Wednesday, September 25, 2013

[Personal Stuff] Fibromyalgia and Chronic Fatigue Syndrome, the myths and misconceptions.


We all run into them - the people who feel they know more about our disease than we ourselves do; the people who lecture us. Sometimes they have something useful to offer, but unfortunately, most of the time they're just repeating "common wisdom."

The most common misconception about fibromyalgia is that it isn't a real condition; that its just something doctors label a bunch of symptoms when they've run out of things to call it. It's very much a real condition, it's not in our heads, and it does have a group of symptoms that identify it as such. Fibromyaglia is a neurological disease and has been shown to very much exist via brain imaging.

The problem, really, is that people think there is a cure for everything; if your doctor can't give you a pill, cut it out, or solve it with a few shots, then it must be in your head. It's not. Just because a disease hasn't been identified (and in this case, fibro has been), doesn't mean it is any less real.
Most commonly in people with fibro, their brain, spinal cord, and potentially the whole nervous system, processes pain differently than those that don't. People with fibro are more sensitive to touch, pressure and pain. No one's body is the same day in and day out, which is why some days are worse than others. You may be fighting off a cold, you may be tired due to lack of sleep, a whole host of things could make it worse and on the flip side, an interrupted night's sleep (I'm told!) makes things a whole lot better. Some days wearing clothes is like sandpaper, other days I could probably wear sandpaper. (Okay, maybe not.)

Another problem is that a lot of people if fibro people just change their diet, their problems would go away. Now, considering that a lot of fibro patients also have issues with their thyroid and should avoid soy, and dietary auto-immune issues like celiacs, its understandable how people could come to this conclusion. Thyroid issues and fibro could very well be related, I know when my thyroid is being grumpy, my fibro is too. However, cutting coke, or coffee, or corn, or whatever, out of one's diet isn't a miracle cure. Certain things help for certain people, but they only help, they don't remove the base problems. In my case, I avoid dairy and gluten and keep fats such as eggs or peanut butter to a minimum and I do as well as I can. Fibromyalgia is not an autoimmune disease, even if it is linked with them.

A lot of people seem to think fibro patients are just fishing for sympathy and are malingerers. The truth is, most fibro sufferers wait over three years before they start talking to a doctor about their problems, often working long past the point where they should have stopped. Its so ingrained to us that anyone who doesn't work is a lazy slob who is worse than the worst does not help. There is a point where one has to say "I need help," but the perceived judgment of friends, families and coworkers make it so very hard to get to that point. Typically, its not until everything completely unravels that a patient seeks help; and then you're stuck trying to rebuild from the bottom of a very deep hole instead of just from halfway up.

Fibro doesn't affect just middle-aged women, it affects men, women and even children. Yes, the larger percentage of sufferers seems to be women. Partially, that's because men don't tend to suffer from all "11 tender points" like women do. Children who suffer "growing pains" are often suffering from fibro or fibro related symptoms, but what pediatrician would think to look for it? Its not until recently the links have been made.

People with fibro aren't being weak, they aren't being malingerers, they aren't just trying to get a free ride. Most people will understand when you talk to them about it, are willing to hear your experiences and why the myths are myths, but if you get one of those right winners who say things like "Geez, the guy only lost a leg, he could get a job!" don't bother, just keep walking. They're too wrapped up in themselves and their own world view to constructively listen. They made up their minds long ago, and some battles just aren't worth fighting. Find your friends, hug your friends, and appreciate that not all of humanity are buttheads who'd rather believe a convenient lie than an inconvenient truth.