Chronic Lyme Disease Summit 2

Claudia Craig Marek's letter Understanding Fibromyalgia

Claudia Craig Marek wrote this letter. She
publishes it in her book, "Fibromyalgia, The
First Year" and offers readers to adopt it as
their own or just use it for inspiration.
Please note that it is written to a "significant
other" more than to another family member or friend,
but you could certainly change and adapt it to fit
your situation:
****************
Fibromyalgia isn't all in my head, and it isn't
contagious. It doesn't turn into anything serious
and nobody ever died from fibromyalgia though they
might have wished they could on really awful days.
I can't control how often I feel good or how often
I feel terrible. If you want to read articles about
fibromyalgia I can show you some that I think are good.
If you just want to learn as we go along, that's fine too.
This is definitely going to be a process. The first step
is for you to believe that there is an illness called
fibromyalgia and that I have it. This may sound simple,
but when you hear about some of the symptoms I don't want
you to think I'm making this up.

Fibromyalgia is a high maintenance condition with lots
and lots of different kinds of symptoms. There's no
way to just take a pill to make it go away, even for
a little while. Sometimes a certain medication can
make some of my symptoms more bearable. That's about
the best I can hope for. Sometimes I can take a lot
of medication and still not feel any better. That's
just the way it goes.

There's no cure for fibromyalgia, it won't go away.
If I am functioning normally, I am having a good day.
This doesn't mean I'm getting better, because I suffer
from chronic pain and fatigue for which there is no cure.
I can have good days, weeks, or even months. But a good
morning can suddenly turn into a terrible afternoon.
I get a feeling like someone has pulled out a plug and
all my energy has run out of my body. I may get more
irritable before these flares, and suddenly get more
sensitive to noise, or just collapse from deadening fatigue.
Other times there may be no warning, I may just suddenly feel
awful. I can't warn you when this is likely to happen, because
there isn't any way for me to know. Sometimes this is a real
spoiler, and I'm sorry.

Fibromyalgics have a different kind of pain that is hard to treat.
It is not caused by inflammation like any injury. It is not a
constant ache in one place like a broken bone. It moves around
my body daily and hourly and changes in severity and type.
Sometimes it is dull and sometimes it is cramping or prickly.
Sometimes it's jabbing and excruciating. If Eskimos have a
hundred words for snow, fibromyalgics should have them for
pain. Sometimes I just hurt all over.

Besides pain we have muscle stiffness, which is worse in the
mornings. Sometimes when I get up out of a chair I feel
like I'm ninety years old. I may ask you to pull me up.
I'm creaky and I'm clutzy. I trip over things no one can
see, and I bump into the person I'm walking with and I drop
things and spill things because my fingers are stiff or
my coordination is off. I just don't seem to connect the
way I should. Hand-eye, foot-eye coordination; it's all off.
I walk slowly up and down stairs because I'm stiff and
I'm afraid I might fall.

Because I feel badly most of the time I am always pushing myself,
and sometimes I push myself too hard. When I do this, I pay the
price. Sometimes I can summon the strength to do something special,
but I will usually have to rest for a few days afterwards because
my body can only make so much energy. I pay a big price for overdoing
it, but sometimes I have to. I know it's hard for you to understand
why I can do one thing and not another. It's important for you to
believe me, and trust me about this. My limitations, like my pain
and my other symptoms, are invisible but they are there.

Another symptom I have is problems with memory and concentration,
which is called fibrofot. Short-term memory is the worst! I am
constantly looking for things I have no idea where I put, I walk
into rooms and have no idea why. Casualties are my keys, which
are always lost, my list of errands, which I write up and leave
on the counter when I go out. Even if I put notes around to
remind myself of important things I'm still liable to forget them.
Don't worry, this is normal for fibromyalgics - most of us are
frightened that we are getting Alzheimer's.

I mentioned my sensitivities earlier and I need to talk about them
again. It's more like an intolerance - to everything. To noise,
especially certain sounds like the television or shrill noises.
To bright lights, to fluorescent lights. To smells like fish or
some chemicals, or fragrance or perfume. I also have a problem
with heat and with cold. It sounds like I'm never happy but that
isn't it. These things make me phyisically ill. They stress me
out and make my pain worse, and I get exhausted. Sometimes I just
need to get away from something, I just don't know how to say it.
I know that sometimes this means I will have to go outside, or out
to the car, or home to sit alone, and that's really all right.
Sometimes when I feel lousy I just want to be by myself. When
I'm like this there's nothing you can do to make me feel better,
so it's just best to let me be.

I have problems sleeping. Sometimes I get really restless and
wake up and can't get back to sleep. Other times I fall into
bed and sleep for fourteen hours. I'm sure that's confusing
to be around, and I know there are times when my tossing and
turning and getting up and down to go to the bathroom disturbs
you. We can talk about solutions to this.

All these symptoms and the chemicals in my brain can make me
depressed, as you'd imagine. I get angry and frustrated and
I have mood swings. Sometimes I know I'm being unreasonable
but I can't admit it. Sometimes I just want to pull the covers
over my head and stay in bed. These emotions are all very strong
and powerful. I know this is a very hard thing about being with me.
Every time you put up with me when I'm in one of my moods, secretly
I'm so grateful. I can't always admit it at the time, but I'm
admitting it now.

I have other symptoms like irritable bowel and pelvic pain
that will take their toll on our physical intimacies. Some
of these symptoms are embarrassing and hard to talk about but
I promise to try. I hope that you will have the patience to
see me through these things. It is very hard for me too because
I love you and I want to be with you, and it makes everything
worse when you are upset and tired of dealing with all my problems.
I have made a promise to myself and now I am making it to you.
I will set aside time for us to be close. During that time we
will not talk about my illness. We both need time to get away
from its demands. Though I may not show it always I love you
a million times more for standing by me. Having to slow down
physically and having to get rid of unnecessary stresses will
make our relationship stronger.

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