International Fibromyalgia Awareness Day is coming up on Thursday, May 12, and I need your help!
Each year, I post an article on this special day to bring awareness to our community and what it’s like to live with fibromyalgia. I plan to follow the same format this year that I’ve used in previous years where I ask a question, you all send me your answers and then I compile them into an Awareness Day article.
I also create graphics featuring some of the responses, which can then be shared on social media.
Below are links to past Awareness Day articles, so that you can see the format and how the responses are presented:
What I wish others knew about fibromyalgia
What living with fibromyalgia has taught me
This year’s question is: What does fibromyalgia feel like to you?
I know you guys are going to have A LOT to say on that question!
If you’d like to participate in this project, email your answer to donna@fedupwithfatigue.com by the end of the day Monday, May 9. If you do not have email, you are welcome to share your response in the comments section at the end of this post.
Please limit your response to 100 words or less, and include your first name, the initial of your last name and your state if you live in the U.S. or your country if you’re international.
I will compile a sampling of responses into this year’s Awareness Day article, which will publish on May 12 here on FedUpWithFatigue.com and on Fed Up With Fatigue’s Facebook, Twitter and Pinterest accounts.
I look forward to reading and sharing your responses! Feel free to get crazy with the adjectives. 🙂
I’m Donna, a longtime newspaper reporter, health writer and chronic illness thriver! Fed Up with Fatigue provides weekly news, research, treatments and more to help you live better with fibromyalgia and/or Lyme.
Fibromyalgia feels like you’ve been hit by a Mac truck. It feels like waking up too tired and with too much pain to get out of bed. It feels like going to bed/sleep is too hard and waking up is even harder. It feels like having the flu that won’t go away. It feels like poison in my veins. If I was a car it feels like I have an alternator that doesn’t recharge my battery. Or a cell phone that can’t keep a charge. It feels like exercise should help but instead exercise hurts. It feels like electricity is running through my body and all my nerves are on edge. It feels like touch, smell, sound, light, and people around me are too much for my nerves to handle. And pain too. It feels like the world around me is too much and isolation is tolerable. It feels misunderstood and hopeless.
Fibromyalgia is hell to live with.
Fibromyalgia feels like trying to walk with bricks on your feet. Your thoughts are sifting through strainers and only a few words will finally make it out. The thought process is so slow. You wake up feeling like you moved bricks all night and your arms ache like you built a whole house. I call the unending overall pain, the Fibrobeast.
I feel like a porcupine is trying to push out of my skin. Prickly Goose Bumps everywhere.
My skin feels like a lead dive suit.
Phantom pain
Meditation at 2pm with Alpha or Theta wave background music. Sometimes nap other times not. Keeps me up a few more hours in the day. Learning to say NO a lot.
It’s the changing symptoms that get to you. One day it’s headache, the next day It’s dizziness or muscle pain ir exhaustion. Never a dull moment.
It feels like your body is full of broken glass and like every single one of your muscles is pulled painfully. It feels like your muscles are on fire with burning pain. It feels like bugs crawling all over your skin all the time. It feels like waking up in the middle of the night at like 3am because your pain is so bad that you just cry as you try to fall back asleep. It makes it so hard to fall asleep and stay asleep that we are all exhausted.
It makes you feel so dizzy it’s hard to even balance and walk. It gives you migraines so painful you can’t focus on anything but the pain. It makes you so forgetful that you will forget the conversation in the middle of talking. It makes everything so painful I think about how much relief I would get just to be not alive anymore. It limited my abilities so I can’t even walk, stand, or sit up straight for more than a few minutes at a time. It took me away from doing things I love like hiking and camping.
It made me incapable of working anymore and I’m only 30 but SSA still doesn’t want to help because I’m “too young” to be disabled. And doctors don’t even want to do testing anymore, any new problem you have is fibromyalgia’s fault as they say.
They act like it’s all in your head especially with PTSD and depression issues. Even doing all the therapy they still refuse to do other testing even though I’m high risk for things like cancer. It feels like the doctors are constantly invalidating you and they love to tell you there’s no fibromyalgia specialists so you have to deal with your GP who knows nothing about anything except basics. They definely don’t understand chronic illness. Basically having fibromyalgia is a f*cking living hell.
My whole life has been in so much pain, symptoms that came and went which crippled me at times but life went on til I no longer could pretend and when I was diagnosed with cfs and fibromyalgia at the Cleveland clinic other docs didn’t believe it and I was dismissed as a nut job which was more painful and scary as I was passing out, having heart attacks, cancer which all was delayed in treatment because fibromyalgia was on my charts. I am 76 and still suffering from other autoimmune diseases. I have a brain tumor now and liver and kidney disease and rare skin disease. When they ask about my anxiety disorder and what makes me anxious I tell them “ you do”. Now they say I have fallen through the cracks and have a poor quality of life. I refuse to listen to that because no matter how much I suffer I also raised two wonderful children and am an accomplished artist in spite of my health.
I feel alone. I feel hopeless and dead. I feel tired from pretending I do not suffer.
Debra M Canada
Fibromyalgia feels like the destruction of my body and mind. It is 24/7 pain in all my joints, searing pain in my feet, throbbing headaches, aching muscles, GI issues, insomnia as well as many other symptoms. The worst part is my loss of my old life! My life now consists of laying in bed. Alone.
I feel half alive compared to my previous life and every day is a battle. But the worst part of this for me is other people not even trying to understand, or listen to what’s wrong. It’s mind boggling how they can’t process that no one would give up/lose their career, social life, regular exercise, without very valid and heart breaking reasons
If you have ever totaled out a car you may know some of the feelings of fibro.
It feels like a migraine thru the entire body.
My body aches when touched. My muscles go into spasm at any given moment. It hurts my arms to lift anything. I am super sensitive to the cold.I am always tired even after waking up. I must drag myself out of bed each morning.
My Fibromyalgia feels like I’m perpetually tired, achy, sometimes muscles are sore to touch, skin burns, extremities are heavy, joints are stiff and rarely do I have a day when I feel ‘all good’! I also have Systemic Lupus so my ‘good’ days are rare. My motto is ‘things could be worse’ 🙂
Fibromyalgia feels like having weights attached to all of the muscles in my neck & shoulder blades & back , also my arms ache just to lift them up , it’s exhausting to just be ……
It’s being beyond exhausted all the time but unable to sleep, then like trying to run a marathon in waist deep water and then feeling like someone has somehow reached in your brain and hidden away words that you need to speak sense.
I feel SICK AND TIRED beyond explanation !!!
My skin feels like I have been buried in an ant hill and every creepy crawly critter in the universe is using my body as a superhighway.