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 with HIV, especially those 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 reasonable energy on some days but not on others. Fatigue can have physical effects, leaving you unable to do the things you used to do and making simple tasks seem overwhelming. It can also have mental effects, making it difficult to focus on your work or leaving you without the motivation to carry out the tasks of daily living.
It is very important to discuss fatigue with your doctor 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. In order to assess your current level of energy, think back to years past, perhaps to a pre-HIV time, 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 doctor.
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 with advancing age.
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. 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 weight loss, work with your doctor 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.
If you are not on antiretroviral therapy, it is important to know that 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 with HIV, especially when their infection is not treated. Many people 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 in HIV disease. See the appendix for more information about this key vitamin for people 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 day with constant servings of sugar and coffee. This can temporarily give you more energy, but this boost is often followed by a crash. Getting off this rollercoaster can help you regain a more steady level of energy in the long run.
Drug and alcohol use are a common cause of persistent fatigue. If substance use has become a problem for you, seek help and referrals through your doctor or through your local AIDS service organization. Obesity can also contribute to fatigue; maintaining a healthy, balanced diet can help here.
Inadequate levels of certain hormones can occur in people with HIV, especially those whose infection is untreated. It is important to test for hormone deficiencies if you have persistent fatigue. If test results show low hormone levels, replacement with hormone therapy can improve the fatigue. Testosterone can be deficient in people with HIV and deficiency can be a major contributor to fatigue. Hypothyroidism (a deficiency of thyroid hormones) is also possible. Talk to your doctor 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.
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. (The section Emotional Wellness provides more detail.) In addition to emotional and social factors, causes of depression in people with HIV, especially in men, can include testosterone deficiency (see above). Vitamin D deficiency may also be a cause. Consider having your vitamin D level tested. See the appendix for more information about this key vitamin for people with HIV.
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 or homeopathic remedies are all ways to counter the effects stress has on your body and mind. Regular light exercise can also help improve symptoms of persistent fatigue. Check with your doctor before starting any exercise regimen. Read also the section Emotional Wellness for more information.
If you are not sleeping well or not sleeping enough, it is very important to address insomnia in order to restore a good night’s sleep. 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. For a full discussion, see the section Sleep Problems.
Antiretroviral medications can cause fatigue in people with HIV. Luckily, with the newer antiretroviral medications, this problem is less common than it once was. If you do experience this side effect, your fatigue will sometimes disappear after you have been on the drugs for some time. You may want to consider waiting to see if the fatigue passes. If it does not disappear or lessen with time, you may want to talk to your doctor about changing your combination. The fatigue should disappear fairly quickly once your medications are changed. The medications most likely to cause fatigue are those that can contribute to the development of anemia.
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 that can contribute to fatigue, so consult with your doctor and pharmacist about whether any prescription or over-the-counter medication you take could be causing your fatigue.
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)
- anti-hepatitis C drugs alpha interferon (PegIntron, Pegasys), ribavirin, boceprevir (Victrelis) and telaprevir (Incivek)
- anti-malarial drug pyrimethamine (Daraprim)
- various anti-cancer drugs.
Anyone with fatigue should have their red blood cell levels checked. Anemia is experienced by more than three-quarters of people with HIV whose disease has advanced because they are not on antiretroviral therapy. It is less common in people who are on therapy. In either case, treating anemia is critical. A large study found that regardless of CD4 count, the risk of death was substantially higher for people with anemia, and that recovery from anemia, by whatever means, significantly lowered that risk. Unfortunately, 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 (less common in men, but fairly common in women)
- 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. That is the Catch-22: the drugs you are taking may cause anemia, but 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.