• Lbeth353 - My Story

    Hello. My CFS story began a little over three years ago. I am convinced it was brought on by the culmination of several very stressful events.

    First, my son had graduated from high school and had just begun his first year of college. I was, for the first time in my life, living alone. Then, the job marked dropped out and I was unsuccessful in finding gainful employment. It soon became painfully obvious to me that I would have to do something I had vowed I would never do - move back in with my mother. I had been completely independent for so many years, raising my son alone, as a single parent. Now, I would have to move in with a woman who suffered from the form of OCD called hoarding. She kept everything, throwing nothing away. There was only a tiny, narrow path winding through the house with which to navigate. Boxes and stacks of papers filled her house, which she never cleaned. I was horrified at the thought of having to move into such an environment.

    In the fall of 2003 I moved into my mother's cluttered house. I spent days and days straightening and cleaning. At home, all of my time was spent in my room, which was my clean, organized haven. More bad news. My job search in that area was unsuccessful as well. Then, my dog was diagnosed with kidney failure and required special care. I had also started dating someone who had attended high school with me. Things with him seemed very promising, as he talked of a definite future with me. Then, all of a sudden, things came crashing down. On the 'anniversary' of my six months without a job. When I needed the support of my boyfriend the most he decided to abandon our relationship with no warning. Truly, no warning. Sparing details, suffice it to say that this was the worst breakup I had ever experienced. The pain lingered and lingered. I was inconsolable. Several weeks later, I was able to obtain an explanation and closure on my birthday. I mourned the loss of that relationship for a very long time, even after the onset of CFS.

    I began to feel sick on Valentine's Day. Thinking it was just a cold, I had no worries. However, it soon developed into what felt like a very bad case of the flu. However, my symptoms did not dissipate. I was in bad all day long with no energy. It was beginning to feel like mononucleosis, which I had had in my early twenties. I wanted to get tested for mono, but was too weak to leave the house. In addition, my symptoms began to vary. Swollen glands, a strange, new type of headache, muscle pain, and a host of other symptoms that at the moment escape me. When I realized that this was no ordinary illness, I began to keep a diary of my symptoms. I had no idea how helpful this decision would be.

    I felt worse than I had ever felt in my life. No amount of sleep made me feel better. As soon as I got out of bed, I wanted to crawl right back in. My eyes were so heavy and sore. My body ached for rest. I could not enjoy any type of activity, even watching television. On the worst day, I remember awakening, eyes still shut, thinking to myself, "Oh no, now I am going to have to open my eyes!" It was truly a struggle to open my eyes. After several minutes contemplating whether it would actually be worth the effort to open my eyes, I finally did so. Phew! Then, I thought, "Oh great, now I am going to have to sit up in bed." It must have been about ten minutes later before I was able to muster the energy just to sit up in bed. I knew I had to use the bathroom, but the very thought of having to walk the ten feet down the hall to the bathroom was overwhelming. This moment was the only time in my life that I actually weighed the pros and cons of urinating on myself in the bed. (Finally, I did force myself to get up and go to the bathroom.) I don't think anyone who has not had CFS/ME can possibly imagine the frustration involved in having these thoughts.

    Some time later, when I was able to get myself to the doctor, I was tested at a local clinic for mono. After the test came back negative, I began conducting online research into my symptoms. I was then tested for HIV and diabetes, both of which came back negative. Then, more research, and I began to suspect that I had CFS. I then chose a new doctor and explained my symptoms, as well as my suspicion that I had CFS. She flat-out told me that she was not convinced that CFS was a real illness. Then, she told me I was simply depressed and gave me a prescription for an anti-depressant. I was incensed. Needless to say, I did not return to her.

    I knew I needed something to improve my energy level, so I visited my local health food store. One of the staff members suggested I try a product called "Fatigued to Fantastic," which is a powdered vitamin/mineral/amino acid supplement with accompanying Vitamin B complex capsules. I began taking it immediately. After three days, I felt significantly better. And, after nine days, I felt that I had been cured of whatever ailment I had had. Unfortunately for me, I then decided to do a full day's worth of house chores and suffered a major relapse. I was incredibly discouraged. After many days of rest and continuing to take my new supplement, I finally felt I could try to find a job.

    My new job was in the field of social work, the field I had worked in most of my life. One day during a training session, I felt my left arm go limp and numb. I could hardly move it, and it felt cold to the touch. This really frightened me, so I had someone drive me to the emergency room. There, I was screened for lupus. The test result was negative. Nobody knew what was wrong with me.

    Back to the Internet, I soon found an interesting website listing a doctor who treated people with CFS. By this time, I was convinced that this is what I had. When I met this new doctor - forty-two miles from my home. I brought along my entire journal of symptoms, along with my medical test results. He spent at least an hour with me, entering my data into his laptop computer. Based on my symptoms and negative test results, he diagnosed me with Chronic Fatigue Syndrome. He, too, felt that the onset of my illness was stress-related. For that reason, he prescribed Lexapro, an anti-depressant. However, he made it clear that he did not believe I was depressed. Rather, this medication, being a Selective Serotonin Reuptake Inhibitor, would help my body handle stress. He also ran a blood test checking for low thyroid functioning. When that test came back negative, he had me conduct an at-home test for thyroid. Each morning, I was to take my axial temperature with a mercury thermometer before getting out of bed. I did this for five consecutive days. Because my temperature was low, my doctor explained that I had hypothyroidism that did not show up in the traditional blood test. I then began taking Armour Thyroid. My doctor also had me take a number of natural supplements. I continued taking the Fatigued to Fantastic, as well. I almost forgot to mention that my doctor also put me on medical leave from my job.

    I soon began feeling better. However, at a re-check, my doctor told me that I could no longer work in the social work field due to the stress factor. He actually told me that I should take up flower arranging, or some similar low-stress job. I don't know how he thought I could possibly make a living at that. So, I ignored his advice and took another social work position. I felt that my health had improved to the point where I did not need to worry about job stress. I was wrong. I ended up having to leave that position with a medical leave as well.

    Months later, I found other rewarding employment at a local humane society. I was no longer taking the supplements that my doctor had recommended, but did continue with the Fatigued to Fantastic, which has been a life saver for me. I also continue to take the Lexapro and Thyroid medications. I have been relatively symptom-free with a few ups and downs for the past two years. Only recently have I experienced a serious relapse. I believe the reason for this is my impending move out of state, as well as my son's college graduation.

    I have finally come to the conclusion that CFS may be with me for the rest of my life. I will just have to accept my limitations and take the best care of myself that I can.

    I realize this has been a long story, and I hope it has not been too tedious. Thank you for reading.