I read this post some months ago but had forgotten about it until this week. It’s taken from the FMA UK Website Forums and is very poignant and descriptive. I wanted to share it for anyone who has been struggling to describe this condition to friends, family or work colleagues, or for those who may know someone with the condition, it is quite long, but please bare with it and, of course, take from it what you will. Thanks to ShazQ for sharing it at FMA with us.
My pain- is not caused by inflammation.
I can not work with my pain, it`s not because i don’t want to
It`s because i don’t know where my pain will be i.e;Today it is in
my shoulder, but tomorrow it may be in my legs or even in my arms/hands.
Sometimes i feel as if it`s my whole body.
My pain is believed to be caused by improper signals sent to the brain,
possibly due to sleep disorders. It is not well understood, but it is real.
My fatigue – I am not merely tired. I am often in a severe state of
exhaustion. I may want to participate in physical activities, but I can’t.
Please do not take this personally,
it isn’t because I don’t want to. I am, most likely, paying the price for stressing
my muscles beyond their capability.
My forgetfulness – Those of us who suffer from it call it fibrofog. I may
not remember your name, but I do remember you. I may not remember what I
promised to do for you, even though you told me just seconds ago. My problem
has nothing to do with my age but may be related to sleep deprivation. I do
not have a selective memory. On some days, I just don’t have any short-term
memory at all.
My sensitivities – I just can’t stand it! “It” could be any number of
things: bright sunlight, loud or high-pitched noises, odors. FMS has been
called the “aggravating everything disorder.” So don’t make me open the
curtains or listen to your child scream. I really can’t stand it.
this gets very frustrating, noises that have never bothered me before
My intolerance – I can’t stand heat, either. Or humidity. If I am a man,
I sweat…profusely. If I am a lady, I perspire. Both are equally
embarrassing, so please don’t feel compelled to point this shortcoming out
to me. I know. And don’t be surprised if I shake uncontrollably when it’s
cold. I don’t tolerate cold, either. My internal thermostat is broken, and
nobody knows how to fix it.
My depression – Yes, there are days when I would rather stay in bed
or in the house or even want to die.pain can cause depression.
Your sincere concern and understanding can pull me back from the brink,
yet snide remarks can tip me over the edge.
I will improve, i don’t know when, it might be something little that
will bring me out of it. Its not your fault and its not mine.
My sleepless nights – Don’t be put of by the looks of me in the morning, i might look
like a zombie, this is because i have not had much sleep, my brain wont
switch off, i have 100 and 1 things going around and around in my head,
none of it makes since, i used to sleep 8 hours a night, now i am lucky if
i sleep for 2 hours at a time.
Sleepy days- Some days i feel so tired, my body weights a ton, my whole
body aches, i have no energy, even though i have been in bed all night i
am going to have to go back to bed again, please understand how i feel,
i don’t want to live my life in bed, it is not my choice, the choice has been
taken away from me.
My stress – My body does not handle stress well. If I have to give up my
job, work part time, or handle my responsibilities from home, I’m not lazy.
Everyday stresses make my symptoms worse and can incapacitate me completely.
My hands go numb and i drop things, i don’t seem to know how to control my
own body, this is not a good feeling.
My weight – I may be fat or I may be skinny. Either way, it is not by
choice. My body is not your body. My appetite is broken, and nobody can tell
me how to fix it, if only there could be that magic pill. I don’t like my body
like this and i cant help the fact that i crave food all the time, i try my best
but my best is not always good enough.
My good days – If you see me smiling and functioning normally, don’t
assume I am well. I suffer from a chronic pain and fatigue illness with no
cure. I can have my good days or weeks. In fact, the good
days are what keep me going.I try to do what i can as i never know when
the next flare will return.
My medication- I have had to try many different medications, i seem to be
very sensitive, not sure why. Please bare with me if i seem ratty the meds
cause all types of symptoms, ie: sickness, headaches, drowsy, legs/arm pains.
Some meds can take up to 4 weeks to kick in but it only takes a few days
for the side effects to kick in.
Cravings- Please don’t think i am being greedy, its not my fault its the side
effects of my meds. I try to resist but sometimes it gives me pleasure to
eat that chocolate bar in the fridge, i try to have more control over the
cravings and to eat healthy snacks but you always see me with the chocolate
Clumsy- I know there are days when you think i am clumsy, i really don’t
mean to be, i know i drop things but it does not give me pleasure doing it,
My hands don’t want to grip things, all the strength has gone, wish i knew where.
My legs feel like they have been set in concrete and i have to drag my legs.
Lunch- Peeling veg is getting impossible as i cant grip the knife, this might seem
a small thing to you but its a big thing to me. I want to prepare the
dinner for you all, i am not getting out of it, its the pain stopping me.
I might blame the onion for the tears running down my face but i don’t
like to keep showing you my weaknesses, i feel useless.
This heat- is killing me, i cant cope with it, i know i used to be a sun
worshiper but now my thermostat is broke i cant control my temperature.
Dont keep telling me to wipe the sweat from my face, i know its there
do you think i like people looking at me.
the fatigue is so bad all i want to do is sleep but it`s so hot so i need the fan
on me all night, sorry if this bugs you, i dont do it to annoy you.
This cold weather- is really getting to me, i cant seem to get warm
my bones really hurt today, that might sound strange to you, but its
real to me. My fingers and toes hurt with pins and needles, oh why
is all this happening to me.
IBS-bloats me and makes me feel sick,no 2 days are the same one day
i might be constipated and in bad pain but the next i might be on the
loo 5 times. I cant help that i have had to change my eating habits,i
have to learn what is best for my stomach to handle.
Even those who suffer from FMS are not alike.
I may have migraines or hip pain or shoulder pain or knee pain,
but I do not have exactly the same pain as anyone else, we all
have different pain levels. A lot of the same symptoms yes
but also some different.
Anyone who is struggling with this, please visit http://www.ukfibromyalgia.com/forums/index.php if you haven’t already.