If you’re living with HIV, you may find that you experience fatigue from time to time. Described as tiredness that isn’t relieved by rest, fatigue can affect your quality of life and prompt you to look for ways to improve your energy levels.
“I always feel like I’m carrying a 1,000-pound weight on my back, no matter what I’ve tried or used,” shared one myHIVteam member. “Tired of being tired. I want my energy back.”
Fatigue can occur at varying degrees among people with HIV or AIDS, with several factors playing a role in causing or worsening this symptom.
Living with a chronic health condition like HIV can present a number of financial, emotional, and social challenges. The stress caused by receiving an HIV diagnosis, managing treatment interventions and appointments, and disclosing your HIV status to others can have negative impacts on your mental health. Approximately one-third of people who have a serious, chronic health condition — such as HIV — experience symptoms of depression.
Mental health issues, including depression, stress, and anxiety, can contribute to fatigue. Depression is the most common source of fatigue among people with HIV. Fatigue can also worsen depression and other mental health struggles, leading to a negative feedback loop.
Comorbidities, or co-occurring health conditions, are common among people with HIV. Conditions like chronic kidney disease, heart disease, diabetes, and cancer — as well as some of their treatments — can all contribute to fatigue.
Experts have found that HIV itself can be a cause of fatigue, although researchers are still trying to learn exactly how HIV-related fatigue occurs. Scientists have found that in people with HIV, the immune system mounts an attack against the virus, leading to inflammation. Even low levels of inflammation can drain you of energy, potentially leading to fatigue.
The best way to keep fatigue in check if you’re living with HIV is to take antiretroviral (ART) medications as prescribed by your doctor so that your viral load remains consistently undetectable during monitoring. In addition, you can use the following six fatigue-fighting strategies.
As always, talk with a health care professional if you experience new or worsening fatigue. They can determine the cause of your exhaustion and work with you to find the best ways to combat it.
If you’re feeling fatigued, exercise may be the last thing on your mind. As one myHIVteam member noted, fatigue can make exercising a challenge, even if the incentive is there: “Prior to being diagnosed in April of 2017, I was extremely active. I ran two to four miles a day and had started weight lifting and gaining muscle. Since my diagnosis, everything has been put on hold, and I would like to start exercising again.”
Although it may seem daunting at first, being physically active offers one of the best ways to help lessen fatigue while living with HIV. Exercise can also help manage co-occurring health conditions, such as diabetes or heart disease, that may contribute to fatigue.
Many myHIVteam members have recommended exercise as a way to help fight fatigue. “I was diagnosed with HIV in July 1985,” one member wrote. “This month marks my 34th year. In that time, I learned there are some things we have to do for ourselves. One of them is exercise. Get off the couch. I feel many times better after regular exercise. You don’t need a gym or fancy machine. Walking is great exercise; stretching and yoga or tai chi are very helpful.”
Allowing your body to rest when needed is just as important as being active enough. As one member shared, “I do my best to rest when my body is tired. I don’t stress about being tired or fatigued. It is just part of living with HIV … I don’t push the limits of my body too far, but enough to get my heart rate up and break a sweat. I do have days where my body just isn’t there. So I don’t push it and certainly don’t stress over this.”
Letting yourself rest can play an important role in self-care while living with HIV. One myHIVteam member shared the following advice: “What I’ve been working on lately is listening to my body, pushing through when I need to, but making sure I rest when my body tells me to rest. For me, giving myself the care I would give to someone else is not easy, but I am practicing self-compassion. It does get easier with practice.”
Getting plenty of quality sleep is also important for staving off chronic fatigue. If you have trouble sleeping, you may want to work toward developing a consistent bedtime routine (also referred to as practicing sleep hygiene).
Do your best to go to bed and wake up at the same time each day, and create a comfortable environment that helps you fall asleep and stay asleep. You can dim your lights as bedtime approaches and keep your bedroom at a cool, comfortable temperature — for most people, that’s around 65 degrees Fahrenheit, according to the Sleep Foundation. Experts also recommend avoiding screen time within the hour before going to sleep, as well as reducing alcohol and caffeine intake, particularly three or four hours before bedtime.
A healthy, nutritious diet plays an important role in maintaining your overall quality of life and well-being while living with HIV. A balanced diet can not only help reduce fatigue but also prevent conditions like anemia (a low red blood cell count), which can be caused by a lack of iron, vitamin B12, or vitamin B9 (folate). Furthermore, proper nutrition can strengthen your immune system, helping you fight off infections and withstand disease progression — both of which may contribute to fatigue.
Learn more about the importance of a healthy diet and nutrition in HIV.
Because depression is the most common cause of fatigue in people living with HIV, it’s important to address these feelings if you experience them. Depression can make it difficult to perform daily tasks and cause you to sleep either too much or too little, leading to exhaustion, sleepiness, or fatigue. Other mental health issues such as stress and anxiety, as well as the difficulty of living with a chronic condition, can also contribute to fatigue.
If you are struggling with mental health issues like depression, anxiety, or excessive stress, talk with your doctor. They may refer you to a mental health specialist, such as a psychiatrist or psychotherapist (talk therapist), or recommend joining a support group to help you manage the challenges of life with HIV.
Some treatments for HIV may produce side effects that lead to sleep disturbances, making fatigue worse.
In particular, certain ART medications may make it difficult to sleep. The HIV drugs efavirenz (Sustiva), dolutegravir (Tivicay), and bictegravir (a component of the combination drug Biktarvy), for instance, can disrupt sleep or cause vivid dreams, nightmares, or insomnia as a side effect.
If you believe HIV treatments such as ART drugs may be causing difficulty sleeping or affecting your energy levels, talk to your doctor. Your health care team can work with you to find your most effective treatment and symptom management plan while minimizing side effects like fatigue.
Are you or a loved one living with HIV? Consider joining myHIVteam today. On myHIVteam, the social network and online support group for those living with HIV, more than 35,000 members talk about a range of personal experiences and struggles. Fatigue is one of the top three symptoms reported by members.
How do you manage fatigue? Do you have any suggestions for others experiencing fatigue and HIV? Share your thoughts or tips in the comments below or by posting on your Activities page.