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.
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!
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
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?
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Oh my gosh! For me, it was Lyme (although I was initially misdiagnosed as having Fibro) but I can relate to this all SO much! I lost so many friends when I got sick as some took it personally when I wasn’t well enough to do things with them, and other’s thought a few harsh words would ‘snap me out of it’. Even my GP looked me in the eye once and snapped ‘your life is pointless!’..which hurt me more than anything. There seems to be such a widespread lack of understanding and compassion for those who are suffering from chronic illnesses. I hope with more awareness and wonderful posts like this though, that will eventually change <3 xxx
Oh gosh that is awful of your doctor to say that! Mine has told me to exercise more, hey if only lol.
i love this post and i will be sharing on my business fb page later xx
Thank you so much, that is so kind of you.
I would just like to say if you have a friend with fibro don’t forget him/her , fibromyalgia is a lonley illness,it makes you feel isolated and it’s awfull
This is so true – it really can leave you feeling alone as you just never know when your be OK to do anything.
I can’t imagine the body pain you were going through it wasn’t pleasant at all. I’m in mid 30’s ones in a while I experience back and leg pain.
I don’t really remember anything different these days, I just look forward to the days when it isn’t quite so bad.
This is extremely informative, I don’t personally know anyone but this is great in the future. Thank you so much for sharing all of this information.
This must be such a hard condition to live with and I’ve learnt a lot about the conduit from your post. I’m the same as I have type 1 diabetes. So many people misunderstand that x
It is sad that so many things are still misunderstood though there is a wealth of knowledge out there.
This is such a misunderstood condition so thank you for sharing this information!
Thank you for sharing this post. A lot of people are not aware of what a person with fibromyalgia goes through every single day. It is a horrible experience to be in constant pain.
I have a friend who has this and I never knew that it was so horrible. I think she puts on a brave face. I can’t imagine dealing with this.
I think most us do it’s easier that way sometimes than to try and explain.
Thank you for your honest and heartfelt article. I do not know anyone with fibromyalgia right now, but this is making me feel more prepared for helping support any friend with an illness.
Can relate so much to touching hurting skin as well as wanting to just wear pj’s for comfort. I have to be very careful when buying new bedclothes as this is something which can cause me a great deal of discomfort.
It is crazy how much things can hurt you isn’t it. 🙁
hubby has this crippling disease ,it diesnt just turn the person who has it upside down but the family too
It affects everyone in the family as it is hard to plan ahead. Sufferers have to just take each day as it comes and this takes its toll on family life.
It really does affect everyone doesn’t it – it so evil 🙁
This is a great, informative article. I had never heard of this until I met someone last year who suffered with it for many years, but no longer does.
Have never heard of anyone recovering from fibromyalgia before. Were there any significant factors contributing to this?
I have to admit I’ve never heard of anyone getting over it, normally it either stays as it is or gets progressively worse. How did they get better I’d love to hear more.
I am getting tested for fibro soon, I have had a lot of the symptoms, I hope you can find some comfort and this is some great advice, especially for people who don’t know what fibromyalgia sufferers go through.
Good luck with your testing it is a hard and long process, but I found it good to know what was wrong in the end.
Ugh. I sometimes feel as though I have mild symptoms of fibromyalgia – but then I remind myself I actually have a whole host of OTHER health conditions and the symptoms just overlap! My heart goes out to you though because just like my complications – there is no real CURE – just pure strength and willpower!
Sending you big hugs – there are so many symptoms that overlap between illnesses and I feel for anyone who has to suffer anything health wise 🙁 x
I had a co-worker with fibromyalgia and there were days she couldn’t get out of bed due to her pain. She really gave a lot of us a deeper insight into the disease and the pain associated with it. Sharing your post with a few of my friends so they too will have a better understanding.
Thank you for looking to understand it with her, so many people just don’t even try. x
I must admit I did not know much about Fibromyalgia so this post was very informational for me and I have actually learnt something today.
I am glad it has helped you learn a little more about fibro.
I have a friend with fibromyalgia and I feel so bad for her. It’s really a painful thing to have. I’m going to send her your link so she can see she’s not the only one that spends a lot of time in her jammies.
Yes please do she is most definitely not alone 🙂 x
I really don’t know that much about it, so thank you for explaining it a little more. A good friend of mine has recently been diagnosed, so this is a very timely post for me. I hope they find something to cure it one day soon, it must be so hard for you. x
I am glad it came at a good time for you, I do hope they work out something that will help it one day.
Interesting reads. I am still learning about fibromyalgia. I appreciate this inside look to help me better understand the disease.
This is a disease that most people don’t understand. Not something people can see. Have a friend who has this and it is one day at a time.
I think so many people find it hard to understand anything they can’t see.
I know a few people that have fibromyalgia. I think many people don’t understand illnesses they can’t see and are therefore skeptical about them.
I totally agree and I think it is such a shame 🙁 after all we can’t see most illnesses.
I think people are skeptical about Fibromyalgia, even doctors.
I will keep this in mind for sure. I’m not sure if anyone I know has fibromyalgia, but if they did, I’d certainly be understanding about it.
I had heard of fibromyalgia, but I didn’t really know what it was. It sounds like a pretty crappy disease 🙁
It really is – Lady Gaga has just come and said she has it, so I think it will be in the news a lot for a while.
I don’t have Fibro (I don’t think) but this made an interesting read and some of my symptoms are explained above.
It’s made me consider this as something to mention when I get to the hospital and would explain a hell of a lot.
Fiona xx
Always worth saying about, it is one of those issues that is hard to diagnose, it’s more a process of elimination.
So many prople mis understand this
It can be so crippling and lead to social isolation
Great post to spread awareness
It really is so misunderstood, it is a shame.