“My life has been transformed. Yes, there are bad days but I’ve learned how to manage them when they arrive.”
Why her words are so remarkable is because until a few months ago she could barely lift a shopping bag of groceries, relied on a cocktail of pain relief to get her through her working week and when Saturday and Sunday finally did arrive she would collapse exhausted and was mostly confined to bed.
The 42-year-old has been living with a painful long-term chronic illness called fibromyalgia which began in her early 30s.
It is estimated that up to 5% of the population nationally are affected by fibromyalgia.
The illness, which was recognised by the World Health Organisation in 2016, is characterised by widespread pain in the muscles, bones and joints and can be accompanied by symptoms of fatigue, insomnia, memory loss, low mood, migraines, irritable bowel syndrome and sensitivity to pain.
Singer Lady Gaga, actor Morgan Freeman and BBC Radio 4 Desert Island Discs presenter Kirsty Young have the illness and have spoken about their experience and struggle. Despite this the condition and people who have diagnosis remain poorly understood at best and at worst maligned.
Janet said: “I am one of the lucky ones. My GP told me about a pilot that was open to a small number of people in my area. She asked if I would like to be referred and I enthusiastically and gratefully embraced the opportunity.”
The pilot was launched in January last year by the integrated community rehabilitation team covering the Hayle to Redruth area (known as north Kerrier).
It is the idea of Esther Hudson who felt much more could be done to support people with fibromyalgia.
There is no blood test for fibromyalgia and it presents as an amalgamation of symptoms and doctors have to exclude all the obvious causes of the signs before they can make a diagnosis.
People can wait between 2 years and a decade for a diagnosis.
Esther, a community physiotherapist with Cornwall Partnership NHS Foundation Trust, said: “Once they receive a diagnosis, currently in Cornwall there is nowhere for their GP to refer them onto for further support and help, all that there is, is medication. For these reasons GPs are, quite rightly, reluctant to make that initial diagnosis.
“Fibro has been a bit of a dirty word in the past and this should never be tolerated. I saw a young woman who was in her late teens and requiring high levels of drugs just to manage day-to-day. How she managed to even walk on that amount of drugs I don’t even know.
“It’s people like this young woman who drove me to launch the pilot. She’s a teenager on a cocktail of drugs that I doubt I could cope with as a grown woman.
“What is her future? She’s, in all likelihood going to be dependent on the state for care, she’s going to have limited job prospects, she’s not going to have a full and happy life and yet if she understood the disease and had an individualised treatment she would then have a much better outlook and reducing the amount of drugs people have to take to manage their condition.”
Esther studied a module in long-term conditions with a focus on fibromyalgia and together with her occupational therapy and physiotherapy colleagues in the community rehabilitation launched the pilot for 10 people who had recently been diagnosed.
People are assessed and given a personal plan, supported by an intervention developed by University Plymouth Hospitals NHS Trust, called the body reprogramming course, which is psychologically based intervention but Esther and her colleagues have added the physiotherapy and occupational therapy input to the pilot.
Esther said: “The brain becoming sensitised to pain or sensitised to fatigue through overwork, through trauma, not listening to your body. The brain is telling you to stop but you keep going until your brain forces you to stop.
“You are giving the brain new input which is helping to re-programme the brain out of pain and into a more normal pattern of behaviour.
“Body reprogramming is about cutting up the day into 30 minute sections. So if you are watching a movie you have to get up 30 minutes in and do a 20 minute walk around, make a cup of tea, do something different and then you could go back and watch the movie for the rest of the next half an hour and so on.
“There is also pacing advice, relaxation techniques and positive psychology which are delivered by my colleagues in occupational therapy.
Most people with fibromyalgia are either perfectionists, altruistic or both”, Esther explained.
“The perfectionism drives them to keep going and going, working harder and then the body keeps producing these stop signals, which the person ignores and the stop signals get bigger and bigger until you can’t ignore it.
“The altruistic person keeps giving to everyone else and doesn’t actually look after themselves well enough emotionally so they become an empty well.”
The pilot supports good sleep, appropriate exercise that doesn’t cause symptoms to flare up, rest and personalised treatments.
Esther added: “A lot of people are very emotional because it’s the first time they have had a chance to speak about it. This is part of what we want to do. We want people to have somewhere they can release what they have bottled up about their condition. If you can’t let it out then you can’t get any better.
“It’s also about accepting that things are not always going to be brilliant, that there are going to be ups and downs.”
Since the pilot’s launch GPs and pharmacists have been keen to find out more about the programme.
Dr Matthew Whiteley, GP lead for the north Kerrier, said: “We have been so impressed with the benefits to the patients that have participated in the pilot that the north Kerrier area is looking to expand it by providing additional training for GPs in giving a fibromyalgia diagnosis.
“We would also like to look at the possibility of launching the body reprogramming course that is run by University Plymouth Hospital NHS Trust, here in the north Kerrier area for people who have been recently diagnosed.”
Esther said her hope is that in 5years’ time there will be a countywide programme which is “keeping people well, in work and leading an enriched life”.
“Our aim for the health and care service across Cornwall and the Isles of Scilly for the future is to prevent illness and poor health this pilot is all about prevention. It’s about preventing people spending a life on medication, focussed on pain, fatigue and struggling day-to-day – surely that makes this programme so worthwhile.”
When did you start to experience pain?
I started to have pain when I hit my early 30s. Suddenly I was struck down with extreme tiredness, fatigue and I was getting a lot of joint and muscle pain and lots of headaches and migraines.
I had problems with my shoulder for quite some time. I tried physiotherapy, cranial sacral therapy, osteopathy, I visited a chiropractor, I tried just about everything including steroids and this went on for I guess a couple of years. Then the pain got so bad that it was affecting my day-to-day activities and although I could still work, it was a real struggle. My doctor, Dr Tamsyn Craze from Manor Surgery in Redruth, diagnosed fibromyalgia and referred me to the programme.
What was life like before the programme?
My biggest problem was with insomnia. I really, really struggled with it and even when I first started on the programme it would be quite often that I would still be awake at 4am. As the time goes by you get more and more anxious because you know that you have to be up and out for work for 8am.
There were times when I wanted to do social activities but I couldn’t face it and although I gave reasons why I couldn’t attend or participate, I felt others saw these as excuses. I would struggle my way through the week and in the end, end up sleeping most of Saturday and Sunday, which left me feeling cheated and in a vicious circle.
I felt unable to do any exercise. When others encouraged me to do exercise, I used to think to myself “If only they knew and understood the pain after doing what they perceive as normal, let alone doing anything more than this…”
What was your experience like on the programme?
Until I got my fibromyalgia diagnosis I thought I’m never going to get better. My doctor was able to point me to a website that helped me for the first time to make sense or it all and that gave me a bit of hope.
When my doctor asked me if I wanted to be referred I was very enthusiastic. There were only a few places and I consider myself one of the lucky ones.
What Esther told me I found really valuable. When I looked at her and saw her enthusiasm it filled me with so much inspiration and confidence that there was actually help out there -and that gave me massive amounts of hope. When you get into this routine when you’re not coping and you’re struggling and you don’t have someone to talk to who actually understands it, then it’s quite isolating.
It helped me understand more about fibromyalgia, coping mechanisms to manage it better and it gave me the confidence to get back into exercise which has helped me tremendously.
I’ve realised that it’s a trait to give your all and you plod your way through and force yourself to do it but in doing so we do ourselves no favours. I was recommended to try Tai Chi, referred to hydrotherapy sessions at Royal Cornwall Hospital, Truro, and slowly I started to get the confidence to get active.
What’s life like now?
Esther, Cath Francis (Janet’s occupational therapist) and the programme have transformed my life. My life is completely different now. My employer, Microcomms Professional Services Ltd, has been really supportive in giving me time off for the pilot programme appointments and the company offers voluntary CrossFit sessions twice a week at work (as part of the health and wellbeing initiative for staff) which I join my colleagues for. When I first joined the CrossFit sessions offered by James Jeffery from CrossFit Belerion, I took in a 1kg weight because of not having the confidence that I could manage anything more but now I’m able to lift 10kg dumbbells. At first I couldn’t do sit-ups and squats but now I’m able to do these well. I’ve also started running on the treadmill and have built stamina up to 30 minutes of running.
The most amazing thing that I have found is that if, for whatever reasons I don’t exercise for a couple of days I am back to square one. Everyone around me – colleagues, family and friends – has commented they see the difference – and when I do get migraines, it’s because I haven’t been exercising.
Prior to the programme I had been prescribed pregabalin, gabapentin and amitriptyline which I’ve weaned myself off and no longer rely on due to healthy lifestyle changes.
I used to feel quite isolated socially because of just how rubbish I felt, I struggled with pain and stiffness, headaches and migraines and sometimes I felt withdrawn. Things are so much better now because I am able to actually go out and I’ve got the confidence to do new things. I have good days and bad days and I still suffer with insomnia but it’s nowhere near as frequent as it was. I have learnt to manage my fibromyalgia.
Definitely having people to talk to who actually understood and were genuinely interested and passionate about it helped me gather the confidence to change my life to help me feel I could manage the illness.
Everyone at work and at home can see such a difference in me and have been so supportive. I am so grateful for the opportunity and hope more people will have the chance to be part of this programme in the future.