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Key points

  • Many people living with HIV, especially older people, experience pain.
  • Pain is your brain’s protective response to a potential or actual threat.
  • Everyone’s experience of pain is different as it is influenced by biological, psychological, and social factors.
  • Persistent or chronic pain is pain that lasts longer than three months.

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. Such pain will generally go away on its own or with the use of mild pain medications, or a gentle physical treatment like massage.

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

Understanding pain

Pain is a protective response to a perceived or actual threat. Nerve endings called nociceptors detect possible danger and send this information to the brain. The brain combines this with other information which will influence whether it issues a pain response.

Sometimes, the brain will wait until it has enough information before issuing a pain response. For example, you might accidentally cut yourself, but you don’t feel any pain until you see that it is bleeding, since the brain recognises blood as indicating danger. Short-term pain serves as a warning signal to protect you from danger. When pain lasts a long time, this warning signal is going off even when you are not in danger.

Pain is subjective. Everyone experiences and responds to pain differently, which is why doctors have often found it difficult to measure. The only way that someone can tell if you are in pain is if you tell them, or if your facial expressions and body postures show that you are in pain. Regardless of how you experience it, the pain you experience is always real.

The challenging thing about pain is that it often isn’t a reliable indicator of the extent of an injury or other physical harm to your body. There are lots of examples of people with serious injuries who only feel pain once they are out of danger, and others where people are in excruciating pain without any obvious physical harm.

Instead, pain is an experience shaped by a range of interconnected biological, psychological, and social factors. While many of these factors have been identified as being associated with pain, how exactly they influence pain and the impact it has on a person is not yet fully understood.

The most obvious influences on our experience of pain are the presence of physical problems such as fractures, infections and cancers. Yet not everyone will experience pain in response to these harms in the same way. Our genetics influence the intensity of our experience of pain. For example, DNA analysis has revealed distinct mutations in a gene called MC1R amongst people with red hair, which geneticists believe explains why, on average, redheads require more anaesthesia when undergoing surgery than people with dark hair. Some people have been found to have genes that mean they experience less pain than others, if at all.

Other biological influences on pain can include lack of sleep, exercise levels, and hormonal changes – for example, falling levels of oestrogen during the menopause can cause or increase joint pain.

There is a strong connection between how we think about pain and our experience of it. Pain is not always a result of tissue damage – it can be your brain responding to the expected threat of tissue damage. In 1995, the British Medical Journal published a case study of a builder in excruciating pain due to a large nail which had pierced his work boot. Yet when the doctors removed the boot, it became clear that the nail had passed between his toes. His brain, perceiving a threat to his safety, had used a range of information – including the image of the nail sticking out his shoe, the context of being in a dangerous work environment and his feelings of fear and shock – to decide that he was in danger and issued a pain response to protect him. His experience of pain was as real and intense as if he’d been stabbed, despite there being no actual physical harm.

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.

stigma

Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

symptom

Any perceptible, subjective change in the body or its functions that signals the presence of a disease or condition, as reported by the patient.

 

Even where there is physical harm, psychological factors have a significant influence over our experience of pain. Past experiences, our emotional state, and our feelings and beliefs about pain all affect the intensity of our experience of pain and the impact it can have on our lives.

Another major psychological influence on pain is stress. If you are stressed, your muscles may tense or spasm which can increase pain. Stress increases your levels of cortisol (the stress hormone) which can cause inflammation and pain over time. Stress may be a result of your internal psychological state, for example if you are feeling anxious or depressed. It may also be a result of social or environmental factors, such as living in poor housing, being unemployed or on low income, having trouble in your relationships at home or work, being socially isolated, or experiencing stigma or discrimination, amongst other things.

Other social influences on how you experience pain can include cultural and gendered norms and beliefs, including ideas about how pain should be expressed and managed. For example, in many cultures, men are expected not to react emotionally in response to pain – consequently, this can lead clinicians to take them more seriously when they do complain of pain. In contrast, women and ethnic minorities are often undertreated for their pain, despite studies indicating that they may be experiencing, on average, greater pain than their male or White peers.

Persistent pain

Persistent pain (sometimes called chronic pain) is pain that lasts for longer than three months.

In cases where pain is serving as a symptom warning of a medical condition or injury, treatment of the underlying medical condition is crucial and may resolve the pain.

However, pain may persist because the underlying medical condition cannot be treated successfully or because pain has become a problem in its own right.

Dr Rageshri Dhairyawan gives advice on talking to your doctor about pain and other health issues.

Pain often persists despite successful management of the condition that initially caused it – for example, you might continue to experience pain from a broken leg long after it has healed. It’s important to speak to your doctor if you are experiencing persistent pain so they can investigate whether there is any physical problem that is causing your pain to persist. If doctors are unable to identify a cause of your pain, it may be that you are experiencing pain as a result of your pain system becoming overprotective.

Pain is an important warning system that helps to protect us from danger. It’s often a natural part of healing and dissipates after the threat has gone. However, the longer the body experiences pain, the better it gets at producing pain. This can lead to a state where your body’s pain system becomes overprotective – issuing alarm signals long after the danger has passed.

You can tell if your pain system has become overprotective if, amongst other things, your body starts to feel more sensitive, or if activities that used to cause only a little pain, or no pain at all, start to become painful. Your pain may spread or move around your body, and you may find that you have become more sensitive to things seemingly unrelated to your body – such as loud noises and unusual smells.

Living with persistent pain can have a major effect on your wellbeing. Persistent pain can worsen your mental health, make it difficult or impossible to work, and disturb your sleep. In turn this can further exacerbate your pain, making the probability of recovery seem small. Yet understanding that your pain is influenced by what you think, how you feel, and what you do, shows that you have more control over the impact that pain has on your life than you might realise.

Pain in people living with HIV

Pain is very common amongst people living with HIV, especially older people. It’s not yet understood if people living with HIV are at greater risk of experiencing persistent pain than people without HIV, or why that might be.

The causes of pain in people living with HIV are varied and are not all connected to HIV. However, there are factors that may be specific to people living with HIV and influence their experience of pain.

Biological causes related to HIV may include 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 (indicated by a low CD4 cell count). Nerve damage is not usually reversible, although symptoms can be managed. You can read more about peripheral neuropathy and how it is diagnosed here.

Pain in multiple parts of the body (widespread pain) also seems to be common in people with HIV. Although the exact causes are unclear, this widespread pain may be related to length of time living with HIV, taking HIV treatment, and/or living with a low CD4 count.

HIV treatment can cause side-effects which can be painful. The worst examples of these are caused by older anti-HIV drugs that are no longer routinely used. For example, some of the nucleoside reverse transcriptase inhibitors (NRTI) drugs, particularly the older 'd' drugs ddI (Videx), ddC (Hivid), and d4T (Zerit), caused peripheral neuropathy, damaging the nerves in the feet and lower legs, and occasionally the hands. However, not everyone that has peripheral neuropathy experiences pain, and researchers are still trying to understand why. The fat wasting caused by some now rarely used anti-HIV drugs, particularly in the buttocks, can cause discomfort when sitting. 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 painful side-effects. 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.

The HIV-related factors influencing pain are not just biological. Worrying about HIV stigma, or experiencing it, can affect how you feel pain. You might feel lonely, anxious, or depressed after being diagnosed with HIV, which can make you more susceptible to pain. You might put off seeking treatment for your pain because you’re worried about sharing your HIV status with doctors who aren’t HIV specialists. And experiencing pain itself can affect your mental health and social life. This can create a vicious circle between pain, low mood, and anxiety.

If you are in pain, it can have a substantial impact on your life. You may find that it’s harder to adhere to your HIV medication or keep to your HIV clinical appointments. It is important to tell your HIV doctor or your GP if you are experiencing distressing or persistent pain so they can find out the causes and help you to manage your pain.

Dealing with pain

Pain which has minor causes will often go away quite quickly without you taking any action. However, both acute and persistent pain can be distressing. If the pain lasts for more than a few weeks, or is very severe, see a doctor.

It’s important to treat any underlying medical problems that may be causing you pain. 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.

Pain medication of varying strengths can sometimes also be used in both the short and long term to control pain. Aspirin, paracetamol and ibuprofen are pain medications available over the counter without a prescription. If you have nerve damage you may be prescribed medicines that specifically target nerve pain, such as amitriptyline and carbamazepine. There is more information on which pain medications work best for different types of pain on the NHS website.

Never take more than the recommended daily dose of any pain medication or abruptly reduce prescribed pain medications without first consulting your doctor. If you have liver problems, over-the-counter pain medication should be used with caution.

It’s important to say that pain medications don’t cure pain and they don’t work for everyone. Pain medications also have important side effects, particularly when used long term. They can also interact with medications for HIV. So, while these may have a role for some people, a holistic approach to pain management that does not focus only on medications is usually the most helpful.

Dealing with persistent pain may not always mean eradicating or curing it. If you are living with persistent pain, it may be about learning to manage your pain and finding ways to enjoy your life and do things you care about alongside the pain.

Research conducted with people with persistent pain indicates that the best treatments involve taking an active and long-term approach that considers your needs and goals as an individual. Learning to respond differently to pain is hard work and requires patience, persistence, and courage.

It’s always better if you can do this with support – you may be able to access specialist support such as a pain coach via your GP or HIV doctor. You may also find it helpful to connect with other people living with pain to learn about active strategies that they are using to manage their pain, for example through events organised by The Footsteps Festival.

Understanding your pain is an important step towards addressing it, otherwise even the best pain management advice may feel dismissive. Understanding pain can give you the confidence to move, even when it hurts, and help you to do more of what you want to do with pain.

How you manage your pain can come in many different forms, including:

Gentle exercise. It may seem the last thing that you want to consider when you’re in pain, but exercise is often one of the key things that can help reduce chronic pain, and avoiding exercise can make pain worse. Exercise prevents joints from stiffening, improves muscle and bone condition, promotes good sleep, and can reduce social isolation – all of which can help to manage pain. Any exercise is better than none, so it’s fine to start slowly, set yourself simple goals, and build up your activity gradually. Remember, exercise doesn’t just mean going to the gym and lifting weights. Day-to-day physical activity like doing household chores, gardening and walking all count.

Your doctor can give you advice on the type and amount of activity that is safe for you. They can also refer you to a physiotherapist who can help you with some exercises if you are worried about exercising on your own.

It’s best if you find an exercise you enjoy, and you might find that you are more motivated and enjoy it more in a group.

Talking therapies such as cognitive behavioural therapy (CBT) and acceptance and commitment therapy (ACT) can also help. This type of treatment isn’t a cure for pain and may not reduce the pain you feel. CBT and ACT can help you to manage the impact of pain on your life and to learn ways to make life better alongside pain. This video gives a taster of the ACT approach to dealing with pain.

Your GP or HIV doctor can refer you to your local Talking Therapies service. Depending on where you live, you may also be able to refer yourself. A growing number of Talking Therapies services also deliver CBT tailored to people with long-term conditions such as persistent pain.  

Pain management courses. These courses support you to take an active role in managing your pain. Approaches to pain management that empower people living with persistent pain and help them to feel in control have been found to be most effective at reducing pain.

Complementary therapies. Many people find acupuncture, yoga, mindfulness, and breathing exercises help them to manage pain and its impact on their lives.

Stopping smoking. Smoking increases inflammation which can worsen your pain. There is more information and advice on stopping smoking on our Smoking and HIV page.  

Eating a healthy diet. In particular, foods rich in a group of antioxidants called polyphenols can have an anti-inflammatory effect that may help to reduce pain and support your overall well-being. These include whole fruits (especially berries), dark green leafy vegetables, nuts, pulses, and whole grains. 

Since everyone’s experience of pain is different, what works for you may differ from what works for someone else. There’s nearly always a way to manage pain, and you should talk over your options with your GP or HIV doctor.

Further information

There is information on different types of help for pain on the NHS website and the website of the British Pain Society.

The Footsteps Festival provides a series of online events co-produced by people with pain to explore creative ways of living well with pain.

The Physiotherapy Pain Association has a number of useful resources for people living with pain, including general information about pain and tips for keeping active. The Chartered Society of Physiotherapy also has a leaflet specifically on physical activity for people living with HIV.

You can read more about pain science and real stories from people living with pain on the Flippin’ Pain website.

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Acknowledgements

With thanks to Jo Josh and Dr Whitney Scott for their advice and input.