Most of people don’t believe on fibromyalgia, they say its all in your head. You also have faced such people in your life. Sometime people ask from you about your illness, so that is our time to explain what fibromyalgia is like because they have not experience what we are experiencing. Fibromyalgia is the hardest thing to deal with people don’t understand. We asked the question to our online Facebook community “Living with Fibromyalgia and Chronic Illness” that How do you describe your feeling about fibromyalgia?.
Fibromyalgia is a great incentive to live for each day. If you wake up and can move, make the most of it. If you wake up and can’t move, then don’t. Get some rest, read a book, watch a movie. It might not be what you want, but it’s what you have to do for that day. Tomorrow is a new day and may well be different to yesterday. Be thankful that you have tomorrow because many people don’t. I know it’s difficult to feel that way when you’re in constant agony but there is always something good to in each day.
No words to describe how awful it is it’s a living hell, It makes feel like I don’t have a life no more. But we have compiled few of the pain description tell us by our members below.
This is what community shares with us:
1.Imagine the worst flu you have ever had then multiply that by 10, then imagine having been beaten ,or hit by a car , then think about the most exhausted you have ever been and multiply by 10. And maybe you can imagine how a good day living with Fibromyalgia feels. A bad day really defies all understanding and comprehension.
2. You’ve run a 10K, with the flu plus you cut all your grass by hand with scissors. That kind of sore. But everyone expects you to do it all over again the next day because, you don’t look sick.
3. Pain that moves around your body. It picks a spot and you hold your breath till it passes and then it will just move to another spot. You fight to pretend that you are not hurting and you try not to cry out or just cry. You feel tired but you cannot sleep only a version of sleep where you hear everything and you become adrenaline charged wide awake. Heart pounding and exhausted you go back down if you can at all. Your finger and toe tips sometimes go numb and you cannot stand being cold. Your muscles knot and twist and you try to relax and not not tense because a excruciating headache might be next. You have bouts of depression and I personally run away in music or fantasy to cope a lot. You can’t talk right all the time and you struggle to think clearly and focus. Yeah that’s enough for now. Just an idea.
4. Beth W- it make me feel like a tin man. That’s perfect, the tin man that needs to be oiled in EVERY single joint. And someone holding a torch to ALL my aching muscles. With my head in a vice. Yep, that about sums it up, what a miserable existence
5. Marjie C– It makes me feel like a prisoner in my own body! Never knowing what torture is coming next
6. Jessica C– I feel like I have been hit with a bat, my muscles feel like they are being torn and tugged, I feel like I have a 2×4 that sits on my shoulders all day while having the flu and sweating to 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 ran over me; like I need my hips replaced; cut me off at the waist because lower half just isn’t used friendly; your worst hangover X’s quadrillion with the worst flu 2 hit mankind & a memory span the size of a knat……otherwise, I feel great!
9. Tracey W – I have a ghost that loves to squeeze my body parts, like someone digging their fingers into your skin and grabbing your muscles in a tight vice grip.
10. A vice grip is on your head, a 20 pound backpack is weighing down your shoulders, your hips, your knees, your ankles, your feet, and your hands ache. On tip of that ache is a tingle like when your foot falls asleep..except instead of just your foot, it’s over your entire body. Your eyes are sore from strain, your skin sensitive to touch, your nose sensitive to smells. The lack of restful sleep keeps you groggy and fatigued.
11. Kerryn E – It’s like being hungover and drunk but also sick like flu after doing a full body intense work out and 10 rounds with mike Tyson but lost and living on another planet because I’m an alien compared to others they can’t comprehend my life like
12 . It’s a living HELL! You hurt every day. The pain moves around continually. Just when you think there is no other place that can hurt, your skin hurts. It’s like a Mack truck ran you over, and over again. It takes me hours to shower, put makeup on, and dry my hair. By the time I’m done, I have to sit 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 the head to your toes as if someone is pouring a hot liquid down your throat and it travels the insides of your body. the toughest thing is trying to remain positive through it all. you never know if it’s going to manifest itself as IBS one day, migraines the next, and Epstein Barr. then depression on top of it. I have more symptoms popping up daily. I have these awful looking skin scars from where the itching got so bad I tore through the skin and made it bleed. it has left terrible marks that look like I was burned. Ironically the burning comes from inside.
14. Unbearable burning pain through out my entire body, that feels like I was set on fire. Stabbing pain to feet and heels that feels like I am walking on shards of glass. Take the tiredest you have ever felt and multiply that by 100. The flu times 10. Burning pain when skin is touched. Pain that no medication helps. Pain and fatigue so severe, I can’t work. Almost losing everything I worked so hard for, waiting 2 years for my disability to be approved. Living with severe debilitating pain and still appear normal, which makes me feel guilty that I can’t work because people treat me like I am lazy and just don’t want to work.
15. Sandra L – A thief that has stolen my life. No two days are the same. You never know what it’s gonna throw at you. Every day is something new a new pain a new flare. Being bedridden. You’re fighting your body just to get through the day. Nobody should have to live no exist like this Pain is excruciating pain most people can’t handle n we have no choice but to accept it. The medical field has really let us down.
16. Tracy W – Like someone found the draw-cords to all my muscles and tendons, then pulled them all up thigh. I feel like that a lot and peay it not gonna be a wedgy.
17. Imagine a nylon cord. Twist it against the grain. See those tiny openings? Pour crushed glass and sand inside them. Now twist the cord closed. Feel the grit that doesn’t allow the nylon to go back to the original point? Now imagine the nylon cord is every muscle fiber, tendon, and ligament in your fingers, hands, wrists, ankles, feet, and toes. Put on shoes. Gloves. Is it uncomfortable?
Now try walking. Driving. Standing. Grocery shopping. Sounds horrible doesn’t it? Now imagine you get NO relief. Some days add every part of your back to the list. Add nausea. Add migraine headaches. You just want to sleep, but sleep doesn’t come.
Your head feels foggy. You lose words usually in the middle of the sentence. You can’t think straight. People think you’re stupid, even if you are not. Add mental health problems to the mix. Feeling overwhelmed yet? This is a good day. Tomorrow may be worse. You can’t plan for this. You don’t get any kind of warning.
18. When I’m having a flareup it feels like acid is flowing through me and burning me from the inside out. But “normal” days I try not to acknowledge the pain; I just do what I need to do, but it’s always there in the back, keeping me from being all I know I could be.
Nerve pain is hideous and though I have pain in my neck, hips, shoulders, hands and feet that are pretty constant, once in a while I’ll get a stab in my gut or my chest that comes out of nowhere and takes my breath away. The last time I felt good was for one whole day when the doctor put me on steroids. I had no pain and it was glorious, then it started burning my stomach and causing cramps. I had to stop the medicines. The memory issues and fatigue upset me more, though. Maybe because my mom has Alzheimer’s and I am terrified it’s coming for me.
19. Janice R – I feel like I,m tied to two horses and they are going in different directions. My arms to one horse my legs to the other one. My sockets feel out of joint. It gets terrible at times of flare ups. Other times not as bad , but still in pain.
20. June J – I feel like someone is dancing around in my brain and choosing what and when I become deaf, dumb and dizzy.