Me with fibromyalgia
This explains me almost to a day on a daily basis.
One to show the non believer`s
June 5, 2011 at 3:49am
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 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.
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.
written by
Sharon Harding. (shazq)
One to show the non believer`s
June 5, 2011 at 3:49am
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 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.
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.
written by
Sharon Harding. (shazq)
Replies
Nice article describing the syndrome. Thank you for sharing.
Sending love and compassion,
Leda
P.S. Still praying for you.
I always appreciate being educated and there is still so much for me to learn. Thank you for sharing.
The one thing that I do know is that none of us are defined by our losses or by our illnesses. We are SO much more than that and to try to embrace this when everything feels topsy turvy and hurts is a work in progress.
Heartfelt (((hugs)))
XO Joanie
Well said, written. No one can imagine what we. go through. I\'ve been ill for over 30 years and have found that getting good, restorative, deep sleep to be a big part of my treatment. I take Xyrem, (sodium oxybate) off label. My neurologist prescribes it for me and it\'s. made in a CA laboratory that mails it to me. No side effects.
I couldn\'t bear not being able to turn my brain off, and suffered from an overdose before I began sleeping again. Ask your Drs., maybe somebody has heard of this and can help you.....it\'s expensive, and you will need your insurance to cooperate.
With restorative sleep I can live a little life. Migraines disappeared and I do get around more. Take classes and Pilates. Right now I\'m taking PT for a pulled muscle. Hoping you can find this sleeping potion, and sleep better, too. Love, Abby
Abby I am putting that into my notes for my next visit with my primary. What has been helping me to get some sleep is guided meditation, I like Jody Whitely. I never get to the meditation itself as her voice is very drone and with the breathing and relaxing that is all it takes. I still only get 5 hours on a rare night 6 though.
Leda and Joanie I just had to share this as I know there are other moms here that suffer from chronic intractable pain, in fact the loss we all have suffered could very well be what triggered the pain to start. I know I have PTSD because of losing Jerred and that helped to trigger the fibro. I am happy to hear you both liked it.
Gentle Hugs and Blessings and Love to all of you,
Susie