how do you explain what fibromyalgia ... - Fibromyalgia Acti...
how do you explain what fibromyalgia is to people?
Its the hardest thing to explain and even when Ive tried explaining I meet with some funny looks as Im so often told how well I look.No one knows only a sufferer knows what its like everyday living with pain,Tiredness and sometimes Depression not to mention the sleepless nights,I just tell them how it is Amanda..though I know sometimes people dont believe me.and yet people will accept M.E which is the sister to Fm ? Hope your day is good to you.
Warm hugs Myra aka ( Gandalf )
to explain what it is well it having persistent pain in one or more of fourteen different points on your body. Being exhausted to the point that you just have to give up and go to bed. Then there is the FOG your brain seems to be stupefied and unreliable the sleeplessness . I am no good at explaining but find Spoons it will help x gins
yep its hard, as it has so many faces, but google the spoons theory, best way to describe it to someone and yourself
xx
thanks everyone x
datingdramas.wordpress.com/...
read through and it really does make sense AND is easy to understand
Take care
Jan xx
Says it all doesn't it. There is a similar one on the fibroduck website (somebody posted a link a few days ago). I have learnt so much since joining this site, I was diagnosed during the latter part of my divorce but had been ill for years. We had been 20+ years I often think if I had known all this before things got bad and could have explained with the aid of prose like these we might still be together. Other times I am relieved to be on my own as I take each day as it comes with only myself to look after and worry about x
Hi lynnh,
yes it does say it all, in an easily understandable way. i'm also on fibroduck.lol. I was diagnosed about 2 years ago and my doc thinks it's linked to an overactive thyroid that virtually attacked all my body, swiftly followed by glandular fever and post viral fatigue. The legacy left by that...well thanks then!!!
I'k just glad i'm not with the ex now, was worried for my life then, would have been dead by now if i'd have stayed.
It was so worrying not knowing what was wrong, i hid a lot as my daughter wanted to go on a student visa to Canada for a year and i didn't want to stop her. I told her when i got diagnosed and it was straight on the internet..as kids do lol, thankfully i've got a wonderful loving caring partner whom i can talk to and explain what's going on if i'm really bad. It is difficult for others to understand as they've never been through it, i always say try explaining childbirth to someone whose never had children...
Know what you mean about only having to look after yourself though. i hope you manage ok.
Take care
Jan xx
Hi Amanda - I've tried using the 'spoons' method of explanation and it certainly seems to help. I've described the pain as a feeling that all of my tissues and muscles are stretched to the limit over a skeleton that is just too big for them.
Agony is the way to describe it. Sure people just think i am soft really.it is constant agony
I would describe having Fibromyalgia as widespread pain all over my body, the worst exhaustion I could possibly imagine, memory loss, constant foggy head, messed up emotions, perspective changes, no sleep, so many things!
I showed my family The Spoon Theory and they really understood how I felt with Fibro and how it affected me. Here's the link to it -
butyoudontlooksick.com/navi...
I would also mention the burning red hot shooting pains and aching all over. I don't think people will ever understand just how much Fibromyalgia hurts constantly.
My nearest and dearest understand how I feel, so everyone else can really think what they like. I said to one girl "hold a heavy object at arms length till you cant hold it anymore, thats how my body feels all over, all the time".
Hi silver,
my thoughts exactly, as long as the ones that matter understand, or at least try to, then the rest can whistle dixie as it were.
I've never been on to care about what other people think, they've got two choices and can do as they like.
I know how i feel and how best to deal with it,,,or not as the case may be.
Take care
Jan xx
I usually tell people to think about every fibrous part of their body including their eyes and then imagine all of it hurting and add to that being senile and not beining able to remember how to sign your own name some days and your half way there. Usually gives someone a fair assessment of how I feel 9 out of 10 days.
life changing nightmare is what it should be described as lol tc soma xx
Before I was stricken with FMS, I was a healthy MMA cage fighter so the way I explain it to they guys I used to train with was to imagine the fight when they had their worse kicking and how they felt the day after, then they were half way there.....
That's a brilliant description Mark. I personally have never had a cage fight but my goodness if I had, I am sure it would feel like Fibro!
I don't think any of us could have possibly imagined the effects of Fibromyalgia on our lives.
On my best days it's like having toothache strength pain in one or two places; on my worst days it's like having multiple toothache strength pains all over my body.
AND to add insult to injury a couple of bits of an already broken tooth came away today, heigh ho
Julie xx
How do people cope?
How do you explain to 'normals' who care enough to ask you to describe your pain?
Do you really have "Fibromyalgia"?
What do you do ??
