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Pain management doesn’t end with medication. Education, empowerment and self-care are equally important factors in effective pain management.

Pain is very common in people living with HIV, with self-reported pain rates across different settings ranging from 35% up to 91%.1 While there is evidence supporting a relationship between increased pain and decreasing CD4+ T cell counts a significant number of people with an undetectable viral load also experience pain.1 Pain remains a serious problem in HIV management despite effective antiretroviral treatment (ART) and some types of painful conditions are associated with increased prevalence with ART, especially peripheral neuropathy. Other risk factors for increased reports of pain are alcohol consumption, smoking, IV drug use, depression and anxiety, and co-illnesses like diabetes and hepatitis.2

People living with HIV can experience pain from a variety of different causes. The most common problems reported include pain associated with peripheral neuropathy, headache, abdominal pain, chest pain, generalised muscle pain, joint pain, anorectal pain and oral or pharyngeal pain.3 Women with HIV may experience pain more frequently and, similarly to the general population, more intensely than men.4

Early treatment era studies suggested that health providers often underestimated pain in patients, however, the burden of chronic pain in people living with HIV has since become increasingly acknowledged within HIV/AIDS healthcare guidelines. Despite this, a solid body of evidence for the effectiveness of pharmaceutical pain management based on current guidelines is still lacking and while this is still the mainstay of pain treatment for people with HIV many report only modest relief from pain medications.1

Pain is Complex

The challenges of providing pain relief are not unique to HIV+ people. Around 20% of the general population suffers chronic pain. The frustrations in ensuring effective pain management provision in Australia have lead to the development of a National Pain Strategy, published in 2011.5

The complexities that patients and health providers face in getting chronic pain under control are largely a consequence of the complexities of pain itself. The International Association for the Study of Pain (IASP) defines pain as “an unpleasant sensory and emotional experience, associated with actual or potential tissue damage, or described in terms of such damage.”6 One of the main intentions of this definition is to make it clear that pain is an entirely individual and subjective experience. Pain is now understood as a category of complex experiences involving a composite of sensory, motor, autonomic, endocrine, immune, cognitive, emotional and behavioural components. The experience of pain is produced by our brain in response to a perceived threat to the safety of the body as a whole: it is not simply just an awful sensation in response to damaged tissues.

The last two decades of research into the nature and causes of pain have demonstrated very strong support for a model of pain and its treatment that considers the physical, psychological and socio-environmental dimensions of pain. This is commonly referred to as the ‘biopsychosocial’ model. Brain imaging studies supporting this view of pain have shown that diverse areas of the brain are activated in different ways in different people experiencing apparently the same physical stimulus.5 The biopsychosocial model also indicates that the assessment and treatment a person suffering pain must both acknowledge the individual experience and carefully address each of the relevant dimensions contributing to the pain. The National Pain Strategy document highlights that “this often means that more than one category of health professionals will be required to make a full assessment and to communicate with each other to weigh up the relative contributions, enabling selection of the most appropriate treatment or treatments in an interdisciplinary approach.”

Taking Control

There is also now convincing evidence that when people suffering with chronic pain, and their supporters, are educated and empowered they experience less pain and psychological distress.5,7 Self-management approaches encourage patients and their supporters to take an active role in the management of their condition. When people are engaged in ‘active’ self-management programs they tend to suffer less pain and associated disability than those receiving only ‘passive’ treatments.5 For example, in a randomised trial comparing the use of a targeted symptom specific strategy manual with general information manual for symptom management in people living with HIV, the researchers reported a significantly greater decline in symptom frequency and intensity in the group using the symptom specific management manual.8

Self-management strategies offer important and effective approaches to limiting pain and other negative effects of HIV.8 While it is critical to treat both the disease and secondary illnesses underlying ongoing pain directly, there is also evidence that effective symptom management can improve virologic suppression and adherence to treatment.2 Self-care strategies may also have more direct health benefits, for example, in a systematic review of massage therapy for people with HIV/AIDS conducted in 2010 the reviewers concluded that in addition to improving quality of life scores there was preliminary evidence that massage therapy may have a positive effect on immunological function.9 Regular aerobic exercise can result in significant improvements in cardiopulmonary fitness, body composition, and psychological health and depression – a significant amplifier of pain-related distress.10

Self-Care That Works

Three surveys of self-care strategies and symptom management used by people with HIV-related painful peripheral neuropathy have shown that a broad variety of approaches may be helpful in relieving pain and discomfort.11 The most commonly used strategies were taking a hot bath, rest, elevating the feet, walking and massage. The surveys also asked people to rate the effectiveness of self-care strategies. Those with the highest rating of effectiveness included taking a hot bath, rest, walking, exercise, massage and meditation. Interestingly, while taking over-the-counter pain medications is also a frequently used strategy, this was not as effective as the above approaches. Although it was only used by 20% of the respondents, meditation was consistently rated as the most effective strategy.

In addition to standard pharmacological treatments, how do these commonly used self-management strategies square with other evidence of effectiveness in the management of pain? Ideally, assessing the evidence of effectiveness of a treatment should take into account the people to which the results are intended to apply. Unfortunately, there isn’t enough research in HIV+ people available to make conclusive recommendations; however, several of these approaches have been studied extensively in other chronic pain populations.

Meditative movement therapies like tai chi and yoga have been strongly supported in evidence reviews for pain management in chronic pain syndromes.1,13 Aerobic exercise is also an important component of self-care for people with HIV.10,14 There is moderate evidence in support of various forms of massage for some of the pain problems that people with HIV may suffer.1,9,14 Nerve massage and mobilisation of the peripheral nerve tissue has been shown to help people suffering diabetic neuropathy15 and may also be appropriate in HIV-related sensory neuropathy. This is best performed by a physiotherpist or osteopath with training in neurodynamic manual treatment. A growing body of research is showing that practising mindfulness meditation can be immensely helpful for people with persistent pain.12 Meditation can even be as effective as participating in multidisciplinary group pain rehabilitation programs in improving coping ability and other functional outcomes.16

Catalysts to Patient Empowerment7

• Knowledge
• Understanding
• Information (including side effects of treatment or medication)
• Right environment
• Right attitude (mutual trust and respect, and collaboration)
• Availability of resources (including time)
• Healthcare professionals who have been educated in chronic pain management

Getting pain under control is challenging, and often it’s a moving target. Because your pain is unique to you, effective management will be unique to you too. Understanding pain, being educated and empowered, and taking an active role in your health is the best place to start.

(Article originally written for Positive Living Magazine)


1. Newshan G, Staats JA. Evidence-based pain guidelines in HIV care. J Assoc Nurses AIDS Care. 2013; 24: S112-26.
2. Merlin JS et al. Pain and physical and psychological symptoms in ambulatory HIV patients in the current treatment era. J Pain Symptom Manage. 2012; 43(3): 638-45.
3. Hewitta DJ, McDonald M, Portenoya RK, et al. Pain syndromes and etiologies in ambulatory AIDS patients. Pain. 1997; 70(2–3): 117–23.
4. Richardson JL, Heikes B, Karim R, Weber K, Anastos K, Young M. Experience of pain among women with advanced HIV disease. AIDS Patient Care STDS. 2009; 23(7): 503-11.
5. Available at: http://www.painaustralia.org.au/the-national-pain-strategy/national-pain-strategy.html
6. Merskey H, Bogduk N. (eds). Classification of Chronic Pain, Second Edition. IASP Task Force on Taxonomy, IASP Press. Seattle, 1994. Available at: http://www.iasp-pain.org/Content/NavigationMenu/GeneralResourceLinks/PainDefinitions/default.htm
7. Barrie J. Patient empowerment and choice in chronic pain management. Nursing Standard. 2011; 25(31): 38-41.
8. Wantland DJ, Holzemer WL, et al. A randomized controlled trial testing the efficacy of an HIV/AIDS symptom management manual. J Pain Symptom Manage. 2008; 36(3): 235-46.
9. Hillier SL, Louw Q, Morris L, Uwimana J, Statham S. Massage therapy for people with HIV/AIDS. Cochrane Database Syst Rev. 2010; 1: CD007502.
10. Nixon S, O’Brien K, Glazier RH, Tynan AM. Aerobic exercise interventions for adults living with HIV/AIDS. Cochrane Database Syst Rev. 2005; 2: CD001796.
11. Nicholas PK, Voss J, et al. Prevalence, self-care behaviors, and self-care activities for peripheral neuropathy symptoms of HIV/AIDS. Nurs Health Sci. 2010; 12(1): 119-26.
12. Reiner K, Tibi L, Lipsitz JD. Do mindfulness-based interventions reduce pain intensity? A critical review of the literature. Pain Med. 2013; 14(2): 230-42.
13. Langhorst J, Häuser W, et al. Complementary and alternative therapies for fibromyalgia syndrome. Systematic review, meta-analysis and guideline. Schmerz. 2012; 26(3): 311-7.
14. O’Brien KK, Nixon SA. Evidence-Based Management of an Individual Living with HIV. Physiother Can. 2010; 62(3): 202-5.
15. Kumar SP, Adhikari P, Jeganathan PS, D’Souza SC. Immediate effects of nerve sliders and nerve massage on vibration and thermal perception thresholds in patients with painful diabetic peripheral neuropathy- a pilot randomized clinical trial. Physiother Occup Ther Journal 2010; 3(2): 35-49.
16. Reiner K, Tibi L, Lipsitz JD. Do mindfulness-based interventions reduce pain intensity? A critical review of the literature. Pain Med. 2013; 14(2): 230-42.

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