Thanks Paul for sharing this.... says it all ...
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 (thought they
might have wished they could on really awful days!!) If you want to read
articles or books 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 my symptoms I don't want
you to think I'm making this all up as I go along.
Bit Long But Thought I Would Share
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. Other times I may take a lot of medication and still won't feel
any better. That's just the way it goes. I can't control how often I
feel good or when I'm going to feel terrible. Lots of people have been
cutting new drugs advertisements out of magazines for me and I
appreciate the thought, but I've seen them too. Look at the list of side
effects and the few symptoms they help in return. Even in the best
studies those expensive compounds didn't help over half the people who
tried them. No matter how happy the people in the pictures look, there's
still no miracle drug available.
There's no cure for
fibromyalgia and it won't go away. If I am functioning normally, I am
having a good day. This doesn't mean I'm getting better -- I suffer from
chronic pain and fatigue for which there is no cure. I can have good
days, several good 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 just run out of my body. I might get
more irritable before these flares, and suddenly get more sensitive to
noise or just collapse from deadening fatigue. Weather changes can have a
big effect on how I feel. 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. The sadness I feel for what my illness does to
those around me is more than I can easily describe. You may remember me
as a light-hearted fun loving person -- and it hurts me that I am no
longer what I was.
Fibromyalgics have a different kind of pain
that is hard to treat. It is not caused by inflammation like an 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 a hundred words for pain. Sometimes I just
hurt all over like I've been beaten up or run over by a truck. Sometimes
I feel too tired to lift up my arm.
Besides pain, I have
muscle stiffness which is worse in the morning and evenings. Sometimes
when I get up out of a chair I feel like I am ninety years old. I may
have to ask you to help me up. I'm creaky and I'm klutzy. I trip over
things no one can see, and I bump into the person I am walking with and I
drop things and spill things because my fingers are stiff and 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. When there's no
railing to hold on to, it's terrifying.
Because I feel bad most
of the time, I am always pushing myself, and sometimes I just 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 real.
Another symptom I have is problems with memory and
concentration which is called fibrofog. Short-term memory is the worst! I
am constantly looking for things. I have no idea where I put down my
purse, and 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 Fibromyalgia. Most of us are frightened that
we are getting Alzheimer's. New kinds of brain scans have actually
documented differences in our brains.
I mentioned my
sensitivities earlier and I need to talk about them again. It's more
like an intolerance to everything. Noise, especially certain noises like
the television or shrill noises can make me jittery and anxious. Smells
like fish or some chemicals, or fragrances or perfume can give me
headaches and nausea. I also have a problem with heat and cold. It
sounds like I'm never happy but that isn't it. These things make me
physically 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 else to say it. I know sometimes this means I will have
to go outside, or out to the car, or go home to sit alone and that's
really all right. I don't want or need you to give up doing what's
important to you. That would only make me feel worse. 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 better 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 and still be tired. Some nights I'll toss and
turn and not be able to sleep at all. Every little thing will keep me
awake. 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 chemical changes in my brain from pain and
fatigue 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
grateful. I can't always admit it at the time, but I'm admitting it now.
One thing I can tell you is it won't help to tell me I'm irrational. I
know I am, but I can't help it when it's happening.
Wow powerful and so true !
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