I wanted to share this with the people who have Fibro as well as RA. I know this is an RA board, but Fibro so often goes hand in hand, but no one really knows how to tell the two apart.
Not only does this "letter" show people outside of our world how we feel, but when you read it yourself, you can start to see the difference in Fibro and RA, and it may actually help you figure out if it's an "RA day" or a "Fibro day"
Anyway, I didn't write it, I found it on fibrotalk.com. I debated posting it, but I do remember sooo many people on here who have it, so I thought.......what the hell. So here it is. lol
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A LETTER TO THE HEALTHY WORLD FROM THE LAND OF CHRONIC PAIN AND FATIGUE
by Avalon 103
If you were born with healthy genes, you may know me but you don't
understand me. I was not as lucky as you. I inherited the
predisposition to chronic pain, fatigue and forgetfulness. 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, a malingerer, or simply ridiculous.
If you have the time to read on, I would like to help you understand
how different I am from you.
WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA.
# 1. FMS is not the newest fad disease. In fact, it isn't a disease
at all, and it isn't even new. In 1815, a surgeon at the University of
Edenburgh, William Balfour, described fibromyalgia. Over the years, it
has been 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.
# 2. The many physical and emotional problems associated with FMS
are not psychological in origin. This is not an "all in your head"
disorder. In 1987, the American Medical Association recognized FMS as a
true physical illness and major cause of disability.
# 3. Syndromes strike life-long athletes as viciously as they do
couch potatoes. They can be disabling and depressing, interfering with
even the simplest activities of daily life.
WHAT YOU SHOULD KNOW ABOUT ME.
# 1. My pain - My pain is not your pain. It is not caused by
inflammation. Taking your arthritis medication will not help me. I can
not work my pain out or shake it off. It is not even a pain that stays
put. Today it is in my shoulder, but tomorrow it may be in my foot or
gone. 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.
# 2. 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. If you saw me shopping
in the mall yesterday, but I can't help you with yard work today, it
isn't because I don't want to. I am, most likely, paying the price for
stressing my muscles beyond their capability.
# 3. 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.
# 4. My clumsiness - If I step on your toes or run into you five
times in a crowd, I am not purposely targeting you. I do not have the
muscle control for that. If you are behind me on the stairs, please be
patient. These days, I take life and stairwells one step at a time.
# 5. 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 drapes or listen to your child scream. I really can't
stand it.
# 6. 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.
# 7. My depression - Yes, there are days when I would rather stay
in bed or in the house or die. I have lost count of how many of Dr.
Kevorkian's patients suffered from FMS as well as other related
illnesses. Severe, unrelenting pain can cause depression. Your sincere
concern and understanding can pull me back from the brink. Your snide
remarks can tip me over the edge.
# 8. 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.
# 9. 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 appestat is broken, and
nobody can tell me how to fix it.
# 10. My need for therapy - If I get a massage every week, don't
envy me. My massage is not your massage. Consider how a massage would
feel if that charley horse you had in your leg last week was all over
your body. Massaging it out was very painful, but it had to be done. My
body is knot-filled. If I can stand the pain, regular massage can help,
at least temporarily.
# 11. 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 or even
months. In fact, the good days are what keep me going.
# 12. My uniqueness - Even those who suffer from FMS are not alike.
That means I may not have all of the problems mentioned above. I do
have pain above and below the waist and on both sides of my body which
has lasted for a very long time. 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. I hope that this helps you understand me, but if you still
doubt my pain, your local bookstore, library and the internet have many
good books and articles on fibromyalgia.
Author's note: This letter
is based on communications with people throughout the world, males and
females, who suffer from fibromyalgia. It does not represent any one of
the over 10,000,000 people with FMS, but it can help the healthy person
understand how devastating this illness can be. Please do not take
these people and their pain lightly. You wouldn't want to spend even a
day in their shoes... or their bodies.
Thank you Katie. Glad to see something that explains it so well.