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.

On the right: Last fall at Sundance with my daughter Colleen, who also has fibromyalgia. 

The doctor that gave me the pain pills died of Hodgkins disease and years later I heard that before he died his license was revoked due to his over medication of his patients. One of the medications he gave me other doctors supported. This medication helped me to sleep. But I discovered years later that it impaired memory so am reducing the dose. My memory stinks and hopefully will get better if I can get off this drug. But everything has side effects!  There are tons of new (very expensive) drugs advertised on TV.  The commercials give the positive things the new drug can do to help a patient. Then the advertisement quickly lists the many side-effects that can be irritating or fatal! 

2018, After we retired at age 70 and moved to Arizona most of the symptoms went away, except when we went to Canada for over two years. We lived in minus 50-degree weather for most of the time. My symptoms came raging back but I knew better than to complain or let anyone know of my diagnosis. Coming back to Arizona was wonderful! It was like being wrapped in a warm blanket...cozy and comfortable. So only warm places for me. 

And if you have read this story to the end. I want you to know... keep away from Kevorkian because, with time, hope is waiting for you. Be patient and know that for many, Fibromyalgia leaves when estrogen gets low. A mature age seems to dampen many of fibromyalgia's irritating symptoms. (Or you just get used to them.) So, hope is around the corner and when others may feel aging is a burden or may thwart a good life. For some of us, mature older women who have our odd disorder, the pain, frustration and confusion of a younger fibromyalgia sufferer can fade away. Your later mature years can be golden.  In six months, I will be eighty and try to enjoy every day, every moment, every second I have been given. 

So, this is my journey and hopefully others can find comfort in knowing they are not alone.