Fibromyalgia was first described in the early 1800s. It was considered a psychiatric ailment for decades. It wasn’t until a study done in 1980 that doctors were able to identify it scientifically. I got sick with it in 1989, a very stressful time in my life.
The problem was that even though the year 2000 many, if not most, doctors continued to refer their patients to a mental health professional. Doctors refused to believe it was real. In the 1990s internationally known and respected rheumatologists (thankfully I have forgotten his name) continued to claim that FM did not exist.
He wrote about his opinion and addressed numerous medical conferences to tell the doctors attending to not let what their patients were saying sway their understanding that this “condition” was basically all in their mind, and to continue to refer them to mental health facilities.
Could this (especially in the 19th century and early 20th century) be because 98% of those patients were women? Who knows.
The idea that fibromyalgia may be the symptom of inactivity deserves an answer. If you do not have FM or live with someone who does, it is virtually impossible for someone with FM to explain. My way of explaining it is that it is a circle or cycle of pain.
So, I wake up in the morning in pain. It doesn’t matter how well I did, or did not, sleep. The pain comes from all over my body. Some of it is a dull ache but for me, most of my pain feels like a bruise. It is very easy to elicit pain in a specific area simply by pressing on it. I feel like someone with a ball-peen hammer (the hammer with a round ball on one end) spent the night hitting me with it all over my arms, neck, back, and legs.
When I get out of bed, I’m dizzy and the pain is bad. But as I go through my day, and my muscles loosen up the pain level drops. I have a few good hours on most days from 10 am to about 2 pm. By the time it gets to 3 pm, the fibro fog has descended and I can’t think clearly.
Trying to have a conversation with fibro fog is impossible. I can see somebody’s lips move but what they are saying doesn’t make sense. I can start to answer them but somewhere along the way I forget what I was saying and fall silent. I often say something but the words don’t go together. I am aware of this difficulty, but I am powerless to fix it.
During this time I am overwhelmed by fatigue. Often I can actually feel my energy drain out of my body. The need to sleep is strong.
I remember one time when my husband and I were going to go to a nice hotel for the night while my parents watched our two teenagers. We spent the morning packing and taking care of things. We finally got in the car about 1:30. We hadn’t eaten, so we stopped at a restaurant we liked about four miles from our house.
As we were finishing our meal, I could feel my energy drain away. I decided to ignore it. I wouldn’t tell my husband. We had a three-hour drive ahead of us and I thought I could just nap in the car.
When we walked back to the car I started crying and told my husband what had happened. He was very used to this. He asked if I wanted to go on or return home. I told him how sorry I was but I needed to go back home. When we got there I went straight upstairs and went to bed, still crying. Eventually, the tears stopped and I fell asleep.
Now that I’m older, that need to sleep in the afternoon is even worse. I plan my day around it. Doctor appointments have to be finished by 1:00 or my husband has to take me.
As the afternoon and evening progress, the pain begins to ramp up. I am powerless to get on top of it. By the time I go up to the bed, I am drained. My pain is bad, but my fatigue barely lets me brush my teeth. I fall into bed and as my body relaxes, my mind, which has been sleeping most of the day, wakes up.
I know I desperately need sleep but my mind is wide awake. Thoughts run through it for hours keeping me awake. I think about my day, about where we should go for our anniversary, I sing songs. Often a bit of a song runs through my thoughts in a continuous loop.
Three hours later, about 1:30 am, I get up and go to the bathroom. Then I take two Tylenol and go back to bed. I am finally able to sleep until about 8 am.
Here’s the thing about exercise. Some days are a little better than others. On those days I may run an errand and come back completely worn out. On those days, if the weather is nice, I may decide to walk half a block. I return worn out.
On the days when I’m feeling especially good, I might take my three-year-old grandson to the park. It is a significant walk but I love walking with him. By the time we get back home, I can’t move. I go to bed and can’t get out of it in the morning.
If I really have an active day, sometimes I have to spend the next day in bed. I’ve had severe FM for 30 years and I still can’t figure out how much activity is right for that particular day. It’s constantly changing.
Doctors who don’t fully understand FM advise their patients to get outside and work up to walking a mile, go swimming, take up a sport. They simply do not understand the pain and fatigue cycle of FM. I have a primary care doctor and a pain specialist.
Too much exercise causes great setbacks in FM. We have a good exercise bike and I decided to get on it and build up my endurance. The first day I pushed myself and felt horrible that afternoon. I haven’t ridden it since. The amount of time I rode the bike? Two minutes. I think that says it all.
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