What Does Fibromyalgia Feel Like?
What does Fibromyalgia feel like? is a question that those of us with fibromyalgia are often asked. It’s something that those who love us and live with us can’t help but wonder.
Reading about the signs and symptoms of fibromyalgia is one thing, but really feeling them is quite another experience.
Some days you have to laugh at the pain because it’s all you can do, either that or take a gun out back and put yourself out of your misery. Those without Fibro can’t really understand what it’s like, but I thought I’d share some descriptors that I personally use (and that I’ve heard some of my Fibro friends use on a regular basis).What does #Fibro feel like? Pain a whole lot of pain. Click To Tweet
What Does Fibromyalgia Feel Like?
-It feels like you were in a car accident and were left bruised from head to toe.
–It’s like having the flu CONSTANTLY – that same run down, dragged out feeling you get with the flu, where every single bit of your body aches. It feels like that, except it doesn’t go away.
– It’s like someone vacuumed me, I think of the old cartoons where you’d see a character getting sucked into a vacuum and the vacum is so strong that it turns them inside out…that’s what it feels like,
– Like I’m inside out.
– Like I’m wearing a 100lb coat – you see this all the time on work out shows like Biggest Loser where they have the person put on a backpack or a coat that weighs as much as the weight they lost. Well, I didn’t lose the weight, but I often feel like I’m wearing the coat.
– Like I’m wearing lead boots – often I’m wearing the lead boots and the 100lb coat together. They are a matched set.
– Like I had the workout from the Biggest Loser yesterday and I’d never worked out before that. Except that yesterday I did good to get out of bed.
– Like I’ve been plugged into a light socket – luckily I’ve found meds that seem to help with this one.
– Like I got hit by a truck – actually it’s more like you got hit by a mack truck and then after it ran you over it just stopped and you had no way to get out from under it.
– Like I’ve been mummified – head to toe, there are mornings where moving anything just isn’t an option.
– Like someone beat the crap out of me in my sleep
– Like I haven’t slept in a year
– Like you have a constant hangover – not so much the headache but that drugged out feeling and sensory overload.
– Speaking of Sensory Overload – that one is always fun. Trying to be in anything crowded, loud, noisy pretty much overloads you to the point that all you can do is shut down.
– Like I’m brain dead – again that staring at paint dry
– Like I’m playing a constant game of “Password” – my husband thought I was just being funny when I asked him what the name of that room where we sleep was. It wasn’t until I finally sat him down and explained, I really have issues remembering basic words. Now, he’s used to it, but my friends still look at me like I’m crazy on occasion for the words I can’t come up with.
– Like razor blades are ripping through my body
– temperature – this is a hard one to explain. If I get cold it HURTS, when the A/C is blowing directly on me it feels like pain is being blown onto me. I’m the only person I know who will happily go outside in 100 degree weather to “warm up”. Yet, at the same time I can’t stand to be too hot. I get over-heated easily and then…
– the sweating – yep, just hanging out with friends, and sometime just taking a shower will overwork and overheat me to the point where I can’t stop sweating. There have been times I’ve taken a shower because I’ve sweated so much only to get out of the shower and find I’m still sweating.
– All the energy has been drained from my body – everything we do is a drain on our supply of energy (see the Spoon Theory). It’s not that we don’t want to do certain things, like hang out with our friends or clean the house, but we have to pick and choose our battles. Sometimes one big thing means we do nothing for a week. Other times, several small things will add up and zap all our energy without us even realizing it.
– It feels Foggy – some days it really is like looking at the world through a fog or haze. Nothing is clear.
– Like you are being crushed – sometimes it feels like the air around me is so heavy that it’s going to crush me.
– Like I’m on Fire – sometimes different areas of my body will suddenly feel like it’s on fire, similar to the feeling you have when you have a really bad sunburn, but moreso.
–Like I could jump out of my skin – it’s not always physical pain, sometimes it’s emotional. Sometimes, any little thing will just set us off. Jumpy doesn’t even begin to describe it. A sudden noise would send us over the moon.
– Like “What’s the Point?” – sometimes it gets so overwhelming that depression is added and we can’t help but wonder what’s the point of living if I have to live like this.
– It hurts in places you didn’t know you could hurt – your face hurts, your eyelids hurt, you name it it will hurt at some point.
– You wonder if you have Parkinsons – with the twitches and involuntary muscle movements we get, you have to wonder. My grandmother had been diagnosed with Parkinsons many years before she died, and had been being treated for it. About 5 years before she died she had to switch neurologists and the new one said there was no way she had it. Looking back at her life and the pain she suffered, we are now almost sure that she had Fibro. We get twitches and shakes that range from being really uncomfortable to making it impossible to hold a fork or walk.
– You feel like the weakest person in the room – “here open this for me” becomes a mantra that you can’t live without.
– You wonder if it’s all in your head, but you know it’s not – I can’t speak for the number of times I’ve wondered if I’m just some crazy hypochondriac, but I don’t think anyone could imagine the kind of pain we deal with to create it in their mind. It’s real.
–Clothing hurts – just that little bit of something touching you can hurt. A sheet running across you in bed, a skirt swishing.
– Can’t stand to be touched – the lightest touch from you, feels like a squeeze to me. Or worse, when that “plugged into a light socket” feeling is going on, being just inches from another person will feel like I’m being zapped by their energy, and by “zapped” I mean electrocuted.
–Like There is NOT enough coffee in the world – the fatigue is endless. It’s there when we wake up and yet we can’t go to sleep.
– It is getting a mile down the road and forgetting where you were going
– It is knowing there were 3 more of these you thought of, but by the time you got back to the computer they were gone.
It’s feeling lucky when you get 6 straight hours of sleep or actually wake up feeling like you’ve slept. Sleep is a rarity even with sleeping pills, good quality sleep is pretty much non-existent, so we take what we can get.
Like you can’t leave the house without a list – you are doing good if you make it to your first destination and remember why you are there, God forbid you have multiple things to do while you are out.
IBS (Irritable Bowel Syndrome) – the feeling of “I shouldn’t have eaten that” takes on a whole new meaning.
Headaches – Migraines and other headaches typically go hand in hand with Fibro. I was dealing with migraines LONG before I had to deal with other issues related to Fibro.
From my Fibro Friend Katie:
“It feels like a monster is in your body. IT is searing pain, it is like a rubber band wrapped so tight and just gets tighter. IT is like someone is peeling your skin off your body. It is so many things. It will not kill you, but it certainly makes you wish at times that you would just die.”
From my Fibro Friend Angela: It’s like…your brain has turned to mush. You try to read a book (or a paragraph, or even a sentence or two), and your brain refuses to process it. Frequently, you must re-read things over and over. Sometimes, it’s too frustrating to read, because you aren’t processing or even absorbing anything. You begin to question if you have dementia.
It’s like…you need to go back to pre-school. You can’t even calculate the simplest math. First graders know more than you do. You are thankful most people use electronic gadgets for everything, so it may not be so obvious when you use your iPhone to calculate 9+5=?
GhettoGirl’s description of her Fibromyalgia
Ok, my Fibro Friends, I’d love for you to share your other thoughts and descriptions for how Fibro feels to you. How do you describe your symptoms and pains?How do you describe what #fibromyalgia feels like? Click To Tweet
- Signs & symptoms of fibromyalgia
- The fibromyalgia treatments that have helped me most
- You know you have chronic illness when…
- 10 things people with fibromyalgia need to know
Lynn Windham says
I feel like the invasion of the body snatchers switch me out with a pod person.
Well, that’s a bit dramatic. But, today can be a great day. My pain level is about 6 and I can live with that. Out of the blue, when I’m not home, it ratchets up to a 9 or 10! Now I have to drive home. Then there’s the IBSC I’ve been dealing with for much longer than I knew what fibro was. And my best friend Chronic Fatigue likes to visit at the most inopportune times. All of this makes my relationship with my husband a bit, um, strained at times. He can’t help me. He can’t make it better and doesn’t know how or when to touch me. All in all it’s been rather annoying. I went through 4 years of therapy to be okay with my new self. Ugh.
I was a single mother with 3 small boys for 10 yrs. I worked 60 plus hrs a day,6 days a week. I took care of yard work,vehicle maintenance, my house and was daddy & mama to 3 awesome boys. in 2009 that all changed. I hurt my back at work. They fired me because insurance company said I was a liability. Everything was downhill from there. Ive had 2 back surgeries, neck surgery ( neuro doc says I need 4 more) nerve damage,IBS,endometreosis ( I know I spelled that wrong) etc. I was diagnosed a year ago with fibro. My doctor said if all my doctors would have look at all my symptoms as a whole I would have been sooner. I was such a strong person!! I never cried,if people saw me tear up they got away from me. I was so much to so many people and now im nothing but a burden to those same people. I remarried 5 yrs ago to my childhood sweetheart & he stays on me about applying for disability but I dont want to be labeled disabled!!! Reading this page has helped, I read it to my husband in hopes he can understand a lil of what is going on with me. Days like today,when its cold and a migraine woke me after I had finally fell asleep and all my bones hurt, I feel like I dont want to live as this person I have become. I want the old me back or nothing at all. I apologize for grammar mistakes and for going on & on. I just wanted to say thanks for always making me feel like there is someone who understands the hell I live.
A White Girl’s Fibrio Rap
Vibrating, bones achin’, muscle tightness, burning, sore. Exhaustion, sadness, crying. Insides are dying. What did I do? What’s the cause?
Hateful emotion, limp, gimp, electric cart in the store. Stares I’m gettin’ like, “what for?”
Fearful, ashamed, needle in my brain. Feet burning, spots hurting on armslegshandsfeetlegscalves. Nerve endings sending itches to spots unreachable driving me mad. Mind in a fog ’till late afternoon, when that fistful of drugs for breakfast finally make a move.
Husband frustrated, family thinks I’m fakin’, “take some Tylenol, you’ll be better”, my cries go unheeded, I wish I had cancer then at least I’d have an answer.
The “doctors”? Don’t go THERE. They don’t give a sh*t, “she’s a faker”. “Lookin’ for drugs, that’s her M.O”. Fibromyalgia? “That’s not the cause”. “It’s all from your spine”, “your mind”, “next patient please”. Money is great, injectin’ all day, injecting a poison in hopes pain will wane.
Over 2 million women, 300,000 men, why can’t science see there’s a trend?
Someday they’ll find it, the reason or cause, to this unending nightmare called fibromyalgia.
Sorry if this was rough but it’s how most of us feel. And as a rapper, I have NO career but that’s how the thoughts came out of my head! I”m a freelance writer, all over the web since it’s the only work I can do (barely, when the fog’s not in charge). I’m working om a fibro site but it’s not up yet, hope to have it up asap and it’s posted below. I want to post lots of articles on the latest research, fibro products I recommend from research (and trial). I hope you like my attempt at rap but it pretty much encompasses how I feel…
OMG! You should totally record this and put it on Youtube. It definitely works.
I cried reading this, it’s spot on. Since my doc retired the other docs and staff think I’m hypochondriac med seeking wonder. I hate them for it.
Francis OSullivan says
I am new I have been suffering from fibromyalgia and ibs for at least 15 years in the last few weeks I have been on fire from the inside out is the only way I can describe it this is just endless pain and fatigue some days I feel as if I have never had it and that feels fantastic but wow next day, it tells me hi did you miss me I am back
It’s like you have a horrible hangover & full blown man-flu (yes, the bad kind), then you are asked to run 3 hours on a treadmill. Sadly, I would still class this as a ‘good day.’
Wow. I had no idea. So glad you have this site for all those out there dealing with this illness. And thanks for sharing with me Julie! Sorry it took me so long to get here. Martha
Camella Stephenson says
I feel like I have rigor mortis. My muscles feel like they compress so hard they are crushing my tendons and spinal cord. My fibro affects mostly my back and neck with the pain. I still have the fatigue, fibro fog and IBS but the pain makes me feel like I have a spinal injury which also makes me feel sick all over. Like having motion sickness all over your body. Does anyone else have this?
Karen Largent says
I posted this up above but I’ll repeat it here : You’ve pretty much covered most of how it makes me feel. I was diagnosed in 1997, long before it became a household word. I was ridiculed, called crazy, told I was a hypochondriac and more. Even now I cannot resign myself to feeling like this for the rest of my life. I cannot accept it, yet people say I must. Thanks for writing this article but you know what, every time I share something about my illness on Facebook only one or two people even bother to read it or respond, so what’s the point of posting it on Facebook? Sorry, it’s been a very very hard winter for me. As I get older, it get harder and harder, I have concurrent illnesses along with the Fibro.
I know what you mean, I share less and less on my personal page and choose, instead, to interact more and more with those that do “get it” (other patients).
I’m right there with you except iam a Lil crazy so it only makes my illness less visible to people
Kay Boyajan says
Have fibro is like having a million fire ants biting you at the same time over and over again. The burning pain surrounds your entire body, sometimes you can move and be apart of life others you wish you would die so the pain will stop
The thing that gets me frustrated is feeling like you have to explain to everybody that you’re in pain because they look at you and physically there’s nothing wrong with you they don’t see it cast they don’t see a Band-Aid they don’t see nothing so they think you make it up to get out of work which is the last thing I want I would love to be able to be who I used to be! You can’t lay in bed because the bed hurts your body you can’t get up because you’re so tired all you want to do is sleep but then you have to wake up to take medication so that you not in severe pain while you laying in bed is just a never ending circle of pain medicine and pain and medicine and excuses and apologies to everyone!! ( god help me make it threw this )
Here’s a description for you the heels of my feet feel like Rawflesh like shredded hamburger laying on the bed against the sheet, in my shoes my feet feel like big balloons and all the pressures coming down on them has you walk in your trying not to pop the balloons because it hurts so bad but I still stand on my feet eight hours a day never seem to make it 40 hours a week so I would be unemployed if it was not for FMLA have a five-year-old, three dogs, two cats and my husband passed away two years ago I never realized how much he really did to help me on a daily basis but I sure do now in the house sure shows it to , sometimes I don’t think I’m going to make it through there’s always so much to do you barely have the energy to cook or do laundry pick one!! Everyone we just got a hang in there and do what we can do from day today Lord knows we all want to get caught up but we try and try that’s all we can do!! I do wonder with all the memory loss if I’m going to get dementia or Alzheimer’s from having fibromyalgia does anybody know if it causes dementia or Alzheimer’s????
I know what you mean. Thank you for sharing your descriptions. :Hugs:
Hope your having a good day today nothing worse than a Saturday being sick. Do I say sick? being in pain so you can’t even enjoy the weekend :~] hugs back…
We had a very busy day, much more so than I would have liked. But, we made it. I hope your day was good.
The invisibility side of our illness really does suck. I’m sorry you are dealing with this too.
Yes, and *if you’re “lucky” enough to get any meds that work. I began passing bloody stools last year every time I’d take an ibuprofen or naproxen…tell a Dr that having fibro, let alone the 3 blown discs, and trigeminal neuralgia, and you’re guaranteed to be treated like a “seeker”. It makes sense to me that I seek effective treatment for this horrific pain that renders me defeated, self-loathing, glued to the couch, broke and broken. I now have bouts of ptsd every time I have a Dr appt, and they love booking those, milking those tests, prescribing garbage that is useless as anything other than poison, pretending that they care about your well-being all the while patronizing you. It takes everything in me to psyche myself up, peel myself off the couch and go give these people more money to treat me that way. What a vicious pscycle, I am praying with everything in me that this new Dr I’m going to see will be better, I’m not sure how much more any of us are expected to stand.
I apologize for such negativity, I’m trying very hard to not let things get to me so much, but… I hope that each and every one of us has a breakthrough, less pain, healing of relationships, finances, self-worth, everything that’s been taken from us restored! Love to you all
What’s Fibromyalgia Feel Like? Yep, mine pretty much matches 80% of this description.
I would love to link this post on my blog because it’s amazing! Let me know?
Yes. Definitely. While you are at it don’t forget to link to your interview!
Just found your post and have to say I can agree with every description given. Before I read the Spoon Theory I use to tell people to get a clothespin or one of those black binder clips you use to keep large stacks of paper together. You Admins know which ones I’m talking about 🙂 Put that on your finger. Yes it’s going to hurt but leave it there anyway. That’s basically what it’s like having fibro except the pain is EVERYWHERE not just one finger. Difference is that I can’t ever remove the clothespin or binder clip to get some relief. That’s very basic of what the pain is like not. It’s not counting the other issues like y’all I too have those chills and sweats for no reason. My husband makes fun of my twitches because I apparently do them if I take a nap no not sleep, I nap. Had insomnia since I guess birth? Long time I have no idea. The cramping in my feet not my legs or that would be a potassium issue but my toes just tighten all the time. Sometimes I will catch myself being all tensed up and have no idea why I do that. The memory loss has been a favorite thing to happen to me. Being sarcastic of course. I use to be able to spell really well and it frustrates me to no end when I can’t remember simple every day 2 syllable words. Agree with the person who said they feel like a first grader iz smarter than they are. I know that feeling quite well yes! Also know what it’s like to feel alone too. Family and so called friends have other things to do than wait on me to slow them down. I’m not even 40 and I feel like I’m 80 most days! Even had to get a motorized scooter because I can no longer walk further than the length of our house without falling over myself. That’s been really hard to get use to. I never leave my house! Sad thing is I don’t even want to. When my mom was sick I learned to be patient with her and now I wish someone was here for me but they are too busy. My husband has to work and he is more than dutiful I really have a diamond of a husband. Wish the rest of my family understood fibro like he does or at least TRY! They think it’s all in my head
Julie Ryan says
Sorry you are having a rough time of it. I’ve been there, at that point of not wanting to leave the house (or even the bed), it’s not a great place to be. I hope you can find some answers to turn things around, like I’ve been able to do. I’ts NOT all in your head!
Marilyn Lawson says
It’s not just reading that is a problem for me. Sometimes things sound muffled but even when they dont there are days my brain will not process what it hears or it processes it totally different from what was said. For me, its like I am in a milky bubble at times, my eyes and ears go whacky, tastes are off, all my senses go nuts.
it’s like waking up in the middle of the night to find all of your arms and legs tingling like they are asleep. it’s like floating above your body instead of sleeping. it’s like something is eating your muscles from the inside.
Carolyn Macdonell-Kelly says
Just found your blog and was astonished to see the vacuum description where you feel inside out. I’ve tried to explain this to my family so many times! All of the descriptions are so true, but always changing and for me today is an inside out day. Thanks for sharing.
Glad you’re here. I hope you feel better when you wake up
Rev. Charmayne G. Davis says
I can identify with almost every systom listed above. I have had Fibro since 1990. It developed after a car accident in 1989. My body has felt like it was the day after the accident some 22 years later. Everyday, I hurt. Today, the skin on my right leg and foot feels as if it has been peeled off and the nerves exposed.
It is a very difficult way to live but you press forward. You have too.
I presently feel like I’m on fire – from the inside out. My cotton pjs are so painful – especially against my elbow, ankles, and hips. I am exhausted but no matter what I do, I can’t fall asleep. My head feels like it wants to explode and I forget what I’m typing as I’m doing bc a million things are racing through my head. I never feel that will catch up. No one understands me expect my mom who’s been living with this for years.
Fiona Fishnets says
I love this! I think everyone with Fibromyalgia should write out a list like this with their symptoms, what they feel like, and then compare them to things healthy people can relate to, like a bad sun burn, bruises, a flu, weakness after a hard work out, ect…
So many people get upset that others have trouble understanding invisible illnesses, but I feel like if they *tried* to really relate their symptoms to things healthy people go through, they’d be impressed by how much those people *can* understand about them if they’re given the chance.
I fell like several bees stung me
Heidi Helene says
Like your blood is poisoned and your vessels are putting up various different road blocks on a daily basis. So that you never know exactly where the pain is going to settle in because the Vessel street crew certainly doesn’t give you a schedule.
I don’t shake terribly much, but I drop things a lot and that muscle going up the arm from the thumbs(on both hands or I would think it was from controlling the mouse on the computer) feels so weak that a pen feels like it weighs 20lbs and the phone about 150.
Like all the stupid drugs they give you are just to make you more tired so maybe you’ll shut up and just sleep your life away.
That electrical shock thing going up and down my spine is also the only thing that the drugs really feel like they have worked, but again…it makes me so tired.
I too have suffered migraines since I was a kid but that was the only pain I had until I got pregnant the second time at age 30. The past 7 years have just been one thing after the other.
Some days like today, I am so tired all day that I give in to it. Now I am up at 330 am and know that by around 7am I am going to be tired again and then I will sleep all morning and my poor daughter(age 12) will be making her and her brother’s breakfast and that really pisses me off. As tired as I feel most of the time, I am thinking about talking to the doctor about a sleeping pill I can take at night to sleep through and get up at a normal hour.
Sorry this is so long. I’ve had a very frustrating day…week(s)..summer….well you know what I mean.
Wow! Some one like me! For a while here I thought for sure I must have a brain tumor or something, but after reading this I feel totally normal (as some one with fibro). Thanks for putting the effort into posting all this, it really does describe what it’s like to have this insane illness! 🙂
I’m reading all of these and saying WOW and OMG. I can, in one way or another, relate to every single comment. Thankyou to everyone here for sharing and helping me.
For me, this is a condition that I feel like I am still learning to cope with, even though I have been diagnosed for 2 years. I still can’t wrap my head around this disease. I, too, have experienced the sweats, and I am sooo sensitive to heat and cold, and I can’t stand the heat at all, so I crank up the ac and freeze, but that is better than dealing with the heat, which not only causes me to sweat, but it also causes my blood pressure to go up with the heat, and so I choose to freeze, which isn’t much better.
I get frustrated when I can’t remember simple words I have known most of my life, or when I am out running errands and can’t remember how to get home. I get “zapped” regularly, as well as twitching and itching and burning. I get so tired I can barely make it from my computer to the couch and feel like I am walking in the worst fog ever. All of the pain meds that I am on barely manage to make the pain just a little more tolerable, but that doesn’t mean that I don’t hurt, and sometimes I hurt so badly I can’t stand it, but I try to keep on moving, because if I don’t try to get out of bed and move, I know that if I stay in bed, I will not ever get out of it.
And then there are the trips to various doctors–one for every problem and condition I have been diagnosed with–and I constantly get new diagnoses. I know that fibro is a condition about which there is not that much understanding and that many doctors still do not believe in it, but I fully believe at this point that as understanding comes, fibro will eventually be found to be an autoimmune disease.
Even as I am typing this, my fingers are twitching so much it is hard to type, and my pain is so bad that it is extremely hard to get up out of this chair. But I want my friends and family to know that I do not want anyone to feel sorry for me, and if I have mistakenly given anyone that impression, just know that this is my life, and I spend every moment dealing with symptoms as they come, and the last thing that I want is for anyone to feel sorry for me. Please understand that I will have to ask for help opening jars or popping the tabs on soda cans. I sometimes need help help just getting up–and trying to get up off the floor has to be rather amusing to anyone who has seen me try to do that since my knee replacement, but I will eventually manage to get up. I will eventually manage to do whatever needs to be done, albeit slowly. Sooooo, that is my story and I am sticking to it!!
I’m reading your story and am confused if it’s my own. I’m crying too bc you’ve articulated SO much of what I’ve been through. I was diagnosed in September 2009 and am also trying to wrap my head around what happens to my body and my mind. Sometimes I feel so free but other times I feel like a prisoner in my own brain. I don’t tell people how I feel bc (like discussed on here) the stares or the “yea rights” get the better of me. I NEVER understood my mom when she said that her shirt HURT her elbows… I’m paying the price now for questioning her that’s for sure. Bottom line… thank you for sharing your story. I know it is yours but so much of myself is right there with you.
The more I read different people’s stories of Fibro the more they sound eerily similar. We have much more in common than we have differences.
I didn’t realize the sweating thing was a part of it! What a relief to know that!! I thought it was just me! I’ll be doing something and then start sweating and just cannot stop…it’s disgusting and embarrassing as crap!
WOW! this makes sense now! Thanks so much for pointing this out 🙂
🙁 I do want you to feel better.