A rare disease is taking a huge toll on me, with no end in sight.
Many days I can’t even get out of bed, and the pain is unbearable.
The doctors agree it’s likely this rare disease with no known cure.
Fibromyalgia? It can’t be that, I’m a man.
I grew up in a John Wayne household. Not only did we watch EVERY John Wayne movie (I still do) we also lived a “John Wayne” life.
Fibromyalgia, a chronic condition that causes intense feelings of pain, can present with headaches, and affect sleep to the point that the foggy, dreamlike feeling, as well as the tiredness, can be due to severe lack of sleep.
I’ve also been told I probably have myalgic encephalomyelitis, or M.E., commonly known as chronic fatigue syndrome. M.E. is linked to that general sense of exhaustion and dreamlike state, as well as the memory issues and disorientation.
While listed as two separate diseases, my doctor believes, along with many others, that one is merely a symptom of the other.
Fibromyalgia is rare enough, but not uncommon: there are currently some 5 million people in the United States with the condition.
The cause of fibromyalgia is very controversial and not well-understood, some more recent studies suggest that it can be caused by some form of muscle trauma, while other researchers speculate that it is caused by issues with the body’s regulation of blood sugar.
The disease got some press recently when Lady Gaga announced she has fibromyalgia.
Yet much of the conversation has been driven by women.
And that’s where the problem comes in.
Fibromyalgia is a “woman’s” disease.
In fact, only 10% of all cases are male.
I am one of that 10 percent.
That makes it all the tougher.
Some of my doctors scoff at the diagnosis. And treatment is all but impossible.
There is no real treatment, some doctors give anti-depressants, some give pain meds (not as prevalent now due to the opioid problem).
Some do various drug cocktails, and some go strictly holistic.
I’ve been told CBD will be helpful but as of now, it’s still illegal in my state (that is changing later this year).
Some doctors stress sleep, a healthy diet, and exercise.
These all sound great but it’s hard to go for a run, or even a walk, when your head hurts so bad you can’t see, and you fall down unexplainably because your leg gives out, or you get so dizzy and disoriented you can’t even figure out where you’re going.
The other problem with fibromyalgia and similar diseases is that on the outside you don’t look sick, you don’t sound sick, no fever, no cough or congestion, just the pain.
I am still early in the process, I’ve tried a number of different things, and nothing has taken so far, although a two week dose of heavy duty steroids helped a lot.
There are some good days, but none without pain, exhaustion, and confusion.
It’s painful to hold a glass of water or a cup of coffee.
Forget any romantic evenings with my wife, or long walks with the dogs, and the simple task of getting the mail can ruin my day.
Mr. Lyon in his book “Carnivore” sums up how I feel at this stage with these words:
“The basic fact remains that there is no cure for fibromyalgia, and a reliable treatment is still a long way off. There are so many people whose lives are destroyed by it, and by M.E. – but these diseases still receive almost no research funding and don’t have the level of cultural recognition that they ought to have. Hopefully, someone as famous as Lady Gaga can help to raise awareness around it, but it is largely an invisible epidemic — and as a man, I’m an invisible demographic within an invisible epidemic.
“One of the worst things about fibromyalgia isn’t the physical pain, but the emotional pain of loneliness and isolation. Writing my novel Carnivore was an attempt to bring visibility to this invisible epidemic by trying to find beauty beyond the pain. I hope I can find ways to feel less isolated, but I suppose it will take a long time. And in those fleeting moments when I am writing or exercising, for just a brief moment I feel some control over my own illness — and in those moments, I feel no pain at all.”
I will be writing more on this as I continue the journey, next week with two new doctors and more tests.