Five Important Things To Remember When Caring For A Loved One With Chronic Fatigue Syndrome
Caring for a loved one with chronic fatigue syndrome (CFS) is challenging. You may not always know the best way to be supportive. Pegasus caregivers in Stevenson Ranch and elsewhere offer facts and five important things to remember when caring for a CFS patient.
Chronic fatigue syndrome is also known as myalgic encephalomyelitis (ME/CFS). Fibromyalgia shares many of the same symptoms of ME/CFS. Some individuals have fibromyalgia and ME/CFS.
CFS Symptoms
There isn’t a definitive test for chronic fatigue syndrome. Additionally, many of the symptoms of CFS are similar to other medical conditions, including diabetes. Doctors diagnose it primarily through testing to eliminate other conditions and by observing symptoms.
An individual is diagnosed with CFS if their fatigue:
- Keeps them from engaging in pre-illness activities.
- Has lasted for six months but isn’t a lifelong condition.
- Is not helped by resting.
- Is made worse by physical, emotional, or mental effort.
The intensity and frequency of their fatigue can vary. The unpredictability of symptoms often leaves individuals frustrated. They may also experience secondary symptoms that include:
- Cognitive impairments that include difficulty remembering, focusing, or concentrating
- Depression
- Difficulty standing or sitting upright due to low blood pressure
- Headaches
- Muscle and joint pain
- Sore throats
- Swollen lymph nodes
Although there isn’t a treatment for CFS, therapy and medication can help with the secondary symptoms.
CFS Causes
The cause of chronic fatigue syndrome is unknown. Research is ongoing. Factors that medical science is studying include:
- Allergies
- Bacterial and viral infections
- Environment
- Genetic inheritance
- Imbalances in hormone levels
- Impaired immune systems
- Stress
- Trauma
To date, none of the research is conclusive. It’s possible that CFS is “triggered” by a combination of factors.
CFS Causes Unpredictable Flare-ups And Crashes
Chronic fatigue syndrome symptoms can “flare-up” and cause your loved one to crash at any time. It’s that unpredictability that makes living with it more difficult. Individuals are usually unable to make any plans.
Some individuals are able to work at least part-time. Some can enjoy social activities or care for their families. Those with the most severe symptoms may be unable to meet their basic needs without assistance.
Caring For Your Loved One With CFS
How do you provide caregiving for someone with chronic fatigue syndrome? The following suggestions can help you and your loved one cope with the debilitating effects of CFS.
- Educate yourself. CFS changes the lives of the patient and the caregiver, sometimes dramatically. As a caregiver, it’s essential that you know what to expect when there’s a flare-up. That alleviates some of the stress for everyone. Understanding the triggers may help prevent or lessen the severity of flare-ups. The CDC has a toolkit with checklists for use when you’re responsible for talking to your loved one’s healthcare provider.
- Modify your expectations. There will be times that your loved one feels well. They may be able to engage in everyday tasks. That can lead to expectations of continued good health. You may find it challenging to cope when the inevitable debilitating flare-up occurs. Try to enjoy the times of well-being, but avoid burdening your loved one with unrealistic expectations.
- Pace activities. It’s a natural human tendency in individuals to do as much as they can when they feel well. Overdoing, followed by a crash, makes life far more unpredictable and stressful for you and your loved one. You can help by encouraging them to take frequent rest periods. Overall, they may have to reduce their total activities. Help set priorities so that they get essential tasks done. Let them know that it doesn’t matter if there are delays in accomplishing some tasks.
- Validate their experiences and feelings. Your loved one is not lazy or malingering during a CFS episode. Telling them to try harder or not taking their condition seriously invalidates them. Listen with compassion when they tell you how they feel. Offer encouragement and support.
- Respect their independence. Offer to help without being judgmental. Understand that you can’t fix them. Try not to take over when they don’t do tasks the way you think they should. Respect their decisions even if you disagree. As long as what they’re doing isn’t harmful, let them have as much control of their life as possible.
Finally, take care of yourself. Make time for activities that you enjoy. Exercise, eat healthy meals, and get enough sleep.
When you become a caregiver, your relationship with your loved one can change. Communication can break down, especially if your needs go unmet. It’s not unusual for caregivers to experience negative emotions like anger.
Ask for help from friends and family members. Do an internet search for CFS support groups, and join ones like the myalgic encephalomyelitis discussion forum. Seek professional counseling when necessary.
Pegasus is a licensed Home Care Organization and a Joint Commission Accredited Home Health Care organization. Our team of caregivers in Stevenson Ranch and our other locations tailor their services to fit each individual’s requirements. If you need a break, our respite care service gives you as much time off as you need to recharge.
