Dealing and living with pain can be a debilitating and traumatic process, particularly when the person lives with life-changing injury. Here, Sophie Lester, a case manager with ILS Case Management, shares the story of a client with spinal cord injury and her experience of pain
I have worked in case management for seven years and come from a background of spinal cord injury. Working as a case manager with an individual who has persistent neurogenic pain can be daunting for both the case manager and the individual.
From my perspective, I view it as a jigsaw puzzle; a good metaphor for explaining it. You need to find and analyse the individual jigsaw pieces, establish if they fit or if it isn’t quite right and then need to explore another puzzle piece. The result is the full jigsaw puzzle completed, only possible through careful examination of all of the individual pieces.
I have been working with a young lady in her late 20s who sustained a T12 incomplete spinal cord injury as the result of a road traffic accident. She is independently mobile with crutches and orthotics and has pain, sleep, and fatigue as major contributors to her presentation and disability.
As a case manager, my role was focused on supporting her to develop her independence, confidence and return to a life that she wanted following her injury.
The young lady’s perception, views and beliefs on disability and symptoms of her spinal cord injury were very dominant and were significant on her behaviour.
For example: she believed that disabled people have less worth than abled bodied individuals, she did not want to share that she had a spinal cord injury or the true impact of her disabilities, she did not want to maintain contact with friends who knew her pre-injury and isolated herself away from others.
The pain experienced was neurogenic in nature and was predominately focused in her legs, feet, and bottom. She described it as burning, like red hot pokers and throbbing. It significantly impacted her function daily and her sleep pattern and quality at night-time. However, due to her desire to improve in her abilities, she worked and pushed through the pain with rehabilitation activities.
The key areas that were explored with this client were:
- Understanding of what pain is and beliefs around pain – what does it signify?
Understanding how this young lady saw, perceived, and understood her pain was crucial as well as understanding the significance of her pain and what it represented for her. For this young lady, this took some time to explore due to her needing to feel safe and secure in sharing her beliefs and perceptions, which were very personal. Through discussions, it became clear that she believed that the pain was a symptom of neurological recovery and that her disabilities would improve to allow her to recover to be ‘normal’. She didn’t want to share her pain as she believed people would patronise her as she had a disability and see her as less worthy as an individual. Understanding this allowed it to be shared with the wider Multi-Disciplinary Team to establish an approach that was specific and meaningful to her as an individual.
- Multi-Disciplinary Team approach
A consistent Multi-Disciplinary Team approach to pain management with good communication between team members and regular team meetings was established quickly for this young lady. A psychologist was an active and early part of this team, which was crucial in helping the team understand the beliefs, behaviours, triggers and negative coping strategies that were in place. The work completed together was to talk about these, look at positive coping strategies, self-help strategies and challenge the beliefs and the reasoning behind these behaviours and beliefs.
Other team members involved in the care were: physiotherapist, occupational therapist, medics, massage therapist and a consideration of acupuncture.
The aim as a team was to work consistently together to improve this young lady’s understanding and beliefs around pain, help her build resilience, resources, and positive coping strategies. It ensured that the teams’ goals, whilst all specific to her, worked well together.
- Language around pain and pain management, expectations and education
For this young lady, it was evident that language and discussions previously had been with a focus on ‘medication increases and changes in medication to improve’ as well as the need to ‘speak to a consultant’ about pain management.’ Different language was introduced in relation to pain management across the multi-disciplinary team to include words and thoughts such as ‘long term pain management’ ‘focus on managing the pain’, ‘acceptable level’, ‘coping strategies’, ‘understanding the pain’ and the concept that pain was a ‘multi layered’ and overlaid on many other different elements and vice versa e.g. stress, sleep, fatigue etc. The aim of this was to help the young lady understand the expectations of pain management, start to understand more about the pain experienced and to help educate her as part of her rehabilitation.
- Identifying interrelated elements
Exploring the correlation between pain, fatigue, sleep and activity levels was a big focus for the team and the young lady. She had a tendency to push herself physically as she believed she would continue to improve in her abilities. This exacerbated her fatigue, poor sleep patterns and pain symptoms. Identifying, tracking and challenging this through fatigue, pain and sleep diaries allowed an understanding to develop about how to help her with managing her pain levels. For example: challenging her to take an activity out in order to experience the positive impact on these symptoms, encouraging and giving her permission to take a rest etc. This helped further build her understanding of her own symptoms and self-management. This helped to improve areas relating to pain, as well as fatigue and sleep management for her.
- Medication Review
The young lady noticed, as did her family, that she was having some increased memory difficulties as well as finding waking up difficult. She also described the feeling of having ‘brain fog’ and that her ‘brain didn’t work properly’. Regular medication reviews to look at the current medication, side effects and impact on her presentation occurred as part of the multi-disciplinary team. Changes in these helped to improve the symptoms she was experiencing, helped her feel clearer in her mind and improved her self-esteem. This dovetailed back into her progress within her daily life and rehabilitation.
This young lady does still experience neurogenic pain; however, she now feels more positive and is starting to accept that this will continue to be part of her long-term future.
Her own language has changed when discussing pain – she talks about managing her pain as opposed to it ‘disappearing’. The young lady is now going out more regularly with friends and family and has developed a greater understanding of how different elements of daily life impact on her pain. She is actively using positive coping strategies and self-help strategies to help with this.
“Research shows that acceptance of living with pain can make a big difference. People are often looking for complete pain relief, but by seeing that pain is a part of daily life – not something that can be erased – they often become more resilient” – Dr Jasmine Hearn via The Backup Trust.
- Sophie Lester is a case manager with ILS Case Management
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