Fibromyalgia Controversy

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THE FIBROMYALGIA CONTROVERSY

Prometheus Books

Chapter One

ANNA

Hello! My name is Anna.

I'm forty-five years old. I was born in the South. I never knew my father. I hold but the vaguest memory of a man in the house when I was very young. If that were my daddy, then my mom never told me so, and I chose never to ask her. My mom has been ailing all my life, and I don't know for how long 'fore that. Seems to me, most of her life, she's just stood in bed.

I started to earn when I couldn't have been more than six-running errands, fetching, and carrying. All I earned went into the earthenware pot on the kitchen dresser. I never spent a penny on myself. My clothes were all hand-me-downs from neighbors or charity ladies or maybe some of them were relations. It was never explained to me-I suppose they thought it were none of my business-when all was said and done, I was just the kid who got to wear them, and it truly weren't none of my affair who'd worn them 'fore me.

I did go to school. But they never learnt me much. My fault I'm sure. Not theirs. I spent too much time in the junior grades thinking of food and too much time in the middle grades thinking of when was a boy gonna get me out of there-and which boy would it be?

Well, I got out thesame way as most of the girls. Going to have a baby 'fore I was seventeen. I didn't give too much thought to how I'd manage to feed him and clothe him-I just knew he'd be a boy-but I so much wanted to have something to love that'd be my very own.

I left school. My boy was taken away from me. They let me see him and hold him for a few minutes-and then no more. Where he is now-who he is now-I have no notion.

Without a school-leaving certificate, all you can get is minimum-wage work. And with minimum-wage work, some days they offer you work, an' other days you're told you're not needed. So you get two jobs to make sure you got one.

I did get married. Same trouble as the last one. He seemed kind, Joseph did. Probably he was. But three babies in thirty months was too much for him. I never heard from him after the third one was on the way. He went to his work one December morning, and I never saw hide or hair of him since.

So what with never knowing I was going to get work or be sent away, and what with the cost of my mom's medicines and the three children's care, I took three jobs to make sure I had one.

P'raps it was really because I was a good worker, like they said, or more like they couldn't get no one else-even the illegals were in short supply! Anyways, my three jobs to make sure I had one turned into three jobs most all the time. Working seven by fourteen I was, and sometimes sixteen. Not surprising I felt tired all the time, even though I fell asleep the moment my bed saw me.

And then I was aching. The muscles at the top of my shoulders and back of my neck were what I noticed first. Not surprising, stooped like I was cleaning bathtubs for seven hours at a stretch. Got my friend to massage them-don't misunderstand me. Nothing like that. Nothing so interesting! She did the vacuum, I did the bathtubs.

But I couldn't sleep proper-not like I didn't try. Not like I didn't fall asleep and dream about bathtubs. That I did! Tossed and turned all night dreaming about those grimy bathtubs and sodden towels all over the tiled floors. But come the morning, I felt like I hadn't been to bed at all. Just as tired, aching just as much, and so stiff I could hardly get out of bed. Mind you, my mattress was secondhand-everything I had was at best secondhand-most of it probably third, fourth, or fifth. And it was lumpy. And the springs beneath it were broke. But there was a time I were able to sleep on it just fine. What had changed weren't the bed-'twas me.

Then I started getting pains in my elbows. Pain I can stand. After four birthings, you know what pain is. But I couldn't hold the scrub brush on account of my elbows. Had no grip left at all. So even though I had no insurance, I had to get help. Went to a walk-in clinic. The young chit of a girl at the reception was rude when she found I'd no coverage. Pretty much as said she knew I'd rob them. I walked out. Looking over my shoulder, I could see she was back to reading her magazine 'fore I was even through the door.

I couldn't get rested, and the pains got so bad I could do no work. I had to go on the county. They took care of the kids. The pills they gave me were no help. Maybe 'cause I didn't take them. Wasn't going to get addicted. Seen too many like that. It was the welfare lady who sent me to the clinic, and then the clinic that sent me here.

BETTY

Hi, there! My name's Betty. Maybe we've met. I'm the check-out girl at Cyrenberg's Fresh Fruit and Vegetables Market. And let me tell you, that's a heavy job. You lift your one bag of vegetables, and you think it's heavy. I lift them for eight hours. OK, I get a break. Half an hour for lunch, ten minutes for a smoke a couple times a shift. The boss isn't bad. It's his wife who watches us. Take a minute extra, and she's down on you like a ton of bricks. So when my neck was sore and my shoulders hurt from lifting all those bags, "Do your work or get another job" was all the sympathy I got from her. And I told my husband, Bill, I might have to get another job. He'd just got home from the sports bar after midnight, but he fell asleep while I was talking.

The pain got worse, and I did get fired. "Get yourself fixed," Bill said on his way to the big autoshop where he's their lead mechanic. I grew up on a farm and "fixed" doesn't mean to me what it means to him. He's got good medical coverage, and I had no trouble getting seen in the medical clinic. Nice young doctor, had one of those hand computers, typed everything into it, and bingo! Out popped the answer. Soft tissue rheumatism, he'd said. Didn't explain it to me. Wrote it on my sheet and sent me back to the desk, still clutching the back of the gown so I'd not attract those nosy old men sitting in the hallway, holding their walking canes.

The massage hurt, but the heat felt good. Felt good until I went home to mum, who never stopped talking about her pains, "hier und hier," since she came from the old country and thinks I speak the language, which I don't. I left her thinking I'd end up the same if I didn't get better treated. So I got more heat and more massage and then some electric machines they strapped onto me. Every day I went.

At first it was better, then day by day, the pains spread. Down from my neck and over my back. Then I couldn't sleep. Bill snores, lies on his back, makes me think of our pigs. In the morning, I was more tired than when I went to bed. Hardly had the strength to go to the clinic for their treatments. The same young doctor wrote me prescriptions for pills-all they did was leave me confused. Said I shouldn't drive, but Bill has the only car, so it made no difference.

The massage therapist seemed to be getting frustrated when I told her she made me hurt even more. She passed me on to the exercise therapist, who had some crazy idea I should lift weights. I told her that was what started me off in the first place. They sent me to a dietitian. Don't think she'd have kept her man happy, not with the food she suggested. So much vegetables and fruit my stomach never stopped rumbling. Not that Bill would've noticed. Then more pills that did nothing. Then they sold me insoles with magnets to put in my shoes. I didn't tell Bill about those. They made me limp. My legs and back were hurting every bit as much as my neck and arms.

Finally, Bill told me either I get fixed or he'd get out. Couldn't stand me whining like my mother, he said. So here I am. Specialist said he wasn't sure they'd help me, but I was getting nowhere like I was, and the insurance refused the last payment. Said I'd gone over the limit.

CICELY

Good afternoon. My name is Cicely. I'm very pleased to meet you. I think perhaps we share the same problem. I'm very fortunate in life. I don't go out to work, but I work very hard at home. At the old age of fifty-five, I'm an empty nester, but not for much of the time. Our four children were married young-they're following the family traditions and already they've got three children each. But I stayed home and looked after my children. (Young people these days don't seem to think that's necessary. Perhaps they're right. Perhaps they're entitled to some fun while they're still young.) But I do get so tired when they bring the grandchildren. Don't get me wrong-I love them dearly. But chasing after them as they run wild through the house does my pressure no good. And I began to ache very badly when the two girls decided they'd go away together. "Make a foursome" they said, but it was a "sixsome" they left me with, three children each. Then I really started to ache, couldn't sleep, tired all the time. "What do you expect?" my husband said. "At your age?" As if that would make me hurt any less.

I'm lucky with my doctor. Don't have to wait long for an appointment. Always pleased to see me. Always friendly. Always busy, too, so I don't like to take up too much of his time. His nurse takes my pressure. I tell him I feel tired looking after six children. He laughs, doesn't examine me, he's so busy, but he gives me a packet from his drawer. "Latest thing," he says. "Come back next week and tell me how you're doing."

The pills make me drowsy through the day, don't help me sleep at night. The children exhaust me. Seems my good husband is more busy at the office now and never gets home until after I've put the kids to bed. Then I have to get his dinner. Don't have an appetite for anything myself, but he eats like a racehorse.

I couldn't understand my doctor. Every time I went to his office, he had a different sample medication to give me. It wasn't as if I needed anything free. We have a perfectly good insurance, but always it was a new sample. Always it was "the latest thing." But they never helped. None of them.

The more I hurt, the harder it was to get to see him. Finally, I told his nurse I really thought he ought to examine me. Perhaps I had cancer or something. I knew he was busy. I knew he was very kind, but perhaps if he were to examine me, he might find a reason for the pains and the tiredness and that dreadful stiffness.

"He doesn't think there's anything wrong," his nurse said. "If he did, he'd have looked at you."

"So what should I do?" I asked her, totally bewildered.

"Try the herbalist. They're for people like you." And that was where I found the brochure that led to the Web site that led to the specialist who fixed for me to come here. There were quite a few boxes of herbs in between, while the pain got worse and I became more and more desperate.

DELILAH

I can't hide it from you. It's on the sheet in front of you. My name's Delilah. I know how I got it, or at least why I got it, and that's of no account right now. Please call me Dee. What's not on the form, and I won't hide it from you, I used to work as an insurance adjuster. Yeah. I can read your thoughts. I did personal accident. Maybe I handled some of your claims. We deal with paper. We don't deal with faces. Just paper. And so much paper. And so many claims. And the jokes about them. Listening to the managers you wouldn't believe anyone was ever truly hurt in an accident.

This is my story.

I'm forty. I'm a single mom. We've all promised here to be absolutely honest with each other, so I have to tell you, I've always been a single mom. Not like I didn't know who the man was, but I never wanted him as a husband, and he'd never have been much of a father. So I've a child to support, going on ten. Nice polite kid. Does his homework, makes his own bed. Keeps his room tidied. But that's not what you want to hear. Maybe later we'll show pictures?

Why I'm here? I had an accident. Is that God's judgment? I wouldn't know. God and me, we never had much to do with each other. Driving to work, traffic slow, stop and start, then it speeded up a little, and we were moving along at a good pace. I hadn't expected the truck to stop, no lights. No warning. But I managed to stop my car an inch behind him. Didn't touch him. Not until the pickup I saw in the mirror came slamming into me, threw my car partway under the truck, and threw me onto my back. The seat flattened. I couldn't move. Not even when the gentleman whose pickup had hit me came and shouted at me. Won't tell you what he said, but it was in the nature I earned my living like the way I was lying-on my back.

I'm rambling on. The paramedics came. They looked really worried. They asked if I could feel my feet. I could, but it was obvious they thought I was going to be paralyzed. They told me not to move. I knew they thought I'd die if I did. They put a collar 'round my neck. I could hardly breathe. They wrapped, like, a corset around me, lifted me out and laid me on a board, tied me to it, straps all over me, and my head bound to the board with sticky tape. I was scared when it happened. I was terrified when they did all this. I knew my neck and back were broke, or they'd not have gone to so much trouble. They knew there had to be internal bleeding, or they wouldn't have started an IV, would they?

Then the sirens as they rushed me to the emergency room! There they were nice enough. The clerk found what she needed in my purse. The nurse looked sympathetic. The boy who came, wearing jeans and a workshirt, said he was a doctor. I didn't believe him. So young. But the nurse said he was, and gave me his name. Then they took blood. They took x-rays. They shook their heads. They talked out of my sight in low voices. I knew there was something terrible they'd found. They wheeled me back to the ER. The boy who said he was a doctor undid the collar, tossed it onto the shelf under the stretcher, put a piece of paper in my hand, said, "Follow up with your own doctor," and walked away. I hurt like hell. All over. And they said there was nothing wrong! Like I'd imagined the accident!

Then came the paperwork. I'd never thought it was people in pain who filled out all those forms. And my car wasn't worth repairing. A pittance they gave me; wretch of an adjuster said it was all it was worth.

My doctor was kind. She gave me a prescription, ordered another collar, sent me for therapy. Sent me to several places. But I just got worse. I hurt everywhere. My job was held for me. I couldn't go back to it, so they put me on short-term disability. Then I had to see a doctor who specialized in accidents; I could see he didn't believe anything I told him. Didn't seem to care that my usual once-a-month migraine was now every three days, or my periods that'd always hurt were now an agony. And my tummy, you'll excuse me, ladies, sometimes it worked too much, and sometimes it didn't work for days. But my therapist sent me to a lawyer. He sent me to an arthritis doctor, I guess because my neck was on fire and my back no better. She was the one who said I'd got fibromyalgia. And that's why I'm here.

ENOLA

Hi! I'm Enola. Not Enola May. Just Enola. And I guess I'm the same as the rest of you. I hurt.

But I'm tired. I'm just so damn tired I can barely drag myself out of bed. Just as well my husband left me. If he hadn't already, then he would've now.

Like Betty, I work in sales, but at a counter. General office supplies, paper, computers, that kind of thing. The men, they give the advice. Me, I ring in the sales. Just the one job, forty hours a week. Unionized. Good benefits. Clean and warm place. Good boss, and nice guys to work with.

Depression, my doctor called it. He was right. I'm so damn depressed I sit at the table, holding my head and the tears flow. I just can't stop them. Pills he gave me. Helped the sleep a little. The psychiatrist was kind. Told me lots of women are depressed at my age, forty-three, some men, too. "Go on with the pills," he said. "Don't lose hope. Your doctor's got it right." That didn't explain why I hurt so much, just ache right through. Not in any one place, not so I could explain it to my doctor. 'Sides, how many problems am I going to tell him about?

Then they laid me off. Very nice about it, they were. I knew I wasn't doing the work. I had nothing to complain about. Fact, in the long run, it was likely a good thing. I got to get some sleep during the day when the kids were at school. I didn't tell you they both got learning and behavioral problems. Go to a special school. But that doesn't keep them quiet when they're home. Not even the meds they take seem to quiet them. But we've all got our problems. You don't want to hear too much about mine. So I'll tell you the bright bit.

My short-term disability was switched to long-term, and they made me go and see another doctor. Lawyer said his job was to cut me off my benefits. But he asked me more questions than any doctor I'd ever been to. I didn't expect to tell him about my childhood. Not even the psychiatrist had asked about that, and I'm not going to tell you today what I told him then. But he thought it might have something to do with my pains, and my trouble sleeping, and my sitting by myself weeping. Fibromyalgia, he called it. I'd never heard the word before. But that's what led to me coming here.

Guess we'll all have to wait and see what's in store for us. I know I couldn't go on like I was.

(Continues...)

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Excerpted from THE FIBROMYALGIA CONTROVERSY by M. CLEMENT HALL Copyright © 2009 by M. Clement Hall. Excerpted by permission.
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