I’ve had fibromyalgia since the 1980s. It came on gradually, with a lot of muscle pain. I knew something was wrong and had a course of physical therapy, and started working out, which put me at about 95% of normal. Then I was in a car accident, which caused a fibromyalgia flare.
I had a nerve pinch from my neck down my arm, which was a 7 + on the pain scale and lasted a full month. That’s when I was diagnosed, by a physiatrist who told me he couldn’t help me. I have had times when I was in so much pain I couldn’t walk. Other times my feet are fine, but my glutes hurt so much I can’t move. Or my neck is locked up.
My shoulders feel like bone plates, the muscles are so tight. I have a trigger point in my back that catches me when I’m dehydrated. It feels like a searing hot knife in my back so that I cry out loud. At least I know I need a glass of water!
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But the worst is fatigue. I have days when I can’t think. I can’t even process what I’m reading. In those days I watch videos. I watch fixer-uppers, soothing scrolls through gorgeous houses, or animal and nature movies.
I sit in my recliner with my computer on my lap and go away somewhere peaceful. That’s the only thing that I can do. I have many days when I can’t process numbers. It’s like my brain locks up. Try doing your taxes then!
You have to learn to pace yourself. You can’t do any one thing for more than 2 hours. You can’t stay in any one position for more than 2 hours. Then you should completely change what you’re doing. I have to pay a lot of attention to ergonomics. I am short, and I always head for the small chair that’s low to the ground.
A tall, armless chair is torture, nowhere to take the pressure off the weight of my shoulders. I carry a folding footstool when I know I’ll be sitting for a long time. At the movies, I sit in the front row middle where I can prop my feet on the bars in front of me. At home, I have a footstool at the dining table, my desk, and my drafting table.
I buy fabulously expensive office chairs that are multi-adjustable so that I can at least be halfway comfortable at home. I have a massage chair in my bedroom, and a Thera cane draped over my recliner.
I’m retired and my husband is working. We have only one car, so if I need the car for anything, I have to get up 2 hours earlier than normal, take him to work, then run my errands, and pick him up at the end of the day.
A car day takes me a week or more to get over. The day after a car day I will sit with my computer and do nothing else. I have to plan on that. People wonder why I don’t run around doing endless fun stuff or shopping or whatever. I can’t.
Some of my relatives think I’m just a hypochondriac. They don’t believe I’m sick because I look normal. Believe me, I’m not at all normal. I wish I could work, go places, and have a life. Oh, one last thing: I have to consider everything I put into my mouth. This disease is only managed by diet.
I’ve given up anything with sugar in it, anything with grains in it, all processed food, all carbs except fresh fruit, which I eat as a meal by itself. It is very hard to have a social life – people serve baked goods on every social occasion. I’ve learned to bring my own food and ignore what’s on offer. When I get tired of that and ignore my own rules, I always suffer.
My muscles feel all ropey and knotty, and they are always sore, somewhere or another. I don’t have the skin pain others describe, but ever since I had an osteopathic manipulation, I can do a stretch and it will release something somewhere, causing spontaneous muscle spasms that I can’t control.
My husband can gauge my level of fibromyalgia that day by flicking his fingers at me. If I’m having a bad day, my head shakes uncontrollably.
If you want to avoid this, keep yourself healthy. Stay active, and eat healthily; get off sugar and processed foods.
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