Wow, let me just say that I was blown away by how many responses I received to this year’s question for Fed Up With Fatigue’s annual International Fibromyalgia Awareness Day post.
You guys did not hold back!
As I was reading all of your answers, I found myself constantly nodding my head, thinking “Yep, that’s EXACTLY how it feels! Yep, I’ve felt just like that! Yep, I’ve had that symptom, and that one too…”
There were several times when tears welled up in my eyes, but there were also a couple of giggles – especially when I read that Jennifer J. replied “You do!” to her doctor when he asked her about what triggers her anxiety.
Before you start reading, I do want to put out a warning: Some of these answers are tough to read, meaning they’re emotionally charged, raw and unfiltered, as they say, so if you’re already depressed or having a horrible day, I would pass this post right on by.
With that being said, I’m hoping the words of your fellow fibro warriors will bring you some comfort … to help you to realize you are not alone in your struggle. There are millions of us out in the world who are struggling right along with you, including myself.
One final thing: You’ll notice that I created graphics from some of the responses. You are welcome to share these images on social media. Just right click on the image, save it to your device and then upload it to your social media.
So without further ado, let the reading begin…
Alisha Nurse, founder of TheInvisibleF.com, United Kingdom
“Fibromyalgia feels like I’m running on 20 percent battery power – always exhausted, always on the verge of shutting down while various parts of me malfunction. The range of symptoms is so wide and varied, making it frustrating to treat and manage on a daily basis. One day I could be bed-ridden with pain, [and] the next I could be walking again but blinded by a migraine, overcome by debilitating fatigue or tormented by digestive issues. It’s almost like having a severe flu except I never recover from it.”
Bonnie D., Maine
“My skin feels like I have been buried in an ant hill, and every creepy crawly critter in the universe is using my body as a superhighway.”
Alice C., Illinois
“Many of my friends think I’m nuts when I say I have fibromyalgia. If I said I had arthritis they would understand. People who don’t have it will never understand. For one thing, I look younger than my age (83), and I never whine about my aches and pains, so no one has a clue how I feel. The chronic fatigue is difficult for me as there is not much that can be done. I do what I have to do, and move on and don’t complain, and people don’t understand that some things are difficult.”
Debbie J., West Virginia
“Fibro feels like there is something poisonous circulating in my body, and every part of me is affected by it. On a bad fibro day, I feel exactly like how I feel two hours before I’m sure I have the flu … but I never get the flu. I just keep feeling like I’m getting it.
“On a good fibro day, I can’t act like someone having a good day who does all the things they are behind on. I have to remember that if I do too much, I’ll pay for it with days of being miserable.”
Denise D., California
“Fibromyalgia, for me, feels very much like a neurological disease. What began as a cold virus for me in late 1993 quickly morphed into a plethora of neurological-like symptoms such as an extreme sense of weakness in my legs, severe neck and spinal cord pain, muscle twitching all over my body, severe peripheral neuropathy (hot pins and needles) in my hands and feet, and finally, generalized, diffuse, severe muscle pain throughout my body.
“In addition, I lost all tolerance for exercise and suffered from bouts of extreme fatigue. Fibromyalgia feels like you have the worst flu, on top of feeling like you’ve just done the hardest workout of your life. Every muscle in my body would scream in pain. I’d be exhausted but be wracked with insomnia as well. In short, it’s a nightmare.”
Debra M., Canada
“Fibromyalgia feels like the destruction of my body and mind. It is 24/7 pain in all my joints, searing pain in my feet, throbbing headaches, aching muscles, GI issues, insomnia as well as many other symptoms. The worst part is my loss of my old life! My life now consists of laying in bed. Alone.”
Denise D., Iowa
“If you have ever totaled out a car you may know some of the feelings of fibro.”
Diane B, California
“It feels like my whole body is screaming.”
Diane H., United Kingdom
“I don’t think I suffer as much as others with fibromyalgia but, in a way, I have a lot of struggles that come with having fatigue-based fibromyalgia and not pain-based fibromyalgia. I had to give up my career and a full time job because my fatigue was so intense [that] it made me poorly with constant infections and colds and also constant depression and anxiety. My pain was constantly there but only occasionally intense.
“After I had some balance in life, I had a part-time job, my husband dealt with shopping and cooking, and I rested a lot it was ok until March 2020 when I may have gotten COVID. (I don’t know for sure as there was no testing [back then].) Whether it was COVID or not doesn’t seem to matter with me. I don’t recover fully from any infection or virus I get.
“I have also had gynecological difficulties, which were eventually treated with the coil. It worked at first but I’ve been having pain and fatigue-related issues after a few months.
“To be honest, I’m not sure what to go to the doctor for and what may just be a fibromyalgia symptom. It’s a confusing and tiring and depressing illness that I really wish would go away!”
Emilia A., Canada
“Fibromyalgia is hell to live with!”
Fani A., New Jersey
“I feel alone. I feel hopeless and dead. I feel tired from pretending I do not suffer.”
Gina C., Ohio
“I deal with allodynia on a nearly daily basis. It feels like fire. It feels like an intense sunburn across my back, arms and legs. Wearing tight-fitting clothing is a no-no. It’s hard to explain to colleagues why a loose fitting t-shirt in January is necessary because of my ‘sunburn.'”
Ina F., location unknown
“[Fibromyalgia is] living in whole body and mind hell 24/7/365 [with] severe pain and profound fatigue that has totally eroded [one’s] quality of life.”
Isobel G., Canada
“It’s the changing symptoms that get to you. One day, it’s headache. The next day, it’s dizziness or muscle pain or exhaustion. Never a dull moment!”
Jaci J., North Carolina
“[I’ve been] living with fibro for over 30 years! I have plenty to say, and then add arthritis and lymphedema on top of it all! Each day is hard to plan as I never know when to do more and when to rest! It is always a guessing game!”
Janice E., Canada
“It feels like a nightmare. Twenty-five years of spiraling down a dark hole of overwhelming pain, exhaustion and brain fog has led to an extremely emotional, anxiety and adrenal-fueled reality. Dyscopia (inability to cope) reigned.
“Now this year vomiting headaches, my head in a vice, sinusitis from hell resulting in dizziness and the inability to equalize ear pressure. My neck, shoulders and upper back have flared up. Now I can’t even lift my coffee cup without tendonitis screaming throughout my arms, ripping my chest muscles near the shoulder and now at the base of my neck.
“And the pain in my groin when I walk … OMG!!! It’s a back muscle! Who knew? And my immune system is ANGRY. Think hot, burning, stinging, incredibly itchy. Anytime, anywhere, any size, from head to toe. Yes, everywhere!!! Waves and waves and waves. Scratching until raw. I know it won’t be like this forever, and I have another dream … one in which I will have a happy, joy-filled life. 💜 I have a dream. 💜”
Jennifer J., North Carolina
“My whole life has been in so much pain … symptoms that came and went, which crippled me at times, but life went on until I no longer could pretend. When I was diagnosed with chronic fatigue syndrome and fibromyalgia at the Cleveland Clinic, other docs didn’t believe it, and I was dismissed as a nut job, which was more painful and scary as I was passing out, having heart attacks and cancer, all of which was delayed in treatment because fibromyalgia was on my charts.
“I am 76 and still suffering from other autoimmune diseases. I have a brain tumor now and liver and kidney disease and a rare skin disease. When they ask about my anxiety disorder and what makes me anxious I tell them ‘you do.’
“Now they say I have fallen through the cracks and have a poor quality of life. I refuse to listen to that because no matter how much I suffer I also raised two wonderful children and am an accomplished artist in spite of my health.”
Joy C., Western Australia
“I feel sick and tired beyond explanation!”
Judy B., Colorado
“Mine feels as if the outer lining of my lungs is on fire, and the pain radiates from there to every fiber of my being. I am okay in the morning, but by mid-afternoon my entire body feels like it was hit by a train, and I just want to curl up and sleep forever.”
Julie K., California
“What does fibromyalgia feel like? Ok, I am going to be blunt so the doctors can understand this. It feels like my whole body has been tortured, torn apart and glued on backward. Somedays I feel like my brain is wrapped in Saran Wrap. I cannot think straight. [I’m] tired, irritable. I do not want to eat or do my art. Just leave me the heck alone.
“When I hurt, I just curl up on the bed and cry because I want the pain to stop so I can have control over my body. When it’s cold, it goes right through to every bone. It makes you feel like your body is a piece of glass, and any movement will break you into a million pieces that cannot be put back together again. That is fibro pain for me.”
Karen C., Colorado
“It feels like I am being drawn and quartered every day/all day/all the time. The only thing that doesn’t hurt are my eyelashes. My muscles scream from the pain and burning, 24 hours a day. Pain meds have now become ineffective so I have no respite from it. Day after day I grind on, keeping a happy face and good attitude for family and friends while I am sobbing inside, None of the ‘treatments’ help. All of my doctors have given up. I don’t even discuss it with them anymore. I am stranded on the island of pain.”
Kathie W., location unknown
“When I am in a flare, I have to wear the loosest clothes I have, and that’s usually pajamas. Everything hurts my skin, and my husband can’t even give me hugs. I’ve actually developed bruises right above my knees from having my laptop on my lap.
“Sometimes the pain is random all over my body, sometimes one whole side of the body and sometimes just random spots. I can’t pick up a coffee cup with one hand because it hurts too much. I will take a pain pill, and sometimes it works. I can usually perform the basic tasks of going to the bathroom and getting something (already prepared) to eat.
“Something happens to my internal thermostat, and I begin to sweat profusely, and it smells. Taking a shower does not help as the energy required to shower causes even more sweating.
“The pain I can usually push through for the basic tasks but the fatigue is another story. I become weak and shaky and sometimes develop tremors. I have fallen or almost fallen on numerous occasions. These are the days when my friend becomes my caregiver and even has to assist me to the bathroom.
“On a good day, however, I can usually accomplish 2-4 hours worth of work around the house including cleaning, cooking, laundry and taking care of my disabled husband. Some days I am the caretaker. Some days I need a caretaker. On any given day, I am dependent on others for things like grocery shopping, going to the bank and pharmacy, and running other errands. Trying to do these things leaves me incapacitated for at least two days.”
Kathy A., Michigan
“Fibromyalgia feels like trying to walk with bricks on your feet. Your thoughts are sifting through strainers, and only a few words will finally make it out. The thought process is so slow. You wake up feeling like you moved bricks all night, and your arms ache like you built a whole house. I call the unending overall pain the Fibrobeast.”
Leasa M., Mississippi
“It feels like you’re exhausted from running hard and long, and stopping doesn’t cause the fatigue and pain to lessen. It’s emotionally lonely because well-meaning friends/family think it’s a choice to power through and cheer up, so you just don’t share how much that you wish it was that easy. Some loved ones see the traces of your pain and say prayers and give soft pats or hugs. You appreciate their concern more than you can ever know.”
Lorre A., Virginia
“Fibromyalgia feels like you’ve been hit by a Mack truck. It feels like waking up too tired and with too much pain to get out of bed. Going to bed/sleep is too hard, and waking up is even harder. It feels like having the flu that won’t go away. It feels like poison in my veins. If I was a car, it feels like I have an alternator that doesn’t recharge my battery, or a cell phone that can’t keep a charge.
“It feels like exercise should help but instead exercise hurts. It feels like electricity is running through my body, and all my nerves are on edge. It feels like touch, smell, sound, light and people around me are too much for my nerves to handle. And pain, too. It feels like the world around me is too much, and isolation is tolerable. It feels misunderstood and hopeless.”
Maggie D., Washington
“To me, it feels like a cage I cannot escape. I feel fatigued all day. My joints ache. My muscles are stiff and often feel solid. I have multiple weird things nagging me randomly. These things include ear pain, tooth pain, stabbing headaches, sharp nerve shocks in random places and sudden sore throat. I have ringing in my ears, abdominal pain, chest/rib pain and weird rashes and itchiness. All of this leads me to crappy sleep and and an overall malaise and irritation. Anxiety is ever present when these symptoms are flaring, but mostly I’m just exhausted with being exhausted.”
Margaret A., Minnesota
“Most days, I feel tired with headaches [and] dizziness with aching pains down the spine. Some days, especially at this time of year, hands, fingers and arms go numb. The constant weather changes causes havoc on my body plus brain, the mind and soul. Muscles are in extreme flare waiting for the storms to calm down. Hard to focus when the brain deals with constant pain especially the headaches. It feels like fireworks exploded on a continuous basis. The muscles feel like tensions tightened to the maxed with more knots being wound more tighter.”
Marie T., Ireland
“I feel half alive compared to my previous life, and every day is a battle. But the worst part of this for me is other people not even trying to understand or listen to what’s wrong. It’s mind boggling how they can’t process that no one would give up/lose their career, social life or regular exercise without very valid and heartbreaking reasons.”
Maureen M., Florida
“My fibromyalgia feels like I’m perpetually tired and achy. Sometimes muscles are sore to touch, skin burns, extremities are heavy, joints are stiff and rarely do I have a day when I feel ‘all good.’ I also have systemic lupus so my ‘good’ days are rare. My motto is ‘things could be worse.’”
Patti C., Virginia
“My body aches when touched. My muscles go into spasm at any given moment. It hurts my arms to lift anything. I am super sensitive to the cold. I am always tired even after waking up. I must drag myself out of bed each morning.”
Rochelle R., Canada
“It’s like having the flu every day, but to varying degrees. On a ‘good’ day, I can function and be productive for four or five hours. On a ‘bad’ day, it takes everything in me to manage to feed myself and my cat, even if it’s just a frozen dinner for me.
“What can be as disabling for me as the fatigue is the vertigo. I describe it if it’s mild ‘like being on a gently rocking rowboat.’ At its worst, it feels like ‘being on a plane going through turbulence.’
“And of course, there’s the constant pain, but for me, it’s usually just a low-grade ache, unless I’ve done something that used my back, like laundry or washing dishes. Then it can go up to a 7 or 8 out of 10.”
Ruth R., United Kingdom
“It’s being beyond exhausted all the time but unable to sleep, then like trying to run a marathon in waist deep water and then feeling like someone has somehow reached in your brain and hidden away words that you need to speak sense.”
Sara H., California
“It feels like your body is full of broken glass and like every single one of your muscles is pulled painfully. It feels like your muscles are on fire with burning pain. It feels like bugs crawling all over your skin all the time. It feels like waking up in the middle of the night at like 3 a.m. because your pain is so bad that you just cry as you try to fall back asleep. We are all exhausted because it makes it so hard to fall asleep and stay asleep.
“It makes you feel so dizzy, it’s hard to even balance and walk. It gives you migraines so painful you can’t focus on anything but the pain. It makes you so forgetful that you will forget the conversation in the middle of talking.
“It makes everything so painful that I think about how much relief I would get just to be not alive anymore. It limited my abilities so I can’t even walk, stand or sit up straight for more than a few minutes at a time. It took me away from doing things I love like hiking and camping.
“It made me incapable of working anymore, and I’m only 30, but the Social Security Administration still doesn’t want to help because I’m ‘too young’ to be disabled.
“Doctors don’t even want to do testing anymore. Any new problem you have is fibromyalgia’s fault, as they say. They act like it’s all in your head especially with PTSD and depression issues. Even doing all the therapy, they still refuse to do other testing even though I’m high risk for things like cancer. It feels like the doctors are constantly invalidating you, and they love to tell you there are no fibromyalgia specialists so you have to deal with your general practitioner who knows nothing about anything except basics. They definitely don’t understand chronic illness. Basically having fibromyalgia is a f*cking living hell.”
Shelley R., New York
“Fibromyalgia feels like having weights attached to all of the muscles in my neck and shoulder blades and back. Also, my arms ache just to lift them up. It’s exhausting to just be.”
Sloane A., California
“It feels like an evil entity, poised to attack, IF… I fail to exercise, forgo sugar and nightshade veggies, and do not manage to push away the omnipresent fatigue monster!”
Sue B., Michigan
“I feel like a porcupine is trying to push out of my skin. Prickly goose bumps everywhere! My skin feels like a lead dive suit.”
Susie T., Washington
“Fibromyalgia feels like many things as it has many symptoms along the way. The most difficult are my ‘flareups.’ I wake up early morning around 5:30 a.m. and am aching everywhere. [It feels like] the worst flu-like symptoms I’ve ever had. I live alone, so there’s no one to get some 7UP for me or help me feel better, so I lay there moaning and groaning, unable to get to kitchen or even get to a pain pill, until maybe 2:30 p.m. and continue to be miserable until maybe 5, 6 or 7 p.m. when I can go in living room to lay on the couch.”
Teresa L., North Carolina
“Fibromyalgia pain is a constant, nagging ache that moves around to different parts of my body. The pain makes concentrating difficult. It’s a struggle to pay bills, read a book or even focus on a television show. Sleep is restless at best, and deep sleep is virtually nonexistent. Fibromyalgia is feeling misunderstood and often judged.”
Tim C., location unknown
“Fibromyalgia feels like the burning and fatigue a normal person would get if they held their arms out with heavy books in their hands but it stays all the time, everywhere! Add in that it feels like someone took a crowbar to parts of the body and feels bruised. [It’s] very miserable, and I have yet to find anything giving much relief.”
Vicki C., location unknown
“To me, fibromyalgia feels like trying to function underwater, feet sinking in the sand at every step, with a 40-pound chimp riding on my shoulders. Even with pain management, I feel weighted down and restricted.”
Zelda N., location unknown
“Fibromyalgia is just plain miserable. There are times when my legs feel like they are being scraped with a straight edge razor blade, my arms and shoulders feel like they are being weighted down with cinderblocks and my back itches to the point I want to rip the skin off. Then there are times when my skin all over just plain hurts, and my teeth will hurt but not like I have a cavity.
“The feeling of inertia has me in bed a lot. Just making breakfast for my husband will have me needing to go back to bed. Everything exhausts me. I wake up feeling so tired I don’t have the energy to make a phone call, and there are days I live in my PJs.
“Doing one load of laundry may take three days. I have fibromyalgia in the soles of my feet so walking is incredibly painful. Then there are the headaches and migraines, which are set off by chemical odors, perfumes, even flowers.
“What helps when I have a flare are music videos on YouTube. I watch them until I fall asleep, which I’m doing now.”
Now it’s your turn: How does fibromyalgia feel to you? Share your responses in the comments below!
I’m Donna, a longtime newspaper reporter, health writer and chronic illness thriver! Fed Up with Fatigue provides weekly news, research, treatments and more to help you live better with fibromyalgia and/or Lyme.
Thank you so much for everyone who has taken the time to contribute and remind us we are not alone in our struggles.
For me, besides the daily, heavy, dull aching pain in my face, neck, shoulders, arms, back, hips, legs, & burning/prickling hands and feet – all the overly tight muscles, severe spasms any time I “overdo it”, fatigue that pulls me down all day and insomnia that would have me up all night – brain on high alert regardless of how exhausted the rest of me is if it weren’t for all the meds & supplements, is the GUILT.
Guilt over having to stop working outside the home at age 25, during my 2nd pregnancy, because my neck & upper back pain was keeping me up all night and making my long commute and office job impossible to continue when combined with all day “morning sickness” and the stressors and responsibilities of running a household, being a wife and mother of a 6-yr-old son.
Guilt over having to sell our brand new house because I carried all our benefits and leaving my job meant loss of income and insurance with a baby due in a few months. It meant hopping around from home to home over these last 25 yrs., sometimes renting, sometimes owning, but never finding the right place again. Guilt over all the things I wanted to do with my kids but couldn’t because of pain and exhaustion. Guilt over not being the kind of wife I always swore to be because of how much that unrelenting pain changed me.
Guilt over all the money spent on pain relief – doctors, procedures, meds, supplements, special furniture, necessary cushions, heating pads, ice packs, stretch straps, massagers, creams, patches, you name it. All the things that have thankfully helped some and so many more that never did…
Guilt when seeing my husband’s face every weekend morning – even now- when he realizes yet again that we can’t talk about anything important for a couple hours because I can’t handle a bunch of questions or serious conversation so soon after waking. I need so much time to deal with the morning pain and brain fog and slowly adjust to the day.
Guilt over the increasing irritability because I just turned 50 and I can’t believe I have now spent half my life in pain every day. That I have accomplished so little of what I set out to do in life. That I don’t recognize myself in the mirror because I can’t workout the way I used to and the way I need to stay in shape and food is one of the few things that still brings pleasure (GI issues aside) so I work hard but can’t always resist.
Guilt over the time I overdosed 15 years ago after a 3-day-long migraine and within months after a car accident 2 weeks after back surgery. I had gained so much weight, my daily pain was worse than ever, and my pain that week was off the charts. I just couldn’t take it anymore. But as soon as I did it I was reminded that I still grieve daily over my own mother who had died 5 years prior when I was 30, so how would my own children cope without me? Especially my little girl, only 8? I immediately called my husband, who called paramedics. But I drifted off to sleep not knowing what would happen and I had such a sense of peace that I might never have to feel another day of pain. I have gotten a lot of help since that day, but I must admit – with much guilt – that when things are feeling really bad it sometimes feels like the only solution. Not something I Want to do, but maybe the Only Way Out? I feel like such a burden to my family but at the same time I know how much it would hurt them for me to do that. And so because of my love for them and my diminished yet continued hope that it will, eventually, get better, I push on.
I’m in my 22nd yr of Fibromyalgia. I think it is clearest to just list my systems (drive me down and cause despair).
Low electric current all over my body 24/7
Spinal, neck and scalp pain 24/7. Trigger point pain
Great difficulty digesting carbs and animal proteins; must take prescription pig digestive enzymes and HCL acid with all snack and meals. Bloating for two hours
Adult onset Celiac Disease so I have malabsorption off nutrients. Great constipation. Chemical sensitivities. Noise and light sensitivity. Allodynia. Extreme itching. Extreme cold intolerance. Exercises cause a flare. Some people I thought would be my friend forever now look the other way if they see me coming. Family does not call or text, even when I lost my mother.
It feels like a sword in my back just below my right shoulder blade that is never removed & at times is twisting harder. Other times it feels like large hooks stabbed into my upper back & pulling up on the muscles so that I’m lifted off the ground. Always their is that tightness. Even breathing sometimes is uncomfortable. Seems like my arms are being pulled forward all the time. My legs often feel like I’m walking through quicksand & I’m losing the battle. My neck feels like it has rods going from the back of my head all the way down into my shoulders. Turning my head to the side is an effort at times. And the migraines/headaches which flare up too often! I have had a miigraine go on for 5 days & you just want to be dead by day 5! G I issues are everyday & always a problem. Especially bloating happens a lot. Like you are carrying a balloon around your middle. No tight jeans or clothes for me anymore. Going through menopause is it’s own kind of special hell for me. Dealing with the two together, well I didn’t think things could get worse, but that puts a whole new spin on life! Fibro doesn’t play well with others!
Wow, as I read all everyone’s s said, I want to spiritually give everyone a big hug and say I totally understand? And Donna, you’re amazing. I know we all love you for all that you’ve done to represent us and all while having so many of the same, and so much more.
Thank you, Donna. I don’t do Facebook so I sent your link to all my friends. I wonder who will take the time to read it.
Love love love to all
It felt really good to read all those comments and identify so many of my own symptoms, and to know that I’m not some weird freak who is always struggling with the pain , but there are many others of us out there, all struggling in the same way. It helps to know that because as so many of you said…. we feel so very lonely, here on Planet Pain.
Would like to say a massive THANK YOU to those of you who made the effort to write….. despite the pain price it might have cost you.
I am a 62-year-old male, and I can identify with a lot of these things especially with doing too much. If I do too much it feels for several days like I have been electrocuted all over my body excruciating pain just to move. I’m now home and disabled I can’t do a lot of the things I used to because of the pain the fatigue is bad. And on top of that I do suffer with insomnia. The insomnia comes and goes usually it lasts for 6 months or more at a time and then I get a little break. It’s hard for my wife who is patient with me and understanding but it is hard for her to comprehend.