My Life with Sleep Apnea and
FMS/CFS* (Uncensored)
*Fibromyalgia
Syndrome/Chronic Fatigue Syndrome
An Open Letter To Anyone Who Has a
Fibromyalgia Patient In His or Her Life
A Simple Explanation of
Fibromyalgia
My Story
Begins:
Sometime during my mid teen
years I began to have great difficulty sleeping. It would take me 1-2 hours or
more to fall asleep. Waking up in the morning I felt as if I had not slept at
all. I hated mornings. However, I was still able to function normally albeit I
was ready to take a nap at any given moment. I finished high school a half-year
early because I had already fulfilled the required number of credits for
graduation. I enrolled in college and began my first semester in the spring of
1981. At this time I also took a job with a landscaping company to help pay for
my college tuition. It was very hard manual labor. I would often go home too
exhausted to eat and would simply plop down in bed, dirty clothes and all, and
fall asleep. Mornings brought no relief from the fatigue yet I kept pressing on.
Getting through college was extremely hard. Not because the academics were more
difficult than they were for anyone else. It was the simple fact that I had
great difficulty staying awake during class and while studying. I thought what I
was experiencing was normal. I was to find out in later years that it was not.
With the Lords help and the strength that youth brings I was able to graduate from college. However, the fatigue would continue to plague me as I entered the workforce. I found I had the same problem at a corporate desk that I did at a classroom desk. I was becoming deeply depressed and it was at this point in my life that I began to entertain suicidal thoughts. Coffee, Mountain Dew and cigarettes kept me going through the day. I began to dread every day as I knew I would have to fight the fatigue monster yet again. As life went on with new jobs and new experiences, the monster continued to follow me 24/7 without fail. It was always there, tormenting and taunting me. Through the years I would continually play with ideas of ending my life. I didn't want to fight the monster anymore.
As always, the Lord continued to carry me through the circumstances of life. Then, in my early thirties, he granted me a phenomenal blessing. He brought a woman named Kelly into my life. After a year of courtship we were married. My dear, sweet wife now had to contend with me and my monster. It was in the first year or two into our marriage that I began to experience great pain that seemed to be centered on the major joints of my body. I went to the doctor and he took x-rays of my hips and knees, but found nothing. I thought to myself, "I am lazy AND crazy!" I was able to continue to fulfill life's responsibilities, but it was a knock-down, drag-out fight with the monster every day. Now, not only was he tormenting me with fatigue he was bringing pain to go along with it. After another few years we were able to purchase a new house and our marriage was quite healthy. I had so much to be thankful for, yet I still kept thoughts of suicide in the back of mind. I don't remember exactly when, but one night I sat in the bathtub with tears in my eyes. Kelly came in and I distinctly remember telling her, "I can't do this anymore." We talked and agreed that I should go see a sleep specialist.
An
appointment with the
The first few weeks were very difficult. The mask was hard to get used to and the air hose always seemed to be in the way. However, I did notice I was sleeping better. I did not experiencing the dramatic improvement I was hoping for and had heard about. But, it was helping to a certain extent. I slept with the CPAP for several months yet I was still felt fatigued and exhausted throughout the day. My hips and knees seem to ache constantly and no over the counter pain medications gave any real relief. I went back to the sleep clinic and they ordered a third study. However, this one was different. It was to determine the extent of my daytime fatigue. I arrived at the clinic very early in the morning and they explained the process. I was to stay up for two hours and then they would send me to bed (with all those fun electrodes of course). They would give me 20 minutes in bed to see if I fell asleep and then they would wake me up again. This process was repeated five times throughout the day, if I remember correctly, and I fell asleep every time they let me lay down in the bed. I returned about a week later to talk with the doctor about the results and he gave me a prescription for Provigil. This is a medication given to those with sleep disorders to help them stay awake
I got my prescription and began taking it. It did what it was supposed to do, but it felt artificial. I told my wife it felt like an invisible man was following me around holding my eyelids open. Alright, now I was able to feel a bit more alert during day. However, as far as my body went I still hurt like hell. I would wake in the morning stiff as a board and every joint in my body would ache. Once, I got up and moved around I loosened up and it seemed I would have a few good hours in the morning where I began to feel like something approaching normal and then the fatigue would begin to set in again. The struggle to make it through my work days was still something I had to contend with. That damn monster would not leave me alone. Over the next two to three years the chronic pain began to get worse. I would often set on the edge of my bed in the mornings and think to myself "I don't want to do this anymore. Why don't I just put a bullet in my head and be done with it?" Of course I knew I wouldn't do such a thing and I had to go on with my life, but I often wondered where I would get the strength just to put one foot in front of the other. As the months went by I began to lose interest in doing anything. I enjoy reading but can't stay awake long enough to even finish a chapter. I enjoy target shooting at the pistol range, but it hurts my shoulders just to hold up the pistol and point it at the target. If I mow or do yard work the next morning I feel like I've been worked over with a baseball bat. There is a price to be paid for any sort of strenuous physical exertion.
I had to do
something so I made a doctors appointment and he prescribed Diclofenac, an
anti-inflammatory, which seemed to help to some extent for the first couple of
months and then nothing. I called the Doctor's office and asked for something
else. They gave me a prescription for Mobic, another anti-inflammatory. It did
absolutely nothing. I was getting very discouraged and thought about something I
never had before. Back in the old days they used whiskey as a remedy for
everything so I figured why not give that a shot. I went and purchased some
whiskey for the first time in my life. That evening I poured about 3-4 ounces of
it in a glass and then topped it off with some Coke. I sat down to watch a
movie; I finished off my drink with some peanuts and to my surprise my body felt
more relaxed and my aches less severe and my head was still clear. Now, that may
fly in the face of my Baptist upbringing, but all I know is it worked and it
gave me some welcome relief even if just for a short amount of time. I do
believe drunkenness is a sin and I keep myself far from crossing that line. So,
take that for what it is worth and if you have an opinion about it you are more
than welcome to keep it to yourself. Well, I knew that whiskey was not any kind
of solution to my problem so I called the Doc one more time and asked for
Lyrica. My Dad was taking it and he said it was helping him quite a bit. I
picked up the prescription and began taking the two pills a day as described. At
first it made me a bit dizzy and I had trouble focusing on things. I have
continued taking Lyrica and the side effects seem to be dissipating. The
medication is helping my chronic pain although I think I will need to go with
three pills a day instead of two. The pain and fatigue are not entirely gone
which is still quite evident when I physically exert myself. However, for the
first time I believe I have found a medicine that will make a dramatic
difference in my quality of life. Hopefully, it will help keep the monster
restrained. Only time will tell.
Update 08/23/2008: The only combination of meds I've found
that offers some relief is (2) 75mg Lyrica and (1) 100mg Provigil and in
the morning and again in the afternoon. And then (1) 100mg Zoloft before I go to
bed. Some days it seems to help and other days it seems to do nothing. On the
evenings the meds aren't working Scotch seems to be the only other recourse. I
can't help but feel like a hypochondriac, and still find myself wondering if this
is all in my mind.
Update
04/23/2009: Some months back the Lyrica began loose its effectiveness. At about
this same time the muscle spasms in my hips/legs that are triggered by a
resting state became increasingly stronger. The spasms have become so
bad they very often keep me from falling
asleep. There seems to be no surefire way to stop
them. I've gone to work many days this year with only 3-4 hours
of sleep. I started taking (2) 75mg Lyrica & (2) 100mg Zoloft before I go
to bed. Sometimes I add (2) Acetaminophen or (2) Ibuprofen to go along with them.
I also sometimes rub horse liniment on my hips and legs. Yes, horse liniment.
I buy it at our local Tractor Supply store and it burns like the
dickens when you first put it on (you really got to watch where you rub
it down there). After the initial burn subsides you can feel it working on your muscles. These
remedies do bring some relief. I haven't had any Scotch for quite sometime. However,
I do keep a bottle of Tequila handy as it does not bother
my stomach like the Scotch. Not to worry - I don't mix the Tequla with the
pills. I'm still plugging away I'm just taking it day-by-day. The Lord keeps
encouraging me in only the ways that He can.
Thank you
for reading my story.
Scott E. Blades
Wichita, KS
E-Mail