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What Your Doctor May Not Tell You about Pediatric Fibromyalgia
By R. Paul St Amand iPublish.com
Copyright © 2001 R. Paul St Amand
All right reserved.
Why We Focus on Energy and Where Did My Energy Go?
These are my symptoms in order of severity: extreme fatigue (sometimes I can hardly get out of bed). Sleeplessness and unrested sleep (no matter how much I need sleep-I sleep, wake up, sleep, wake up, et cetera all night). Feeling disconnected from my body, like I'm in a dream (this often scares me). Weak legs that feel heavy (it feels like I'm carrying something heavy in my hands and my legs are heavy). Neck, shoulder, and upper and lower back pain. Stiffness (mostly when I first wake up). Stinging, burning eyes. Pain around my eyes that feels like a sinus condition. Pain on top of my head. Forgetfulness. General achiness all over (I just feel like I'm sick). Tearfulness (because I feel so badly and I don't know what is wrong). -Marcia M. Los Angeles, California
WHY FOCUS ON ENERGY?
If you have fibromyalgia, you know there's much more to it than just muscular pain. Most people with fibromyalgia agree: "If it were only the pain, I could probably muck along somehow." It's the unrelenting adding and shifting of symptoms that eventually get you down. Headaches, brain fog, constipation suddenly yielding way to diarrhea, depression, backaches, anxiety, insomnia, apathy, or bladder pain-you neverknow what tomorrow will bring. And we're ignoring the oppressive fatigue. Oh yes, the overwhelming drop-dead fatigue that makes you feel like you've got to lie down when you're already lying down! Awful by itself, exhaustion on top of everything else that's wrong can make it impossible to cope with all of your other symptoms.
Most research and practicing physicians don't appreciate the extent of this total-body disaster unless they have fibromyalgia themselves. When we speak to patient groups, we quickly get their attention by letting them know that we have it, too, and will never forget its punishing ways. What's it like? Fibromyalgia affects every cell in the body. Perhaps your doctor doesn't quite realize it, but you know it. All the time every minute of the day or night, something is wrong somewhere.
Every fibromyalgic senses that his or her body just isn't right- sometimes each and every miserable part of it. Hair and nails don't grow without breaking, there's pain in strange places that can move around hourly, menstrual periods aren't regular or suddenly cause cramping, there's debilitating fatigue, devastating headaches strike without warning, stamina is nil, sugar cravings are overpowering, and the resultant weight gain is depressing.
Physical complaints: debilitating exhaustion, severe muscle pains (especially shoulders, low back, neck, legs, arms), severe joint pains (shoulders, feet, hips, ankles, fingers), headaches (starting from the shoulders, up through the neck & around to front and sides of head), sore throats, swollen glands (neck, underarms, breasts), nasal drip, water retention (worse than usual), clogged ears (for several hours at a time), worse allergies than usual, hypersensitivity to bright lights and loud sounds, low-grade fevers, feeling hot, flushing red face, insomnia: 1. difficulty getting to & staying asleep 2. sleeping too long or too little 3. no matter how much sleep not rested, mental disorientation (difficulty concentrating and remembering), agitation, irritability, depression, frequent tingling/numbness in extremities (hands, feet, legs), extreme discomfort when lying or sitting in one position for long (legs, arm pain), nausea, dizziness, back-to-back vaginal infections, some bladder infections, vaginal irritation and tears, pain with intercourse, weight gain (approximately 15 pounds), feeling hunger pains and ill (after only a couple of hours of not eating), mild gastro problems (bloating gas, mild diarrhea, and occasionally constipation). Duration: 8/1999 to present. Became critical 4/2000. -actual patient intake form
Most fibromyalgics have been conditioned to believe they're hypochondriacs and are perhaps stunned by the sheer volume of their own complaints. Then there's that certain look physicians sometimes give you during your symptom recital.
Yet many fibromyalgic patients are among the most stalwart people we've met. For your vindication, published studies seem to bear this out. If you do a Medline search, you can read them for yourselves. Patients with chronic illnesses rate fibromyalgia more debilitating than rheumatoid arthritis. Many of our patients who have gone through cancer treatments say that, though they were challenged, frightened, and mentally and physically distraught, fibromyalgia, overall, is worse. Fibromyalgics keep telling their doctors the same story.
They don't have enough stamina to get through the day. That one deprivation is more frustrating than their pain. "No, Doctor, it's not mainly the pain that brings me in, though it would be nice if you could make it go away maybe just for an hour or two." They're usually too shy to add, "Please don't give me drugs that shove me deeper into my daily stupor. I'm really here because I'd like at least enough energy to start thinking clearly again."
Part of the problem is that all the parts of your body still work, but not at all well. You can walk, but not very far, and you certainly can't run. You think, but not very clearly. Obviously you remember your name, and what year it is, but your short-term memory can be very bad. You walk into a room and forget why you went in there. Maybe you can fall asleep, but then you wake up a lot and then lie there counting the hours as they tick by because you can't doze off. You may not be going bald visibly, but you're concerned by the poor quality of your hair and that it sometimes comes out by the handful.
Your skin has patchy areas that have bumps or rashes of all descriptions. You get frustrated because you've always got a bunch of nagging complaints that don't seem connected. Oh, but they are! If you stop to think about it, what could the common denominator be for all these complaints? You should have no problem believing us when we say your body and its assorted parts just can't make enough energy.
Don't think in black and white. Certainly your body can make energy, but it is either not doing it well or doing it barely enough to keep you alive. As a result, you have limited stamina and feel older than your ninety-year-old antiquarian aunt. Every cell in every system is functioning only marginally-just hanging on. On the rare occasions when by sheer willpower you force them into working full blast, you'll collapse and pay for it for the next several days.
Since so many different tissues are affected, you find yourself vulnerable and susceptible to various pitfalls. Once fibromyalgia takes hold, people seem to suffer from more allergies and catch infections as though bidding every bug welcome.
Heightened symptoms occur from odors, light, and sound, especially in women because their senses are already keener than men's. Even minor things like colds seem to take forever to heal. The reason is really quite simple: Recovering from such things takes energy. When you're one of those fibromyalgic people, where do you think you're going to get this? After all these years, it's already perfectly clear to you that you can't make enough energy. In the beginning, the body robs Peter to pay Paul, but poor Peter is already in trouble, and beaten-down Paul can't begin repaying the debt. There are simply too many health problems all sucking on a very limited supply of energy.
People can't understand what having fibromyalgia feels like.... I finally came up with a combination of things anyone can understand. I tell them to imagine they have the flu and their belly is achy with gas and their head is pounding. Add to that they have not been able to sleep for a while and last night they didn't get any sleep at all so their mind is not working well. You also don't know when you're going to get any sleep. Now they have to imagine that they were in a car accident and their whole body is stiff and sore. Next I tell them to imagine they have cinder blocks tied on their neck, waist, arms, and legs. Put all these things together at once and stay that way day and night for years. This is what fibromyalgia is. This is what I feel like all the time. -Shirley B., Louisiana
In this chapter, we'll get into some details about the body's energy-production mechanisms. Most fibromyalgics have already heard a lot of technical jargon and too much mumbo-jumbo over the years. Every doctor seems to have a theory about what causes the illness, and you've heard of so many off-the- wall so-called cures. Your friends may beguile you with legends about a mountain-climbing former sicko who got well eating Brazilian jungle weeds. Your family cuts out articles from local papers and showers you with anecdotal tales they've heard from the cousin of a friend. You, too, have read and been told a lot of different things. What can you believe? Why us instead of them? Let's start at the beginning, then, and try to explain some basics to lead up to our solution for your problem.
It seems logical that you should first understand what we think is assaulting your system before you accept our challenge to combat it.
I believe that I am functioning at about 50 percent of average capacity. I find holding down a part-time job extremely challenging. I am also having difficulty maintaining my weight and do not sleep well. I believe that the fatigue has become progressive. The pain has become less acute but it has spread-that is, it is no longer localized. -Sandra E., Los Angeles, California
HOW DOES THE BODY MAKE ENERGY?
It's much easier to understand what's gone awry if you first grasp how your body makes energy. The first thing that's needed is fuel, and our cells grab up bloodborne molecules derived from what we eat in order to make it. Not all foods are treated equally by the body, and their energy values are quite different.
But basically, after digestion, breakdown products surge through the system. Cells take what they need and direct this fuel to all kinds of hard-laboring enzymes. Various internal compartments process each remnant into usable snacks that are resurrected as energy. Huge amounts of high-energy phosphates are also extracted and wedded to certain proteins that should ideally empower anything your body wants to do. All of this happens in thousandths of seconds, staccato like, until all required tasks are completed. When an obstacle springs up anywhere along this series of biochemical steps, however, you simply cannot produce the energy you need.
We use 10 to 20 percent of our foodstuffs to create the supportive structures of our tissues. These become the fabrics that hold us together and contour our individually unique external appearance. Other frameworks shape the internal organs that we can easily identify at a glance. The millions of cells within those organs must have walls that allow them to lean on their neighbors for maintaining their relative positions. Ever smaller, often submicroscopic membranes define compartments housing the metabolic machinery inside those cells.
There are even filament like highways where traffic moves along prescribed routes to deliver basic materials or finished products to and from those minuscule factories. All this fundamental construction work is needed to allow even the tiniest amount of movement. It also creates the dimensions enclosing billions of minuscule metabolic factories that seize the energy stored in the remaining 80 or 90 percent of our foods.
To me pain is such a subjective experience that it's often difficult to know for sure whether I was feeling better or not. For a long time, observing the state of my kitchen was the method I used to tell how I was feeling. My kitchen had been in a constant state of turmoil (not to mention the rest of my house) for two years before I started the protocol. I was too tired to wash up after dinner, load and unload the dishwasher, et cetera. The sink and the counters were always cluttered with dirty dishes, and it seemed like the wastebasket was always full. Not a pretty picture. After a few months on guai I actually had the energy to take care of all those little tasks and clear my sink and counters. From then on, I used the state of my kitchen as a gauge-clean and tidy meant I was feeling pretty good ... dirty and cluttered meant I was cycling hard. Now after three years, my whole house gets cleaned.... -Nancy B., Cleveland, Ohio
Like humans, all living things-plants and other animals- gobble up energy at a furious pace. Luckily for us and thanks to their chlorophyll content, plants can make their own energy directly from sunlight. They extract carbon dioxide floating in the atmosphere, much of which was exhaled by humans and the animals. Chemically trapping this simple gas, plants convert it into various carbohydrates. Thus, plants are the source of the sugars and starches that will, in turn, nourish the animals that consume them. It's a great relationship-at least for us at the top end of the food chain!
Humans generally don't eat only plants, though. We also eat other animals, a trait we share with them and with only a few carnivorous plants. Though it's a rather barbaric system, the benefits are positive for our survival, albeit one-sided.
We're therefore blessed with two food sources, vegetable and animal. The latter provides most of our protein needs and the former, carbohydrates and fiber. Both are sources of fat. All our energy for motor activities, thinking, breathing, and healing comes from our successfully preying upon the other inhabitants sharing our planet. Let's look more closely at how our bodies convert these once living tissues into power. Remnants of the three basic fuels-that is, fat, carbohydrate, and protein-are fated for destruction in energy-generating plants inside each cell, known as mitochondria.
Every cell in the body has multiple generators and, depending on the tissue, may be quite densely populated with them. Here, wonderful concoctions are derived from the energy stores that nature instills into our foodstuffs. Gear like enzymes working within the mitochondria process and restructure whatever is needed. Waste is produced but is expediently disposed of as two simple residues: water, and the gas carbon dioxide. From these magical activities, the currency of energy, adenosine triphosphate (ATP), is born.
The industrial prowess of a cell is second to nothing else we know, and it certainly meets strenuous demands. There is unrelenting wear and tear, much like what occurs with human-made machinery. As a result, a constant regeneration process goes on day and night. Essential chemicals must be imported for this reconstruction.
Excerpted from What Your Doctor May Not Tell You about Pediatric Fibromyalgia by R. Paul St Amand Copyright © 2001 by R. Paul St Amand. Excerpted by permission.
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