Living With Chronic Pain

Living with Chronic Pain is challenging but over time you will be able to increase the amount you can do and improve your overall quality of life.  While future work and social pursuits will differ from the ones you enjoyed before chronic pain, life can still hold interest, self-worth, beauty and hope.

Health Literacy / Compliance

Health literacy is defined as a patient’s ability to understand basic health information so that they have the knowledge to understand their options and work with their healthcare professional to take better control of their health (www.healthliteracy.ie)

Becoming more knowledgeable about your condition can help you regain control and put you back in charge.  Living with chronic pain means trying to learn how to manage your pain.  This can be achieved by becoming more knowledgeable about your condition, medications, treatment options, trying to keep motivated while keeping a positive attitude towards your health.  Also being a good communicator can help.

Having self-management skills is particularly important as it includes handling health information, prescriptions, navigating healthcare settings, communicating with various healthcare professionals and making informed decisions.  This is of particular importance in patients with chronic pain where motivation and supports from clinicians is seen as critical to perseverance with self-management strategies. (Briggs et al 2011)

Both those working in the healthcare sector and the patient play an important part in improving health literacy.

The National Adult Learning Agency suggests that patients:

  • Make a plan for their appointment i.e. list questions they want answered, list any concern
  • Ask questions during appointment, ask healthcare professional to use plain English where needed
  • Tell their healthcare professional about day-to-day-life and before leaving go back over what was discussed and what they are to do between appointments.

By becoming more health literate you can fully participate in the long-term management of your condition.

Implementing Self-Management Techniques

Self-Management fits well with clinical approaches and the sooner you start the better. It’s not easy but it is possible. A lot of people make huge improvements in the quality of their life when they thought all was lost.

You might be reading this having just been told you have chronic pain, maybe your treatment is not giving you as much relief as you would like or maybe you’ve been told there’s nothing more we can do for you.  Don’t despair there is still a lot that can be done to improve your situation.

CPI’s Self-Management approach is based on a Bio-Psycho-Social model of health, which simply means that people get ill, not just bits of bodies.  We look at the following:

  • Bio- body parts, symptoms, adaptations, medication, side effects, sleep, fatigue
  • Psycho- thoughts and feelings, attitudes, beliefs, emotions, reactions
  • Social- other people, society, the things people say.

Impacts like stress, anxiety, over-doing things and poor sleep often get confused with the condition itself and can make a difficult situation much worse.

It is important to take control wherever possible through becoming more knowledgeable, improving your understanding of your condition & health while building skills in relaxation, stress management, pacing and challenging negative thinking. In simple terms it is about all the things that you can affect and influence.  It is also about the things that only you can affect

What does improve mean?

Self-management probably won’t cure your pain, but it can help you to improve things significantly.  What counts as ‘improve’ varies from person to person. Some people report that they have fewer flare ups; some say that they feel more in control; some that they have improved their relationships; some that they feel less stress; some that they sleep better some go back to work or stay in it.  How much things improve depends largely on the individual rather than the cause of their pain.

Obviously, everyone wants less pain. Many people report that they can positively manage their health by reducing the things that trigger pain and increase the things that ease it. Many say that they feel better in themselves and have turned the tables on their health so that they are in charge of their life rather than their pain.

Self-management is especially concerned with addressing the well-being (how you feel in yourself) aspects of a situation. This is because the experience of pain is a combination of sensation and reaction, or some might describe it as pain and suffering. If you can change the reaction the suffering component changes significantly.

We know that pain is stressful and stress makes pain worse, often called wind up. You could be going from flare up to flare up feeling increasingly stuck and desperate. This may feel like your pain is getting worse, but it might actually be that stress levels are driving the situation. So, what started as a response to a difficult situation has now become part of the problem itself i.e. that pain and stress are glued together. The good news is that stress is something that you can do something about.

Self-Management encourages you to look at all aspects of life and improve whatever you can at the time. For example, learning to relax helps to distract you from pain, feel calmer, think calmer and maybe react differently to the things that others say. This again is all about reducing stress (physical and emotional).

For Full details of our Self-Management meetings click here

Technologies that help

The availability of high-quality evidence to recommend treatment strategies for Chronic Pain Disorders is limited (World Health Organisation, 2008).

Each patient should have an individualised multi-modal therapeutic regime that concentrates on treating the underlying cause of pain, using appropriate medication as part of a pain management plan, provide regular analgesia (by the clock) titrated to achieve best affect & improve quality of life.  Therapeutic regimes need to be individualised and combined with psychological support (i.e. cognitive behaviour techniques) and identify the importance of evaluation and monitoring for any unwanted effects.

There are many areas of neurotechnology in the treatment of pain. Below is a description of three basic areas of treatment that are currently available; transcutaneous electrical nerve stimulation (TENS), intrathecal pump and spinal cord stimulators (SCS).

  • TENS units (transcutaneous electrical nerve stimulation) and Percutaneous Neuromodulation Units (PENS) work by delivering low level electrical stimulation through electrodes placed directly on the skin of the affected area. The electrical stimulation delivered through the skin may help alleviate pain by blocking pain messages being sent to the brain. Both systems require a physician prescription but this therapy can provide a convenient means of treating some forms of pain. Both are non-invasive and can be an economical solution.
  • Intrathecal Pump, refers to the administration of medicine, by a medication delivery pump. The pump has a chamber or reservoir for the drug that delivers the medication through a catheter directly into the spinal canal. The pump needs to be refilled, usually once every few months, by placing a needle through the skin. Generally, a person first undergoes a trial of the medication by an intrathecal injection. If successful, a pump system can be implanted permanently through a surgical procedure. The intrathecal pump reduce the need for oral medications, can be more effective and is now a mainstay of therapy for intractable pain including neuropathic pain and spasticity.
  • Spinal Cord Stimulation (SCS) system is a hybrid system comprised of implanted electrodes in the spine and an external control unit. It uses electrical stimulation to block the pain pathways to the brain that travel through the spinal cord. SCS has also been known to decrease spasticity. An initial trial is needed to see if effective results can be achieved. If the trial is successful, a permanent system may be implanted. The patient has the ability to keep the system on permanently or as needed.

These above options should be discussed with a pain consultant. Deep brain stimulation, transcranial magnetic stimulation and the use of very high frequency alternating currents as a method for blocking nerve conduction in peripheral nerves is currently under investigation. These methods might be able to provide an improved alternative for blocking pain and controlling muscle spasms.

Pain Treatment & Management

The availability of high-quality evidence to recommend treatment strategies for Chronic Pain Disorders is limited (World Health Organisation, 2008). Therefore, treatment should be focussed on the best option for the individual using clinical judgement.

Treatment or Management Plan:

Following assessment and evaluation of your chronic pain condition, a treatment or management plan should be formed between you and your healthcare professional with your input, understanding and agreement.  This should include all information necessary to help you regain control and management of your pain.

Some of this goes back to the importance of health literacy and knowledge of your condition and treatments that you are undertaking.

Plans make include taking pain medication, additional procedures, exercise, psychological therapy etc and should also focus on interventions and goals that help you to maintain or improve functional ability.   Use self-management techniques and strategies and build what works for you into your own management plan.

Pain Medications:

There are several types of pain medication that can be effective in helping you to manage your pain including simple analgesics eg. paracetamol, NSAIDS (non-steroidal anti-inflammatory drugs (NSAIDs), and/or stronger analgesics such as opioids and perhaps adjuvant medications (antidepressants or anticonvulsants) which would not usually be considered an analgesic but which have been found to be effective in treating chronic pain.  In 2021 EFIC published a position paper on the use of opioids for non-cancer pain see here and PAE published an information leaflet for patients here

Exercise & Physical Therapy:

There are many treatments that can help for example heat/cold therapy, peripheral nerve stimulation / transdermal electronic nerve stimulation (TENS), occupational therapy, therapeutic exercises for example hydrotherapy can restore joint movement while strengthening and conditioning muscles, exercise programmes and physiotherapy. Exercise is important and if you are not able to do a lot, then maybe start small and set a realistic goal. Find something that you enjoy doing and discuss with your healthcare professional. For more details on the benefits of physiotherapy, exercise therapy and personalised programs go to www.chronicpain.ie/document-bank/physiotherapy-chronic-pain

Interventional:

In addition to medication your pain consultant may discuss some interventional procedures that may be effective in treating your pain these can include intramuscular or joint injections, peripheral nerve blocks, regional blocks or sympathetic blocks.

Advanced Interventions include neuromodulation, intrathecal pump and vertebroplasty.

Psychological Therapy:

Psychological therapies can help people to cope with pain, depression and disability that can occur. It focuses on acknowledging your pain, stress management, dealing with guilt, identification of negative factors and importance of positive thinking, identification of goals and looking at supports including relaxation therapies, challenging negative or unhelpful beliefs/thoughts

Self-Management:

Self-Management fits well with clinical approaches and the sooner you start the better. It’s not easy but it is possible. A lot of people make huge improvements in the quality of their life when they thought all was lost. While there is no immediate cure for Chronic Pain implementing strategies/techniques through self-management can help reduce your pain, improve the quality of your life and puts you, not the pain, in control.

Self-Management is an approach to improving health and well-being by addressing the impact chronic pain has on life i.e. stress, anxiety, poor sleep and over-doing things. It is important to take control wherever possible through improving understanding and building skills in relaxation, stress management, pacing and challenging negative thinking.

Pain Management Programme:

A Pain Management Program (PMP) is a psychologically-based rehabilitative treatment for people with persistent pain. It is delivered in a group setting by an interdisciplinary team of experienced health care professionals working closely with patients. Some Pain Centres may run Pain Management Programs that aim to teach a group of patients with similar problems about pain, how best to cope with it and how to live a more active life.

For the majority of people, attending a Pain Management Program reduces the disability and distress caused by persistent pain by teaching physical, psychological and practical techniques to improve quality of life. It differs from other treatments provided in Pain Clinics in that pain relief is not the primary goal, although improvements in pain following participation in a Pain Management Program have been demonstrated.

Referral to a Pain Management Programme is usually through your general practitioner to your local pain clinic.

There are public pain management programmes in:

  • St Vincent’s University Hospital, Dublin
  • Tallaght University Hospital, Dublin
  • The Mater Misericordia University Hospital, Dublin
  • Mercy University Hospital, Cork

In addition, St James Hospital, Dublin offers mindfulness meditation.

Online self-management strategies course

In Galway, NUIG’s Centre of Pain Research have developed an online course which shares evidence-based information about chronic pain and self-management strategies that can help. Divided into three main sections, the entire course will take about 45 minutes and will list further reading and online resources.  This is a very useful online resource. To access click here

The HSE has rolled out the Living Well with Chronic Illness programme in 2020 and while not specifically tailored for those living with chronic pain, it is aimed at any person living with a chronic illness. This free programme is very useful in learning new coping strategies.  Details can be found here

Supports & Services

Living with Chronic Pain is challenging as it impacts on every aspect of a person’s life.  Accessing help and support can be difficult and stressful.

Here at Chronic Pain Ireland you are part of a community where you are understood, believed and supported.  We continually advocate on your behalf.  Following the Irish Medical Council recommendation and the Dáil Joint Committee on Health & Children recommendation in 2014 that chronic pain be recognised as a medical specialty, slowly support services are becoming more widely available and accessing help more straightforward.

We work with a variety of stakeholders both here and within the EU and during 2019 were part of the steering committee of the CHANGE PAIN® which continuously strives to create practical tools to support patients and healthcare professional(s) to better manage pain. To find out more and access additional supports go to www.changepain.com/en which includes a Pain Toolkit and details on pain diaries.

Through joining CPI we will keep you updated on the latest news and developments whilst continually striving for better services and supports.

Chronic Pain Ireland is a key services provider and works with many organisations and service providers.  Below are some organisations that can help the person and family living with chronic pain.

The Health Services Executive (HSE)

The HSE is the national health service agency, that provides hospital and community care and services nationwide. In addition, they have rolled out the Living Well with Chronic Illness programme in 2020 which can be very helpful – full details here

Gov.ie

This website has a wealth of information.  For those attempting to stay in employment, trying to get back to work, along with current and potential employers can access the EmployAbility services.

Citizens Information Service (CIS)

The CIS helps you to access information and support services throughout the country. They provide impartial information on social services, benefits and entitlements, employment rights and a host of other information relating to health and social affairs.

Carers Association

The Carers Association provides practical and emotional support to people and their families through home-care services, training and a dedicated carers helpline.

Assist Ireland

Assist Ireland online resource provides information on assistive technology and a directory of products available from Irish suppliers.

The Patient Advocacy Service (PAS)

provides free, independent and confidential information and advocacy support to people in Ireland who wish to make a formal complaint about their care in a Health Service Executive (HSE) funded public acute hospital, and in the aftermath of Patient Safety Incidents.

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