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Chronic Pain Ireland (CPI) provides support and information for those suffering with chronic pain, while working with all the major stakeholders. CPI lobbies for multidisciplinary treatment centres, improved health services and changes to the educational curriculum so that healthcare professionals are more aware of the condition and the challenges of diagnosing, treating and managing the condition.
The workshops on self-management techniques are the most important aspect of the work we do. CPI has been providing these workshops for over a decade and for our advanced workshops we bring over an expert from the UK. The workshops are critically important for those who have been through the acute phase of their treatment, a pain management programme or attended a pain management clinic.
Research from the UK, US and Australia clearly indicates that dealing with the psychological and social impact of living with chronic pain should be given priority, and in Australia all consultant anaesthetists specialising in the treatment of chronic pain are being trained to deal with the psychological and social impact of chronic pain. In 2013 the Australian and New Zealand College of Anaesthetists (ANZCA) issued the following press statement: “A world-first approach in training specialists to treat patients in pain has been launched by the Faculty of Pain Medicine of the ANZCA. Doctors are now being trained to focus more on the psychological and social aspects of pain under the programme developed over four years by the Faculty of Pain Medicine.”
In Australia they now refer to the bio-psycho-social model of care as the psycho-social-bio model of care.
Medicines alone are not the most effective way to treat chronic pain.
Chronic pain may never be completely cured, but can be managed.
People managing their pain on a daily basis get the best results.
There are many self-management strategies that can help.
Self-management will lead to a more appropriate use of medications.
Why medicines alone are not the answer for chronic pain
Most of us experience pain from time to time, but for one-in-eight people in Ireland, it does not go away. This is chronic pain and lasts beyond the expected time for healing after surgery or trauma and can exist without any clear reason. While medicines such as codeine or other opioids are sometimes prescribed for chronic pain, research has shown they are not effective in the longer term, contributing on average to only a 30 per cent reduction in pain. They can also come with unwanted side-effects such as nausea, drowsiness, constipation, mood change and difficulty in concentrating.
After a short time one may develop a tolerance to opioids and the dosage must be progressively increased to achieve the same analgesic effect. If one has chronic pain, it is important to learn to manage it effectively without relying on medicines.
Evidence shows that people with chronic pain who are actively involved in managing their pain on a daily basis have less disability than those who are engaged in passive therapies, such as taking medication or surgery.
Chronic pain is a complex experience, which is influenced by physical, psychological and social factors. The best way to manage it is to address all the factors affecting the patient’s pain.
Having carried out significant research into self-management and in particular having looked at successful models in the UK and Australia, we changed our approach to self-care and now provide a series in coping with chronic pain. The first session is facilitated by a student psychotherapist and the title of the presentation is ‘Advancing through the grief of reshaping your life and identity.’ The second session deals with strategies people can implement to help them manage their pain better. Both sessions last for three hours with a half-hour break for attendees to interact with each other. This is extremely important as they know they are talking to somebody who understands the issues and problems associated with living with chronic pain. More talks will be added to the series based on feedback from attendees.
Advancing through the grief of reshaping your life and identity
The aim of the talk is to bring people through the process of how our identities are moulded and in turn how that informs our response to pain. Moving then to address Kubler-Ross’s 1969 grief process, what does grief look like, and what are the symptoms? Great relief can come from granting ourselves permission to grieve the old parts of our identity, which we loved so much… the dancer, the traveller, the career-focused individual, the hands-on parent, etc, and allow space for new shoots of identity to shine through.
For many CPI members coming to terms with the fact that they have chronic pain and it may never get better or go away is daunting and certainly impacts on all areas of their life from work to relationships and their identity especially.
For example, imagine being an executive in a bank for 10 years. You are introduced as ‘Mary, who works for x bank’ at parties. Then chronic pain comes along after lifting her niece in an awkward way, hurting her back. At first Mary can keep working if she goes straight to bed when she gets home and takes only over-the-counter analgesics.
Mary becomes stressed by the amount of housework not done, it is harder to get to sleep and she is no longer performing to the same standard in work. Her partner is frustrated with how often they need to cancel or withdraw early from his family’s events. Mary’s pain is not dissipating and her GP does not see why she is still experiencing so much pain. The over-the-counter painkillers are no longer working and she is referred to a pain specialist. Mary has now been in pain for over six months, she tries to work from home as often as possible, but despite reducing her work hours to part-time, Mary can do little else.
Mary’s friends, understanding at first, have slowly become disgruntled by her lack of contact or cancelling at short notice. The house is a mess and Mary is stressed about meeting the mortgage payments. How will they ever start a family? Would she be able to care for a little one? Her partner tries to be supportive, but he does not know how she likes things done and it only generates more stress ending in arguments. “This isn’t the life I wanted,” thinks Mary. “This isn’t what I signed up for,” her partner thinks. Mary eventually sees the pain specialist who despite many scans and investigative interventions cannot suggest a treatment that would significantly reduce her pain without severely impeding her quality-of-life.
All those identities: The independent working woman, in a romantic partnership, planning to start a family, house-proud, and friends and family to socialise with, etc, chronic pain has seeped into and washed away many of those things that Mary held up as being who she is. This is the typical member of CPI. This is also just one example of who the self-management talks can give a glimmer of hope to.
By examining how those identities were formed in the first place and looking behind them to see the beliefs and values behind the life we choose for ourselves, we can understand what is important to us and what small things can still meet those values despite chronic pain.
The talk is led by Ms Deirdre Ryan, a student psychotherapist who lives with chronic pain and has been a member of CPI for over seven years. Ms Ryan has attended many of the talks and courses arranged through the organisation but recognised a gap in relation to the ‘why’. “Why should I learn to live with chronic pain? All I want is my old life back.” This resistance, in Ms Ryan’s experience, only generates more stress and increases pain, spiralling life out of control. By understanding why one can learn to live with pain rather than pain ruling who one is, is exceptionally empowering.
The combination of compassion, empathy and hope instilled in an authentic way resonates with attendees. Sowing seeds that can be nurtured and grown at home. Those seeds also encourage attendees to seek out self-management techniques that can help them cope and allow them the energy to build a new version of themselves that includes pain, but is not governed by pain.
The second session focuses on strategies the individual can use to manage their pain better. This is not easy for the individual as in most cases it requires a complete change of lifestyle. For those who possess the quality of resilience it is easier to make the changes required. For ‘Type A’ personalities it can prove difficult to make the changes as they tend to be people who cannot get to grips with pacing, which is one of the main keys to successful self-management. The topics covered are as follows:
Adherence to medications. (Less than 30 per cent adhere.)
Ease tensions/reduce stress.
Thoughts, emotions and beliefs.
Journalling/creative writing/art therapy.
It is accepted by consultants who specialise in pain medicine that goal-setting is the first step in self-management. People are encouraged to write out five or six goals and they must be specific, manageable, achievable, relevant and time-bound (SMART). A copy of the goals should be given to someone who is close to the goal-setter as that acts as an incentive to achieve the goals. It is also important that people give themselves two free days per week where they do nothing in relation to their goals.
Pacing is very difficult to get right. Too much activity leads to flare ups and what is termed the ‘boom-bust cycle’, which can leave the individual in bed for days. Under-activity is equally damaging and can lead to many other health issues. Knowing one’s baselines is critical for success in pacing.
Sleep is a problem for all people with chronic pain, but there are many simple things a person can do to improve sleep. Most importantly, the bedroom should be a peaceful place with no blue lights, ie, no mobiles, no laptop, no TV and no alarm clocks with blue light. No fizzy drinks, no tea, coffee or alcohol within five hours of retiring. The Irish Faculty of Pain Medicine had an expert in sleep, Dr Neil Stanley, at their scientific meeting some years back. His opening comment was, “if you want a good night’s sleep then sleep alone”.
There is a lot of common sense in implementing the other goals. However, an unsupportive partner/spouse will ramp up the pain. Not being believed by someone close to the person with chronic pain contributes not only to an increase in pain levels, but can also trigger end-of-life thoughts and unfortunately in some cases may lead to suicide. Not being believed by healthcare professionals, including the GP, has a devastating effect on the patient.
Finding support for those with chronic pain can be an isolating experience and affected people may benefit from joining a support group or online community. They may also consult a counsellor if pain affects their work or home relationships. (HSE CIPC Programme).
Contact Chronic Pain Ireland for further details. www.chronicpain.ie. Email: firstname.lastname@example.org. Phone 01 8047567.