Last
updated January 2004
I recently realized that I
may be one of the few, if not the only, person you know who has been diagnosed
with fibromyalgia. Well, you know how I
am… knowledge is power and all that good stuff. I thought I would try to summarize my condition in case you may
be interested to learn a little bit more about what you may or may not be able
to do with me.
What is Going On
With Rachel?
You
all know that my health has been pretty wacky, particularly since 1996 when I
blacked out and had a “Rachel-lanche” down the stairs. You may know all or part of what has been
going on since then. Here is what we
know:
- I am considered a
chronic pain (CP) patient.
- I have been diagnosed
with Fibromyalgia Syndrome (FM or fibro) and Chronic Fatigue Immune
Deficiency Syndrome (CFIDS or just CFS).
- These are not
contagious, nor are they related to AIDS.
There may be a connection with Lyme’s disease.
- As of now, it is
unlikely that my condition will be completely cured. We are finding more and more successful
ways of managing my symptoms through medication and supplements, therapies
and treatments, adaptations in my environment, and lifestyle changes.
What are
Fibromyalgia and Chronic Fatigue Syndrome?
Unfortunately, too many people have
self-diagnosed themselves without seeing a doctor, and, too many doctors have
used FM as a “blanket name” when they don’t feel like taking the time to
actually figure out what is wrong with a patient. Fortunately, there are some doctors who understand what little is
so far known and they seek to learn more.
In
short, FM is a “pain in the brain” disease.
If you were to look at a PET scan of my brain, you would see that the
“seratonin filter” is “burned out”. CFS
is basically an incapacitating fatigue that may vary in intensity over periods
of time. CFS is considered to either
overlap or be a subcategory of FM. Over
time, my brain burnout has led to a variety of symptoms. I have bunches, but here are my personal Top
10 (drum roll, please).
* Pain throughout my body * Morning
stiffness
* Extreme fatigue *
Trouble with sleep (in a nutshell!)
*
Cognitive…um, er…dysfunction *
Carpal Tunnel syndrome & arthrites
* Pins and needles in limbs *
Anxiety/depression (duh)
* Memory (specifically lack
of one) * Vertigo Lite
(that sounds like a salad dressing)
FM
shares the symptoms of other diseases that affect the central nervous system,
and rheumatologists and neurologists are the most likely specialists to treat
it. Besides PET scans, research is
beginning to show that is can be diagnosed through DNA testing. For the time being, the standard test is to
look at the group of symptoms, rule out other conditions (some of which don’t
have very good tests themselves), and show that a patient has pain in
particular areas of the body that can be elicited by slight pressure. Brian and I do our research, so if you would
like more info, we can pass on some reliable resources.
Weather
Because
my body’s inner thermostat seems to be on the fritz, I’m quite sensitive to the
extremes. Being very cold makes me extra
achy, and being very hot makes me particularly fatigued. Light and dark also affect me. There is evidence that Seasonal Affective
Disorder, depression, and pain reception are all linked to the same hormone
disorders. So, for me, winter
stinks! Around Christmas is actually my
worse time of year due to the short days, cold air, holiday stress, and the
extra activities that require a lot of energy.
(Yeah, I can be kind of a Grinch!)
;-)
Traveling
Going
more than an hour or so from my home really is a big deal. I can’t “just stop and walk around”; it
doesn’t work that way. The agony is
cumulative; the longer the trip and the bumpier the road, the more days I will
be fatigued and in pain. My doctors and
Brian and I are working together to learn what I can do to manage travel. We have found some things that do help, such
as planning in extra days of “crash time”.
That means no more weekend trips.
However, with some extra planning and effort, we are looking forward to
seeing the sites!
Driving
My driving is limited due to two reasons: 1) the
resulting pain of sitting too long is distracting, and thus, hazardous; and 2)
the motion of the traffic will sometimes get my vertigo going, and that is also
hazardous. Driving about 15 minutes in
familiar territory is about my maximum.
Exercise and
Injury
If
I’m so sick, why can I dance but I can’t sit still? Well, my circulatory system is weird. One theory is that I have these super tiny spasms throughout my
body that slow my blood flow. Exercise
raises my heart rate, forcing the blood flow past those tricky spots. This feels better. Holding one position, such as sitting for a long time, aggravates
the tiny spots. This feels worse. And once that happens it takes a long time
to calm things back down.
Unfortunately,
most strength training aggravates and increases the number of muscle
spasms. Thus, I have been losing my
muscle tone and am more easily injured.
I am working with a personal trainer in order to counteract these
effects in a safe manner. Fortunately
dancing requires no resistance to get the benefits of exercise. Due to the unpredictable onset of fatigue, I
do have to pace myself. So, I am as
careful as I can be without just giving up.
Giving up and becoming sedentary would leave me so much worse off. And my doctors agree that I’m just too young
to be an old biddy. (Tee hee!)
My Sleep Diet
My
sleep at night and periods of rest during the day are like a diet. I have learned, with the help of my doctors,
that there are particular things I must do at night to prepare both my body and
my mind for Dream Land. I also know
that it is okay to “cheat on my diet” every now and then, although I can’t do
it too often. For example, I might
choose to stay up late on New Year’s Eve, accepting that I will be fairly
immobile and uncomfortable the next day or two. If I’m visiting you and we are having fun talking or playing a
game, it is really hard for me to leave, but I know I need to do it (not easy
for a social butterfly). When 10:00 PM
rolls around it is best if we can hold our conversation and just “say good
night, Gracie”.
We Never Hear from
You
If
you don’t hear from me in a while, please don’t take it personally. It is very easy for people with CP to become
isolated. We have to use whatever
energy we have to just get the daily stuff done. Even though I have a hands-free set, using the phone for more
than a couple of minutes is difficult because I lose my concentration. That is why I love e-mail. I can do that whenever I am able and can do
it at my own pace.
When
you do actually see me, I don’t always look so sick or “broken”. That is because you generally see me on my
good or medium days. That doesn’t mean
that I’m not feeling pain or fatigue.
It just means that the levels are low and that after living with this
condition for so long I just don’t show it on my face so readily. (Actually, with giggles I remember a few
years ago when Brian had to give me “wincing lessons” and remind me that I’m supposed
to say “ow” when the doctors examine me so they know when something
hurts!) On my bad days, I usually stay
quiet at home. I can somewhat
manipulate when those days will be with enough notice. For example, if I’m going to a dance
workshop next Saturday, I’ll do whatever necessary tasks need to be done on
Monday through Wednesday (at a scheduled pace) and then stay home and do super
quiet things on Thursday and Friday.
Thank goodness for that good ole Type A; can you imagine what things
would be like if I didn’t already like schedules and planning? (Ha, ha!)
My Attitude
You may have heard the stories about cancer patients who used Three
Stooges movies to laugh themselves back to health. It is true that a good attitude is critical to a person with
chronic pain. That doesn’t mean I can
just “talk myself out of it” or my condition is “just in my head” (well, in a
way it is, but you know what I mean.) J What I feel is real.
Fortunately, I generally have a positive mindset about myself. Of course, we all have our down days, but I
have a great back up team. I have a
counselor who helps me with issues about CP, I am a member of both the National
Fibromyalgia Partnership and the American Chronic Pain Association, and I
belong to a fabulous CP support group.
My support group is filled with people like me who believe that humor is
a great way to deal with the stuff we have not been able to change. Actually, the day my neurologist told me
that I have an unpredictable autoimmune condition, I actually felt better! I was finally able to say, hey, this is how
things are: I can either mope about it for the rest of my life, or, I can
accept it as just another part of me and go on and live my life. So, if I didn’t have such a good attitude,
I would essentially be crippled. Therefore,
your hugs and smiles will always be considered fuel for this soul train!
Besides
my counselor, the rest of my back up team includes my newest addition, a
rheumatologist who specializes in FM, as well as my neurologist, my
pathologist, my chiropractor, my neuromuscular therapist, my physical trainer,
and, of course, my fabulous husband.
I do trust these people to help me do what is best for me in regards to
their individual specialties. We met
with seven different spinal surgeons before we chose one to do my back surgery
in 2000, so you can imagine that the folks I’m with now must be good!
Pride versus
Practicality
One day this summer I spent 1½ hours at one of those
big home improvement stores looking for stuff for my garden and chasing down
other needed odds and ends for the house.
I then met Brian for a short lunch to be followed by grocery
shopping. I was already exhausted and
in pain from the earlier shopping. I
walked into the supermarket, looked at the electric buggy cart, but then let
pride take over. I wasn’t going to sit
in that thing if I could walk! I took
the next three steps into the store and became overwhelmed at how vast it
looked that day. I realized that there
was no way I would be physically able to go up and down those aisles while at
the same time trying to force my brain to concentrate on the products. I thought about just giving up and going
home. Instead I went and asked for the
key to the electric buggy. I ended up
getting my shopping done without any trouble.
I went home and did “quiet” work on the computer for two hours (with
multiple stretch breaks, of course).
Then I went outside for 1½ hours and dug a trench around my wee garden
plot and filled it in with vole-blocking stones. Golly, I sure had made the right decision about where to expend
my energy that day! I got my shopping
done and I got to lift my spirits working outdoors. I’m going to try to remember and utilize
that lesson in the future. What a great
day!
What about Brian?
Of
course, my CP is as much a part of Brian’s life as it is mine. Fortunately, he is able to go to most of my
doctor appointments. He forages for us
when I’m unable to cook and has made adaptations in his life without a single
complaint. As the protective husband,
he worries about me more than I do. I
am so lucky to have found a true knight in shining armor. After working hard at the lab all day, he
comes home and takes care of me, then takes care of the house, and then, as you
may imagine, is very tired in many ways.
Believe it or not, it is difficult for him to find not only the time but
also the energy to relax! Now
that he is also recovering from viral meningitis, sometimes I’m a little more
able to help him out instead. Thanks to
all of you who have offered to help him take his mind off of things for a while
and do something fun. (Fun? Oh yes… he seems to recall that strange
concept… ha, ha!)
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What now?
Life
presents challenges to everyone in so many different forms. I know that many of you, too, likely have
your own hurdles or things you would like to change. Brian and I are continuously learning to make our own changes for
better living. (Hmmm… that sounds like a magazine or something.) As we learn more about our conditions and
about how we both handle things, we get better at living at a more satisfying
pace. We know there is a difference
between fatalism and acceptance.
Fatalism is a belief that since there is currently no cure for FM, I may
as well just stop living now.
Acceptance is the understanding that these are the cards we have been
dealt, so let’s move on and play ‘em!
We keep up on the medical research, but we spend more of our time doing
the things we need and want to do to be kind, useful, otherwise healthy, and
happy.
Thanks!
We
appreciate your patience and your trust.
Many of you have asked if there is anything you can do to help. Brian and I are both pretty stubborn and
like to do as much for ourselves as we can.
However, if you call us to tell us you are dropping off a casserole, we
won’t complain! It is difficult for me
to cook and do the dishes. Our New Year
resolution is to remember that other people besides us like to do nice things,
so we should stop being so mulish, be grateful for the help, and just say THANK
YOU. Of course, we will always
appreciate just being in your thoughts, too.
J
If
you have other questions, please don’t be afraid to ask; you know that we are
big supporters of education! ;-) If you didn’t have any questions, well, you
also know that we are big supporters of recycling paper. J
Have
a wonderful day, and thank you for being a part of our lives!
