Living With the Realities of FMS

An unfortunate aspect of being diagnosed with FMS is that it does not offer any hope for recovery. Most patients have been living with pain for many years before they are finally diagnosed with FMS. Like my mother, many of these patients are trying to find a reason for their pain, and always in the back of their heads, they're really hoping for a cure-all which will take the awful pain away. But the sad fact of FMS is that there currently is no cure.

Maybe the most debilitating part of having FMS is the way it drains you of all your energy. You experience chronic fatigue, and that's often combined with the inability of your brain to fall into deep sleep. Therefore, your body never has the chance to rejuvenate itself at night. So you find that your days only hold a small number of hours which you could truly say are "good". And the definition of "good" seems to be more and more lenient over time.

In my mother's case, she finds that she has about 3 or 4 hours of energy per day. Some days she uses this time to do the laundry, because that's what needs done. But other days, she uses that time for things she enjoys. When you have a debilitating condition like FMS, you quickly learn to make the most of what you have, and to not waste time on things that in the grand scheme of things are not important.

I asked my mom how FMS has affected her life... below is her response:

"How has this affected my life???? Well, that's a hard one because I
don't know what it would have been had I not had all of this for so long.
Obviously right now I am disabled in many ways that most 55 year olds
in good health are not. I can't be on my feet very long, I can't use my
hands or arms for any length of time, can't do anything over my head
anymore. If I push beyond my limits, I pay for it for many days after. So I
try to keep activities at a minimum, but that's not always possible and
then I just pay for it for several days afterwards. Example, when any
friends or relatives visit us Tulsa, I try to do things ahead of time and just
do as much as I can with our guests and then know that afterwards it will
take about 3 or 4 weeks to get back to what is now my normal. But I
refuse to give up all of life and so I make decisions about what's
important to me and just live with the results afterwards. That's where
family and spouse support and understanding become a major issue. If
a patient's immediate family, whoever that includes, does not
understand this disease, it is easy for them to think this is a disease of
convenience or mind over matter. They see the patient be able to do
what they want to do, but not able to do other things. Example, the
weekend I went to the theater to see "Cats", I had to decide
whether I would try to clean the house or go to the play. That time I
chose to go to the play and to heck with the housework. Now, to most
people that would seem like a choice of mind over matter, or being
conveniently too ill to clean but well enough to go to the play. Well,
what it really is is a matter of limited hours of activity and choices. I still
do clean the toilet, but I refuse to spend what hours I have always
scrubbing floors and cleaning the house. But this is really a hard
concept for anybody to understand when they don't see any casts or
missing arms or such on me. " (Nancy Bird)

The fact is that FMS patients do not "look" sick. It becomes very easy for family and friends to think the patient is making it all up, or is looking for attention. The first thing a supportive family member or friend of an FMS patient must do is believe the patient when she tells you about her pain! If the patient can't find understanding within her close group of loved ones, she is much more likely to sink into depression and have an even harder time coping. The supporters should also read and find out about FMS so that they can offer help in the best way possible. A good reference to start with is "Letter to Normals", which is an open letter to the support network of FMS patients.

Of course, donating money to research efforts can only help in the search for more effective treatments and an eventual cure. A good place to start is the National Fibromyalgia Research Association.

Jenny's FMS page

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