down the best video I’ve come across in regards to Fibro flares, so well articulated and described! These are just the tip of the iceberg for the symptoms as you mentioned but you really did a stellar job at summarising the 3 main pillars and I definitely feel less alone after watching your video and knowing I’m not the only one who always flares up for at least a week - and when too many stars align I can flare for 2 months (going on 6 weeks now). The mental health side of things definitely gets challenging once I hit the 2 week mark 😓 then I go up and down and have to really make an effort to manage my mental state because as you said, when it goes on for too long there’s only so much positive thinking we can do until it wears us down a little… we are still human after all 😅 I always tell myself with absolute certainty “it will pass, just put up with it a bit longer and in a few days it will be better”. I’m also glad I’m not the only one who absolutely crashes after a phone conversation, even texting gives me severe fatigue 🤦🏼‍♀️ Thank you so much for this video and I’ll definitely check out your other Fibro videos as well 💕💕

Thank you for putting this into words...I have never been able to verbalize what it feels like. And even if I could I am constantly doubting whether or not it's real or if it's as big of a deal as I always make it out to be. When I got diagnosed almost 2 years ago and I explained it to my family, husband and friends people just kind of said, "Oof, that sucks. I hope you feel better soon." I've been waiting to feel "better"...ever single day since 2019. I have not. :/ Keep going warrior, you've got this! #buildaladder

Thanks for this very informative video! I’m going through several symptoms tonight and your video has made me realize that I’m not alone in this, others feel like I do, with all these strange pains, itching, rashes, eye pain; etc........ no one understands this weirdness unless they are living in it. I’m 63 wonder how younger women working, being mothers, wives, exist having a bad day, I can’t imagine how you do it. I had cataract surgery a few years ago and had a very painful time during the surgery and afterwards. I still have eye pain and many other problems, symptoms. Good luck and thanks for explaining Fibro.

Thank you. Just coming out of a 6 week flare. I know I’m not crazy but hearing it from someone else exactly what I am going through is actually very soothing

Thank you for sharing your experience with fibro. I’m in a flare right now. You describe it perfectly. So much of what you said resonated. ❤️👍🏻

Your comment “giving myself permission” is something I just started to allow myself after 17 years! Was a difficult attitude for me and allow myself to let go of household tasks. I am minimizing my belongings nis…slowly because I have 5 of my parents estates to clean, update, and sell. Also, changing my diet, chair yoga, and OMM therapy. “Shifting mindset” really helps! (I have other autoimmune diseases also along with PYSD. Sorting through it all with a flare up is challenging). Staying kind to myself is key now!

Thank you for sharing your story, can totally relate. I’ve had FMS for two decades and am thankful I’ve been able to diminish my symptoms through diet, lifestyle changes, and movement therapies. But I recall a time when I couldn’t go anywhere without a flare taking over. Fatigue was my worst symptom too. I had to ditch my type A, Aries perfectionism, was forced to. Going with the flow, pain or fatigue or not, became my motto. I think just the stress of wanting my body to be ‘normal’ was my worst enemy. Discovering and accepting that there IS no normal was huge for me. Now having a support team that’s on board with this, different story lol. So happy to hear you are treating your body with love and acceptance through this. So easy to detach from self. Blessings and take care!

Dear Andrea J. Severson, Thank you. It is rare to find a person who has fibromyalgia actually describing what it feels like. I feel all these things you describe here. I have fibromyalgia too. Best wishes from Bess in UK 😊

God bless you. I relate to everything you're saying. This is the first time in 36 years I found someone else going through what I experience. What a relief ❗ Thank you. I always thought that I was doing things wrong, blaming myself.

Thank you for sharing this video. I’m in a major flare up right now and the fatigue is to the EXTREME and pain is brutal. I hear ya with the fibro fog too. It’s so strange when it occurs. I hope to get better so I can be employed again. It’s a daily struggle.

Thank u for sharing🙏 I’m at the end of 2 week flare and I’m needing to not feel alone. I relate 1000%! U nailed it on the pain. It gets soooooooooo old- day in and day out🥵 My whole life revolves around my pain. Oh and what u said about the brain fog- I’m a type A perfectionist too and it drives me mad being so horribly off😡

It’s so hard waking up each day feeling like you didn’t sleep at all and this was every day. I’m just grateful I don’t have to go to work every day.

believe it or not my service dog helps a lot with my fibro flares and such glad you are coming out of it

LOVE this video - amazing.

I admire you for continuing to work. I had a good job but the flares were so bad, I ended up quitting and the job stress only magnified it. On top of all this, I have spinal conditions from neck to feet so it makes everything so much more “fun”. The only problem is I hate having to communicate my problems. With my husband, I’ve already told him that when I’m quiet, I’m silently suffering and trying to cope. When I’m in the bedroom with the door closed, my senses and body are overwhelming me and I just need to be alone. I’ve tried a lot. Heating pads/cooling pads(which can be a double edged sword because my skin might be sensitive), Tylenol (rarely works), stretching (which can burn so badly sometimes), Doterra Deep Blue Rub (again... smell overload), turmeric (may not work sometimes), massagers (can be painful and cause more pain after)... The list is never-ending.

Thank you for helping me understanding a little more of what is going on with my body.

I’m so happy you’re sharing this.

I am interested that you mentioned an increase in your depression during your Fibro flare. My depression is very severe right now along with my Fibro flare. Also I am struggling to get over the symptoms of COVID that I first got a month ago. Your video resonates with my current situation. Thank you for putting words to what I am feeling.

I've been avoiding looking too much into this because I was afraid of Dr. Googling myself into a diagnosis until my doctor and I talked about it (and we did) but lord, when you described the "itching so bad it's painful" I could've CRIED that shit is real and it makes me feel insane

Thank you for making this video, the more people I watch I realise how varying they can be. Nice to meet you. Trying to get a diagnosis at the moment. But i have been given medication, which is helping with the nerve and electricity.... I so get that, the consitency of it, I never know how to describe the pain. This was so helpful ❤❤❤

Hi Andrea I only just found you. Thank you so much for the validation and support❤love from England🇬🇧

Thank you for sharing 🙏 My job is to help people victim of a accidents or illness to find another job. Now I can undestand really clearly what is dealing with chronic pain every day.

Thank you for posting this it makes my life hard but knowing that someone else goes threw the same thing makes me feel less crazy I just got diagnosed at 16 around 3 months ago and this helps me so much ❤️❤️

Everything you said is so spot on. Going through a pretty bad flare the last couple of days. High humidity levels aren't helping.

Thanks for this video. It's nice to know that I'm not going crazy. I was just diagnosed last year so this is all new to me.

Oh my goodness! The sudden, severe itch that's so bad it hurts on the bottom of my feet! I'm so relieved to hear something else has that. I never thought of it as fibro related since I don't have that much tenderness to touch or skin pain, but now I'll be more mindful of my itching as a sign of a flare possibly coming on. The more things I can keep an eye on as a sign to really take care of myself, the better. Thanks!

Hi Andrea, a good description on the fibro as I myself have suffered for just over 4 years now. The hardest thing to do is try and explain how you feel to somebody that doesn’t understand or even grasp what you are feeling at that point. Even here in the UK some people still regard it as the being lazy disease or as an excuse not to do anything. Feeling like you are being judged out in public as I struggle to walk. I was so used to doing everything myself until fibro struck and now I feel like my independence has been taken away as things I used to do I have to get help with now and also had to quit work. This is why I turned to RU-vid and set up a channel to try and get my story out but you described it better. Well done 👌

Thank you so much for this video. I'm going to share with family and friends

The welly boot analogy is spot on!

Thank you for this. Going through a flare right now, and I feel like I'm falling face down into depression again. You explained the regular symptoms vs flare ups very well. I think I can count the completely pain free days in my life on both hands, and I'm mostly used to the constant pain. What really gets me is the fatigue and the brain fog. Got an Adhd diagnosis recently, and anecdotally (not sure if there are studies), they are often comorbid. I found that adhd meds helped with the overall fibro somewhat, especially in the beginning. Overall I feel the hormonal dysregulation of dopamine, serontonine, melatonin and norepinephrine might be a good place to start when looking for relief.

Newly Diagnosed here. Happy to have found you!

currently in a wicked bad flare and i immediately started crying when u said depression bc i am lower than low w the depression. the pain has been awful,everywhere as well as the GI issues im 42 but feel like im 92. i dont feel so alone having a comunity here so thank u for sharing ok now im balling bc what u said around 10:25 people do not understand. also im forever being told i take forever for anything and that im so slow. and the fog is soo frustrating. i know the word but cannot think of it. it wont come out. i am saying yes after all your descriptions! it takes me hours to wake and im costantly exhausted. sleep is like NONE and i have insomnia so bad then want to sleep all day. i have 3 young children (single mom) and they dont understand of course

It is so validating to hear someone talk about this. For years I just thought it was normal to be in so much pain everyday. I didn't get diagnosed until I was 29 and it helped me go in the right direction because then I could build my "I swear I'm a functioning human" support arsenal lol.

My daughter was diagnosed 9 years ago, when she turned 30. Her symptoms however have been increasing both in number and severity over the past 9 years. New ones creep in, but the old ones seem to hang around and are getting worse. She has been in a major flare up for over 7 months now. It started in June, with a UTI, which actually was a UTI ( she can get all the symptoms of a UTI, including fever and blood in her urine, when apparently it's not an infection, but just her fibro) She was treated for it with antibiotics, and the infection cleared, but the symptoms didn't go away, they still haven't gone away. They fade a bit, but then return again. Obviously she was in pain, and as usual she put her daily increasing fatigue down to that, but within a month she was so bad she couldn't even get out of bed to the bathroom without collapsing. She had to be helped to be dressed, washed, do her hair etc, and yes, every bone, every joint, every muscle in her body hurt. It even hurt if you touched her. She has medication for this, but it knocks out her coordination, and her ability to concentrate completely, so she only uses it when absolutely necessary. It was necessary this time, especially since the cluster headaches had kicked in with a vengeance. She was pretty much bedridden until mid August, and then it looked like the flare might be starting to subside, although mouth and nose ulcers had kicked in, and the headaches were still lurking, she could actually move around a bit again. She had numbness alternating with the weird pins and needles, stabbing pains she gets in her hands and feet, but although still exhausted, she cut down a bit on the meds, and tried getting back to normal. Then she got pain in her chest, left side, front and back, with problems breathing. Because of the lockdown, she couldn't get to actually see a doctor, and she tested negative for Covid, so it was presumed she had costochondritis, though there was no obvious reason for this, but again probably just fibro related. She was told to take the painkillers again, and basically just get on with it, just like with the UTIs. For a month she couldn't breathe when she lay down to sleep, she needed to sleep sitting up, and leaning forward, to ease the pain and the pressure on her chest. It wasn't until the end of September that it started to settle a little, but by then she was back to being totally fatigued as well. The ulcers were still there, coming and going in batches, but always present, the UTIs, which are not UTIs, were still hanging around, sometimes better, sometimes worse, and the chest pains would kick in every time she tried to do anything, even just making a cup of tea......but it's just a fibroflare...... Fevers came and went, her hands blistered up for no apparent reason, She had to start using eyedrops because her eyes were so dry from the fibro, and a bout of sudden, random attacks of extreme vertigo now made it impossible for her to leave the house anyway, without having someone with her, not that she could walk very far without having to stop and rest.....not so easy in the Winter. Christmas was a struggle, she had a short bout of Trigeminal Neuralgia over the holiday period. Fortunately she doesn't get these so often any more, once the Cluster Headaches started, they seemed to phase out a bit, but it still sometimes kicks in during a bad bout. She gets bouts of TMJ as well, but that, like the IBS and the Brain fog and the random fainting fits, is I'm afraid just par for the course. Things, touch wood, have settled a little now we are into the New Year. She's still extremely fatigued, and her joints are visibly very painful and stiff, but she's back to trying to do stuff indoors, to get back to some form of normality. She's still getting varying degrees of fibro UTI, chest pain, ulcers, so it's still very up and down on a daily basis, but she'll settle for all over pain, frequent naps and lots of peace and quiet as a baseline. The one thing she'll never settle for is the Brain fog. I think she'd do anything to be rid of that. But that's fibro. I empathise with anyone and everyone who has it. It is a dreadful condition.

Definitely related to a lot of this even though I’m not entirely sure what’s up with my body 🧐 great video! Xx

Thank you!! Thank you so much for saying exactly what most of us Fibro Warriors experience.

Thank you for sharing your story with us. This validates what I go through daily. I have realized that my childhood was not spent lazy when it was really spent in pain physically and mentally. When I was growing up fibro was not known as a disease but laziness and stubbornness. My Mom was a wonderful nurse but she didn't know that Fibromyalgia was.real. I've had this all of my life. I have a wonderful husband that tries to understand and knows when I don't feel.good. I lost my last job because of this. I just take one day at a time.

My fibromyalgia pain is a entire body Indian burn feeling :(. It is nice hearing I’m not alone

Thank you for making this video. I've been kinda lost since my initial diagnosis. I'm having a pretty bad flare right now. Entire body feels like there are fire ants all over me. Lights and noise make me nauseous and my muscle feel like I just finished running a marathon.

Thank you sweetie I appreciate your candidness about your flare. I have RA and fibromyalgia and I tend to forget about the fibro flare symptoms because of the pain and suffering I have from the RA because my symptoms become so much more intense and difficult to deal with. I live with chronic pain anyway but all of a sudden my fatigue and brain fog get worse and I think is this the cancer coming back. I had Lymphoma and breast cancer on top of everything else. I especially liked the way you described the chronic pain part. I tell people I have a high pain tolerance, but when it lasts for years around the clock and never goes away it can cause a feeling of depression and despair. Like you said it's not about your family, friends, or job it's the fact you never get better and that is what makes it so hard to deal with.

Hi it's really good to discuss Flares. I often think they get forgotten. I'm sorry to hear that you suffer too 😔

How happy that after 2011 I find someone that entirely feels how I do!! 👼

Thank you so much I can really understand how you're feeling because I go through mega mega flare-ups as well as fibromyalgia have other issues and the fact that I'm 75 years old is really really debilitating. Take care

Great video! I remember for me fatigue was worst in the beginning. Because I didn't know how to work around it. The pain had been there for many moons, so it was kinda easier for me to understand and accept because u know I wanted to live, not lay down and give up. I came to a point where I had to accept how life is, and start to work around it, and actually apply some self care instead of constantly pushing myself across the line. Things didn't get better physically, but it made me more happy. It helps to have great people around you also. Workout is really gold for me. I realize it's not for everyone. But I encourage people to try to see how far it can take them. I know how bad it can be - personally it hit me hard (the fm) and most days I'm unable to get around without a mobility aid. I can push, but then comes the penalty hehe. Walk without crutches one trip to the grocery store = extra pain and fatigue for you! :) congratulations! :). But if I miss out on the workout (which is coached by physical therapist) - that's a catastrophe. Also means bonus-pain and bonus-fatigue. Next level. So I have three recommendations for self care that works for me, and that I am totally dependant on. 1. See how far workout can take you. If you flare up, u know it was time to ease up. Sometimes it's worth it to experiment a little even tho it feels all wrong. I don't push it on anyone - I just say it works for me. No shame here to be dealt to anyone who don't feel the same :). 2. Allow yourself to stay in bed if it's needed. It's not being lazy or anything like that. It's what you need to do to function - so if people tell u to get out of bed, they simply don't know what they're talking about, and you are free to learn how to have fun ignoring people like that :). I have experience. :). 3. This has been the game changer for me. Allow yourself to use a mobility aid - or many! My feet simply won't carry me on most days. And walking without crutches is an accident waiting to happen. I use crutches with suspension so it doesn't hurt my upper body long term. Happy with that. However, when on longer missions - like trip to the mall or similar (btw I used to hate it because it always wore me out) - what changed my life was when I decided to ask an occupational therapist to help get me a manual wheelchair. It was extremely hard. A lot of shame just in asking. Btw, that shame is a lie :). Do NOT listen to it. :). It changed my life completely. I got freedom back that I lost years before. In the beginning it was real awkward. But today, the manual wheelchair is my number one tool to still be active and prevent too many bad flares. This stuff is what I currently do to handle the fm. It's different for everyone. But I feel that especially the part that is about mobility aids is something that's not talked too loud about when it comes to FM. And I kinda wanna change that, because I know how life changing it can be. I realize aids can be very expensive. But it's so worth it. But don't go get a wheelchair on your own - coz there are things you would never consider to be an issue that will render the whole purchase a catastrophe hehe. So bring an OT or otherwise specialist on board to figure out what is best bet for you. After all, a wheelchair can cost same as a half decent used car. But yeah... it changed my life. Sorry, this got really long. Had to type it fast while mr. brainfog wasn't bothering me too much.

Thank you for this video. I've been struggling with Fibro since 2017... During the last 3 or 4 days, my routine is a total mess....I've completely forgotten that this could be a flare. I was pushing myself so hard, blaming me for being disorganized and lazy... Thank you for reminding me to be kind to myself.❤

The more I hear other people's stories the more I feel validated that I'm going through an actual thing. I've been in almost constant pain in my joints for almost 10 years and I'm only 22. So many people think I can't hurt because I'm so young, but there's never a moment of peace. Lately, I've been so frustrated and finally gone to see a doctor. Everything hurts, nerves, muscles, joints. I thought it was just stress but it constantly happens. My brain fog has been so bad, I can't focus on anything for very long and even typing gets the better of me sometimes. I'm so frustrated constantly because of the pain and not knowing why, then my anxiety and depression crop up. I can't tell you how validating hearing your experience has been for me. I find myself completely relating to almost all of what your symptoms are. So far I haven't been diagnosed, only told that I don't have rheumatoid arthritis, wish me luck in getting another appointment scheduled soon so I can look into this medically. Thank you so much for sharing your story.

I am exhausted every day. Even when I get a good night's sleep.

great video: 1) mental health 2) morning description 3) communication 4) not hiding it

I am going through the doctor's not believing me. It is so frustrating. You are explaining exactly what the pain feels like. Thank you

I am back again with another fibro flare. It started last week and hasn’t really let up. My flares can last over a month. My legs get the worse of it. I had actually forgotten I had left a comment on here 7 months ago. I managed a walk today but even that was a struggle for me. And my legs have been so stiff today too. And you are right it’s not a case of taking a tablet and everything is fine. I have been dealing with this for over 14 years. And not enough sleep makes my fibromyalgia worse. Worse case scenario the pain brings on a panic attack for me. I have been back and forth to different doctors about this so many times with no luck.

My PEMF “Bemer” has helped so much!!!!!!! That and Turmeric! Boswellia!!! Never stop searching for improvements, better eating and seeking out functional medicine doctors. Praying for you all!

Fantastic, & excellent presentation! I have ME&Fibro for 5 yrs now. It began with a few huge stressors (divorce, & subsequently needy children, back surgery with much titanium, 2 deaths in the family and moving abroad. Soon, I was VERY ill with EBV which went on for weeks but never got much better. It just modified itself & I’ve been living with ME&Fibro, in bed or the couch 3 yrs. People say I’ll get a remission, maybe a partial remission. I have a horrible feeling it’s not going to happen. I am amazed you’re able to work, that’s great.

Hi just to say brilliant blog I have had fibro for a very long time I am so glad somebody has got the same bad pain as me in my ribs it’s so so painful in my right side it’s always when I in a flair along with all the other pains going on it’s so so hard on these days it gets u so down wish I had more good days I have tried lots of things to help me as u all have take care and thank u so so much for this 🤩😄

Thank you for helping me realize I'm not crazy. I too suffer fibromyalgia. If ppl don't suffer they don't get it.

The worst time of my Fibro life was when my husband passed away. I remember coming home and going right to bed. I was so mentally and physically stressed and distraught all I wanted was to block it out. When I woke up, I was in so much pain that if I moved I wanted to scream, and I did. I went to the hospital, emergency, and I tried to explain that I had fibromyalgia and I was having a really bad flare. I couldn't stand anyone touching me, but I let them do my blood pressure and listen to my heart. The doctor kept asking me what can I do for you, and I said help me with the pain. They were not going to give me anything, and I tried to explain my bones feel broken. Finally a nurse must have understood I wasn't just their for pain meds, and they gave me a shot of morphine. After about an hour, my pain level dropped to a more tolerable level 7-8, and my daughter took me home. I do not know what pain level I was experiencing when I got to the hospital, all I can say is I mercifully never got that feeling again.

On lovely, what a perfect description of life with Fibromyalgia! I have it as a secondary condition to degenerative disc disease and mixed connective tissue disease/RA/OA. I've had it 34 years and have actually been ready to jump out of my bedroom window! The anxiety and depression is awful and the guilt that you feel about having something wrong with you all the time, and moaning! As I've been told many times by family rtf and docs 'it's not your fault...you didn't ask for this!' Thank you and my thoughts are with you! Xxx

You summed it Al” up so well.

Thank you and commenters. I hope we all get something that can cure this terrible condition we suffer from. Hugs to you all. ❤ hang in there!

Hi :) You mentioned flare lengths - so I'll add mine because I'm also curious about that! :) I'm so sorry you're having to deal with this :( XOXO ugh the consistency of it - yes... yes you hit the nail on the head. It's just unrelenting!!!! Every morning I wake up and for a split second I'm like - oh.. is it better? The nope.. nope it's not. And then you have to resign yourself to the fact that this is how it is now lol... ugh My flares (mostly burning eyes, major fatigue, alllll over "blooming" aches in any/all muscle, spikey pain in hands, and a sense of wanting to cry all the time - but NOT depression. That's the hardest symptom for me to describe to people lol) used to be one or two days off and one for years. Maybe like ... 3 to 6 times a year? I didn't know what I had then.. just chalked it up to being a mom of three kids lol. Then I'd get some flares sprinkled in that were 5 to 6 days (then I started to wonder - uh oh lol) . Now, it's been since January 2019... every... single ... day .... (By May that year I knew what it was and eventually, after loads of tests to rule out other issues, the dr's put me on a drug that helped for several months but then it messed with my heart in a scary way so I recently had to stop it and as soon as it wore off - BOOM - all symptoms back, one after the other. It's maddening! I'm looking into other options now (Just bought my first CBD product tonight! I'm crossing my fingers, toes, eyes LMAO). I have an amazing husband and I love life, so while I might complain about this stuff (a lot lol) - I still laugh and love and will always look on the bright side (I hope?!)

Thank you so much , feel like i have a sister warrior you described eveything i go through. And never beat yourself up its good for people to see the reality Blessings MJ.

Thank you so much for this video! I haven't been diagnosed with fibromyalgia but I am currently in the state of running from doctor to doctor. Recently, any kinds of rheumatologic illnesses have been ruled out and the rheumatologist who did the test simply told me to be more active and that my "mind is exhausted" and that is why I am more aware of pain. To me, these statements from that doctor were kind of devastating because I feel like no one understands me and takes me seriously and I am starting to think that I am just imagining the symptoms. This video was such a relief for me because I felt like you spoke directly out of my heart and what I am going through. Thank you so much! This gave me hope that maybe someone will take me seriously and willing to help me, whether I will be diagnosed with fibro or not. Sorry for rambling but I just had to let it out. :)