Article for June, 2007

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.

The Beginning

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.

The Developing Condition

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.

Getting Diagnosed and Getting Treatment

So how did I get better? While I was in the hospital, I was put on intravenous morphine. My pain eased some, and I began to feel like myself again. I also had many tests performed, one of which measured my serotonin level. My doctor found that it was 4. I believe a normal adult's is somewhere around 120. He told me it was no wonder I was a wreck.

Since morphine can lower serotonin, I was put on oral Vicodin and Ultram for pain. I was already taking Desryll, so my dosage was increased, and Zoloft was added. I also started seeing a pain management psychiatrist and a pain management psychologist. I saw the psychiatrist for a short time, but I still see the pain management psychologist—it has been more than 10 years.

My pain management psychologist helped me learn the difference between good pain and bad pain. He helped me learn to structure my days and not overdo. He taught me that if I have five units of energy for the day, why waste four units walking the grocery store? I should use a scooter to get my groceries. By not walking I saved that energy to spend quality time with my husband. I learned not to struggle with pain just to do the dishes. I'd fill the sink with water and dishes, then lie down. After 10 minutes, I'd wash the dishes, fill the sink again, and lie down again. I followed this process until I again had the strength to wash all the dishes. My pain management psychologist also taught me how to recognize my fatigue signals. I had ignored them for so long that I had to relearn them.

On the medical side, I had a lot of physical therapy, some of it in water. Finally, I started getting better. I started walking on my treadmill one minute a day. After a week, I moved up to two minutes. Although I could have walked longer, I never knew when to stop so that I didn't overdo. So I started slow and listened to my body for signals. As I got better, I was taken off the Zoloft. I also cut back, then eliminated, the Vicodin, then the Ultram. It is amazing to think that at one time I was taking eight Vicodin and eight Ultram a day and still having pain. I also took Buspar for a while to reduce anxiety and Ambien to help me sleep.

Getting Better and Learning to Live

One of the most crucial elements of this healing process was recognizing the anger I had because I was sick. I felt that I had no control over my life and that my body had betrayed me. My pain management psychologist's help was very important. Through bio-feedback I learned to recognize that I was contracting muscles I wasn't using. Doing so adds to muscle pain and fatigue. I learned how to relax those muscles. I learned that I put way too much stress on myself. Because I felt tired and unable to do things like clean or see friends, I would obsess over not having vacuumed or dwell on the thought that going out to dinner and dancing with friends was too much and life was so unfair. Over time I learned a new outlook: Do I really need to vacuum? Will it make that much difference if I don't do it until Saturday? Why don't I meet friends for dinner and then come home? They are my friends; they will understand, or they should.

I spent so many years trying to keep up with what my friends could physically do that I lost sight of the big picture: Life is to be enjoyed. I learned I had to plan a little more. I plan my days so that I can enjoy them. What things are most important to complete this week? What is most important for today? Can I hire the neighborhood teenager to help? How can my family help? Learning to ask for help and learning to say "no" can dramatically increase your enjoyment of life!

Today I still have ups and downs, but they are nothing compared to what I used to go through. Managing a chronic illness is not easy. You may feel fine for a while, and then you catch a virus and symptoms increase. But now I have the skills to cope. Yes, I still feel disappointed and angry at times! And I do get frustrated with myself for failing to recognize the signs quicker. But I know how to stop the slide and get my symptoms on more level ground again. Also, new knowledge has led to more aggressive treatment of my inflammation.

When I'm not feeling good, the first thing I do is review my sleep. Is it restorative? Do I have pain when I awake? To help maintain symptom control, I often need to rest during the day. I ask myself, When was the last time I rested during the day? I then rearrange my days so that I can rest. How are my pain levels? Do I need to use a Lidoderm patch to help control pain? Am I eating enough protein? Am I drinking enough water? How is my exercise going? Am I overdoing it? When was the last time my thyroid was checked? I make a point to slow down and notice that the sky is blue and there are children playing. I remind myself how good a hot shower feels. And so on. When I slow down, I can again focus on what I need in order to be happy and to be comfortable with fibromyalgia.

For those of you who are young women like I was: I went on to have a successful pregnancy. I did have many miscarriages. After consulting with an infertility doctor, I used progesterone and baby aspirin during my pregnancy. I was able to carry my son to full term at the age of 35.

So be persistent in finding help. Learn about your illness and keep informed. Medical science is constantly changing. I always say, "If I only knew 10 years ago what I know today. . . ." I'm sure I'll be saying that forever.

This chapter was taken from the book Fibromyalgia: The Complete Guide From Medical Experts and Patients by Sharon Ostalecki, Ph.D. http://sharonostalecki.com/. All book excerpts reprinted by permission of Jones and Bartlett Publishers, Sudbury, MA.

Current as of May 2007