My Friend with Fibromyalgia
My first pain coaching client was a friend. She’s funny, clever and kind and she also happens to live with fibromyalgia. I asked her if she would be my guinea pig and she was open to it - really more to help me than because she believed that we could reduce her pain. She had lived with constant chronic pain for decades and had already tried everything to make it better -talking therapy, physio, yoga, specific diets, hypnotherapy, medications, supplements and more. She was bed-bound, socially isolated, unable to work and suffering from depression.
People living with persistent pain have over sensitised nervous systems and her pain messaging system was like a super highway. I wanted to help her to create new roads - from scratch. It sounds bonkers but I wanted to use imagery training to help her. Meta analysis of imagery training with chronic pain patients has resulted in a significant difference in pain and quality of life. And. I shared the story of the pain scientist Dr Moskowitz who recovered from his chronic pain using this approach.
Before we could create an imagery exercise for her, we needed some baseline data. She was able to give me six months of notes from her pain flare journal. She described her pain for me with a questionnaire
So that I could get a sense of the themes arising from her pain experience. She also filled out a Patient Specific Functional Scale and a Chronic Pain Self Management Web. I addressed the usual things: stress, sleep, nutrition, pre existing conditions and the like. We also decided which goals she would like me to hold her accountable to.
From here we moved on to the ten point questionnaire centred around elements of coping imagery. It re-scripted her main images of her pain. It reinforced her self efficacy and coping techniques. It included body representation; focus on a future point; functional goals; motor imagery and finally aimed to create a sense of safety for her. This last point is important, in the words of Mosely and Butler:
From this I created a ten minute recording that she committed to listening to regularly.
This table shows how her pain themes changed from December to June. The most heart breaking image for me was that she saw her pain as a black hole: “walking around the edges of a hole, staring down into the darkness wanting to fall down.” It took four months but she got to a point where the hole had grown over and she saw herself lying in the sun on top of where it had been. By the end she saw her pain as a physical and anatomical problem. Her sense of pain as heat had cooled. The full body pain had concentrated to hips and pelvis. The aura had reduced further in size. The river was entirely gone. The sense of surprise and attack were replaced with control. The knots and tightness were replaced with feeling stuck. The worries were unchanged. The large red aura surrounding the body was replaced with dark red spots around the body. The prison was replaced with knots.
This is her Chronic pain Self Management Web. The points closest to the centre are where she scores her abilities as nearer to zero and further out are nearer to ten.
This is a Graph of her pain flares over the six months preceding her imagery training and then the six months during her training.
My wonderful friend helped me to assess the feasibility of positive imagery training for the self management of pain. It had positive results in that she was able to manage her pain better, she saw goal progression and a reduction in pain flares. Targeting her pain perception reduced the impact of pain on her life. However, imagery training requires considerable commitment and adherence to the process, so it will not be be for everyone. I’ll hand over to her now to add any points that I've missed out or give insight into the process:
I have known Pieta for a long time, and she had been so kind and generous with me over the years that I wanted to do something to help her. So I agreed, even though I was convinced it wasn't going to help. I promised to do all the things she told me to do, and I did (for the most part lol). I had really struggled with imagery exercises in the past, mainly because I'm such a literal person but also because they just seemed to exacerbate the pain because I wasn't able to use my usual distraction techniques. But Pieta's videos were different because she used the things that we had discussed in the actual exercise. This meant I could relate immediately to what I was trying to visualise, and to be honest it made me feel kinda special that someone had taken the time to make something just for me. It really did make a difference, not to the pain itself necessarily, but to my experience of the pain. That was (and is!) fantastic. My work with Pieta also opened me up to get back on the horse and try to find other interventions that could help. My life is now completely transformed, both in terms of my physical and mental health.. but that's another story 😊
