The Complete Guide to Fibromyalgia by Sharon Ostalecki

Fibromyalgia: A Patient's Perspective: Jane Charlton

Jane has a wonderful husband (Rob), a son (Max), and they are expecting a new addition to their family. In her spare time she makes jewelry and enjoys reading. Jane has a great group of friends who provide support and love, and with careful medical management she is able to lead a fulfilling life.

No, you are not crazy. Your pain and fatigue are real and have a cause.

For me it came to a head one day while I was driving home from work on the expressway and suddenly realized, "Oh my gosh, I'm lost."

I pulled off to the side in amazement. Though I was so tired I could hardly think of anything but being tired, getting lost cut through the fog to have an impact on me. Where was I? Had I passed my exit? Nothing looked familiar. I had to think back to what I last remembered. I had just left work, hadn't I?

And the little voice in my head kept saying, "I am so tired." I broke down and cried, but there was no relief in it, so but a moment later I was saying to myself, "I don't think I've gone far enough" as I pulled back onto the expressway.

Soon, I was crying again. "Maybe I should just run my car into that wall. Then I'd get some sleep!" No, I wasn't serious. I was just being sarcastic with myself. All I wanted was to be myself again! I stopped driving that day for over a year. I was 28 years old and had been married for about a year.

That's how overwhelming the pain and fatigue of fibromyalgia can become if it spirals out of control. It can cost you your job. I couldn't keep up with mine. And this was a new job, one I took because it required fewer hours, had fewer deadlines, and involved a shorter commute. Yet I was still so fatigued I would sit in the bathroom with my head against the wall, praying for the strength to make it to lunch. During lunch, I would grab a quick bite to eat and then put two chairs together for a nap so I could begin the afternoon. Then back to the bathroom I'd go to pray that I could make it until my husband picked me up at five. What a life!

That was me then. Before, I had always been an active person. I loved to walk, swim, and spend time with family and friends. Now I just existed.

I couldn't believe it. I don't know what I would have done if my husband hadn't been so supportive. My symptoms continued to spiral, and I had to leave my job, because I just couldn't keep up and was going to get fired if I didn't leave.

I tried working out of my home. Since I developed training courses, a computer, fax, and phone were all I needed. But I continued to get worse. Although I was sleeping as much as I could, I couldn't recharge. I felt drained; just getting out of bed was exhausting. My body felt like it was made of cement. I didn't know what to do. I was losing myself to this pain and fatigue and nothing I did seemed to make a difference.

I had been seeing a new physical medicine doctor, who was trying very hard to help me. An office visit consisted of my sitting in the exam room crying, "What is wrong with me? Why can't I do anything? I can't think, I get lost when I drive." He told me to go to the emergency room if I got worse.

I think I was at the hospital within a week. Admission put me on the road to getting better, a returning to my former self. I would love to use the word recovery in that last sentence, but fibromyalgia isn't an illness from which you recover. It is a chronic illness that you must learn to manage.

It can be managed; I am living proof.

How did I get here? I was a 28-year-old educated woman who had turned into a shell of my former self. Less than a year before, I held a good job, took a graduate class, and hiked seven miles with my husband on our honeymoon. Before that, I had graduated from college, lived on my own in the Chicago area, and developed training courses for many Fortune 500 companies.

Now I was scared to be alone and cried whenever my husband left for work. I couldn't remember my parents' phone number or whether I'd taken my medication. The simplest decisions overwhelmed me. I hadn't the stamina to stand long enough to take a shower, or to sit long enough to go to church.

How did this happen? It was a long, long road to this point. A typical one that may serve as a helpful example to you.

I was an athletic child and teen. I played basketball and swam competitively. I loved to dance and sang in the church choir. I played the bassoon in the symphonic band and a mellophone in the marching band. I biked and walked; I was always on the go.

At fourteen, I began to experience shoulder and neck pain with numbness in my left arm and hand. At sixteen, I was referred to a thoracic specialist in the metropolitan Detroit area. He prescribed exercises for thoracic outlet syndrome - compression of nerves and blood vessels passing through a space between parts of the shoulder blade and collar bone, causing symptoms in the neck, shoulder, and arm.

During the winter when I was sixteen, I injured my left shoulder in swimming practice. This was a very hard time for me. The pain never went away, and the emotional trauma was very difficult. I was a sixteen-year-old girl who could not tie my shoes, dry my hair, or go to the bathroom alone. I had to give up swimming, and my job as a lifeguard and swimming coach. I had to change my class schedule, because I could no longer play music or type.

The fatigue started the year after surgery to remove my top left rib (to relieve the symptoms of thoracic outlet syndrome). I would have days of numbing fatigue. That shouldn't happen to an 18-year-old. As I went on to college, the thoracic-outlet pain in my arm lessened, but the pain in the rest of my body increased, especially in my legs. I didn't understand the pain and fatigue. I didn't understand why I lacked the stamina to do what I'd been able to do before, or why I couldn't keep up with my college classmates' active lives. Nevertheless, I was determined to try to keep up with them. The pain in my legs got worse through my college years. I prowled the dormitory halls trying to walk out the cramps and the feeling of ants crawling under my skin. Darvocet helped, but to be able to sleep, I had to exhaust myself. The next morning my legs and hips would feel like cement, and it seemed to take forever to get out of bed.

During my second year of college, I saw a neurologist who, despite a negative MRI, diagnosed me with multiple sclerosis. My mother and I actually left that appointment relieved and happy. Why? Because we finally knew what was wrong with me.

Been there? Just getting a diagnosis can be a feat for people with fibromyalgia. All too often, as in my case, it's a wrong diagnosis.

I would have remained that doctor's patient if she hadn't had such a poorly organized office. (Thank God for small things!) My new neurologist repeated the MRIs and did several spinal taps to confirm that I did not have MS. He was sure I had fibrositis, as fibromyalgia was then called. He weaned me from the MS medication and started me on Elavil.

I did not like the Elavil. Though it helped me sleep, I awoke feeling drugged. In addition, I started craving sugar. Never in my life had I wanted straight sugar on a spoon. Needless to say, I started to gain weight. I took the Elavil for a while and started feeling a little better, but I gained 25 pounds. So I stopped the Elavil and lost 20 pounds. Then the pain and fatigue increased, so I went back on the Elavil. This started a vicious cycle.

The neurologist was not sure how to treat me. I never got full relief of my symptoms and I started developing bad coping techniques.

For years during and after college, I fell into a pattern. To sleep I would overexert myself until I crashed. Then I would drag myself from bed each morning, feeling worse than when I went to bed. I would spend the weekend in bed recovering from the workweek. I would lie to my friends and family, telling them I was sick, because my legs and torso felt like concrete that I could not drag out of bed. Then I would catch a virus and really get sick, which caused such a spike in pain and fatigue that it would take me weeks to recover. I continued in this downward spiral until I was 28 years old.

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