One to show none believers's - Thought I would post this as I thought it sums up a lot of people with Fibro

If you were born with healthy genes, you may know me but you don't

understand me, I was diagnosed with fibromyalgia

(FMS) after months, years or even decades of mysterious physical and

emotional problems. Because you didn't know how sick I was, you called me

lazy. I hope by reading this it will give you an understanding into our world.

My life has been turned upside down, i dont really understand it myself,

so i will try my best to explain to you how my body has changed and how

some things that have never affected me before do now.

Below is just a very short view into part of my/our world.

FMS is not the newest fad disease. In fact, it isn't a disease at all.

it is known as chronic rheumatism, myalgia and fibrositis. Unlike diseases

syndromes do not have a known cause, but they do have a specific set

of signs and symptoms which, unfortunately for the patient, take place together.

Rheumatoid arthritis and lupus are also syndromes.

The many physical and emotional problems associated with FMS are not

psychological in origin. This is not an "all in your head" disorder.

Fibromyalgia is a common condition characterized by long-term pain and

tender points in joints, muscles, tendons, and other soft tissues.

Fibromyalgia has also been linked to fatigue, morning stiffness, sleep problems,

headaches, numbness in hands and feet, depression the list goes on and on.

I think trauma triggered mine.

My pain- is not caused by inflammation.

I can not work with my pain, it`s not because i dont want to

It`s because i dont 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

do now.

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 dont 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 dont 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 dont 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

bar.

Clumsy- I know there are days when you think i am clumsy, i really dont

mean to be, i know i drop things but it does not give me pleasure doing it,

My hands dont 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 dont

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.

I hope this helps the non believer`s to understand just a little of what we

Go through on a day to day basis.

Hope i have not board you with this long post.

Thanks for reading.

38 Replies

oldestnewest
  • how brilliant is this.... thanks for sharing... xxx

  • your very welcome, I thought the same thing when I seen it. I feel like printing it off and giving it to the benefits people and people who think we are just lazy and we dont want to work. Glad you like it hope it helps people on this site. xx

  • OMG.................. thankyou for your post says it all really, hurrah to you x x x

  • thanks glad to help x

  • BRILLIANT X

  • An accurate description if ever I read one. I'm going to print it off and show it to a few people !

    xx

  • Wow you made me cry ! that was so touching for me as it hits the nail on the head for for how i am now compared to over 2 yrs ago! At just turned 43 and previously so active dancing with the kids and having such a laugh.

    Life has changed dramaticaly, but in previous years things that have happend all add up now that i do my research online to find more out about what i am going through and the same with everyone on here! .

    Cannot say no more because i go round the houses and just talk too much as tired as i am.

    This should be put out there for others to read ;-) WELL DONE you have taken some time to put that all down and explain things ...

    There are plenty more symptoms and things going on but this is reality.

    lots of love and soft gentle huggles

    cazzie xxx

  • and i will re post this and print it as helen says too cannot get over the wording of it honestly lol xxx

  • I love this post :) x

  • great post xxx

  • that is fantastic i am going to save that love to you diddle and you better have a rest now after writing all that xx

  • That is so me, if only people would understand! I've been accused of being fat and lazy for years :( Thank-you so much. Is it ok if I print it and put it on my fridge for all my un-supportive lot to see?

  • of course you can print it out I found this and I thought I would share with like minded people who are going through the same as I am so I am so so happy that you can show people so they can try and understand what we are going through xx

  • This is the perfect description, i could'nt have put it any better myself. Brilliant.xxx

  • In a nut shell. Would love to be able to share with my friend. Tx

  • Again Brilliant I am going to print x

  • This is totally brilliant. It is so difficult to explain to some people what "Fibromyalgia" is. This makes it so much easier. My husband read it and agreed that it was excellent. Thank you for this :)

  • Amazing.. I have just copied and pasted it..I need this accurate description for a lawyer...I would have never been able to describe things so well...

  • Wow! I will be printing this off for friends and family to read. I dont explain how I feel very well so this is perfect. Thank you !

    Sandie xx

  • Dimfunsize, this is fantastic. I think we should all copy it and sent it to our MPs and local newspaper offices. If we had the money, it would make a fantastic tv advert with a different fibromite reading each verse (used to do this type of thing at work so can't help doing this when I see such a good idea! Would you mind if I sent a shortened version to my local newspaper in the letters section?

  • Thank you so much for your kind words. You can do what ever you want with it. The more people who see / hear it the better. It will make people realize what fibro is and hopefully understand too.

  • wow that was so amazing , sums it all up for when people ask me whats wrong with me never have the words to explain til now thank you for sharing xx

  • WOW! Thanks for sharing. This really explains how I feel. I will definitely be sharing this with friends & family.

  • Dear dimfunsize,

    when someone asks us to describe fibro it cant be done "well not by me" i always go blank. so thank you for taking the time and energy to write this master piece on fibro and cfs. sending gentle hug's

    Mary xxx

  • Mary I would love to have taken the credit for this master piece, but also I cant but words together no more. I see this from a friend and I thought I would share it with you all. I can take the credit for posting it I suppose. It made me feel this is me and it is not all in my head. xxx

  • What ever way it got here you posted it, and for that i thank you. because I'm going to steal it as it is the best description of fibro i have ever seen. you posted, that's all that matters. thank you ...

    Mary xx

  • Hit the nail right on the head!!!! brilliant, wish l could have copied this and given it to the Medical Assessor yesterday!!!! they have no idea!!!!

  • Fantastic it sums every thing up :) xx

  • That is fantastic. You have described it in a way I never could. Y ou got the hopelessness we feel and the insanity of this illness perfectly. If that does not give people an insight into how we feel nothing will.

    Hugs xx

  • just wish my partner could understand how it makes me feel everyday. im also 5 months pregnant which just makes it all the more painfull

  • I'm so sorry to hear that, I got better whilst pregnant, hope you do soon before the big day but if you have a sleepy baby like I did (10 years ago) you can bond and sleep together and now we are best buds as well as mother and daughter. P.s. I'm positive because I was so happy and enjoyed all the oddities pregnancy had to offer that my girl turned out so happy and has a knack of putting a smile on anyones face.

    Keep smilling

    xx

    From my daughter, Elle

    Hope all goes well for you, big soft hugs x

  • Wow! So true, shows what a cruel & life robbing condition this really is!

    Thanks for sharing it with us all. I'm sure it may help to change the attitude of some people towards us, & that can only be a good thing!

    Gentle hugs to everyone out there who this affects. xx

  • spot on!!! thankyou xx soft hugs xx

  • This is fantastic, I could never have described it like that. I am going to print out and stick on my wall dowstairs, perhaps some people may actually read it.

    hugs to you

    xx

  • Posted this on facebook, only hope people take the time to read it, thanks for speaking for me through this post as sometimes its hard to keep explaining to people and hearing it from someone else is helping my confidence

    Thx xx

  • and me, it's not before time ppl knew what we go through all the time :)

  • All true,its a pain trying to explain what they cannot see, day after day.You begin to feel like a stuck record,It keeps me going thinking i will have a better day , maybe tommorro.

  • It's Brilliant :-) Thankyou so much for shareing it with us all xxxx :-) Gentle hugs xxxx

You may also like...