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LIVING WITH PAIN

Pain is a more terrible lord of mankind than even death itself,” Dr Albert Schweitzer ‘On the edge of the Primeval Forest’.

More than one in eight people suffer chronic pain while one in five of these are diagnosed with depression due to pain, according to a UK Pain Society survey. Sixteen per cent said some days the pain was so bad that they wanted to die.

HIV and pain: under-rated and under-treated
Dr Karen Pickhaver who runs a pain clinic at London’s Chelsea and Westminster Hospital told the May NAM patient forum that a quarter of patients in the symptomatic phase of HIV, and more than 80 per cent of people with HIV in hospital, experienced chronic pain. HIV-related pain was under-rated and under-treated, she said.
A French study among people with HIV revealed pain was their most common symptom and was experienced by over 50 per cent of people with the virus.
Dr Pickhaver said pain was subjective and was a complex sensory and emotional experience. Short term (acute) and long-term (chronic) pain could severely lower quality of life and disrupt ability to engage in day-to-day activities.
Chronic pain among people with HIV can be caused by infections, cancers, gut problems and nerve damage, such as peripheral neuropathy to the hand and feet extremities.

Pain due to drugs side effects
Anti-HIV drugs can lead to painful side effects. The ‘d’ drugs (ddC, ddI and d4T) have been shown to exacerbate nerve damage in the feet and lower legs. Switching HIV drugs may be an effective option for reducing pain.
Fat redistribution (lipodystropy) and loss of body fat (lipoatrophy) can worsen pain, especially when fat loss is in the pads on the soles of the feet or on the buttocks.
Protease inhibitor drugs can cause severe stomach cramps, diarrhoea and even kidney stones.
People living with HIV may experience severe joint and muscle pains or have psychiatric problems and those with long-term and chronic pain, should always seek help from their clinics.
An HIV clinic pain control doctor can assess the reason behind the pain and develop a therapeutic approach to deal with it.
The World Health Organisation (WHO) has developed a three-step ladder of drugs to treat chronic pain, ranging from mild analgesics, such as aspirin, ibuprofen or paracetamol through to stronger painkillers like codeine all the way up to opioids like morphine.
However, each of these have there own side effects, or interactions, with HIV drugs; so it is vital patients consult a specialist HIV pain doctor.
As many as a third of people with symptomatic HIV infection suffer from peripheral neuropathy. It is related to lower CD4 counts, Dr Pickhaver explained, and is often difficult to diagnose and treat.
Beyond painkillers
Doctors have found that tricyclic antidepressants and anti-convulsant drugs can also be effective in treating pain but it is important to try out one drug at a time, with a slow and increasing dose, to find what works.
Other major easily treated areas of pain include diarrhoea (with loperamide), nausea and vomiting (with metaclopromide or haloperidol), as well as ano-rectal pain.
Patients increasingly rely on alternative or complimentary therapies to cope with peripheral neuropathy. Therapies include L-acetyl carnitine, red chilli peppers, moulded insoles, acupuncture as well as chiropody, Vitamin B supplements and even Omega 3 oils, from oily fish. Massage, osteopathy, hydrotherapy and gentle exercise have also been shown to be effective.
Hospitals who trialled the amino acid acetyl carnitine found that it worked. But it was expensive, and HIV clinics are often reluctant to pay for more costly drugs when anti-retrovirals already consume such a large proportion of budgets.
Dr Pickhaver said that the bottom line was that people suffering from severe pain “shouldn’t have to put up with it” and people with HIV in particular should get practical help from their clinics.
Exaggerations about the dangers of opioids and prejudices against using alternative therapies are being slowly overcome by the medical profession, she added.

People living with HIV are in the vanguard of NHS treatments. We may not think ourselves lucky, but compared with people with other fatal diseases like cancers, HIV has excellent clinics with dedicated doctors and nurses freely available to help us deal with the various pains of living with the virus. And to get help, all we have to do is ask.

THERAPY OF THE MONTH:
LIFE COACHING

PN’s John Clarkson gets a lift from a life coach and lives to tell the tale

I was ten minutes late for my session and a little apprehensive. The words ‘life coach’ conjured up a bossy gym teacher telling me to ‘get a grip’ and ‘pull my socks up’. Would he make me do press-ups and stand in the corner as punishment?
Luckily my coach David was nothing like that. After my frantic apologies he quickly put me at ease and explained what life coaching entailed. The gym teacher image wasn’t far off the mark, but he was more like a personal trainer: someone to help you work out what you want to achieve and how to achieve it. Nothing like scary Mr Saunders from school.
We started with a contract. Any decisions reached during the session would be mine, and he wouldn’t ask about any subjects I didn’t want to talk about. No “tell me about your childhood” questions to worry about.
Inevitably, then came the handy (if a little cheesy) acronym: GROW. G is for goals. Like a counsellor, a coach won’t pass judgement on your behaviour or tell you what to do. The main difference is that coaching is goal-orientated. And one of the main problems people come to coaches with is that they don’t know what their goals are. If you’re feeling aimless and unsure what you are doing with your life, coaching helps you work out exactly where you want to be by focussing on your values and passions. From these it’s a short jump to working out what changes in your life would benefit you the most.
R is reality. That career with the Royal Ballet might not be too hot an idea if you have peripheral neuropathy. Aiming too low could land you back in the rut that you are trying to get out of. Once your attainable goals have been identified, O is for all the options you have for achieving them. Which then brings you to the W: the what, where and when. The final part of the process it to develop an action plan to ensure you start moving toward your goal in a structured way. There is little point knowing where you want to go without a map and a good pair of walking boots.
Most people come to coaches with career problems but they can also assist with home-life, relationships issues, breaking destructive cycles of behaviour; anything you think could benefit from some objective assessment. The principles can also be applied to couples who have a joint goal. Blue Phoenix, the company David works for, has done group training with THT. Glynn Thomas, senior project manager with THT told me: “We were looking for a training session for the LADS and CLASH outreach teams to develop communication skills. David ran an hour-long session based on a forthcoming campaign which the teams were working on. This made it directly relevant to our day-to-day work, and everyone enjoyed it and found it very useful.”
Any kind of change can be scary. When you’re stuck in a comfortable rut, fear can make you think you want to stay there. “Every good athlete needs a coach and you’re no different,” says David. “A coach won’t do the running for you but they will certainly help motivate you to achieve your goals quicker.”
For someone who finds the “so-how-does-that-make-you-feel” style of counselling a little irritating, coaching’s more pragmatic approach was welcome. In our brief trial-session/interview David and I identified what goals would make me happiest, worked out what was stopping me achieving them and came up with a few ideas how I could overcome problems. Like many of us, fear of failure prevents me progressing in my chosen field of work. Rather than trying to ‘cure’ me of this David helped me visualise the problem and gave me a number of practical steps to overcome it. At the end of the session I felt what had been vague dreams were actually attainable. Not bad for just under an hour (I was late).
As yet there is no official accreditation body covering coaching. So ask where your coach trained and then check the place out on the internet or phone. You could ask if any of his or her ex-clients are prepared to speak to you about their experience. Have a long chat on the phone first to ensure you are comfortable and have a connection with your coach before you begin anything. Sessions aren’t cheap, so finding the right coach is important. There is no fixed rule about the number of sessions, as each client is looking for different outcomes, but most coaching relationships can produce results in around six sessions.
HIV can lead you to reassess your life. Things that you thought important seem silly, and paths you have ended up on may now seem like dead-ends. And if you’re feeling great after thinking you were going to die, you’ve got some pretty fundamental decisions to make. If you need pointing, and then maybe gently shoving, in the right direction then coaching could help you get where you want to be.

back to contents - Issue 118

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