A monster lies deep within. I have fibromyalgia, doesn’t everyone?
1950, My first days at school when I was six were a joy to
me. I loved to read and learn until it was decided I was allergic to
school. As I walked along the busy
street toward the little campus, I began to feel itchy lumps grow upon my elbows
and knees. The nurse said, “You’re
allergic to something that is around the school; the trees or bushes, or paint
within the walls.” I was sent home and
the lumps went away. So, after lunch I
walked along the street again only to feel the lumps return…and that confirmed
the diagnosis. I was taken to a doctor
to get allergy pills. It seemed they
worked, but the medicine made me very sleepy and for a seven-year-old who
wanted to play and do well in school sometimes I hid the pills inside my
pockets and launched them into the street as I walked along and suffered with
the inflamed lumps in silence. Then as
if by magic the problem went away. “You outgrew the allergy”, I was told.
1970, I met the strange monster again when I was about twenty-six and still
didn’t know the illness by name. Weirdness began again. My second child
was an infant when I awoke covered with hives. My face had changed into a
lopsided imitation of a gargoyle. My
husband declared the lumps were insect bites and ripped the house apart to find the
culprit. As the day progressed the itchy
lumps around my eyes and lips moved down my body, (like gravity was pulling
them), and attached to my joints and the bottoms of my feet making it difficult
to walk. But I walked anyway, for with
two babies there was no time to lament the strange attack. Out of the blue the attack of the lumps came
and went for several years until one night.
I was attacked most cruelly and awoke to find hives within my throat,
which made it very difficult to breathe. In the middle of the night with my face so
swollen no one could recognize me and my breath coming in struggling gasps I
went to the emergency room.
“You must be allergic to something; what did you eat?” I
could think of nothing that was different. So, after massive injections of
Benadryl, I was released with an epi-pen to help if I even had such an attack
again. “We don’t know what this is so see your own doctor.”
I saw doctors every day at work so would cautiously ask,
“Have you heard of such a thing?” The response was, “You must be allergic, you
don’t strike me as a nut or hypochondriac.” I cut out many foods, including
wheat, certain fruits and vegetables, and I changed our washing detergent. We looked at plants in the garden and for
anything in our home but could find nothing that appeared to have caused me to
have a breakout. I had hives on trips, when not at home so maybe it was in the
car. We exchanged cars, still from time to time and I still got hives…then again, like
magic, they disappeared.
1980, Great I thought. "It must be something we removed from with-in the house." But oh, nay-nay. Not so, because soon after
that I began to have very painful sores on the inside of my mouth each month. I
pin-pointed them to about a week before my period would start. The dentist
decided it was a weak immune system and I had some kind of a virus that came
each month when my immune system dipped when stressed with the imminent
menstrual, often painful, period. Before that the dentist tested me for aids and herpes, but they were
negative, so he decided his diagnosis was correct. He gave me an antiviral to
take. It seemed to work. Then another doctor decided this was Bunk! He took me
off the medication. The sores came back along with hives and runny ears. Yes!
runny ears. Hmm. So, what is that symptom. Well, it’s hard to explain except it
feels like I’ve been swimming and my ears have liquid draining out. I could
especially feel it when laying down and would have a tissue with me to wipe at
my ear when going to sleep. (I’m a side sleeper)
Los Angeles County hospital where I was teaching had an ENT clinic, so I asked one of the doctors to look in my ear as it hurt inside when it was runny. “Nothing”, was the conclusion. I asked different doctors over several months and the conclusion was the same, “I see nothing.” “But it’s runny and hurts like an earache.” “Ignore it.” I was told. So, I did. I slept with my aching ear on a heating pad for a few days each month…right before I got the mouth sores.
1990, I was tired a lot, and ached all over like I had the flu, but
with, by now, 3 then 4 kids, I figured that’s how everyone felt. I often felt
hot like I had a fever. I took my temperature and found I usually had about 99
degrees when I was tired and achy. Sometimes when I got home from the hospital (working)
I would feel like one of the cartoon characters from a Donald duck feature who
turned flat and oozed up the stairs. I would say to the kids, “Please, just a
few minutes to rest, please leave me alone cause Mommy’s not here right now.”
I would grab a tissue for my runny ear and throw myself across the bed.
It went on for years and I talked to several other doctors,
one gave me vitamin B12 shots because she said I was run down. Others gave me things
for my mouth sores and along with all that, the fatigue was unbearable
especially if I was taking antihistamines for my intermittent hives. By now I
noticed I was sensitive to light and sound during those times and once in a
while I couldn’t hear very well, and my vision was blurry. “Did I need glasses?”
2000, I think the worst was
about after about 30 years of weird stuff when I began to have IBS. Nothing I
knew of, set it off, it just came. I knew when a poop explosion was coming
because my guts hurt like knives were being inserted and the noises my bowels
made were bubbly and loud. If I caught ‘it” in time with massive amounts of
Imodium I was okay. However, if I was out of the pills or was too busy or
ignored the oncoming symptoms the violent diarrhea hit with a vengeance. This
is gross, but the diarrhea would run out like water, and I had no control. If it arrived when I was at a School Board Meeting or travelling in an airplane or car, I was doomed. I threw away many
undergarments after soiling things inadvertently. Still do as a matter of fact,
although now am more diligent about recognizing oncoming symptoms.
I have decided stress sets off hives and the IBS. Not always
but sometimes so I try to be prepared with antihistamines and Imodium at all
times. After menopause, the mouth sores decreased, but not completely…it’s
embarrassing as I’m sure my breath is like the hind end of a mule during those
times. Did I mention the pain? Not the worst thing, however it limits physical activity. I became a long-distance jogger; I was told this would help with stress. The pain continued and hit mostly in the joints and feet like 10 penny nails
have been driven through your knees, shoulders, wrists, ankles, and elbows. Not
every place at once, but each one in turn, and always in pairs. It’s all
embarrassing as a matter of fact because, Geeze, I’m sure others think, “She
looks normal, nothing broken, no nasty diagnosis, why is she complaining.” And so, I rarely complained. No one wants to hear it, nor do they understand. Oh, I get
grumpy, but it could be worse right?
2005, What's this I wondered, and why does it come and go? The internet arrived, and I began to do research.
My symptoms were all over the place. They covered all systems in the body. One interesting diagnosis was called Fibromyalgia, others said this diagnosis was psychological and for nuts.
I knew I was not nuts so kept looking for an answer and followed the sage
advice, ignore it.
Right, I’ve been ignoring it since I was seven years
old. One doctor gave me a strong pain pill. I took it and when I woke up the
next morning…the pain and symptoms were gone. “Wow, is this how normal people
feel?” Then came the campaign about the
dangers of taking this pill. Some said you would get addicted; I began to feel
like a druggie! I quit taking the pill after feeing okay for several years and
the pain and the symptoms returned.
2010, Then someone told me about Dr Kevorkian (He was the death doctor who had a mobile device for people to commit suicide.) His first five patients had fibromyalgia. Makes sense to MEEeeeee. I am not nuts. I am not nuts.
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