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Things People with Fibromyalgia Want you to Know

Things People with Fibromyalgia Want you to Know

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.

Fibromyalgia Awareness sign with illustrations and text

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.

Diagnosis Fibromyalgia - with a pair of glasses

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!
and
“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

Tablet with the diagnosis Fibromyalgia on the display

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? 


This is a collaborative post.

 

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Pinnable Image - With picture of the pain points on a person with fibro

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sandy lynn ralph

Thursday 25th of July 2019

mt eldest daughter has fibro so i can relate to this big time, shes been unable to get out of bed for the last few days with a bad flare up , and this heat doesnt help

Sarah-Louise Bailey

Thursday 25th of July 2019

Oh bless her - I hope things get better for her soon, I'm really struggling with this weather as well I have to admit.

Katie Harmer

Monday 11th of March 2019

I too have Fibromyalgia, Lupus and Antiphospholipid syndrome which basically makes it ramp up my symptoms a thousand fold. I hear you and everyone else, I know it and I feel it. My love is sent with gentle hugs and much healing energy. I have no hints or tips, I just take each day as it comes. I have just spent two days asleep which happens a lot. The fatigue is as debilitating as the pain. There are no answers, but I keep hoping one day there will be xxx

Sarah-Louise Bailey

Monday 11th of March 2019

Sending you gentle hugs back. Thank you so much for your comment, I'm going through a pretty rough patch at the moment (lots more tests) and it just made me smile, not that your going through the same, but that someone understands xxx

Nigel Soper

Sunday 6th of May 2018

Thank you so much. I am intrigued that you suffer, like me, from Dyslexia as well as Fibromyalgia - do you think there is a connection? The medical folk here in the UK often treat me as having 4 or 5 independent base problems (not that dyslexia is a medical problem, in fact I believe it is a blessing in many ways} but I don't think it's credible they are not interrelated somehow. There are a lot of clinical reports that link Fibromyalgia with severe sleep Apnoea, that I have, and there is a known link between poor sleep and low mood, Although we have a predisposition towards Osteo Arthritis in our family, my OA actually started in my knees whilst cycling and running to try to loose weight as I was being hassled by the sleep apnoea clinic (and my wife!). Do you think there might be a relationship between Dyslexia and Fibromyalgia? (for me there were 50 years or so between showing signs of Dyslexia and first signs of Fibromyalgia)

Sarah-Louise Bailey

Sunday 6th of May 2018

I'm not sure to be honest I've never thought about there being a link between the two. I know Fibro may run my family, I know my birth mother and she has recently been diagnosed with it as well. I think mine might be linked to trauma as well which then set it off. I'm trying to get set back to a rheumatologist at the moment but it is a hard old slog.

Elizabeth Auwarter

Sunday 22nd of April 2018

I absolutely agree! That is exactly what I want to tell my coworkers. One of my students patted me on the arm recently, and I instinctively pulled away. She was so confused, so I had to explain to her. I gave her the short version, "I don't like people touching me." That was so hard for me to say because, really, I love hugs, I love pats on the back, but, randomly, they will hurt. I can't predict it. I can't stop it.

Sarah-Louise Bailey

Sunday 22nd of April 2018

It is horrid isn't it - I remember before I was diagnosed being so confused about how the smallest touch in the wrong place could hurt so much.

Susan Pearson

Friday 20th of April 2018

You nailed it. I think slowly more, and more people are starting to hear about Fibromyalgia and trying to understand it. I can understand the lack of knowledge though. When I first began having the symptoms, before even the official diagnosis, there was only one person I knew who had even heard of it. I'll be honest if I did not live with the condition I would struggle to understand it too! x

Sarah-Louise Bailey

Saturday 21st of April 2018

It is hard isn't it - I couldn't imagine it if I didn't have it - but I think it's similar with a lot of issues.

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