Fibromyalgia has always been one of those "nobody understands it, nobody can cure it, mostly it's untreatable" kind of diagnoses. So explaining it to people has always been a chore. So difficult, in fact, that I usually don't bother, and then they wonder why I sometimes just don't get things done.
Eczema is better understood. It's an overreaction of the skin to imaginary or minor stimuli. For Daniel, his skin looked like it had been burned and was as itchy as poison ivy rash if he touched clothes that had been dried with average, run-of-the-mill dryer sheets.
Asthma, closely related to eczema, is the same kind of overreaction, but of the respiratory system.
Allergies, closely related to asthma, are the same kind of overreaction, but of the body's histamine system.
Fibromyalgia is the same kind of overreaction, but of the body's nervous system. All of it.
For example, everyone gets a sore bum from sitting on a folding chair for several hours. I get achy and sore from sitting on a folding chair for five minutes. It's like my nerves send the "it's hard" signal to my brain, and my brain says "It's HARD. I can't sit there. I'm dying!" Overreaction.
Lots of the symptoms of fibro can be explained this way. Look at Devin's Diagnostic list and you'll see what I mean.
Most people get tired if they hold their arm straight out for ten, fifteen minutes. I am in agony after about ten, fifteen seconds.
Caleb and I both can't stand to watch movies or read books unless we know the story (at least the ending) beforehand. What comes out as intrigue, intensity, or touching, emotional situations for most people is unbearably intense for me and Caleb. Unless we know the ending is happy, the emotional overreaction we have to the situation isn't worth it. Caleb handles it by running, crying, or turning the TV off. I've learned to enjoy movies second-hand and read only non-fiction unless someone can tell me the ending first. I read the last page of murder mysteries right up front, right after the first chapter, because otherwise my brain overreacts to the story, putting my body in an uncomfortably tense, fight-or-flight kind of response to the words.
People with fibro tend to cry easily. Overreaction of their brain and emotions to the situation, usually.
Caleb actually verbalizes this overreaction sometimes. Yesterday he said, "If my teacher doesn't call on me next in this class, I'll shut the computer down and never do school ever again ever!"
You see? Every kid feels put out when they don't get called on over and over. Caleb thinks it might just be the end of the world. Or at least his ability to handle school for the day.
The overreaction leads to hypersensitivity to light. What is comfortably bright to you is like staring into a lightbulb or the sun to me. Multiple bright lights lead Caleb to complete, whole-brain overstimulation so that he ends up running around in circles and literally bouncing off the walls unless we can get him focused on something calming--like playdough. It also leads to the characteristic hypersensitivity to smells (your body says, "Oh, perfume!" My body says, "AACKK! Poison! I'm going to die! Close the airways, quick!"; your body says, "somebody burned the dinner," my body says, "throw up now.") and sounds (what is moderately loud to you is agonizingly loud to me--it doesn't just hurt my ears, though. It puts my brain into panic mode, so that I can't think and emotionally start into the same response Caleb expresses by running through the house) and other sensory stimulus. (This has led some of our friends to wonder whether Caleb has a sensory integration disorder, but I don't think he does. It would be the sensory equivalent of multiple personality disorder and schizophrenia--easily confused on first glance, but opposite disorders in many ways).
The inexplicable moodiness and irrational irritability characteristic of fibro, as well as the tendency to suffer from anxiety and depression, are the same kind of overreation. What might put you out for a minute might ruin my day, despite my best efforts for it not to. Someone kicks your ankle and you say, "ouch." Someone kicks my ankle, and I'm miserably angry for an hour and have to consciously relax my body and force myself to calm down. And it's not just that it hurts. It's that my body overreacts to hurts. If a sad thought occurs to me (like "someday Tim might die"), I cry. And worry about it for hours. These kinds of thoughts occur to everyone. I just overreact to it and have to decide not to let it take over my brain and emotions.
I spend quite a lot of time during the day calming myself down, staying calm, and reminding myself that "it's not real"--whatever is bothering me isn't as bad as it looks. This ISN'T a psychiatric disorder. This is part of fibro.
The overreaction explains the fibro body's sensitivity to sugar and blood sugar swings, too. Blood sugar spikes put the body on a physical and emotional high, followed by a crash. People with fibro do so much better with everything level all the time. Otherwise, what makes your body say, "Take it easy" makes their body say, "You're killing me!" A blood sugar spike is easily misinterpreted by a fibro body as a feast and then a famine (so store up some fat for next time!).
I could go on and on, but you get the idea.
Explaining it this way has opened up doors of understanding for me about myself and my son.
Explaining fibro to Caleb, though, has taken some careful thought on my part. A few weeks ago, I was talking to him and he said, "I know. My brain doesn't work right. I'm just a little bit crazy." It broke my heart. My six year old isn't even a little bit crazy. And I don't want him to grow up thinking he's weird or broken. I didn't want him to feel like he can't or shouldn't do anything. I want him to feel normal and try everything and then deal with life, not run from life just in case it might hurt or be hard. So I sat him down and explained that he probably has a hypersensitive nervous system. I told him this is like a superpower--he can probably enjoy softer sounds than most people, probably gets more pleasure from color and sights and gentle scents and soft touches than most people, probably can see better in dim light than most people. It also means that the opposite is true, but we didn't dwell on that. I explained ADD in the same way (since he likely has that, too)--his brain has a special ability to think many thoughts at once, and to skip from idea to idea quickly, and think of new things in new ways ("think outside the box"). That means he might have to take medicine some day to help him stay focused when it's time to stay focused, but it also means he'll probably create wonderful ideas in his life. When we got done talking, he said, "Do I have both?" I said, "Maybe." He said, "Oh."
Later, I heard him tell Anda, "Mom says I'm extra creative." He was bragging. I was glad.
1 comment:
I am also one of many people suffered much pain of Fibromyalgia. I went from doctor to doctor to look for answers regarding my condition. It's really difficult to lead a normal life having this kind of illness.
I just want to give additional helpful information for all fibromyalgia sufferers.
Fibromyalgia is a condition where you feel chronic pain in certain parts of your body; it is a muscular pain especially around the joints. There can also be centralized pain felt in the spinal chord, brain, neck shoulders etc. People with fibromyalgia generally complain of pain in the joints, but it actually is the muscles and the tendons around it that cause the pain, it can be excruciating sometimes and can be a continuous throbbing pain. People suffering from Fibromyalgia also show symptoms of depression, sleeplessness, irritable bowel syndrome, stress and many others, which are caused due to the pain.
Rid Fibromyalgia provides a simple process to helps you eliminate all your symptoms of fibromyalgia and enjoy living your life again. This will provides us the best and most effective solutions on how to rid ourselves from pain.
The Rid Fibromyalgia provides an eBook entitled “Heal the Body” that will teach you the best diet that will allow you to eat your way to wellness, it will also document which vitamins and supplements will target and reverse the illness, how to achieve pain relief through acupuncture, what exercises are safe and will work, and what type of medications may make you sicker, and what will work. This eBook takes a step by step approach in showing you how to rid yourself of the pain naturally so that you can take back your life.
We must know the symptoms of this illness. For us to know what would be the approach we will going to apply. Here's Signs and Symptoms of Fibromyalgia and steps to treat it naturally.
We must also be responsible and aware to the things to gain and cope up with this kind of illness. Eating nutritious food with regular exercise would be result to a better life. Here's Basic Tips in Coping Fibromyalgia.
If we say Fibromyalgia Diet, there is no specific recommended diet for fibromyalgia. But a healthy diet rich in vitamins and minerals can certainly help in coping with the illness. Magnesium rich vegetables are recommended for patient's suffering from fibromyalgia. Here's some information for you to help in Fibromyalgia Diet.
We must also think that vitamins are important for Fibromyalgia sufferers. This will give us additional energy and strength to kept a healthy living. But of course, you must be aware that not all vitamins are effective or directly gives you a good result. Find the best vitamins that would easily give a good response if your taking it. The best thing is your healed and keep your body healthy as possible. Here's The Benefit of Vitamins for us to know why vitamins are important for fibromyalgia sufferers.
Also feel free to view this video Fibromyalgia Help. It really gives good information for those who have Fibromyalgia and encourage not to give up because in every pain your getting through has a good solution in the end.
Here's Rid Fibromyalgia, For free info and helpful articles on fighting fibromyalgia.
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