Reprinted with the kind permission of Sarah Borien and A Life Less Physical
Have you ever seen Doctor in the House? It’s a UK BBC 1 programme where a doctor moves in with a family to try and solve their chronic health conditions. The programme follows Dr Rangan Chatterjee, who believes it’s impossible for a GP to effectively treat complex health conditions in five minute consultations (no shit Sherlock), as he spends a week with the patient to understand their lifestyle and try to ‘solve the mystery.’
I watched it for the first time last week when the focus was on a woman, Gemma, who suffers from cluster headaches – or ‘suicide headaches’ as they’re often known. She was having up to 16 attacks a day which were absolutely agonising; they only lasted ten minutes or so but for those ten minutes she was screaming in pain and it was horrifying to watch.
I cried throughout the entire episode. I don’t get cluster headaches but for the last two years I’ve been having a similar pain every four to six weeks which lasts for about 24 hours. The headaches are far worse than my usual migraines (which I’ve had since the age of nine) and this – on top of my fibromyalgia – has made me realise that something really needs to change.
The journey to diagnosing and then managing chronic pain is never an easy one. Since I became ill in 2009 I’ve seen five GPs, two physiotherapists, one rheumatologist, one pain specialist and one acupuncturist. I’ve also tried four types of alternative therapy and three sets of cognitive behavioural therapy, had one MRI scan and one set of blood tests. During that time, no one and nothing has helped. The MRI scan and blood tests took place within the first month of my symptoms occurring but, since the label of ‘fibromyalgia’, no one has done any further investigation on any of the symptoms I’ve presented with – new or otherwise.
I know this is a very familiar story for chronic pain patients, and if you’ve been suffering from fibromyalgia or chronic fatigue for decades then I know your numbers are far higher than mine.
During the episode of Doctor in the House, these were the five health/lifestyle areas that Dr. Chatterjee focused on in an attempt to reduce the cluster headaches. Tests for neurological conditions came back negative and medication wasn’t working, so he changed Gemma’s diet, referred her to a chiropractor, provided supplements and introduced relaxation and self-care activities. By the end of the three-month review period, she had gone from 16 attacks per day to 5 per week. So, after wiping my tears (tears of empathy, jealousy, exhaustion, and frustration) I decided it was probably about time I started from the beginning and re-analysed my chronic pain.
When I was diagnosed with fibromyalgia eight years ago, I was convinced there was something else wrong, something they were missing, but as time went by I made my peace with it and accepted that the diagnosis was most likely correct. The challenge then wasn’t the diagnosis, but the misunderstanding of fibromyalgia in society and the stigma attached to invisible illnesses. Last year there was some progress when research was published that suggested the pain was down to abnormal sensory activity in the way our brains process pain; it seemed like a bit of a breakthrough and the Arthritis UK Pain Centre is now funding a study to develop a blood test to diagnose fibromyalgia.
So now I feel like maybe it’s time to take some advice from Dr. Chatterjee. My potential neurological conditions were explored in 2009 so I’m assuming I can rule that out; that leaves me with four other areas to investigate. I’ve addressed them all individually at various times (swimming was actually pretty good, the gluten free diet was not because – pizza) but a lot of people say the best way to manage chronic pain is with a multi-treatment approach and that’s something I haven’t looked in to. In fact, I’ve always been adamant it’s not the right approach; if I change ten things at once, how will I know what’s helping? Plus, doing lots of things in one go costs money, takes energy, and requires focus. The options are endless; which classes do I join? which alternative therapist should I see? which supplements should I take? and how am I paying for all of this?
You know what I want? I want a GP who can give me a list, give me some recommendations, and tell me where to start. Sadly, that’s not a thing, so apparently I’ve now reached a new phase and I’m following the advice of a TV doctor. Is this what they call a new low? Perhaps. But let’s go with it…
Tonight I’ve made a list of all the things I need to do, appointments I need to make, classes I need to change, food I need to eat… the list goes on. The multiple treatment approach is happening.
As always, I’ll keep you posted. I’m going to do a series on each of the four areas so that you can follow my journey and see what’s working. In the meantime, help me out… What’s made the biggest difference to your pain management?
Sarah Borien lives in a country cottage in Oxfordshire with her husband and their two cats. She has had fibromyalgia since 2009 and is passionate about finding and sharing new coping strategies. Sarah authors her blog, A Life Less Physical, and has written for New Life Outlook (Fibromyalgia).