20 ways to imagine what fibromyalgia disorder feels like

Most people don’t believe in fibromyalgia, they say it’s all in your head. You have also faced such people in your life. Sometimes people ask you about your illness, so it is our time to explain what fibromyalgia is like because they have not experienced what we are experiencing. Fibromyalgia is the hardest thing to treat that people don’t understand. We asked our Facebook online community the question , How do you describe your feeling about fibromyalgia?

Fibromyalgia is a great incentive to live each day. If you wake up and can move, take advantage of it. If you wake up and can’t move, don’t. Get some rest, read a book, watch a movie. It may not be what you want, but it is what you have to do that day. Tomorrow is a new day and it may well be different than yesterday. Be thankful for tomorrow because many people don’t have it. I know it’s hard to feel this way when you are in constant agony, but there is always something good in every day. 

There are no words to describe how horrible it is, it is a living hell, it makes me feel like I no longer have a life. But we’ve compiled some of the pain descriptions our members tell us below.

This is what the community shares with us:

1.  Imagine the worst flu you’ve ever had and then multiply that by 10, then imagine being hit or hit by a car, then think about the most exhausted you’ve ever been and multiply that by 10. And maybe you can imagine how a It feels. a good day living with fibromyalgia. A bad day really defies all understanding and understanding.

2.   You have run a 10K, with the flu and also have cut all the grass by hand with scissors. That kind of pain. But everyone expects you to do it again the next day because you don’t look sick.

3.   Pain moving through your body. Pick a spot and hold your breath until it passes and then it will just move to another spot. You fight to pretend it doesn’t hurt and you try not to cry or just cry. You feel tired but you can’t sleep just a version of the dream where you listen to everything and get full of adrenaline wide awake. Heart pounding and exhausted, go back down if you can. The tips of your fingers and toes sometimes become numb and you cannot bear the cold. Your muscles knot and twist and you try to relax and not tense up because an excruciating headache could be next. You have bouts of depression and I personally run away into music or fantasy to cope with many things. You can’t speak well all the time and you have a hard time thinking clearly and concentrating. Yes, it is enough for now. Just an idea.

4. Beth W-   makes me feel like a tin man. That’s perfect, the tin man that needs to be greased on EVERY joint. And someone holding a torch to ALL of my aching muscles. With the head in a vice. Yeah that sums it up, what a miserable existence

5. Marjie C  – She makes me feel like a prisoner in my own body! Not knowing what torture will come next

6. Jessica C  – I feel like I’ve been hit with a bat, my muscles feel like they’re ripped and pulled, I feel like I have a 2 × 4 that sits on my shoulders all day while I have the flu and sweat. death…

7. Vickie M-   I feel like I have a little elf inside my body running around with an ice pick and randomly stabbing my joints and muscles 24/7.

8. Kimmie G-   Like a triple trailer hit me; like I need my hips replaced; cut me at the waist because the lower half is just not used in a friendly way; your worst hangover quadrillion X’s worst flu 2 hit humanity and a memory lapse the size of a knat …… otherwise I feel great!

 . Tracey W –  I have a ghost who loves to squeeze my body parts, as if someone were digging their fingers into your skin and grabbing your muscles with a strong grip.

10. You  have a head grip, a 20-pound backpack weighs on your shoulders, hips, knees, ankles, feet, and hands. At the tip of that pain is a tingling like when your foot falls asleep… except instead of just your foot, it’s all over your body. His eyes are sore from exertion, his skin sensitive to the touch, his nose sensitive to smells. Lack of restful sleep keeps you groggy and fatigued.

11. Kerryn E –   It’s like having a hangover and being drunk but also sick like the flu after doing intense full body exercise and 10 rounds with mike Tyson, but lost and living on another planet because I am an alien compared to others that they cannot understand my life as

12.  It’s a living HELL! It hurts every day. The pain moves continuously. Just when you think there is no other place that can hurt you, your skin hurts. It’s like being hit by a Mack truck over and over again. It takes me hours to shower, apply makeup, and blow-dry my hair. By the time I’m done, I have to sit down and rest. It’s hard to sleep at night because you can’t find a position that doesn’t hurt.

13.   Pain that intensifies from head to toes, as if someone is pouring hot liquid down your throat and running through your body. the hardest part is trying to stay positive in spite of everything. You never know if it will manifest as  IBS  one day,  migraines  the next, and Epstein Barr. then depression on top. More symptoms appear every day. I have these horrible scars on my skin, where the itching got so bad that I ripped the skin and made it bleed. It has left terrible marks that appear to have been burned. Ironically, the burning comes from within.

14.  Excruciating burning pain throughout my body, which feels like being set on fire. Shooting pain in feet and heels that feels like walking on shards of glass. Take the most tired thing you’ve ever felt and multiply it by 100. The flu by 10. Burning pain when you touch your skin. Pain that does not help with any medicine. Pain and fatigue so severe that I cannot work. Almost losing everything I worked so hard for, waiting 2 years for my disability to be approved. Living with severe and debilitating pain and still looking normal, which makes me feel guilty that I can’t work because people treat me like I’m lazy and just don’t want to work.

15. Sandra L –   A thief who has stolen my life. No two days are the same. You never know what he’s going to throw at you. Every day is something new, a new pain, a new outbreak. Being bedridden. You are fighting your body just to get through the day. No one should have to live, not exist like that. Pain is excruciating pain that most people cannot handle and we have no choice but to accept it. The medical field has really let us down.

16. Tracy W –   Like someone found the pull cords for all my muscles and tendons, then pulled them up to my thigh. I feel that way a lot and I say it won’t be a wedge.

17.  Imagine a nylon rope. Twist it against the grain. See those little openings? Pour crushed glass and sand inside. Now twist the cord to close it. Do you feel the sand that does not allow the nylon to return to its original point? Now imagine that the nylon cord is every muscle fiber, tendon, and ligament in your fingers, hands, wrists, ankles, feet, and toes. Put on shoes. Gloves. It is uncomfortable?

Now try walking. Driving Standing. Grocery shopping. Sounds horrible right? Now imagine you are NOT getting relief. Some days they add every part of their back to the list. Add nausea. Add in migraine headaches. You just want to sleep, but the dream doesn’t come.

Your head feels  clouded  . You often lose words in the middle of a sentence. You cannot think clearly. People think you are stupid, even if you are not. Add mental health issues to the mix. Still feeling overwhelmed? This is a good day. Tomorrow may be worse. You can’t plan this. You don’t get any kind of warning.

18  . When I have a breakout, it feels like the acid is flowing through me and burning me from the inside out. But on “normal” days I try not to recognize pain; I just do what I have to do, but it’s always back there, keeping me from being everything I know I could be.

The nerve pain is excruciating and although I have pain in my neck, hips, shoulders, hands and feet that is pretty constant, every now and then I get a stab in my stomach or chest that comes out of nowhere. And it takes my breath away far. The last time I felt good was for a whole day when the doctor prescribed me steroids. I was pain free and it was glorious, then it started to burn my stomach and cause cramps. I had to stop taking the medications. However, memory problems and fatigue bothered me more. Maybe because my mom has Alzheimer’s and I’m terrified that she’s coming after me.

19. Janice R –   I feel like I am tied to two horses and they are going in different directions. My arms to one horse, my legs to the other. My plugs feel out of joint. It becomes terrible at breakout times. Other times not so bad, but still in pain.

20. June J –   I feel like someone is going around in my brain and choosing what and when I will become deaf, dumb and dizzy.

If you’d like to add to the list, please tell us in the comments below. 


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