- Fatigue is common among people living with HIV and can have a substantial impact on your day-to-day life.
- There are many different medical causes of fatigue, and many are not fully understood. It may be caused by HIV itself or its treatment, or something else not necessarily related to HIV.
- Being physically active, eating a healthy diet, and using techniques to improve the quality of your sleep can also help you to manage the symptoms of fatigue.
Fatigue is extreme tiredness or exhaustion that can be experienced at any time of the day and affects your ability to carry out daily tasks.
Fatigue is common among people with HIV. There are a range of medical and day-to-day factors which can cause fatigue and affect how you experience it. There are activities you can do to help you manage fatigue.
Everyone feels tired from time to time, and this is usually because they are not getting enough sleep. Insomnia, difficulty sleeping, and disturbed sleep can have several different causes and tackling them can make a big difference to your mood and wellbeing. There’s more advice on our sleep page.
However, fatigue is a tiredness that is not cured by rest. It can have a profound effect on people’s lives and affect them physically, emotionally, socially, and cognitively.
Effects of fatigue
Some people only experience mild symptoms of fatigue and find that it does not affect their day-to-day life too much. Others may experience symptoms which are much more debilitating.
Many people living with HIV experience symptoms of fatigue episodically, meaning they may come and go over time. This can make fatigue feel especially difficult to manage as fluctuating energy levels can make it hard to plan ahead.
Some of the more common effects of fatigue include:
- difficulty doing simple things, such as brushing your hair or getting dressed
- feeling you have no energy or strength
- difficulty concentrating and remembering things (brain fog)
- difficulty thinking, speaking, or making decisions
- feeling anxious and worried
- feeling breathless after light activity
- feeling dizzy or lightheaded
- difficulty sleeping (insomnia)
- losing interest in sex
- feeling low in mood and more emotional than usual.
Having one or more of these symptoms can affect your daily life. You may find you need to take time off or stop working altogether because of fatigue, which may affect you financially.
Fatigue can also impact your relationships. You may need to rest more, meaning you might not spend as much time with friends and family. Or you may avoid going out or being with friends because it makes you very tired.
Causes of fatigue
The causes of fatigue in people living with HIV vary and are not all fully understood. You may be affected by several different causes of fatigue, which can make your symptoms worse. They can include:
- HIV and how it affects the body
- Side effects of some HIV medications which can affect the quality of your sleep (disturbed sleep, vivid dreams, and insomnia)
- Other health conditions and/or the medications used to treat them
- Low levels of vitamins and minerals
- Low hormone levels
- Psychological causes of fatigue, such as depression or anxiety
HIV and its treatment
Fatigue can be caused by HIV, although clinical researchers are still not clear on how this happens. What we do know is that HIV is a chronic (long-term) condition, and the body mounts a strong immune response against the virus. Even in people with an undetectable viral load, low-level inflammation caused by HIV can use up a lot of energy. This means that fatigue might develop because the body is working so hard to fight HIV.
You may be more likely to develop fatigue if you have a high viral load. The aim of HIV treatment is to reduce the amount of HIV virus in the blood to undetectable levels. People often report an increase in their energy levels after starting HIV treatment.
Even though anti-HIV drugs may improve energy levels, some may also cause difficulty sleeping and contribute to fatigue. In particular, vivid dreams and insomnia are among the most common side effects of efavirenz (Sustiva, also in the combination pill Atripla). Some people also have insomnia from dolutegravir (Tivicay, also in the combination pills Juluca, Dovato, and Triumeq). Insomnia is sometimes found with ritonavir (Norvir, also in Kaletra). You may also be taking ritonavir if your HIV treatment contains darunavir (Prezista) or atazanavir (Reyataz). In many cases, these side effects will lessen or go away after the first few weeks of starting HIV treatment.
If you think your fatigue is being caused by side-effects from your HIV medication, speak to your doctor. They may recommend taking your pills in the morning instead of at night, or a change in treatment. It's important to also rule out other causes of fatigue and discuss your treatment choices with your doctor.
Other health conditions and medications
There are various other medical causes of fatigue. A minor illness like a common cold can leave you feeling tired out, even after the symptoms have gone. Some more serious infections, like pneumonia or tuberculosis (TB) can involve very serious tiredness and you will likely need to rest a lot if you’ve experienced these infections. Some viral infections, including COVID-19, can cause fatigue for weeks or months after the infection has gone.
Other illnesses, including heart disease, diabetes, cancers, and chronic kidney disease, can also cause fatigue. These conditions are all relatively common in people living with HIV.
Sleep disturbance or anaemia leading to fatigue may also be side-effects of other medications, including medications used to reduce blood pressure (such as beta-blockers) and the hepatitis C treatment ribavirin.
Low levels of certain vitamins and minerals
Anaemia (a condition in which there is a lack of red blood cells in the body) can cause fatigue. Iron deficiency anaemia is the most common type, but it can also be caused by a lack of vitamin B12 or folate (vitamin B9). Your doctor can check for anaemia with a blood test.
A nourishing, balanced diet may help to reduce fatigue. It's a good idea to consult an HIV dietitian about minimising fatigue through dietary changes and supplements. Even if you are eating well, you may not be absorbing all the goodness from the food you eat due to diarrhoea, stomach bugs or opportunistic infections. Speak to your doctor if you are experiencing any of these problems, so you can receive treatment.
If you are underweight or overweight this can worsen your fatigue. If you’re an unhealthy weight for your height, your body has to use more energy to do everyday tasks which means you’ll get tired more easily.
Hormone levels and pregnancy
Low levels of hormones may cause fatigue. This can be the result of an underactive thyroid or be caused by something else – the reasons behind hormone deficiencies in people with HIV are often complex.
Testosterone is especially important for maintaining energy levels in both men and women. If a test shows that you have low levels of this hormone, your doctor may be able to give you testosterone tablets, patches, or injections until the problem is sorted out. Sometimes steroids may be used to give you energy and build muscles, in conjunction with regular exercise.
Being pregnant can also cause fatigue, particularly in the first three months of pregnancy.
Psychological causes of fatigue
You can develop fatigue if you are having difficulty sleeping. Difficulty sleeping can often have psychological causes – in fact, this is much more common than physical causes.
Depression is the most common cause of fatigue. Depression reduces your motivation to do things and can lead to too much or too little sleep. This can make both your fatigue and your depression worse.
Stress and worrying are a natural response to the daily strains of life and can disrupt sleep and lead to fatigue. Emotional shocks such as bereavements, redundancy, or a relationship break-up may lead to stress. The shock of receiving an HIV diagnosis, or the strain of dealing with HIV stigma, can also cause significant stress. Even positive events, such as getting married or moving house, can cause stress.
Anxiety is also a common cause of sleep disturbance and fatigue. Some anxiety medications, such as benzodiazepines, can cause fatigue as a side-effect.
If you are struggling psychologically, taking steps to improve your mental health may also improve your energy levels. Support from family and friends often helps. You might also consider trying talking therapy, like counselling or cognitive behavioural therapy (CBT). Your GP can refer you for talking therapy, or you can make a self-referral on the NHS website.
Dealing with fatigue
When you are feeling exhausted most or all the time, it is easy to feel overwhelmed. You may struggle to imagine that you could ever feel any different, but there are things that can help to manage fatigue and reduce symptoms.
Talk to a health professional you trust about how you are feeling and ask for their opinion and advice. You might find it helpful to prepare for your next appointment by keeping a diary of your symptoms and making notes on activities that you find difficult.
Your HIV doctor or GP can check for causes of fatigue that can be treated, such as anaemia. To do this, they may examine you and do some blood tests. They may also review any medicines you are taking in case they are causing or contributing to fatigue.
There are also various things that you can do on your own to help improve your energy levels. Talk to your HIV doctor, GP, or another trusted health professional first before making any big changes. They can make sure what you are planning is suitable for you.
Physical activity and exercise
It may seem the last thing that you want to do when you’re feeling exhausted, but physical activity and exercise is often one of the key things that can help reduce fatigue in people with HIV. In some cases, such as for people with long COVID or myalgic encephalomyelitis / chronic fatigue syndrome, exercise may not be an appropriate treatment, so it’s important to discuss your plans with your doctor first.
If you haven’t been physically active for a while, its fine to start slowly and build up your activity gradually. Your doctor can give you advice on the type and amount of activity that is safe for you. They may also be able to refer you to a physiotherapist who can help you with some exercises to build up strength and energy.
It’s best if you find a type of exercise you will enjoy, and you might find that you are more motivated and enjoy it more in a group.
You may find that sometimes it isn’t possible to be active in the way you would like, especially if your fatigue comes and goes. Some activity is better than no activity at all, so it can help to set simple goals (even if this means just walking from the front door to the back door, or round the block) and building up your activity levels again from there. Physical activity can help to reduce fluctuations in energy levels and make them less extreme, so you may find that this becomes less of a problem over time.
Speaking to your friends and family or other people you trust about how you feel may help you feel better able to cope. If you feel like you don’t have anyone you can talk to about how you’re feeling, you might benefit from accessing peer support via an HIV support charity.
Family, friends, neighbours, or other people in your support network can also help you out practically. They may be able to help with tasks like gardening and food shopping if you don’t have the energy to do them yourself.
Depending on your circumstances, you may also be able to get home help from social services. An occupational therapist can also visit your home to identify practical ways of helping you to carry out daily tasks more easily, such as installing a shower seat. Your HIV doctor, specialist nurse or GP can refer you to an occupational therapist.
Eat regular, healthy meals and snacks
Maintaining a healthy diet and eating regular meals is important to provide your body with the energy it needs throughout the day. You should also drink plenty of water.
Try having ready-made meals or pre-cooked food when you are most tired. You could prepare extra meals or double portions when you are feeling less tired and freeze them for when you need them.
Reduce caffeine and alcohol
Caffeine and alcohol disrupt sleep so it’s best to reduce your intake of these substances, especially in the three to four hours before going to bed. It can help instead to have a warm non-caffeinated drink such as chamomile tea or milk.
Nicotine disrupts sleep and weakens your immune system so stopping smoking can help reduce fatigue. There is more information and advice on stopping smoking on our Smoking and HIV page.
Use techniques to improve sleep quality
Establishing a bedtime routine can help improve your sleep. This might include going to bed at the same time every day, avoiding watching TV or using your phone or computer in the hour immediately before bed, and practising mindfulness before you go to sleep. You can find more advice and information on our sleep page.
Allow yourself time to relax
Activities such as meditation, yoga and massage may help you to relax and feel more in control of your health.
Coping with fatigue at work
If you find that fatigue is affecting your ability to work, it can help to talk to your employer and let them know that you may need some time off or adjustments to your role that could help support you to keep working if you want to.
If your employer knows you have HIV, you are automatically protected by the Equality Act, which prevents employers victimising or discriminating against people with a disability. HIV is considered a disability under the Equality Act, but you do not need to view your HIV as a disability to be protected by this law. The Act also states that employers are expected to make reasonable adjustments to support employees in the workplace.
You do not need to tell your employer you have HIV in order to make requests for time off or adjustments to your role. However, if you do tell them, and they still refuse to grant your request, you would have a stronger legal case if you need to challenge their decision.
It may be helpful to make suggestions for adjustments that could help to support you. Things that your employer can do to help include:
- changing your hours so that you can travel to and from work at less busy times
- asking colleagues to be supportive and to help with some of your work
- finding you a parking place near to your place of work
- letting you take a short break every now and again to rest
- allowing you to work from home, if possible
- finding you lighter work if your job involves physical exertion or heavy lifting.
If you are self-employed, it can help to talk to the Department for Work and Pensions about benefits that you may be entitled to claim.
There are more tips on managing and living with fatigue on the NHS Inform website.
The Moving Medicine website outlines the evidence for the benefits of physical activity for people with long-term health conditions. The Chartered Society of Physiotherapy also has a leaflet specifically on physical activity for people living with HIV.
Thanks to Jo Josh and Professor Joachim Voss for their advice and input.