I have spent the last 12 years in chronic pain, to the extent that I was unable to carry more than a tiny handbag, had difficulty walking and spent a large amount of my time immobile in bed, feeling as if I was being tortured. I was only able to keep my job due to very supportive managers who let me work from home. My relationship with my partner was suffering and I was unable to maintain friendships, as the pain and fatigue stopped me going out and speaking on the phone. I was classified as having fibromyalgia.
I had several scans and tests, a year’s basic physio in Walthamstow which made things worse, and eventually ended up on a range of heavy duty painkillers. My psychological resilience and fatigue got worse and worse and I recognised that if things didn’t improve I would have to give up work.
Although I been told consistently by GPs that there was nothing more they could do for me, I made one last attempt to ask for help from a new and more sympathetic GP at my surgery (Dr Mayur Gor). I had heard from a friend with rheumatoid arthritis that structured exercise programmes were available and I thought this might be helpful, as I knew that the pain was often worse after exercise.
I asked about structured exercise and Dr Gor referred me for physiotherapy assessment, as well as to a rheumatologist. At the physiotherapy assessment I mentioned that my joints were fairly floppy and that I was poorly co-ordinated (I had been reading that chronic pain was sometimes associated with these characteristics.) Juliet Benson, who assessed me, said that she thought the issue was hypermobile joints. She referred me to her colleague Janis Ross for treatment. (This classification of joint hypermobility was confirmed by a consultant rheumatologist, who was clearly disappointed that I did not have arthritis and therefore had nothing to say to me.)
Janis, on the other hand, set up a programme of exercise and activities which has transformed my life over the last nine months or so. From the beginning she was sympathetic, responsive and optimistic. Much of our sessions were taken up with talking through my fears and explaining why we were trying different things (I had become afraid of physical activity, as doing anything hurt so much). Janis was able to explain and apply the latest knowledge on pain, adapting a range of approaches till we found what helped me. I gradually came to understand that because my joints don’t ‘bite’ at the correct point, my muscles are often being damaged because they are stretching too far with every movement. This causes pain and weakness. The more it goes on without intervention, the more the nervous system ramps up the pain signals, to the extent that everything becomes excruciating. Another issue with joint hypermobility is that it is linked to what can be described as a confused nervous system, which in the end leads to only the more ‘obvious’ large muscles being used instead of core muscles which should be taking more of the strain. These large muscles, such as those at the top of the shoulders, then scream from over-use. The exercises Janis had me doing strengthened core muscles and took the strain off the large muscles, and got me using my joints differently to reduce muscle stretching. We went through a lot of trial and error as some exercises initially were too much for me and made things worse, but Janis’s great strength was in being able to continually adapt and refine activities so they worked for me.
I can hardly believe the difference now. Although I am far from ‘recovered’ and will always have to monitor myself carefully, I can now imagine what it might be like to live a normal life. I can do much of the cooking and shopping that my partner was left with before; I can cope far better with the travel that my job requires; I can work longer hours; I am restarting friendships; I can walk and even run. I am still taking painkillers and am still tired a lot of the time, but my drug usage is reducing and I no longer feel on the edge of giving up. This has all been helped by the extra support that Janis has given me. As well as helping me to understand how to manage my condition, Janis has referred me to very useful counselling and to other support services and groups. Janis has bent over backwards to keep me on her client list for a long period, and now that she is going on a well-earned sabbatical has come up with a flexible arrangement whereby I can call up a colleague for help if I have problems. Janis has gone well beyond the call of duty and as a result has transformed my life.
However, it hasn’t just been Janis – the entire physiotherapy team at the Whittington Hospital has been great, particularly the helpful receptionists who actually pick up the phone and will always pass on messages or be flexible with appointments. There must also be excellent team leadership in place if people are able to offer such patient-centred care. I feel sad that the GPs and consultants I have seen weren’t able to offer me the care I needed for so long, but I am very glad to have finally experienced how well the NHS can operate at times.