Fibromyalgia is a Constant pain that never goes that makes you feel like crying. Living with fibromyalgia is be like a Never ever being out of pain in some part of your body or your entire body is bruised. Almost like you’ve been sleeping on a hard floor and someone was kicking you all over. I feel Like I’m sick with a different ailment every day.
We have asked a question to our community “Living with Fibromyalgia and chronic illness“ that what does fibromyalgia feels like?. More than 500 hundred people have taken part in the discussion and share their thoughts with us. Here we The Fibromyalgia Resources have compiled few of their comments which every fibromyalgia patient can relate and agrees with.
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Here is what community share with us:
1. J T- Like a colony of ants holding pitchforks and torches are crawling over every part of your body and no matter what you do, you can’t get the off of you. The burning doesn’t stop, the stabbing doesn’t stop, it only appears better when you’re mentally strong enough to ignore the pain, only then it is somewhat tolerable, but it NEVER goes away! It’s torture
2. Maria Lynch – Imagine being in a suit of armour walking through water and being punched while trying to walk or do daily tasks. Never getting any rest it relief.
3. Elaine J Lloyd – Like your body is broken. No energy, low motivation. Aching, stiffness and pain. Anxiety, depression, restless legs. Sleep problems. Relaxation problems. Sensitive to heat, sound. Not wanting to go anywhere.
4. Deb Miller – Like being smothered in wet concrete and told to go for a long walk as it dries.. with each step and movement, it gets harder and limbs heavier.. you are so exhausted you want to sleep but can’t because your restless legs are now jumping and twitching adding to your misery.
5. Shona Alexander – I feel like I’m wearing sandpaper all day. Clothes really annoy my skin. Hot burning pain all day have episodes where I’m comfy but it takes a dose of morphine to do that xc
6. Wendy Seaman – It’s a burden on everyone. My family, friends and relationships. I’ve lost friends and lost significant others because they couldn’t handle my constant pain and needing to cancel plans. Imagine waking up one day and your legs hurt and you can barely walk. Feeling like bugs are crawling all over you so you scratch yourself until you bleed. It’s constant pain that no medicine can take away. Imagine being exhausted but not being able to sleep because your hips hurt too bad. Then imagine going to several doctors just to get relief and being told you’re crazy. Family and friends tell you to just exercise but you’re too tired and the pain is too much. It feels like living on an abandoned island because I’m just always alone
7. Phuong Caldwell – Like the worse case of the flu without the vomiting. Like you died and no one told you, when it comes to energy. Most days a shower and dishes and I am wiped out.
8. Nancy Billington – It feels like you have a real bad flu, migraine headaches and insomnia all rolled in one. Oh, add irritable bowel and bladder to that! And as a kicker, add anxiety and depression!!! Not a fun condition to have!
9. Angela Young- Feels like being trapped in a body that is not your own, one that constantly gets power failure and won’t reboot. Like a computer that has a virus that has corrupted the entire system… but the computer is that body you’re in. It used to be yours until it got that virus… now it’s just a prison complete with torture in the forms of symptoms and medications and exhaustion. It’s the way your life is now, and you have to find a way to still live, despite all of it. It’s hard to stay sane when you never know when your body will malfunction or when you’ll be tortured.
10. Deirdre O’Brien-Aldridge – When you wake up, you feel like you have been hit by a truck. Pain in you feet as you get up, horrible sleep because of the hip pain and restless leg syndrome. Then you try and start your day, you pick out something extremely soft so it doesn’t hurt your skin. If you are lucky enough to feel better you can go somewhere, but even that seems like climbing MT Everest. Most of the time, I lay down on the couch with a soft blanket and try to be still because if I Move, I have a burning stabbing pain in my hips, lower back, neck and legs. That is my life!
11. Cat Kismekate Frost – It’s like running a marathon and being so fatigued you can’t lift your arms or legs even your head .your eye balls hurt , the electric shocks through your body when you try to walk and the profound tiredness making me want to lie down all the time and then when I do the restless legs start and it feels like there’s a million ants crawling all over my body. They are just a few things because I’ve forgotten what I was going to say ….. oh yes brain fog is awful.
12. Julie Johnson Some times I feel like barbwire is being pulled through my body, the burning and sting pains in my feet and hands feel like a thousand wasps sting me continuously, my head feels like it’s the jello in a jello mold that was just flipped over and is wobbling back and forth, my vision at times is if I really am looking through the bottom of glass jars, my life is often like a game of “Lets make a deal” although I don’t get to pick the curtain or the envelope-the weather does-or my hormones do-or lack of sleep dictates it, etc. I end up with more zonks than celebrations
13. Toni Webster – Fibromyalgia for me feels like chronic muscle pain over my entire body, constipation, fatigue, muscle tenderness, a burning sensation to my skin, anxiety, insomnia, forgetfulness, sensation of coldness to my hands and feet, depression, migraines and joint pain
14. Trina L Bowman – It feels like slow torture, mentally exhausting , debilitating. Life changes which causes you to grieve what you have lost ending in depression . being judged constantly by others . not being able to be involved . friends leaving you cause you are not what you once was .Isolation ..constant stiffness .. pain .. weight gain .. constantly fighting for your right to have pain relief .. because of so many with the Opiod crisis . that we who need it have to suffer .. there are so many things
15. Mae Kraser – My body feels like when I lived with an abuser. I feel bruised and sore everywhere and completely overwhelmed by having no control over this.I am so depressed and anxious all the time. I just wish I could step out of my skin and walk away.
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16. Trisha Storey – Bruised battered sore, and trying to walk around with what feels like broken bones, lake of communication skills the list is endless, its a living hell. Carly Duffin added that its Like trying to walk through treacle with aching joints.
17. Cheryl Ann Holman – I feel like i am on edge because I never know when the pain will start. Its hard when I feel a big pain while driving or in a store..I try to ignore and push the pain down so it doesn’t show. Sometimes I feel 80 years old barely getting out of bed then it goes away and I can move like a kid again. It hinders my life to where I don’t know what to do but I get up and care for my kids…they are my motivation to keep moving
18. Caroline Wheeler – I feel like the Tin Man from Wizard of Oz
19. Lisa Marshall Feels like mourning the loss of your previous self. Feels hopeless, frustrating and depressing. Most of all, it feels very lonely.
20. Pamela McClain – Being constantly squeezed by an invisible python. especially when my condochronitis acts up.
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21. Lisa Blewitt Tusing – Like a Car accident recovery, flu, stranger in a strange land of confusion, isolated from touch because of the pain, exhaustion that will make you think about lying down on the floor at work just to get some relief, throbbing pain all over with every heartbeat, feel like a liar and a fake because nobody believes me except very close relatives, if you cannot see it then it must not be real, you are a whiner who exaggerates. It’s not a real illness, it’s all in your head, if you would eat better and exercise more
22. Louise Blair – It feels like being socially outcast, because nobody can see the pain that you’re in; if the pain was visible, nobody would let you out of your bed! But because they can’t see it, they think nothing is wrong or that we are exaggerating. I wish people knew that fibromyalgia feels like someone’s bruised every single muscle and joint in my body. That’s not even mentioning the other things that come along with it, like migraines and nausea.
23. Ranya Khayri – It feels like a burden on my shoulders when ever I’m trying to get up it brings me down again , it’s destroying my life even my relationships with the closest ones , I don’t have the ability to deal with anything , always very tense & sensitive
24. Lori Richards – Like I have run a marathon I never trained for and then stuck my hand in a light socket. Muscles aching, Muscles burning, muscles shocky feeling and so very tired
25. Lisa Watson – It feels like someone is scraping all your muscles, meat and everything else off your bones with a wallpaper scraper. Thats the best way i discribe it to anyone.
26. Lee Burke – Red hot railroad spikes being pounded into my body with a sledge hammer
27. Moriah Flynne – For me it is like always having the flu. Body aches, heavy legs and arms. And extremely exhausted. adding to it, For me on a good day it feels like my whole body aches like the flu. On a bad day that times 100. Then different days different parts hurt more than others.
28. Holly Nichols Rumley – Constant pain all over. Feels like muscles are tense all the time. Nausea almost daily. Anxiety, especially when around people and with loud noises. Unable to concentrate and can’t remember anything
29. Paige Elliott – A burning fire sensation over any muscle group, pain and tenderness hips, spine, even scalp and temples
30. Pamela Pernell- like my bones are on fire and it’s a deep pain, i forget things, sleep a lot, it’s a depressing disease, a lonely one.
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31. Carolyn Thomson – Pain like you went on a long hile and the sore muscles afterwards , only all over. Stiffness in the necK and shoulders. Can’t come hair very well because your arms dont go up to your head. night sweats. Legs are very weak and don’t go very far .Eyes hurt , and water so it’s hard to read. Having to say I can’t go with you .. waiting for relief and a cure.
32. Lisa Shifflett Kingrea – Feels like you are at least twice your age, a sense of being paralyzed from the neck down, your mind wants and longs to do all life offers, yet your body can’t , feels like you fell out of a tree and hit every branch on your way down with every part of your body, there are times when feel as though you are actually going to die at with the bad flares, and times when you don’t know how to keep going as you are.
33. Marie Franz It teaches you how to appreciate the little things in life and never take anything for granted. It makes you rethink your entirely life and focus on what’s important. It forces you to slow down, cherish who you are, who you love. It gives you the opportunity to discover a skill you never thought you had.
34. Jessica Bonnar Each day can be different, it may be just the few places that hurt and feel like I’ve got hot pokers sticking in me or if its my chest I feel like I’ve gone ten rounds with tyson other days I feel as though I’ve just finished a marathon and my legs are dead and hurting so bad, its varies from day to day but most days its as if I’ve been in an MMA cage fight during the night and lost
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35. Renee DeBoer Verplank Imagine: before you even open your eyes each morning, you lay in bed thinking, do I hurt? How bad will it hurt to sit up right now? A fear of mine crosses my mind every night as I lay down, when I wake up in the morning how bad will I hurt. Not will I hurt, but how bad will it be. “Will it be a good day? A good morning? Maybe a good hour. God please give me an hour! Please”
When there is a low pressure system moving in my bones feel as if they are imploding, if there is a high pressure system my bones feel as if they are exploding. If I “over do it” the life is sucked out of me for at least 3 days, typically longer, depending on how far over my line I went, moon cycles, weather cycles, season, allergies, stress, and more. I feel as if I had an extremely hard work out the day before, along with my whole body feeling bruised all the time.
I’m stiff. Like morning stiffness, but all day, but it’s not exactly like morning stiffness, it hurts. My mind gets “foggy” which actually isn’t a real great explanation of that symptom. It’s not really foggy. I’m forgetful, clumsy with my words. Which makes me have anxiety when I’m around people, people I’m not comfortable with, or bigger groups of people.
I’m exhausted. Like all the time. Unless I’m not. Then I can’t sit still. And I over do it, usually because I feel good, that excites me. And every time I tend to over do it, all because i felt good for a day, a morning, an hour.
Imagine having to plan your day, nope scratch that, imagine if you couldn’t even plan your days because you have no idea what day, or time, you will be in so much pain, fatigue, anxiety or some other situation because of this, that you just can’t “go” anymore.
Eventually you have to give into your body and just stop “going” This in itself is stressful. How do you have any sort of life living like that? Not knowing if next week Thursday you would be able to go on a 2 hour field trip with your sons class, or bring the dogs to the vet, or anything else this world expects us to do!
I have always been a “just roll with it” kind of girl. Things happen, plans change, but with this it is the not knowing what each day entails. It’s every day. Bad days suck, they usually last longer then a day. Good days rock! They can last longer then a day. But it’s typical to “over do it” on the first or second good day, which brings me back to square zero! On top of dealing with our every day physical and emotional symptoms, we have to deal with societies stigma of the disease as well.
These are few responses on Fibromyalgia Resources, You can Read More Response here.
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For support and Discussion join the group “Living with Fibromyalgia and Chronic Illness”