a guest post by Suzan Jackson
(www.livelywomen.com) — March 1, 2002, was a day like any other in my happy, active life as a 37-year-old writer and mother of two boys. The next morning I woke up with a severe sore throat, aching all over, and exhausted. I figured I had the flu. I had no idea that my life had just changed dramatically and that I now had a chronic illness.
It took me a full year – filled with doctor’s visits, lab tests, pain, and exhaustion – to finally learn that I had Chronic Fatigue Syndrome (CFS), an immune system disorder. My experience was typical. Many people develop CFS suddenly and then go 5, 10, even 15 years before getting an accurate diagnosis. It’s a serious, debilitating illness that is poorly understood by much of the medical community.
What Is CFS?
The U.S. Center for Disease Control and Prevention (CDC) states that more than 4 million American adults have CFS, with less than 20% of them having an accurate diagnosis. CFS affects four times as many women as men, and even children and teens can get it. Both of my sons, ages 10 and 14, have CFS. Researchers now know that there is a genetic predisposition to CFS, often triggered by some sort of infection or trauma.
Despite its silly-sounding name, Chronic Fatigue Syndrome is not really all about fatigue. Its symptoms often include:
- Sore throat and/or swollen glands
- Muscle and/or joint pain
- Unrefreshing sleep
- Cognitive impairment of memory and concentration
- Postexertional crashes, where even mild exertion leads to a severe relapse of symptoms.
Although some people with CFS are bedridden or housebound, many of us experience relapsing-remitting symptoms. I feel pretty good on some days, but if I do too much, I’ll find myself back on the couch feeling like I’ve got a severe flu the next day. To avoid these incapacitating crashes, I have to rest a lot and carefully monitor my activity level, even on my good days. CFS is often called an invisible illness because those who have it may appear normal to others, particularly since we’re only able to be out among people when we feel good. No one but our families see us when we’re very ill.
What can you do if you suspect that you or a loved one has CFS? One of the best sources of information is the CFIDS Association of America (CFIDS is another term for CFS). Their website includes a self-assessment quiz, Do I have CFS?. Another good online resource is the CDC’s own website.
If your symptoms seem to fit, print the CDC’s diagnostic criteria, and take it to your doctor. There is no definitive laboratory test for CFS, so the diagnosis is made based on clinical symptoms. Many other conditions share symptoms with CFS (including MS, Lyme Disease, lupus, and others), so it’s important for your doctor to exclude those through various tests.
If you or a loved one has CFS, the next step is to treat and manage its symptoms. There is not yet a cure or single effective treatment for CFS, but you can treat its symptoms to improve your quality of life. Medications may help treat sleep dysfunction and pain, thereby improving how you feel overall. One of the most important ways to improve the symptoms of CFS is also one of the most difficult – lifestyle changes, like resting proactively, avoiding exertion, and reducing stress.
Most people are unsure how to react when faced with a friend or family member who’s suddenly (and chronically) ill. Some ways that you can help:
- Learn as much as you can about CFS.
- Understand that your loved one can no longer do many of the things he or she used to do.
- Spend time with your loved one doing things you can both still enjoy, like watching movies, talking, or playing quiet games.
- Let your loved one know that’s it’s OK if she needs to sit or lie down while you’re together and that you understand her new restricted lifestyle.
- Offer to help in concrete ways, like making a meal, taking care of the kids, helping with housework, or doing the shopping (a trip to the grocery store can easily cause a crash for someone with CFS).
I have now had CFS for six years, and my sons have been ill for about four years. All three of us have found medications that help to improve our symptoms, and we’re living – and enjoying – our lives again. Our life now is different than it was before CFS, but it’s still ours.
Sue Jackson is a freelance writer, specializing in topics related to family and travel. You can read more about her writing at www.suzanjackson.com. Sue lives in Delaware with her husband and two sons and writes a blog called Living with CFS at www.livewithcfs.blogspot.com.