Explaining Fibro Fog and Fatigue

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Explaining Fibro Fog and Fatigue

Postby lala » Sun Mar 16, 2014 8:01 pm

Hi could someone please give me some pointers to help me explain the fatigue of FM to my partner and family.
Also how to explain fibro fog and that when they are talking to me, even when I try my hardest, I just glaze over and don't hear what they are saying, or cant remember what the topic was.....how have other people explained it to their family? Thank you.
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Re: Explaining Fibro Fog and Fatigue

Postby Katie Louise » Sun Mar 16, 2014 8:06 pm

Hi this is something I struggled with I found a post on here called to all the non believer's I also have a poem up at work call look at me which is very powerful if I can I'll find the link for you x

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Re: Explaining Fibro Fog and Fatigue

Postby Katie Louise » Sun Mar 16, 2014 8:11 pm

Just found the post I was talking about there is also a thread on the site for family and friends I got my husband to look at what other sufferers had written to give him some idea of what I was dealing with.

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.
Written by Shazq.


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Last edited by FluppyPuffy on Tue Mar 18, 2014 10:03 am, edited 1 time in total.
Reason: Tidied up for easier reading.
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Re: Explaining Fibro Fog and Fatigue

Postby lala » Sun Mar 16, 2014 8:21 pm

Wow! Thank you so much for sharing that, it has made me very emotional, I have had fibro six years and I think deep down I didn't want to admit how bad it gets, I always feel lazy if I cant do something, but I physically cant do things, its so frustrating. Im going to copy this, if that's ok and give it a few tweaks and give a copy to each of my family. Thank you very much for your words....amazing x
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Re: Explaining Fibro Fog and Fatigue

Postby eeyorejd » Sun Mar 16, 2014 8:35 pm

Hi lala
I was once asked to explain it to a Mom who young daughter had the condition
Here's what I told her
Imagine walking around day and night with bags of sugar strapped to your arms and legs think about how heavy your arms and legs would feel and how they would ache and feel like your dragging them around.
If you did that day in day out the pressure wares your limbs out and your tired all the time because you don't get any rest.
Some days the bags might only be half full so you can do a little bit more than if the bags were full.
Living with this aching is very hard as there is no let up.
With the fibromyalgia fog it's like writing a list about making a list and still forgetting to pick up the list.
You can open the post but within an hour forget what came.
My husband spoke to my OT which really help him understand.
Hope this is of some help x
Last edited by eeyorejd on Mon Mar 17, 2014 6:49 am, edited 1 time in total.
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Re: Explaining Fibro Fog and Fatigue

Postby FluppyPuffy » Sun Mar 16, 2014 8:42 pm

One To Show The Non Believers was originally posted by Shazq. Altho she hasn't been on here with us for a good while, whenever anyone has wanted to copy and share this, all that she has asked is that there is an acknowledgement as to where it came from and who has written this as there have been a few who have tried to claim it as their work over the years.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: Explaining Fibro Fog and Fatigue

Postby denys » Mon Mar 17, 2014 12:03 am

the above mentioned post seems to explain things in a way most people can understand, Shazq is very talented and missed as part of the moderator team and we hope to see her back with us soon :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed:
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Re: Explaining Fibro Fog and Fatigue

Postby lala » Mon Mar 17, 2014 12:39 am

Thank you so much everyone, you have really helped me, I have just read it to my partner and ive sent a copy to my parents of all the things you have said.
Brilliant, thanks again

Lala
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Re: Explaining Fibro Fog and Fatigue

Postby Lindilou » Mon Mar 17, 2014 9:40 am

FluppyPuffy wrote:One To Show The Non Believers was originally posted by Shazq. Altho she hasn't been on here with us for a good while, whenever anyone has wanted to copy and share this, all that she has asked is that there is an acknowledgement as to where it came from and who has written this as there have been a few who have tried to claim it as their work over the years.


I cant find the post Shazq made of this poem "One to Show The Non believers", I would love to read it, can anyone help?
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Re: Explaining Fibro Fog and Fatigue

Postby FluppyPuffy » Mon Mar 17, 2014 9:52 am

The linky I posted should take you to it. If it doesn't go to the first page of the topic, just clicky page 1 and it will be there.

Every once in a while, a dog enters your life and changes everything xx
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: Explaining Fibro Fog and Fatigue

Postby Lindilou » Mon Mar 17, 2014 10:11 am

FluppyPuffy wrote:The linky I posted should take you to it. If it doesn't go to the first page of the topic, just clicky page 1 and it will be there.

Every once in a while, a dog enters your life and changes everything xx


No luck I'm afraid :(
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Re: Explaining Fibro Fog and Fatigue

Postby lala » Tue Mar 18, 2014 12:47 am

Its on this post, on the 5th reply.
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Re: Explaining Fibro Fog and Fatigue

Postby lala » Tue Mar 18, 2014 12:59 am

hi, I have read and re read this, it makes things a lot more real for me, every part of it, that before I thought was just me being a hypochondriac are there in black and white for me and everyone I know to see. I just have one question, the person talks about shaking with the cold. Occasionally, if I have maybe pushed myself a little, and I stop, then I feel like I am getting flu, shaking and not being able to get warm despite going to bed with the electric blanket on full for an hour.....but then about 4 hours later I feel ok..........does anyone else suffer with it like that?

Thank you. im so glad I found this site, its such a relief, thank you to everyone who has made me feel really welcome.

Cheers
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Re: Explaining Fibro Fog and Fatigue

Postby denys » Tue Mar 18, 2014 1:11 am

viewtopic.php?f=2&t=4732#p43945 try this one lindilou. Flups link works for me but just in case I've put it up again and if that doesnt work then go to the living with fibromyalgia board and its the 2nd topic down
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Re: Explaining Fibro Fog and Fatigue

Postby Lindilou » Tue Mar 18, 2014 8:42 am

denys wrote:http://www.ukfibromyalgia.com/forums/viewtopic.php?f=2&t=4732#p43945 try this one lindilou. Flups link works for me but just in case I've put it up again and if that doesnt work then go to the living with fibromyalgia board and its the 2nd topic down


That link does take me to that section of the forum but it's just "Re" One To Show The Non Believers". I went through each and every page but the poem itself is not there. Can anyone copy and paste it for me please?
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