10 Ways to Describe Fibromyalgia to those who hasn’t felt it

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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.We asked from our community “Living with fibromyalgia and chronic illness” a question How would you describe fibromyalgia to those who hasn’t felt it.  This is what they share with us:

Here is what community shares:

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. 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.

5. 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.

6. Body aches and pain all over or in certain places with unpredictable flares. Can also manifest with IBS symptoms, headaches, and fatigue. Can affect concentration( Fibro fog) being able to manage it is most difficult due to being able to predict from one day to the next how you will feel. It is also invisible to others because we don’t look sick. There are things that can be done to help such as medications, diet and other no traditional treatments. Above all, a positive attitude is a must in keeping some sense of normalcy in day to day life. No pity parties which can only be nonproductive

7. 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.

8. 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.

9.Fibromyalgia is a prison and I’m trying to figure out a way to break out. I’ve broken out before for long periods of time–months even. This time I’m older, more stressed and with other health issues to contend with. Still, I will not give up on me.

10. 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.

11. 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 fatique 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 dont want to work.

If you want to add into list, tell us in the comments below. For discussions, FAQs, and support join the group “Living with Fibromyalgia and chronic illness”

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