Since this is a DDO blog on the MyDDO site read by DDO players, I mostly try to keep my posts DDO-related.
Today, though, is kind of special for me. May 12, 2011, is National Fibromyalgia Awareness Day.
Like chronic fatigue syndrome, which it resembles and is sometimes confused with, fibromyalgia is somewhat of a medical mystery. So far there are only theories as to what causes it. And like CFS, many people – that is, the ones who’ve actually heard of it and have a vague idea of what it is – aren’t sure it’s real.
Trust me. It’s VERY real. I was diagnosed with fibromyalgia about five and a half years ago following a car accident. I suffered a concussion and neck injuries in the accident, and weeks later I was still excruciatingly tired and weak, often with severe, unexplained pain.
I’d never heard of fibro at that time. At first I just chalked it up to the aftermath of the accident. Luckily for me, my neurologist was smarter than that. I couldn’t understand why he wanted me to be tested for all kinds of things, but he suspected long before I did that what was going on didn’t just stem from the head and neck injuries.
There’s no conclusive test for fibro as of yet. Instead it’s referred to as a “diagnosis of exclusion” – since doctors can’t test for the presence of fibro, they test for other things that are similar to rule them out. Lupus, Lyme disease, chronic fatigue… I can’t even remember them all. There is a pressure point test that definitely helps indicate the possibility of fibro, but it’s not infallible; it basically consists of the doctor poking you on various known sensitivity spots to gauge your pain reaction.
Fibro, like many things, affects different people in different ways. Pain seems to be the big issue for many people. I’ve been lucky there; don’t get me wrong, when I have a fibro flare-up, I HURT, and badly. For me, though, the worst thing is the fatigue. I can’t even begin to describe it. “Exhausted” isn’t nearly strong enough to depict how I feel when it’s bad. Imagine lying in bed with a glass of water on your nightstand and being so utterly, completely drained that you can’t reach out your arm to pick up the glass and drink.
Before the accident, I was the assistant sports editor at a daily newspaper. That meant covering a LOT of high school sports events. Many weekends found me camped at one tournament or another from 8 or 9 in the morning until 10 or 11 at night, then going back to the newsroom to finish writing my stories, editing others, picking out photos and writing cutlines, laying out and proofing pages – I rarely worked less than 60 hours a week, and during busy times, often closer to 80.
That changed as fibro took over. Sitting on bleachers for any length of time is excruciating for me. Not to mention the fatigue – I literally couldn’t keep my eyes open for more than a few hours. Fibro wreaks havoc with a normal sleep schedule. It makes you tired as all hell, but when you try to sleep, you can’t. You lie there WISHING you could sleep. Being able to fall into bed and get my eight hours is something that rarely happens now. I’m up for a few hours, I take a nap, I repeat.
Naturally this caused problems for me at work, especially in the first few months after the accident when I was still having serious short-term memory issues. I’d be talking and in mid-sentence, completely forget what I had just said and what I was about to say next – NOT good when you’re interviewing the star player after the game and forget what you’re trying to ask him/her.
The newspaper I worked for underwent a merger of sorts a few months after that. New management came in and made wholesale personnel changes. I was surprised to survive the first two cuts but found myself out of a job on the third. I ended up getting a job as an editor/fact checker for a small publishing company, with a 40-hour work week. It was about this time that I really, REALLY started to feel what a long-term impact fibro was going to have on me. The fatigue just kept getting worse. I went down to 35 hours a week, then 30, and finally 25, which was the least weekly hours the company allowed. As much as I needed the money, it was almost a relief when a new manager took over and laid off about one-quarter of the employees, including me.
Having that editing experience is very lucky for me, because with print newspapers in decline and looking for ways to reach out to a virtual audience, telecommute-friendly editing jobs are slowly starting to pop up. I was fortunate enough to find one, so I can work at home in my jammies and set my own hours. The money is not great and things like office politics exist even for virtual jobs, but at least it’s something.
Not everyone is so lucky. Many fibro patients end up having to go on disability; my neurologist has already offered to give me whatever paperwork I need from him should I ever go this route. I know one girl who suffers from such intense pain that she has to have a special custom-made mattress; even the slight pressure of lying on a regular mattress is agony for her. One of my DDO friends has been on disability for several years; it’s such a relief sometimes to be able to talk about what I’m going through with fibro to someone who knows EXACTLY what I mean.
One of the commercials for a fibromyalgia drug claims that fibro is believed to be the result of overactive nerves. My neurologist disagrees; he has a theory, since fibro often follows head and neck injuries such as what you might get in a car accident, falling of a horse, etc., that there is an as-yet-unidentified virus for fibro that lies dormant until something triggers it. That would be something like shingles, where you develop the virus after having chicken pox, but in most cases it never develops. He thinks that head and/or neck injuries may serve as the trigger for the virus to become active. My DDO friend with fibro has heard this theory as well; in fact, he told me there are doctors in Europe who have identified not the actual virus, but a kind of viral signature.
Pain and fatigue are probably the two things you’d hear most if you asked fibro patients about the biggest challenges they face. I would disagree, though, and that’s why I’m posting this very non-DDO post on my DDO blog. By far the BIGGEST problem I’ve faced is that people don’t understand what fibro is and what it does. In some ways that can’t be changed; if someone had tried to tell me about fibro before I was diagnosed, there’s no way I could have truly understood the effect it has on life.
But there’s a difference between not knowing what it’s like and not believing that it’s real. And that’s the worst thing I’ve had to deal with. Bosses who don’t understand that no, I CAN’T work a 12-hour day. A mother who only wants to hear about me feeling bad if she can turn it into attention for herself – “Oh, your back hurts? Well, MY back just hurts SO much.” A father who doesn’t want to hear anything about it at all; in going on six years of me having fibro, he’s asked me about it ONCE, and that was because his diabetes doctor mentioned it to him as a possible cause of his tiredness. Friends who think I can take a Tylenol and drink a cup of coffee and be good to go. Doctors who – despite overwhelming evidence otherwise – still think it’s psychosomatic and dash off a prescription for an antidepressant instead of trying to find other treatments.
Not that antidepressants aren’t helpful; it’s just that too many doctors seem to think fibro is just some kind of manifestation of depression. I’m very lucky to have gotten one of the exceptions. While he did prescribe antidepressants for me, he first called me in to make a point of telling me that what was going on was NOT in my head and that the drugs would NOT help with the pain and fatigue; the prescription was to help me deal with the symptoms, not to treat them.
If you’ve made it all the way through this post, there is one thing I would ask of you. If you know anyone who has fibro, BE SUPPORTIVE. I guarantee you that they’re getting a LOT more flak than support, and it’s a tough enough thing to deal with on its own without all that. Don’t question why they’re tired or tell them things like, “But you don’t LOOK sick!” Don’t think they should suck it up or snap out of it – believe me, I’ve tried and I can’t. And don’t be overly sympathetic; it’s not special treatment we’re after. Remember it IS real, and it IS painful, and it is VERY hard to deal with. By just being there, you can do more good than you know.