Positive Life NSW

Do you want to boost your energy? Fatigue can be defined as tiredness that doesn’t go away when you rest. Fatigue can be physical or psychological. With physical fatigue, your muscles cannot do things as easily as they used to. You might notice this when you climb stairs or carry bags of groceries. With psychological fatigue, it may be difficult to concentrate for as long as you used to. It is important for people with HIV to find out what is causing fatigue and to treat it. This fact sheet lists a number of causes of fatigue and ways to deal with them.

1. Fatigue caused by HIV

When HIV is very active (also called having a high viral load) it can cause fatigue because your body is using a lot of energy constantly battling the virus. Other symptoms caused by a high viral load, such as diarrhoea and night sweats, can also contribute to fatigue.

Fatigue can be the first sign of an undiagnosed infection.

• Anti-HIV drugs can reduce the viral load to undetectable levels. Many people find they have more energy when their viral loads become undetectable. Starting HIV treatment is a major issue that needs to be discussed with your doctor and Treatment Information Officer.

2. Fatigue caused by other undiagnosed infections

Someone with an infection tires more easily because any spare energy they might have is being used fighting the infection. Undiagnosed infections such as hepatitis (inflammation of the liver), parasites in your digestive system or bronchitis can cause fatigue. If these infections are identified and treated, your energy should improve.

• Ask your doctor to investigate for any undiagnosed infections.
• Ask your doctor to monitor your immune system every three or six months. This gives you and your doctor advance warning if your immune system is unable to fight off some common infections that people with HIV/AIDS get. Your doctor can prevent these infections by prescribing medication.

Some HIV drugs can cause disturbed sleep, which can result in fatigue.

3. Fatigue caused by HIV medications

Some people experience fatigue when they start HIV medication, but this is usually a temporary side effect that disappears after the first few weeks of therapy. The HIV drug AZT may cause fatigue by slowing the production of red blood cells (which carry oxygen around the body). Fatigue is one of the initial symptoms of lactic acidosis, an extremely rare side effect of some HIV drugs, such as d4T and ddI.

• First, get your doctor to rule out other causes of fatigue.
• Given that fatigue is a common, temporary side effect when starting HIV medication, your doctor may suggest that you wait for several weeks, during which the fatigue may go away.
• If the fatigue is still there after several weeks of treatment, consult with your doctor as to whether one of your HIV drugs is the cause. If it is, ask your doctor if you have other treatment options.
• Efavirenz, an HIV medication usually taken at night can cause disturbed sleep, leading to fatigue. When efavirenz is taken with food, drug levels are boosted by approximately 20%, potentially increasing the likelihood of disturbed sleep – taking the drug on an empty stomach can help. Some people find that when they switch their dosing time to mornings, their sleeping patterns improve. Make sure you discuss this with your doctor before you try it.

Depression is more than just feeling sad. There can be chemical changes in the brain that cause fatigue and a lack of interest in daily activities. You don't have to suffer from depression. Many treatments are available that can help you get your life back.

4. Fatigue caused by depression

When HIV positive people feel out of control with their lives or are forced to cope with constant changes, they may ‘run low’ on the brain chemicals which help to cope with change. When this happens they may begin to be aware of the symptoms of depression.

• Get a diagnosis from your doctor or other health care professional. Once you know that depression is contributing to your fatigue, you can start to address it.
• Consider self-help strategies (consult with your therapist or doctor before trying any self-help techniques for depression), for example:
  • meditation
  • get a pet
  • goal-setting and time management
  • stress management
  • relaxation techniques
  • exercise
  • support groups
• Counselling can help you to realise that depression is not your fault; it is not due to something you have done or not done. It also empowers you to begin to manage your condition yourself. Ask your GP for a referral to a counsellor. The ACON Counselling and Assessment Team has trained and professional counsellors able to help you deal with issues in many areas (see contact details at the end of this factsheet).
• Many health professionals recommend combining support and counselling with antidepressants. These drugs relieve the symptoms of depression by acting on the brain’s neurotransmitter system, which influences mood and behaviour. Antidepressants take a few weeks to work, can interact with HIV medication and have other side effects, which should be discussed with your doctor.

In women as well as men, low levels of the sex hormone testosterone can cause fatigue and lack of interest in sex and other normal activities.

People with HIV may suffer from lack of appetite caused by illness, drug-related altered taste sensation, or may find eating difficult because of mouth sores, lack of saliva and oral thrush.

5. Fatigue caused by low hormone levels

Ageing, the direct effects of HIV or the chronic nature of HIV infection can cause decreased testosterone levels.

• Hormone levels can be checked with blood tests but it is not a routine test. You need to ask your doctor to check your testosterone levels. Patches, creams, injections or implants can restore hormone levels to normal.

6. Fatigue caused by poor nutrition

The body can only perform normally if it gets sufficient fuel, i.e. food. One of the body’s responses to an inadequate food supply is to conserve energy. The brain gets a biochemical message to reduce activity, with the result that a person experiences increased weakness and fatigue when they try to do something that requires energy.

• Seek treatment for any mouth sores, lack of saliva and oral thrush that may be discouraging you from eating.
• Ask your doctor for a referral to a HIV dietitian, who will evaluate your diet and produce an individualised nutrition plan to help address any deficiencies (see the factsheet on nutrition and diet).
• Snacks can increase your energy intake. As well as breakfast, lunch and dinner try to include morning tea, afternoon tea and supper (i.e. 6 small, frequent meals).
• Try to make everything you eat and drink ‘count’. Avoid low energy foods and drinks such as diet soft drinks and cordials. Instead, choose milkshakes or fruit juices.
• Enrich the foods you are already eating. Try adding skim milk powder to your mashed potatoes and milkshakes.

Lack of exercise not only reduces energy levels but also increases the risk of heart disease, colon cancer, diabetes, and high blood pressure. Many studies have found exercise to be beneficial to people with HIV.

Fatigue may be caused by low levels of certain vitamins and minerals.

Depression, stress, and drug side effects are just some of the possible
causes of insomnia.

7. Fatigue caused by lack of exercise

Aerobic exercise (jogging, rowing, swimming, and cycling) makes your heart stronger and more efficient. Weight lifting creates stronger muscles that give you the endurance to get yourself through the day with energy to spare. Exercise can also improve the quality of your sleep, so you feel more rested even after spending the same amount of time in bed.

• Exercise needn’t be strenuous – a short, brisk walk will do. It doesn’t have to take much time either – as little as ten minutes counts towards the total of 30 minutes exercise we need to do each day. You can do this 30 minutes in one go, or break it up into shorter sessions of ten or 15 minutes – this makes it easier to fit into your day. Exercise needn’t be difficult – it just has to be regular.
• ACON has developed Healthy Life +, a 12-week gym program for HIV positive gay men around exercise, general health and diet that runs regularly during the year. Phone ACON on 02 9206 2000 to find out when the next program starts, or ask for the accompanying booklet.
• The Positive Access Program at FitXGym in Surry Hills is a program reserving the gym exclusively for HIV positive clients at certain times. Phone Ingrid at the gym on 0400 712 964.
• Join a sporting group. Most encourage people living with HIV to participate.

8. Fatigue caused by vitamin and mineral deficiencies

Even if you are eating well, you may not be absorbing the goodness from the food you eat due to diarrhoea, stomach bugs or opportunistic infections.

• A nourishing, balanced diet may reduce fatigue. Consult a HIV dietitian about minimising fatigue through dietary changes and supplements.
• Certain vitamins and minerals have also been shown to be low in HIV-positive people and are often associated with weight loss and fatigue. Before you use vitamin and mineral supplements, discuss your plans with your doctor or dietitian.

9. Fatigue caused by insomnia (sleep problems)

From time to time everyone has problems with disrupted sleep, difficulty falling asleep, or waking up too early and not getting back to sleep. If your sleep problems last for longer than a week and are interfering with the way you feel or function during the day, you need to take action.

• You’ll need to seek your doctor’s help to rule out any other underlying medical cause. These can include sleep apnoea (periods of stopped breathing), or restless leg syndrome (muscle spasms that occur during the night and may disrupt sleep). If your doctor can’t diagnose any specific cause for your insomnia, it may be a good idea to establish daily routines that reduce the likelihood of insomnia.
• Consider complementary therapies such as massage or acupuncture to relieve anxiety or fatigue.
• Reduce your intake of coffee, alcohol and recreational drugs.
• Practice good sleep hygiene, that is, going to bed at the same time each night and using the bed for sleep and sex only.
• Don’t nap during the day, since it affects your ability to sleep at night.
• Try relaxation techniques prior to bedtime with a warm bath, yoga or breathing exercises.

10. Fatigue caused by recreational drugs/alcohol

The after-effects of amphetamines, ecstasy, cocaine and alcohol are common causes of fatigue. These drugs are known to cause sleep disorders, dehydration and lethargy “the day after”.

• By drinking lots of fluids you can minimise dehydration and aid in the recovery process. Also, good nutrition with fresh food, such as fruit and vegetables can lessen the “come down” effect by replenishing the body.
• Use the counselling contact details (listed under “depression”) if you are worried about your recreational drug use.
• If you don’t want the consequences, don’t take the drugs.

Contacts

• Services provided by the AIDS Council of NSW (ACON):
  • Counselling and Assessment Team
    T 02 9206 2000. Outside Sydney 1800 647 750 between 10.00am and 6.00pm Mon–Fri. Trained and professional staff offer a free & confidential service to people living with, affected by or at risk of HIV/AIDS as well as gay men, lesbians, bisexuals and transgender people, regardless of their sero-status.
  • ACON’S Treatment Information Officers
    T 02 9206 2013 or 9206 2036. Freecall 1800 816 518 Call for up to date information about treatments for HIV.
  • ACON’s Women’s HIV Support
    T 02 9206 2012. Information, education, support and referral services to women living with HIV/AIDS.
• Services from other organisations:
  • Positive Life NSW
    T 02 9361 6011/02 9360 3504 Freecall1800 245 677. A non-profit community organisation representing the interests of people living with HIV/AIDS in New South Wales.
  • Albion Street Centre Psychology Unit Mon–Fri 9am–7pm Psychology Unit Manager T 02 9332 9600 24hr Crisis T 02 9382 2222 (ask for Albion St counsellor on call). Free and confidential psychological and counselling services to HIV positive people, their partners, carers, family and friends.
  • Gay and Lesbian Counselling Service of NSW Counselling Line (4pm – Midnight, 7 days)
    T 02 9207 2800 Freecall 1800 184 527. A free, anonymous and confidential telephone counselling, information and referral service across NSW on sexuality and life issues.
  • Multicultural HIV/AIDS Service T 02 9515 3098 Freecall 1800 108 098 Mon–Fri 9am–5pm. Bilingual/ bicultural co-workers providing emotional support, advocacy and information to people living with HIV/AIDS from non-English speaking backgrounds.
  • The Australian Psychological Society
    T 1800 333 497 www.psychsociety.com.au Find out the nearest registered psychologist to you.
  • FitXGym, Surry Hills. Telephone Ingrid Cullen (Positive Access Program instructor) T 0400 712 964. The Positive Access Program offers positive people an opportunity to exercise in a comfortable, supportive environment, where individually tailored programs are implemented for HIV+ people who are usually not comfortable in the average commercial gym environment.
• For regional NSW HIV/AIDS and related services:
  • Contacts A directory of services for people living with HIV/AIDS. Available from People Living With HIV/AIDS (NSW) Inc. T 02 9361 6011. Freecall1800 245 677.

For more information

• AIDS Treatment News; Fatigue (http://www.aids.org/FactSheets/550-fatigue.html)
• Baker et al, Critical Issues in HIV Therapy: Managing CNS Symptoms, highlights from a workshop held in New York, December 1–2, 2000.
• Batrouney, C. AZT, HIV Drug Book, Australian Federation of AIDS Organisations, Australian National Council on AIDS and Related Diseases, 1998.
• Gamundi R, et al. Everything you wanted to know about HIV-related fatigue but were afraid to ask (http://www.iapac.org/indexpatormetdisplay.asp?catid=185&artid=320)
• Healthy Life +, AIDS Council of NSW, March 2002
• Irvine, S. Feelings, Moods and Fears – Depression and Anxiety, School of Community Medicine, UNSW, 1999.
• Sadler, S. Nutrition Unit Manager, Albion Street Centre. 150–154 Albion St Surry Hills, NSW 2010 Australia
• Wilson, A. Exercise: You only have to take it regularly, not seriously,1998, NSW Health (http://www.mhcs.health.nsw.gov.au/health-public-affairs/mhcs/publication...)

Produced by the Health Promotion Unit of Positive Life NSW.

Copyright © 2003 Positive Life NSW. This fact sheet may be copied for personal or organisational use provided you acknowledge Positive Life NSW.

Funded by NSW Health.

This fact sheet was produced with the assistance of an unconditional educational grant from Gilead Sciences Pty Ltd.

This is only an extract of the text from this fact sheet; use the links at right to obtain the full content.