My Fight with Fibromyalgia (My Best Way to Tackle this Illness)
I don’t know if my way is best, but I’m nearly symptom-free. I take medication and I slowly increased my exercise and activity.
In the spring of 2008, my fibromyalgia (technically fibromyalgia syndrome or FMS) was destroying my life. I couldn’t move without crippling pain. I would move in small increments like going to the bathroom or switching from the bed to the couch. I needed help getting to appointments. If my ride’s car didn’t have soft seats, I was in agony.
Sometime that summer, I was prescribed Lyrica. It wasn’t the first thing I tried, but it was the first thing that helped. It made a big difference. I did a little bit of housework, a little bit of caring for my kids, and I could get myself to appointments.
I lived like that for years. I got Social Security Disability Insurance (SSDI) after a long appeals process. A couple of times, I tried to be productive and return to school or get a job. Both attempts failed.
In 2012 or 2013, I began physical therapy for the FMS. Fortunately, they started me in a therapy swimming pool. That way, the exercises weren’t “weight-bearing.” It did add a little bit of resistance, but really it was less than holding a 1 pound weight. I started with 5 minutes of exercise – plus after I got out of the pool, they would stretch my legs gently.
I don’t remember how many months I continued with them. I think it was close to a year and a half. They added two minutes a week at first. Later, they added five minutes a week. With the added minutes, they added exercises. I was much stronger when they finally started having me work on the land. Eventually, I could exercise for 30 minutes weight-bearing. At that point, they discharged me.
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With all this exercise, something very nice happened. The constant widespread pain declined. It was still pretty bad when I was discharged, but not agonizing. I also disagreed with the discharge because I still couldn’t do a lot of basic household tasks. The fact was, I still wasn’t as strong as the average couch potato.
At home, I kept doing the exercises. I really liked the reduction in pain. Then, I got a virus and I was sick for a week. The FMS symptoms worsened to the point that I couldn’t do the exercise routine anymore.
It wasn’t at its worst. I decided on a plan. I chose a YouTube exercise video for beginners. I picked one that used the whole body and seemed to be a true beginner level – for average people. In order to make it possible for me, I started with the first 5 minutes of the video.
I did it every morning. After a week, I added a minute. I kept adding minutes in small numbers week after week. When I was finally doing the whole video, I felt better all the time again.
In 2015, I decided that I could manage a part-time job. I did a job search, which is a story in itself. August of 2015, I began working 15 hours a week. The job involved some walking and some stairs, which worried me at first.
The walking and stairs turned out to be a good thing. Don’t get me wrong; it hurt to walk and climb stairs. But they were absolutely necessary to my job. And since I care about work ethic, I did both with a positive attitude. My symptoms improved further.
When I was laid off in 2016, I was ready for a job with 30 hours a week and some activity. A year later, I went to 40 hours a week and more activity. Last fall, 2018, I increased my activity again. When I had a smartwatch (I recently lost it), I learned that I’m walking about 9000 steps most days.
The difference is profound. I still have a ghost of pain all the time, but it’s not a problem. I seldom notice it.
If I get too much activity, I will feel it. It’s horrible. But since I started working, I’ve gotten more and more careful to monitor my activity. I’ve become aware of the way a muscle feels when it’s starting to reach that point. That means I don’t have problems often.
I have to avoid NSAID class medications except in emergencies. For some people with FMS, they increase symptoms. These include aspirin, ibuprofen, naproxen sodium, and everything related. The safest way to check whether you have this issue is to take a dose of aspirin. It will be out of your system in 2 to 3 days. If it does make you worse, you won’t have to suffer for weeks.
Of course, in case of a heart attack, I would take aspirin as directed. A couple of days of extra pain doesn’t even matter at that point.
The over-the-counter pain medicine that doesn’t hurt is acetaminophen (often called Tylenol or Paracetamol).
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