Fibromyalgia is both a common pain disorder and one that is commonly is misunderstood.
If I had a pound for all the times I was told to just exercise and I'll be better, or to snap out of it, I would probably be a rich person.
So to try and dispell a few myths here are a few things, both I and other people with Fibromyalgia want you to know.
Things I want you to know about Fibromyalgia
Hug Me – But Not Too Hard.
I still want the hugs I used to have, but please my skin hurts, so just be a little more gentle.
Yes, I Spend a Lot of Time in my PJs.
But they are comfortable! They don't feel like they are about to cut me in half like “normal” clothing does. However, don't worry I have a different pair for day and night.
Don't Make Me Feel Bad For Cancelling Or Leaving Early.
I already feel bad enough about it.
I Never Know How I Will Feel Tomorrow.
I can go to bed feeling OK and wake up feeling like I've done 10 rounds in a boxing ring, I hate it.
Yes, I Slept For 12 Hours, Yes I Still Feel Fatigued.
It annoyed me as much as you, WHY DOES THIS HAPPEN TO ME!!
I Can Be Quiet When I'm Having A Flare.
But please do check on me, I may be a while answering, or just grunt back at you, but it means the world.
Bright Lights, Loud Noises, Overly Powerful Scents Can All Set Me Off.
They overload my senses. For instance, the reverberations from loud noises can make me panic and feel ill.
Yes My Face Is Swollen.
As are my hands, wrists, legs, ankles, basically most places.
There is Never a Pain-Free Day.
A “good” day means I can deal with the pain better.
Yes, I was too Hot and Yes Now I am too Cold.
My body can't regulate its temperature properly I go one way and keep on going till I bounce back the other.
Other Fibromyalgia suffers say:
Don't touch me! The amount of times colleagues pat me on the back or nudge me playfully as they walk past is unreal. What might be a playful tap to them feels like a sledgehammer, or knife to me. So no I'm not overreacting, just don't touch me!
“Oh what have you done to yourself?” When I'm using my stick! I haven't DONE anything, even if I had it would be nunyabusiness!
– Amanda-Jaied Love and OAS
I'm not too young to have pain,
Its real, and it doesn't come and go I have it ALL the time! (based on the fact someone once said to me “but you don't have fibro all the time” LOL.
It's not fun not being able to live a normal life, but it's my life and let me live it the way I see fit!
– Rebecca Once Upon a Fibro Time
As much as I appreciate people wanting to help it really isn't as helpful as you think to tell me that your husband's sister's Mum is totally cured by… (insert random diet, health fad or bizarre exercise regime) and hearing that you know someone with fibro so mild that they live a totally normal life is lovely, for them, but sadly isn't my reality.
– Laura Petit Moi – Big World
That losing weight or thinking positively is not a solution….whilst losing 10 stone did improve my fibromyalgia a bit it did not get rid of it completely and no amount of counselling has made it go away and it never will!
– Jen Just Average Jen
So there are a few things I and others want you to know about having Fibromyalgia, did anything on the list surprise you?
What people with Fibromyalgia want you to know: Click To Tweet