Because of its nebulous nature, CFS has created problems for its sufferers: some struggle for years before getting an accurate diagnosis. Sixty-seven percent to 77 percent of patients surveyed have claimed that it took longer than a year to receive their diagnosis, and about 29 percent reported that it took longer than five years. CFS is so misunderstood that less than one-third of medical schools include the condition in their curricula, and only 40 percent of medical textbooks contain information on it, according to experts.
CFS is a diagnosis based on exclusion, and doctors typically rule out a number of other conditions before coming to this conclusion. While symptoms may vary from patient to patient, CFS is typically diagnosed if a patient exhibits:
● Clinically evaluated, unexplained, persistent or relapsing fatigue that is of new or definite onset, is not the result of ongoing exertion, is not alleviated by rest, and results in a significant reduction in previous levels of occupational, educational, social or personal activities
● Four or more of the following symptoms that persist or recur during 6 or more consecutive months, and which did not predate the onset of fatigue:
◦ Self-reported impairment in short-term memory or concentration
◦ Sore throat
◦ Tender cervical or axillary nodes
◦ Muscle pain
◦ Multi-joint pain without redness or swelling
◦ Headaches of a new pattern or severity
◦ Unrefreshing sleep
◦ Post-exertional malaise lasting over 24 hours
Living With Chronic Fatigue Syndrome
Reporting your symptoms to your doctor is important in getting a proper diagnosis and establishing a treatment plan, but there are steps you can take at home to minimize the impact CFS has on your life. Among them:
Accept Your Illness And Communicate To Those Who Can Help: The biggest challenge, perhaps, for many CFS sufferers is accepting their newly limited status. Learn to accept your condition and communicate it to those who need to know. Rather than fearing a sideways glance from an employer, share with them what you feel comfortable disclosing and discuss options to avoid jeopardizing your job. A leave of absence, revised work schedule or duties, or remote work options may help you stay on top of your duties, especially if you have a long commute or stressful position. Communicating to loved ones may encourage them to help with tasks like yard work and home projects that will help you save your energy for more important tasks.
Tap Into The Community: It’s estimated that up to 2.5 million people are living with CFS. Tapping into online forums and networks will help you feel less alone in your condition, but it also can provide you with a wealth of knowledge in coping with your symptoms and making improvements. Fellow CFS patients share home remedies, tricks and tips, and news about new studies with one another - keying into that database is invaluable.
Stress Management And Reduction: Develop a plan to reduce your stress levels and limit overexertion. Build time into your daily schedule to relax and rest. Being chronically ill is stressful enough in itself, and many doctors believe that stress could be a contributor to CFS symptoms. So, when at all possible, make things easy on yourself by keeping your schedule flexible and your goals attainable. Keep a journal - not only will it help to vent your frustrations, but you can eventually review the pattern in your behavior that triggers good days and bad, and will help you shift your priorities and minimize your stress level.
Maintain A Healthy Diet: If you aren’t already charting it in your personal diary, you should begin to log a food diary. Track not just what you’ve eaten, but how you feel immediately after eating and how you feel later in the day. CFS patients often report that they’ve developed food sensitivities and allergies, and you may not be aware of what foods are triggering your bad days until you consider both foods you’ve just eaten and those you ate earlier in the day or the day before. Try to avoid foods that give you short bursts of energy and will make you crash later, including sugar and caffeine. Bulk up on foods that offer slower energy releases, such as starches and proteins. Also look for foods that are rich in iron or contain high levels of B12.
Improve Sleep Habits: Get yourself into a strong sleep routine - including going to bed and waking up at the same time each day. Limit daytime naps and reduce or eliminate your caffeine, alcohol and nicotine intake, as these can disrupt your sleep patterns. As with other aspects of your life, keep a log of your sleep patterns and note anything that may have triggered disrupted sleep.
Pace Yourself: Plan your daily activities on an even level. If you’re having a good day, don’t try to overcompensate and overexert yourself, as it can trigger several bad days to follow. If you feel your fatigue setting in, stop and take a break, rather than waiting until you feel exhausted. Taking short breaks to rest will take less of your time than crashing for days at a time to recover from overexertion. Most importantly, don’t judge your activity level against those of your peers, and learn to accept your limitations, rather than being frustrated by them, which can lead to an increase in stress and more frequent bad days.
Maintain Regular Doctor Appointments: Find a doctor who is familiar with or specializes in the treatment of CFS, and schedule and keep regular appointments. Make sure that you keep a log of your treatments, regimens, vitamins, and home remedies and share them with the doctor, even if a symptom seems minor to you or an improvement doesn’t seem significant. Your doctor, especially if you’re seeing a specialist, will be able to take the information you provide and turn you onto additional opportunities for improvement, as well as suggest therapies based on what you find to be working at home vs. triggering bad days.
Explore Alternative Therapies: You should always follow the advice of a trusted doctor, but discuss with him or her opportunities for alternative therapies that have been successful in minimizing symptoms in other CFS sufferers. Some sufferers have claimed improvement with acupuncture, homeopathy, and Reiki. Research options in online forums or support groups and share these with your physician.