Pain in People Living with HIV

Original Editor - Melissa Coetsee Top Contributors - Melissa Coetsee and Carina Therese Magtibay

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Introduction

Since the introduction of Anti-retroviral Therapy (ART), there has been a significant reduction in the mortality associated with Human Immunodeficiency Virus (HIV). As a result more people are living with HIV as a chronic condition, and this has necessitated an increased focus on factors affecting morbidity. Pain is one such a factor that has been shown to negatively affect the quality of life and function of people living with HIV (PLWH).

The prevalence of pain among PLWH vary among populations. Parker et al. (2014) found that pain (mostly moderate to severe) is reported in 54-67% of PLWH. In later studies, high variability in frequencies were found, but most reported a pain prevalence of more than 50%. It is clear that pain is a prominent concern in PLWH, and it remains poorly controlled and undertreated in this population.

Impact of Pain

Untreated and poorly managed pain can be very debilitating. In PLWH it has been shown to have significant negative effects on the following:

1. Sleep
2. Ability to work
3. Mood
4. Quality of life
5. ART adherence

This clearly demonstrates the importance of addressing pain in PLWH in order to limit its impact on quality of life and function. Although the current WHO HIV package of care guidelines recommend psychosocial counselling and support, there is a need to included screening and treatment of chronic pain in order to comprehensively manage PLWH.

Factors Contributing to Pain

The following factors have been found to increase the risk of pain in PLWH:

• Depression and anxiety. Depression has specifically been associated with greater intensity in pain in PLWH and is very common in PLWH
• Lack of social support
• Lower level of education, in both developing and developed contexts
• Poor sleep, especially associated with zidovudine and efavirenz
• Substance abuse
• Stigma. Although common in PLWH, there is a lack of evidence on the effect of stigma on pain

Common Pain Conditions

Zhu et al. studied symptom clusters in PLWH, and found "numbness, muscle aches, and joint pain" to be the fourth most common symptom cluster

1. Peripheral Neuropathy: More than one-third of PLWH suffer from HIV-neuropathy, with some studies reporting incidence rates of up to 66%. Of those with neuropathy, 38-78% experience painful neuropathy (neuropathic pain)
2. Spinal Pain: Low back pain or neck pain is present in 1% to 55% of PLWH
3. Lower extremity pain: present in 3-58% of PLWH, most commonly affecting the feet and legs
4. Joint Pain: Osteoarthritis is present in 2-50% of PLWH
5. Upper and extremity pain: present in 2-5% of PLWH, mostly involving the hands and shoulders

Pain Mechanisms in HIV

PLWH can present with complex pain conditions as a result of the virus itself, or as a side-effect of ART. It can be useful to consider the possible pain mechanisms involved in order to provide targeted treatment.

Neuropathic pain

• Causes: Neurotoxicity caused by the HIV-1 glycoprotein (infects Schwann cells and neurons) or neurotoxicity caused by certain anti-retroviral drugs (causes mitochondrial dysfunction).
• Nucleoside analogue-transcriptase inhibitors (NRTIs) (Zidovudine, didanosine, stavudine, lamivudine and abacavir) have be closely linked with severe peripheral neuropathy.
• Stavudine-based anti-retroviral drugs should be phased out for this reason
• Regardless of the cause, symptoms and clinical signs are similar and include distal polyneuropathy with hyperalgesia and allodynia

Nociceptive pain

• Tissue damage can occur with an injury. PLWH tend to have elevated inflammatory cytokines, which could result in an amplified pain response following tissue damage (reference needed)

Chronic Nociplastic pain

• Chronic pain is influenced by a range of immunological and psychosocial factors
• The stigma associated with HIV, as well as the high prevalence of depression and anxiety, can negatively modify pain-pathways resulting in persistent pain
• Fear-avoidance could potentially influence pain in PLWH and required further research

Pain Assessment Tools

• Brief Pain Inventory
• Pain, Enjoyment of Life and General Activity Scale (PEG)
• Pain Interference Score
• Pain Severity Score
• Beck Depression Inventory

See also Pain Assessment

Interventions for Pain in PLWH

Pharmacologic

Various studies have failed to identify drugs that have proven effectiveness in reducing pain (especially neuropathic pain) in PLWH. The South African Medical Research Council has reported that there is an "absence of empirical evidence supporting efficacy of pharmacological agents typically recommended for the management of neuropathic pain in this population group"

ART

There is no correlation between ART and pain reduction, which indicates that treatment of the virus alone is not effective in managing pain in PLWH

Neuropathic Pain Medication

Medications often used to treat neuropathic pain have not been effective in relieving HIV related neuropathic pain - these include anti-depressants, anticonvulsants, topical agents, opioids and non-steroidal anti-inflammatories (NSAIDs).

Other

• Cannabis: There is some evidence that smoking cannabis has a positive effect on neuropathic pain in PLWH, by activating the endocannabinoid system (ECS). It is however not recommended as a feasible option for pain management, as HIV is a chronic condition and the long-term use of smoked cannabis can have negative psycho-active effects. The research does however suggest that targeting cannabinoid receptors may be an effective approach in managing neuropathic pain in PLWH. Non-psychoactive cannabinoids administered via other routes would be more suitable and require further research.
• Topical capsaicin: There is some evidence of a short term positive effect on pain in PLWH.

Non-Pharmacologic

Non-pharmacological interventions seem the hold the most promise in addressing HIV related pain. There is however still a great need for further, high-quality research to determine which interventions are superior and the most cost-effective and feasible in different contexts.

Exercise

• A recent systematic review on neuropathic pain concluded that both aerobic exercise and progressive resistance exercise is superior to usual care (including education) in treating neuropathic pain in PLWH in low- and middle income countries (LMICs).
• The frequency of exercise shown to be effective is 30-60min, 3 times per week for 12 weeks .
• One study conducted a follow-up 12 weeks after the intervention ended, and found that continued home exercises resulted in sustained reduction in pain.
• Exercise seems to be less effective if it is initiated >7 years after diagnosis.
• Exercise has various other proven benefits for PLWH - see Exercise for People Living with HIV

Psychological Interventions

1. Relaxation: Yoga, relaxation strategies and mindfulness may provide benefits, especially when anxiety and depression are present
2. Cognitive Behavioural Therapy (CBT): A recent systematic review found that CBT can result in significant reductions in neuropathic pain intensity
3. Supportive Psychotherapy: Effectiveness is comparable with CBT, for neuropathic pain

Also see Mental Health Interventions for PLWH

Education and Self-management

• The Positive Living Workbook is a 6-week peer-led exercise and education intervention that was developed by Romy Parker. It offers a multimodal intervention for pain by incorporating education, exercise, CBT and self-management strategies . Two studies that utilised this workbook demonstrated a significant reduction in pain interference and improvement in function in women living with HIV.
• Turner et al utilised a similar programme, named Living Better Beyond Pain. Education sessions were offered monthly over 6 months. Pain was not measured, but the intervention resulted in significant improvements in physical function.
• A study conducted in Malawi, found that a single educational session with carers and late-stage HIV patients resulted in improvements in pain. These sessions focused on HIV related pain, myths about pain and management strategies.

Therapeutic Relationship

• Jackson et al. found that a good therapeutic relationship (established by frequent communication in one's home-language with an caring research assistant) can have significant positive effects on pain levels in PLWH.
• This finding supports the promotion of less fragmented care in managing PLWH. There is a need for consistent empathetic care in health systems.
• Physiotherapists are well trained and positioned to provide such a relationship. In low-resource or rural settings, this role could be filled by training community healthcare workers (CHWs) .

Other

• Massage: There is low to moderate evidence to support the use of massage in PLWH. It may improve quality of life, but it has not been shown to have any effect on pain on activity levels. Given the lack of evidence, it could be useful as a self-management/care-giver tool, but should not be the focus of pain management programmes/interventions.
• Splinting: Night splinting for neuropathic pain has not been found to be effective

Resources

• Positive Living Workbook - Developed by Romy Parker, Available in English, Afrikaans and isiXhosa
• Living Better Beyond Pain Curriculum