Almost 1 in 4 people live with chronic pain, that is pain which persists for more than three months. Whilst there are many and various causes of chronic pain (injury, inflammation, nerve damage etc.), those who live with pain experience many problems in common.
Because it affects the parts of the brain, including those controlling mood, sleep attention, and concentration, chronic pain impacts adversely on many aspects of daily life, work, relationships, activity, anxiety over money, employment, and the future life. It also follows that events or issues that have a negative impact on mood, sleep, activity increase the severity of pain. This intensity varies in an apparently random fashion and often it is not clear to the sufferer what the trigger may be. This can lead to unnecessary avoidance of potential triggers, especially movement or socialising, further reducing quality of life.
Tracking this variability over time is a challenge if concentration is impaired. Pain specialists are divided over the value of diary keeping as it requires motivation to maintain over the length of time needed to identify patterns of triggers, it may also increase the patient’s preoccupation with their pain rather than providing a distraction from it. When consulting a doctor, pharmacist, or therapist it can be difficult to remember or convey how the pattern of the pain changes over time, still less to relate how treatments or interventions have had a beneficial or detrimental effect on a fluctuating symptom. More attention is then given to the pain as it is at the time of the consultation and decisions as to continuing or changing the approach to management are unclear.
So, can technology help? TIYGA (Time Is Your Greatest Asset) has an app that can assist. This app fits well with the spirit of the recent NICE guidance which emphasizes the importance of a more whole-person view taking account of daily routines, non-pharmacological solutions and the context of the pain. The TIYGA app is designed to include a template that is helpful to healthcare professionals and quick and easy for patients, it should only take 1-2 mins to enter data and have a handy record that reduces the problem of recall error. By making diary entry quick and easy, TIYGA can reduce the likelihood of patients dwelling too long on recording their experience and improve the accuracy of the record.
A novel feature of the app is the ability to select different templates for different situations. For example, there is a profile called simply “Managing Pain” but there are others that include “Inflammation or joint pain” that might suit someone with arthritis, one for “Abdominal pain and stress” and others for headache, fibromyalgia and more. The idea is to recognize that chronic pain make take many forms, but patient diaries may be so “individual” in their nature that it is very hard for professionals to interpret them during consultations. TIYGA’s technology addresses this through templated profiles to allow users to select what suits them best. TIYGA aims to help patients to help themselves by recognizing some patterns in the app but also to help them to have better conversations with pain management professionals. Healthcare professionals and patient-focused organisations can even sponsor profiles to ensure that the right parameters are tracked so their patients know whose expertise is behind the profiles.
With the TIYGA app, people can keep track of the things they’d normally put in a pain diary for example they can choose to track each and any of these:
Rate the intensity of their symptoms on a 0-10 scale (e.g., pain level, sleep quality, stress level)
Keep an activity diary to show what they did and for how long (e.g., sleep, walking, work, hobbies)
Keep a health impact diary (e.g., was the pain mild, moderate or severe)
Maintain a brief record of their self-management strategies (e.g., complementary therapies, heat pad)
TIYGA allows them to use any combination of these to keep track of what makes them feel better or worse or see if there’s a pattern that works better for them. By keeping a handy diary on their mobile phone, they can keep a note of what influences their mood and ability to manage pain. It is important to get the activity level right and to appreciate that sometimes the impact of overdoing it may not be immediate but a few days later – that’s where TIYGA’s diary is so useful. This can help them to work with their pain team because reports with activity maps and symptom timelines can be shared with pain specialists to show what were doing and how they felt in the days before and after an incident.
Some people use TIYGA’s activity diary to help them to pace their activities. Rather than giving up something they like or being afraid to do it at all, they might want to try doing the activity in 15min or 30 min intervals and doing something else in between. Pacing and goal setting are very important concepts in pain management – and these can change when they are trying different medications and therapies.
We all know that pain can be worse some times than others and it is hard to remember what was different about the good days and bad days, but if only we knew we could feel more in control and make choices.
As we learn more about the many factors that influence the impact of pain on people’s lives, we need to find ways to translate that knowledge to the patient community and to empower people to bring the learning from pain management courses into their daily lives.
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This blog was also published on https://www.nrtimes.co.uk/pacing-patterns-and-pain-management-tiyga/