Key points

  • Pain can cause emotional and mental health problems.
  • Medication can be used in both the short and long term to control pain.
  • Treating underlying medical problems may help to address chronic pain.

Every day most of us will experience physical pain of some sort. For the most part it will cause only minor discomfort and won’t interfere with day-to-day life, and will go away either of its own accord, after rest, with the use of mild painkillers or with a gentle physical treatment like massage.

However, pain in both the short term (acute), and long term (chronic), can be significant enough to lower quality of life, and in severe cases profoundly disrupt your ability to engage in day-to-day activities.

Pain can also cause both short-term and long-term emotional and mental health problems.

Causes

The causes of pain in people living with HIV are varied and often won’t be connected to HIV. Short-term pain can be caused by infections, injuries or surgery, or may even have no apparent cause. Nevertheless, the pain will go as the body recovers or heals.

Chronic pain in people living with HIV can be caused by infections, cancers, gut problems, and nerve damage, such as peripheral neuropathy. Many of these conditions can be avoided by starting HIV treatment before your immune system is too damaged (a low CD4 cell count).

HIV treatment can also cause side-effects which can be painful. The worst examples of these are caused by older anti-HIV drugs no longer routinely used in the UK. For example, some of the nucleoside reverse transcriptase inhibitors (NRTI) drugs, particularly the older 'd' drugs ddI (Videx) and d4T (Zerit), caused a condition called peripheral neuropathy, damaging the nerves in the feet and lower legs, and occasionally the hands. The fat wasting caused by some now rarely used anti-HIV drugs, particularly in the buttocks, can cause discomfort when sitting.

"If an anti-HIV drug or other medicine is causing painful side-effects, it may be possible to change to medicines which don’t have such side-effects."

Some protease inhibitors can also cause painful side-effects, including stomach cramps, and kidney stones.

The drugs most commonly used in routine HIV treatment these days are much less likely to cause side-effects like these. However, even the latest anti-HIV drugs can cause some pain, such as muscle pain or headache, or make you feel generally unwell. If you have concerns about side-effects, it is important to talk to your doctor about them, so you can choose the best treatment for you.

What to do

Pain which has minor causes will often go away quite quickly without you taking any action. However, both acute and chronic pain can be distressing and disabling, and can also be a warning sign of an underlying medical problem. It is important to tell your HIV doctor or your GP if you are experiencing distressing or constant pain so they can find out the causes and treat them.

Treating underlying medical problems can help address pain in the long term. If an anti-HIV drug or other medicine is causing uncomfortable or painful side-effects, it may be possible to change to medicines which don’t have such side-effects. Talk to your doctor about the effect this pain is having on your life, as it is a valid reason to change treatment.

Glossary

chronic infection

When somebody has had an infection for at least six months. See also ‘acute infection’.

neuropathy

Damage to the nerves.

peripheral neuropathy

Damage to the nerves of the hands and/or feet, causing symptoms ranging from numbness to excruciating pain.

acute infection

The very first few weeks of infection, until the body has created antibodies against the infection. During acute HIV infection, HIV is highly infectious because the virus is multiplying at a very rapid rate. The symptoms of acute HIV infection can include fever, rash, chills, headache, fatigue, nausea, diarrhoea, sore throat, night sweats, appetite loss, mouth ulcers, swollen lymph nodes, muscle and joint aches – all of them symptoms of an acute inflammation (immune reaction).

effectiveness

How well something works (in real life conditions). See also 'efficacy'.

Pain-killing medication of varying strengths can also be used in both the short and long term to control pain. Aspirin, paracetamol and ibuprofen are painkillers available over the counter without a prescription. There is more information on which painkillers work best for different types of pain on the NHS Choices website.

If the pain lasts for more than a few days, or is very severe, see a doctor. Never take more than the recommended daily dose of any pain medication. Over-the-counter pain medication should be used very cautiously if you have liver problems.

Managing chronic pain can be more difficult. You might need to receive treatment from a specialist pain clinic, which your doctor can refer you to.

There’s nearly always a way to control pain, and you should talk over your options with your doctor, when you will have an opportunity to discuss the side-effects of pain medication and possible interactions with other drugs you are taking.

Physiotherapy can be a good way of providing both a short- and long-term solution to skeleto-muscular pain, and your doctor can provide you with a referral.

Complementary approaches

Acupuncture, massage and osteopathy can relieve pain. Gentle exercise can also be effective for some kinds of pain, as can heat and cold. There is more information on different types of help for pain on the NHS Choices website and the website of the British Pain Society.

Cannabis, an illegal drug, is also sometimes used by people to relieve pain.

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