If you’re living with human immunodeficiency virus (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.”
Although not nearly as common among people with HIV as it was in the past, fatigue can still be a frustrating symptom. Luckily, if you experience fatigue while living with HIV, you and your health care provider can work together to help you manage this symptom.
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 (ongoing) health condition like HIV can present many financial, emotional, and social challenges. Studies show that people with HIV are more likely to have mental health problems compared to those without HIV. The stress caused by receiving an HIV diagnosis, managing treatment interventions and appointments, evaluating how to start dating again, and disclosing your health 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.
In the United States, HIV is considered a disability under the Americans with Disabilities Act (ADA). People living with HIV are protected against discrimination and have certain rights to accommodations that can support their mental and physical health needs.
Mental health conditions, including depression and anxiety, can contribute to fatigue. Depression is a common source of fatigue among people with HIV. Fatigue can also make depression and other mental health struggles worse, leading to a negative feedback loop.
Mental health issues, including depression and anxiety, can contribute to fatigue.
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 because it is complex. Scientists have found that in people who are HIV-positive, their immune system mounts an attack against the virus, leading to inflammation.
Several studies have shown long-term inflammation in the brain may lead to a higher rate of depression in people living with HIV. Even low levels of inflammation can likely drain your energy, potentially leading to fatigue.
The inflammation in the brain in people living with HIV is also associated with HIV-Associated Neurocognitive Dysfunction (HAND), which results in symptoms of cognitive dysfunction and likely, fatigue. A study in the journal AIDS found that older people with HIV who experience fatigue often have trouble with thinking and memory. This difficulty can make them rely more on others to help with daily tasks.
The best way to keep fatigue in check if you’re living with HIV is to take antiretroviral therapy (ART) medications as prescribed by your doctor so that your viral load remains consistently undetectable. 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 2 to 4 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 mental health conditions, 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.”
“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.”
— A myHIVteam member
Getting plenty of quality sleep is also important for staving off chronic fatigue. If you have a sleep disorder or trouble sleeping, you may want to work toward developing a consistent bedtime routine (also called 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. Doctors 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 help reduce fatigue and 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, which may contribute to fatigue.
Because depression is one of the most common causes of fatigue in people living with HIV, it’s important to address these feelings. 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’re struggling with mental health issues like depression, anxiety, or excessive stress, talk with your doctor. They can screen you or give you simple tests that will help with a diagnosis, and treatment may be determined. 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 living with HIV.
Some treatments for HIV may produce side effects that lead to sleep disturbances, making fatigue worse.
In particular, certain HIV 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. To help minimize these side effects, take Sustiva on an empty stomach and take Tivicay and Biktarvy in the morning.
If you think your HIV treatments, such as ART drugs, are causing sleep problems or lowering 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 41,000 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.
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I Am 71 Years Old And Was Diagnosed With AIDS In 1999. In Addition To Causes Mentioned Does Aging Have An Effect On Fatigue?
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I feel so good after reading all the information presented because I am experiencing tiredness and fatigue, all of that mixed together causes me horrible anxiety attacks that sometimes I can't stand… read more
Que bien me siento después de leer toda la información expuesta por que estoy experimentado el cansancio y la fatiga, todo eso mezclado me provoca unos ataques de ansiedad horribles que aveces no… leer más
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