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Fatigue

Fatigue can be characterized as tiredness, lethargy or a lack of energy and is a common symptom in people living with HIV. Fatigue can have physical and mental effects, leaving you unable to do the things you used to do. Fatigue can have many causes, not all of which are related to HIV. The good news is that by addressing factors that may be causing fatigue, many people are able to return to full energy.

Figuring out the cause

Fatigue is different from sleepiness or simple tiredness from a busy schedule or hectic lifestyle. Fatigue usually goes on for weeks or months and is not always relieved by getting enough sleep or taking breaks. Fatigue can occur in people living with HIV, especially people who are not taking treatment. Some people wake up each day feeling like they don’t want to get out of bed and spend the whole day exhausted. For others, fatigue comes and goes. They have energy on some days but not on others. Fatigue can have physical effects, leaving a person unable to do the things they used to do, making simple tasks seem overwhelming. It can also have mental effects, making it difficult to focus on work or school, or can leave a person without the motivation to carry out the tasks of daily living.

It is very important to discuss fatigue with your healthcare provider since it could indicate an important health problem that needs attention. Because fatigue can develop very gradually, you may not realize how exhausted you truly are. To assess your current level of energy, think back on years past, perhaps to a time before HIV, and ask yourself whether your energy level now is similar to the past. Are you able to work a full day and still have the energy for a fulfilling social life? Or do you come home so exhausted that you collapse on the sofa? Do you have the energy to exercise as often as you would like, or is just the thought of hitting the gym exhausting? How do you feel when you wake up in the morning? Are you getting out of bed feeling great, or are you dragging yourself out and forcing yourself to keep moving? Do you find yourself dozing off or, perhaps, reaching for yet another cup of coffee just to stay awake? In general, think about how your level of energy affects your daily life, and describe this to your healthcare provider.

In addition to the conditions described below, a medical evaluation to exclude other potentially serious non-HIV-related illnesses is also important. This is especially true as we grow older.

Antiretroviral medications

Antiretroviral medications can sometimes cause fatigue in people living with HIV. Luckily, with the newer antiretroviral medications, this is uncommon. If you do experience this side effect, your fatigue will sometimes disappear after you have been on the drugs for some time. If it does not disappear or lessen with time, you should talk to your healthcare provider about investigating the cause of your fatigue. If no other cause has been found, your fatigue may be caused by your HIV treatment. It may be possible for you to change your treatment to see if this has an impact on your fatigue. If the cause of fatigue is from your medications, then fatigue should disappear fairly. 

Other medications

Many drugs, including over-the-counter medications, can cause fatigue. Antihistamines, often used by people with seasonal allergies, can cause drowsiness and are a common cause of fatigue. But there are many medications (other than those for HIV) that can contribute to fatigue, so consult with your healthcare provider and pharmacist about whether any prescription or over-the-counter medication you take could be causing your fatigue.

Infections

As long as any infection continues, whether it is HIV- related or simply a cold or flu, it is likely to contribute to fatigue. Long-term infection by viral hepatitis, such as hepatitis C, is one possible infection to be tested for. It is possible that fatigue could arise as a consequence of COVID-19 or other viral infections. Some people who have had this illness report persistent fatigue for weeks or months, continuing long after the initial symptoms of COVID-19 have cleared. If you have not been diagnosed with an infection but have fatigue, especially along with any other symptoms that might indicate an infection (like fever, chills, body aches, sweating or unintentional weight loss), work with your healthcare provider to determine if you have an ongoing, undiagnosed infection. If you have been diagnosed with an infection, be sure that it is fully treated. It may not be possible to return to good energy until an infection has been fully addressed.

HIV infection itself can contribute to fatigue. Many people find that one of the great benefits of starting on antiretroviral therapy is a tremendous return of energy. As your viral load drops to undetectable levels, your energy level will often increase.

Diet, nutrition and herbal therapies

What you eat can contribute to fatigue. Nutrient deficiencies can occur in people living with HIV, especially when their HIV is not treated. Many people living with HIV take a multivitamin-mineral. Other supplements can also help ensure your body has all the nutrients it needs for health and energy. For example, vitamin B12 is important for good energy and studies have shown a high rate of B12 deficiency among people living with HIV. The herbal therapies rhodolia, licorice and ginseng may also be helpful in alleviating fatigue.

Some people who are fatigued get themselves through the with a high intake of sugar and coffee. This can temporarily give you more energy, but this boost is often followed by an energy crash. Reducing your sugar and caffeine intake can help you regain a steady level of energy in the long run.

Alcohol and drug use are a common cause of persistent fatigue. If substance use has become a problem for you, seek help and referrals through your healthcare provider or a community organization, such as your local AIDS service organization. 

Hormone deficiencies

Inadequate levels of certain hormones can occur in people living with HIV, especially among people who are not on HIV treatment. It is important to test for hormone deficiencies if you have persistent fatigue. If test results show low hormone levels, then replacement with hormone therapy may reduce fatigue. Testosterone can be deficient in people living with HIV, and this deficiency can be a major contributor to fatigue. Hypothyroidism (a deficiency of thyroid hormones) is also possible. Talk to your healthcare provider about checking your TSH level (this is an indirect indicator of thyroid function) and your thyroid hormones (especially free T3 and free T4) levels if you have persistent fatigue. Proper thyroid hormone replacement therapy can be a very important step in restoring good energy levels. If you are a trans person taking gender-affirming hormones, talk to your healthcare provider about monitoring your thyroid function, as this can be affected by estrogen- and testosterone-based therapies. 

Depression, stress and not getting enough rest

Depression almost always causes fatigue, and fatigue may be the first symptom of depression. Talk therapy, and sometimes medication, can help alleviate the depression. 

Stress can contribute to fatigue, so do your best to avoid it as much as possible. Where you can’t avoid it, try to find ways to counter it using whatever combination of approaches works best for you. Meditation, yoga, breathing exercises, talk therapy and herbal remedies may help to counter the effects stress has on your body and mind. Regular light exercise can also help improve symptoms of persistent fatigue. 

If you are not sleeping well or not sleeping enough, it is very important to address insomnia. Sleep apnea (the slowing or stopping of breathing while asleep) can also lead to not getting enough sleep. It can be helpful to take naps, especially when the previous night’s sleep was inadequate. 

Anemia

Anemia is a problem of the red blood cells (RBC) and is indicated by decreases in blood test results for hemoglobin, hematocrit and RBC count. Blood cells are produced in your body’s bone marrow. When your bone marrow isn’t functioning properly, the result is anemia. Accompanying fatigue is highly likely. Medications that can suppress bone marrow and lead to anemia include:

  • antiretroviral drug AZT (Retrovir, and in Combivir and Trizivir)
  • cytomegalovirus (CMV) drug valganciclovir (Valcyte)
  • sulfa antibiotics (Septra/Bactrim, Dapsone)
  • ribavirin
  • anti-malarial drug pyrimethamine (Daraprim)
  • various anti-cancer drugs

Anyone with fatigue should have their red blood cell levels checked. Anemia is experienced by the majority of people living with advanced HIV who are not on antiretroviral therapy. It is much less common in people who are on antiretroviral therapy, but should still be checked.

Anemia too often goes untreated. Symptoms of anemia include:

  • fatigue and weakness
  • shortness of breath
  • heart palpitations
  • increased susceptibility to infections

Medications are not the only cause of anemia. Other possible causes include:

  • heavy bleeding during menstrual periods
  • deficiencies of folic acid and vitamin B12
  • iron deficiency 
  • infections such as Mycobacterium avium complex, tuberculosis, CMV colitis, parvovirus B19, cryptococcal meningitis and other fungal infections
  • kidney disease
  • cancers such as lymphoma and Kaposi’s sarcoma
  • late stages of hepatitis C infection

HIV itself can also cause anemia. On the one hand, the HIV drugs you are taking may cause anemia, but, if left untreated, HIV will impair the production of red blood cells. If you are not currently on antiretroviral therapy and are diagnosed with anemia, consider starting antiretroviral therapy.

Some people with severe anemia associated with cancer, kidney disease or hepatitis C medications will benefit from injections of erythropoietin or related drugs (Epo, Aranesp or Eprex), which promote the production of red blood cells. It will often resolve anemia within four to six weeks (the time needed for the new red blood cells to be created) and return energy to your life. However, erythropoietin cannot work alone. It provides the stimulus for the bone marrow to produce more cells, but the actual building blocks for the cells include iron and the B-complex vitamins folate and vitamin B12. You should always accompany use of erythropoietin with the B vitamins and, if testing shows the need, with an iron supplement. Blood transfusions can provide short-term relief in severe cases.