I’m not sure what it is like for other people, but I suspect I have had Fibromyalgia my entire life. As a child, I was always hurting, but I was told it was just “growth spurts“. Things that didn’t seem to hurt other children (rough playing) were excruciating to me. I didn’t have a lot of energy, even when most kids were busy running and playing.
I was very sensitive to weather changes and preferred to stay indoors, and I was “sick” a lot. I seemed to get every cold that come along, but sometimes I would fake being sick, so I could stay home from school because I was just so tired all the time. As a teenager, I didn’t go out and do a lot of things with my friends, because I couldn’t keep up with them.
I didn’t participate much in school events, clubs or sports, because I didn’t have the energy. I struggled in school, because I had a hard time learning, concentrating, focusing, and remembering things. I barely passed tests, and even though I was learning the material, I had trouble getting it back out on paper for assignments.
I felt like my memory was like swiss cheese, full of holes. Especially when it came to remembering history dates and names, math formulas, and chemistry equations. When I was 17 I started college but after a year and a half, had my first major flare-up, and collapsed doing an aerobic routine. I was sleeping literally 18 hours a day and was so exhausted I could barely get myself to the bathroom or chew my food.
I became so severely anemic I almost died. My doctor said if my iron level had dropped even one more point (it was 14. Should be at least 50-100) she would have forced me into the hospital. I had to quit college. A year later, I went back but again had to leave because I was flaring up again. I had to quit or was fired from jobs, because I was too slow, and couldn’t keep up with the workload, no matter how hard I tried, and the more I pushed myself, the sicker I got.
By the time I was 25 I couldn’t work at all. I was young and looked healthy, so my doctors just told me I was depressed. It was years before I got a full diagnosis. It took two different psychologists to suggest to my doctor that I get tested by a specialist for Fibromyalgia before I could get anyone to realize I wasn’t JUST depressed.
Day to day, my pain level is at about 6/7. It’s primarily manifested in both my legs, my left hip (sciatica), my back, shoulders, and neck. Occasionally have so much pain in my hands I can’t even type on the computer (which makes my chosen profession as a writer more difficult than most).
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My life is pretty limited because any physical activity beyond a 20-minute walk once or twice a week sends me into a major flare-up that lasts weeks at a time. When this happens I can not function at all and am bedridden for days at a time. I can’t do much but watch TV and sleep.
During one flair, I once slept for three days straight, because I was so exhausted. I didn’t even eat. I woke up once, to use the bathroom and sip some water, and passed out again. Once I woke up, I felt really good for about six hours, and then the fatigue hit again.
I have very few days when I feel “normal”, or energetic. No matter how much sleep I get, I am ALWAYS exhausted. I suspect it’s the same kind of tired new parents feel when they haven’t slept a full night in a year. I remember one time, when I was about 14, I woke up in the morning and actually felt refreshed and energetic, like I could face the day head-on and bounced out of bed. Literally, bounced.
I remember it so well because the entire day I was confused. I had never felt that before, and it was so foreign to me. The next day it was gone. I have never felt that again. EVER. If that is what it feels like to be “rested” I’ve been screwed out of good sleep my whole life. One day out of 32 years isn’t much.
Out of a 30 day month, I have maybe one “Less Bad Day” a week. If I’m lucky. I am lucky enough to have a man in my life who understands my limitations and doesn’t expect me to do more than I am able to. He often does the errands, and a majority of the housework, because I just can’t finish it all.
When you have Fibromyalgia, there are no good days. Not really. Days fall into three distinct categories:
1. Flair ups: Days when you are in so much pain you pray for death but it never comes. You feel like you’ve been hit by a truck. No amount of drugs help.
2. Bad Days: When all you can do is take a shower and brush your teeth if you’re lucky. Housework and errands have to wait because you’ve used all your energy just bathing. Strong pain meds take the edge off, but you have the energy level of a geriatric slug wading through tar.
3. Less Bad Days: When the meds kind of work, but you still hurt, and you don’t really want to do anything. But, you suck up the pain and the exhaustion and force yourself to go grocery shopping because if you don’t you’ll starve. It’s really a matter of survival priorities when you have Fibro. Most of us just try to get through each day and do whatever we can to not cause a flair-up of symptoms.
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