I was diagnosed with fibromyalgia in 2001, a few months after my son’s 2nd birthday. If you don’t know what fibromyalgia is, let me give you a simple and brief description:
It’s an off-the-chart pain, akin to the sort you experience the day after being hit by a truck – all day, every day of your life. Severe muscle, joint and bone pain. Some people liken it to rheumatoid arthritis, but it’s worse, in my opinion. Arthritis is joint pain; fibromyalgia is systemic. Also, most fibromyalgia sufferers experience tremendous fatigue (exhaustion); their sleep is disrupted by the pain, and the subsequent lack of sleep prevents the muscles from resting, which exacerbates the pain, which exacerbates the sleeping problem. It is the very definition of a vicious cycle.
I’m posting this as a diary, as I don’t wish to take up valuable Front Page real estate; but if you’d like to recommend it, I wouldn’t mind…
(By the way, when I say “suffer,” I do not use the term lightly. It is one thing to have a headache; it is quite another to spend every day of your life with it.)
The symptoms of fibromyalgia have been reported by women for over a century. Until about 10 years ago, they were largely dismissed as psychosomatic. (Shocker, huh – widespread medical problems in women, ignored by the medical establishment.)
Yesterday’s Los Angeles Times featured a long article about fibromyalgia; no doubt millions of people living with the condition will be gratified to hear that not only is it not “psychosomatic” (“it’s just in your head”), it is a very real condition with definable features and symptoms and – hallelujah – treatment options.
You see, most of the time, if you happen to be lucky enough to find a doctor who will acknowledge that you have fibromyalgia (rough estimates put the number of MDs who believe it is an actual disease at 50%), you will spend months and possibly years on a variety of pain killers, arthritis medications, antidepressants and neurological medications (I was taking an absurd amount of Neurontin, off label, for over a year and a half, in addition to Oxycontin, Elavil and Trazadone). And none of it WORKS. So, basically, you spend your life not only in terrible pain, but drugged to the gills. In my case, I was a virtual zombie half the time, and the other half I spent in a near-comatose state of lethargy.
Here’s some of what the article in the LA Times has to say about fibromyalgia:
A groundswell of research has begun to expose the underpinnings of the baffling disorder that affects an estimated 6 million to 10 million Americans, most of them women. Not only do the findings have the potential to ease the condition’s stigma, they also may provide clues to other illnesses for which there is no clear clause.
Fibromyalgia, experts now believe, is a pain-processing disorder — arising in the brain and spinal cord — that disrupts the ways the body perceives and communicates pain.
“There was a time when it was thought to be psychosomatic,” said Dr. Robert Bennett, a fibromyalgia expert at Oregon Health & Science University in Portland. “We now understand the pain in fibromyalgia is an abnormality in the central nervous system in which pain sensations are amplified.”
Now doctors are more likely to acknowledge fibromyalgia as a real illness. Because patients are being diagnosed and referred to specialists more quickly, they’re finding relief, and acceptance, easier to come by.
Pharmaceutical companies have jumped on the new theory of the disorder too. The first prescription drug approved specifically for fibromyalgia will likely be approved late next year or early in 2007, and at least half a dozen pharmaceutical companies are developing other treatments. Meanwhile, the federal government is funding 10 studies of the disease.
“It’s very rewarding,” said Dr. Stuart Silverman, medical director of Cedars-Sinai Medical Center’s Fibromyalgia Rehab Program. “I was seeing patients before because no one else wanted to see them. Patients would tell me, ‘Everyone has told me there is nothing I can do.’ “
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Because patients often look healthy, doctors have sometimes diagnosed fibromyalgia as a muscle problem or an autoimmune disorder. It can also be a “wastebasket” diagnosis, attached to people with inexplicable pain problems. Some have even dismissed it as the complaints of emotionally troubled women.
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Coaches and trainers, alarmed at her use of painkillers, insisted she undergo medical tests. Over a year, Armistead saw numerous doctors but got no answers.
“Eventually everyone started doubting whether or not I was really in pain,” she said. “My coach couldn’t understand how I could play one day and be bedridden the next.”
Debilitated by pain and fatigue, Armistead quit the team and began to cut back on classes. She lost 35 pounds in eight months. It was a time in her life “so painful, I’ve tuned a lot of it out.”
In 1996, however, a doctor diagnosed her problem as ankylosing spondylitis, a type of arthritis affecting the spine, and fibromyalgia.
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Fibromyalgia is now thought to arise from miscommunication among nerve impulses in the central nervous system, in other words the brain and spinal cord. This “central sensitization” theory is described in detail this month in a supplement of the Journal of Rheumatology. The neurons, which send messages to the brain, become excitable, exaggerating the pain sensation, researchers have found.
As a result, fibromyalgia patients feel intense pain when they should feel only mild fatigue or discomfort — such as after hauling bags of groceries. They sometimes feel pain even when there is no cause.
“The pain of fibromyalgia is not occurring because of some injury or inflammation of the muscles or joints,” said Dr. Daniel Clauw, a fibromyalgia researcher and director of the Center for the Advancement of Clinical Research at the University of Michigan. “There is something wrong with the way the central nervous system is processing pain from the peripheral tissues. It’s over-amplifying the pain.”
Recent studies show multiple triggers for the amped-up response to pain. Fibromyalgia patients have, for instance, elevated levels of substance P, a neurotransmitter found in the spinal cord that is involved in communicating pain signals.
They also appear to have lower levels of substances that diminish the pain sensation, such as the brain chemicals serotonin, norepinephrine and dopamine. Growth hormone, which helps promote bone and muscle repair, is also found in lower levels in fibromyalgia patients.
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The “central sensitization” model of fibromyalgia may even be used to help explain and treat other chronic pain conditions that have stumped doctors, such as irritable bowel syndrome, chronic low back pain, interstitial cystitis and vulvodynia, Clauw said. All may be variations of central sensitization and the resulting imbalance of chemicals and hormones.
Although fibromyalgia is thought to affect mostly women, he believes many men are afflicted but are instead diagnosed with chronic low back pain.
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The article goes on to list various new treatments; it also touches on the continued resistance by many in the medical community to acknowledging fibromyalgia as a medical (rather than pathological or psychological) condition.
In my case, the fibromyalgia has become a fact of life; I abandoned constant drug taking as a remedy (because it isn’t a remedy – painkillers lose their effectiveness over a very short period of time and leave you with a physical addiction that can be worse than what you were treating – it certainly was in my case). Then I began listening to others with the disease/condition/disorder.
The vast majority of people I know who have fibromyalgia reported one surefire method of reducing the pain and fatigue: complete withdrawal from wheat and sugar. Another significant portion recommended eliminating all Aspartame.
First, I got rid of sugar and wheat. It was difficult, but within less than 2 weeks, I went from a 10 to a 7 on my resting pain scale, and within a month I was functioning between 3 and 5 – a fucking MIRACLE.
Gradually, after 6 months, I re-introduced both wheat and sugar – in small amounts – into my diet. While it didn’t have a terrible effect, I definitely noticed an increase in pain and fatigue when I had a cookie. However, it was manageable, so I allowed myself to indulge on rare occasions.
Earlier this year, my fibromyalgia went back into high gear. I eliminated sugar and wheat – but the relief was minimal. So I listened again: Aspartame had to go. After a good decade of drinking up to 6 Diet Cokes a day, I went cold turkey. And what do you know – within a couple weeks, the pain was lessened considerably.
Yoga is very helpful, though I cannot do it right now. Sometimes you have to listen to your body; if it protests vociferously when you do something – STOP DOING IT.
Walking is also VERY good; even slow, short walks help the muscles and joints to loosen up.
Lately, having become accustomed to spending 14-18 hours a DAY at the computer, I have – surprise, surprise – experienced a resurgence in pain. Since I am unwilling to abandon my efforts with My Left Wing, I am scheduled to see Yet Another Pain Specialist next week. I am not averse to taking the occasional pain killer to manage the pain; until recently, I had a prescription for just such occasions.
If I use it sparingly, a narcotic does the job; the problem arises when the pain is unremitting, and you find yourself taking painkillers every goddamned day. THAT is a wretched business, and not to be taken lightly. Hopefully the new doc will provide a treatment that involves more than a prescription for narcotics; beware doctors who do just that. I have a very good malpractice case against the one who kept shoveling more and more meds at me during my two year stay in hell; lucky for her, I am not the litigious type.
I hope this has been helpful to anyone out there suffering from fibromyalgia or unspecified/undiagnosed chronic pain. The same attitude exists toward it as still exists toward chronic fatigue and Epstein-Barr; if they can’t figure it out, they treat YOU as if you’re crazy, instead of merely acknowledging that perhaps they still have more to learn.
If you experience chronic pain, be assured: you are probably not imagining it — that is, unless the chronic pain is accompanied by visions of little green fairies – and even then, I wouldn’t be too sure it’s your imagination…
