Overnight onset in 1990. Completely unable to return to work. Bedridden and housebound. At two weeks, hadn't improved at all. My doctor diagnosed "post-viral syndrome" and kept track of me. When I had not improved at all after two months, my doctor and my allergist both suggested a work-up for every disease known. Nothing. That infectious disease doctor sent me to another infectious disease doctor who was a Lyme Disease expert. He was very kind and spent two hours (!) examining me. He gave a firm diagnosis of Chronic Fatigue Syndrome and sent me to a noted immunologist who limited her practice and her research to HIV and CFS. I now had been very sick for three months. The immunologist ordered a full range of immunological blood tests. She said the resulting pattern was consistent with CFS. She could only treat me symptomatically, but she gave me invaluable advice about how to deal with friends, family, society, and doctors who might think I was merely depressed or lazy. She noted several times that I felt much sicker than her HIV patients, but looked perfectly well, which would make it difficult for others to understand my situation. About two years later, she decided to limit her practice and research to HIV because she could help those patients, but not those with CFS. She knew a couple of "CFS doctors" that I could try if I wanted to, but she would not reccommend them because she thought they both were only seeking to become well-known and make money. I went to each of them for a while because they were the only game in town, but decided that my immunologist had been right about them. Today, they are, indeed, very well known doctors in our field. During that period, I also went to an excellent naturopath. He was very good, but ultimately, we ran out of remedies to try.
I have now been sick for twenty-five years. I'm essentially no better. Indeed, I have developed new conditions because of my inactivity. I am still housebound several days a week and bedridden occasionally. I take medications for sleep and for severe pain. After several physical therapists who only made me sicker, I've only recently found an holistic physical therapist who is helping me feel a little stronger and more balanced on my feet. She only knows only a little about CFS, but she instinctively knows what type of exercise I can tolerate (only lying down on a table.) Lymphatic drainage also makes me feel that movement is less difficult; it lasts 2-3 days, but eventually may last much longer. I continue to experiment with natural medications, but I have given up entirely on intensively following the research in our field. I needed to get off of the roller coaster. I now rely only on this site, which is so good, and on a few sources that allow me to filter their reports, e.g., Medline, PubMed, and the NY Times. Medline has a fairly recent summary of CFS, with lots of footnotes to scientific studies. It's not bad and I have given it to a couple of my health providers.
I live near a major city and have been very fortunate to have had excellent doctors who believed me and gave me an early, firm diagnosis. I had decent health insurance and terrific support and care from my husband. I already knew how to read medical research. And I easily qualified for government disability payments and Medicare. Nevertheless, with respect to my health, I remain in the same boat as many of you.
For those of you who are newly sick, even if diagnosed by only one doctor, I think my experience has four takeaways:
1) Get a complete work-up from an infectious disease doctor and an immunologist and an endocrinologist, perhaps also a rheumatologist, although I have not done that. The symptoms of chronic fatigue syndrome are shared by many serious illnesses for which there may be treatments. Never stay with a doctor who lazily ascribes any new symptom to your CFS.
2) after you have a diagnosis, apply for SS Disability and Medicare. Some people think they can't get it, but I can assure you that, armed with a diagnosis, I had no problem at all.
3) Try to build in as much fun as you can. Make plans even if you may not be able to partake of them on the day. If a wheelchair will help you participate, use one. Also, people who love you are willing to adapt their plans to your needs, if possible. Ask for that. They want to help any way they can. It took me a VERY long time to plan for fun and that was a huge mistake.
4) Any chronic illness or pain syndrome inevitably leads to sad, angry, self-critical emotions. You cannot afford to ignore them or to allow them to overwhelm you because they will absolutely make you physically sicker. It is imperative to acknowledge those feelings as being quite natural, and it is also necessary to develop some perspective and emotional balance as well. One doctor told me that anyone with a chronic illness should see a therapist for as long as she is sick. I haven't always done that, but when I do everything improves a little. If you cannot afford a therapist, talk with a cleric you like. Most are happy to counsel anyone, regardless of their faith or non-faith. Try a few until you find someone you like. A friend or relative you trust completely to stick it out with you is invaluable. Fortunately, some "friends" will self-select themselves out of your orbit. That's a very, very good thing! You only have the energy for a few, loving friends. This is a pretty expansive reply, but I hope some of my experiences will be helpful to those who are just starting out with this illness. Please remember that you DESERVE all the care and support you can get.
