I have Fibromyalgia. It’s a disease with no definitive test and a lot of doctors that don’t believe in it. It causes chronic fatigue, mental fog, an aching in your muscles and has been linked to depression, Irritable bowel syndrome, headaches and a host of other things that can’t really be explained.
It has turned me into a human barometer – I can feel the changes to barometric pressure just by the level of aching in my body, I’m very lucky, because my case is mostly controlled by the medicine I take. This doesn’t work for everyone, and some people just give up on medication all together. There are those that modify their diets, turn to acupuncture, mediation, herbal supplements – in other words, those of us with this disease will try just about anything to get it under control. Some become overwhelmed by it and will spend months in bed in pain and depression. They are called lazy because they simply cannot do the simplest tasks with out a tremendous amount of stain. Even in my case, I can tell if I over do it, because my pain level will be significant. Some explain it by the spoon theory, which says imagine that you have 12 spoons for the day, and everything that you do costs you a spoon. So taking a shower costs a spoon and doing your hair and make up costs a spoon and putting on your clothes takes another spoon, and even mundane task in your life takes a spoon and pretty soon you are out of spoons.
I have a lot a questions about the genesis of my disease. Well before I knew that I had fibromyalgia, I suffered from irritable bowel, that my doctor at the time wrote off to stress. And I suffered from depression. I was tired a lot but I explained it away with too many long days and short nights. I had never even heard of fibromyalgia. I did notice that I was frequently achy, especially when the weather was cold, damp or changing. At first I thought that it was my bones that hurt. So I told my Dr. this and he sent me for bone density tests and bone scans, to no avail. Then one day I really concentrated on the pain and realized it was not my bones at all, but the inter-connective tissues hurt and the pain seemed to vibrate off my bones. There were other symptoms too, but I didn’t know that they might be related. So, I kept talking to the doctor and he kept sending me for tests and nothing ever showed it. It was very frustrating and went on like that for several years.
I got on the computer and started googling my symptoms and it kept coming up to fibromyalgia. Armed with this information, I went back to my doctor who pooh-poohed it. This is not an unusual reaction by the medical community, most of whom think that if there isn’t a test for it, then it doesn’t exist. But all the logical tests had been done and they all came back negative. Fibromyalgia is a disease that is usually found by ruling out everything else. So I begged to see a rheumatologist and when I explained my pain, my other symptoms and how foggy I felt much of the time, the rheumatologist concurred that I had fibromyalgia. Although having a diagnosis confirmed felt like a victory, it was not a cure. There is no cure at this time, and the best one can do is find a treatment that seems to work and stick with it. But I still wonder about being diagnosed with irritable bowel in my 20s and all the digestive issues that have followed; and I wonder if the depression came before fibromyalgia or if it is the fibro that causes the depression.
One of the worst aspects for me has been the fibro-fog. What is that? Some days my brain is so foggy that I can’t remember why I went to the kitchen (especially bad with 3 dogs following), I forget to buy things on my store list, and I feel like there is literally a pea-soup fog between me and the rest of the world. It is embarrassing when I cannot spit out my latte order in Starbucks, or when I get up to the counter and draw a blank as to what I was going to say. I notice when I am like this, people tend to ask me if I am “okay”, so it must be apparent to other people. This also seems to be associated with becoming clumsy and I can barely get out of my own way, lest I trip over my own feet.
The fatigue is equally annoying. There are days when my body feels so heavy and exhausted and I will fall asleep if I sit down. Sometimes my arms and legs feel so heavy, that it feels like too much effort to move them. Today was one of those days. I was working on my computer and the next thing I woke up with my computer in my lap and it was 2 hours later. And then after dragging myself around all day, I get into bed and sleep is impossible, even with sleeping medication. Last night, I was up until 2, then sleep came on suddenly and I woke up in my recliner.
Even though it’s a challenge, I am very fortunate to have what seems to be a light case. I have never felt the kind of pain that others report when the sleeve against an arm is agony and when a life is taken over by just coping with the pain. I know someone that spent 6 months in bed because between the fatigue and the pain, she couldn’t be out of bed. The world at large is not very sympathetic to a handicap that cannot be seen. We look normal and I know quite a few people that are harassed by their families because they don’t look sick, so add guilt into the already painful mix.
I was moved to write this as I am currently going through a light flare up. The main piece of advice I would give is that if you identify with the majority of the symptoms and have been dismissed by your doctor, don’t give up. You can get help, but you will have to be persistent.
Until next time, Elsie