When I look back, I have been complaining of “lack of energy” for as long as I can remember. Even as a student it was a standing joke that I would never be partying all night and would be found fast asleep in bed!
I graduated as a dentist from Guy’s Hospital in 1983 and it was during my time there that I developed migraine headaches that would put me in bed for 3 days at a time, unable to tolerate daylight and feeling nauseous. By the time I was in my late thirties I was married to a dentist, had 3 children and also working part time in our own practice. My migraine headaches had become something to truly dread because I would have 1-2 a week with little respite in-between. When I wasn’t in severe pain my brain was very foggy and I frequently had to remind myself that I was once clever enough to get a degree. I also developed crippling neck and shoulder pain from which there was little relief.
My doctor was very sympathetic and prescribed powerful medication – at £8 each, no expense was spared but they left me with a permanent hang over. Then one day a particularly bad migraine left me with stroke like symptoms down my left side. My balance, hearing and vision were all affected – the differential diagnosis was multiple sclerosis or a brain tumour. An MRI scan and appointment with a neurologist were quickly arranged. A few days later I was told that there was nothing wrong even though at that point I still couldn’t stand up without help or see or hear properly. It certainly didn’t feel like nothing was wrong and I remember feeling ridiculously disappointed! No further treatment was offered – it was “just a headache.”
These symptoms continued for many weeks, during which time I was told I probably had Meniere’s disease and was finally offered grommets in my ears to help relieve the pressure and dizziness. I declined the offer, not convinced that the diagnosis was correct. I very slowly improved but still continued to get the headaches.
I then had the good fortune to meet Dr Roy Higson, one of the most forward thinking dentists in the UK, at a postgraduate meeting on migraine and tooth grinding – surely this wasn’t what was the underlying cause of my problems? Is so, why had I never been taught anything about this as an undergraduate?
This was my first Aha moment as I discovered that indeed stress and tooth grinding were the root cause of the sore muscles around my head and neck that caused the headaches. Over a period of 4 months I wore a splint over my teeth and then had the biting surfaces gently reshaped in a process known as equilibration. The migraines I had had for nearly 20 years stopped and I have not had one since! To me this was a miracle and it hadn’t involved any drugs or surgical intervention – just a little polishing of my teeth!
At about the same time as I met Roy I also had the good fortune to meet a lady called Suzi McIntyre. We both had children in the same class at school. Suzi is a vet who has a great interest using nutrition as a way of preventing disease. She introduced me to the concept of oxidative stress and the need for a great deal of antioxidants in your diet to counterbalance the damage caused by free radicals. At the time I didn’t have a clue about any of these things, but was so low in energy, thought I must give it a go.
So I started taking an antioxidant supplement , which is simply dried fruit and vegetable powders made from 17 different raw fruit, vegetables and grains. This particular whole food supplement has a very impressive amount of research behind it, proving that when you actually swallow it, it is absorbed into your blood stream within 20 minutes and within a week antioxidant levels are much higher and more importantly lipid peroxides (a measure of free radical damage) is very much reduced (zero in some subjects.)
All I can say is that within 4 months of starting this I suddenly had enough energy to go to the gym and do a very strenuous workout 3 times a week. For those who knew me this was nothing short of another miracle – even my sister, who I knew was not feeling great at the time after having just had a baby started to listen to me ( I had been enthusiastically boring her to death with my supplement recommendations and had become a bit evangalistical!)
Headaches were gone, enough energy to work out – I suddenly had a new life. So did I decide to be kind to myself and spend my new found energy wisely – no chance – more energy meant I could work harder and do more things!
We moved home and started major renovations on an old cottage (whilst living there at the same time.) We also acquired 3 cats, 2 dogs and a pony (as if I didn’t have enough mouths to feed.) Things were also not easy at work – we had bought another dental practice and life as a dentist is hardly stress free!
Within about 2 years I suddenly developed multi joint pain, acute tendonitis in both Achilles tendons and severe stiffening in my fingers. Suddenly walking up and down stairs was a major problem and I couldn’t hold anything very well. I was unable to lift my arms without severe fatigue. More scans and blood tests showed severe degeneration of my cervical spine and Reynaud’s disease in my fingers, making them stiff and permanently cold. I was offered spinal surgery and steroid injections and a Rheumatologist said I probably had Sjogren’s syndrome, a disease of the immune system. I was a little surprised by this since my own medical knowledge told me this illness also produced dry eyes and mouth which I did not have.
Again I declined the conventional offers of help, not convinced that I had a correct diagnosis. Things continued to deteriorate and my cognitive functioning became impaired. Loss of memory, inability to sequence anything, loss of balance and spatial awareness, frequently saying the wrong words and finally an inability to focus my eyes. I had also developed a chronic cough and would wheeze after eating food. The optician suggested diabetes (apparently a cause of unstable vision). Again negative.
Things had slowly and insidiously got so bad that I could no longer do my job as a dentist or a mum – I even had to have food cut up for me because I had no energy to hold a knife. I finally gave up work on Jan 9th 2006.
I started to see a chiropractor in Cardiff called Louise Sasse to help relive the pain in my neck and arms and she suggested I might have ME/CFS. I had heard of it but didn’t have a clue what it was. Louise gave me a book recently published by Professor Basant Puri who is a researcher at the Hammersmith Hospital in London. His expertise is in MRI scanning and brain disorders and the book was all about Chronic Fatigue Syndrome which appears to have its basis in oxidative stress!
This was my second Aha moment but this time everything made perfect sense. I quickly searched for Professor Puri on Google and was quite amazed to find an email address for him. A few days later we met at the Hammersmith Hospital and he confirmed that I definitely have ME/CFS and have probably had it since childhood!!
I still find it hard to express my emotions – astonishment, enormous relief, anger but most of all hope in that now I know what I am dealing with and have the hope of a full recovery. It was also an enormous relief to be told I was definitely not suffering from depression –I had recently been prescribed antidepressants and as usual I was resisting.
Professor Puri told me about an essential fatty acid supplement called VegEPA, a combination of virgin evening primrose oil (omega 6) and pure eicosapantenoic acid (omega 3) which helps improve many symptoms, since ME is characterised by an inability to properly utilise these nutrients from the food we eat. He also said you needed a good mineral and vitamin supplement in order for the VegEPA to be most effective and that the fruit and vegetable supplement was a perfect compliment.
Within 8 weeks of taking the combined supplements my improvement was astonishing. My cognitive functioning vastly improved and my energy levels were much higher. I have not returned to my previous profession for many reasons – high exposure to infection, the need for Hepatitis B vaccinations (linked with ME/CFS) and high stress levels all tell me that it would not be a kind thing to do to myself. Instead I have devoted the last few months to finding out as much as I can about this awful disease and trying to address the appalling and shocking lack of knowledge and treatment options at primary care level.
Our website and lecture series have come about in order to give ME/CFS patients and their carers something I was denied for a long time – hope- and I am enormously grateful to our speakers who are giving their time free of charge.
The message is designed to give you the benefit of education so that you can understand what is going wrong in your body and can make informed choices to do something about it yourself. I have personally found that taking charge of your condition and responsibility for it is enormously empowering and will put you on the first step to reducing the stress that fuels your condition and on the road to better health.
We are not and never will offer a miracle cure since this is a chronic illness that probably has its roots in a genetic disorder but like all chronic conditions it can be kicked into remission. How well this happens depends on how well you feed yourself and how kind you are to yourself – and believe me – I know it works – you just have to take lots of baby steps in the right direction. Everything that is recommended here has its basis in sound scientific research.
I must thank the following people who have helped me in my search for an answer – Dr Roy Higson and Dr Bill Comcowich from Aspen Colorado who sadly passed away last year. They both taught me more about dentistry and how mouths work than I could have ever imagined. Suzi McIntyre veterinary surgeon extraordinaire, Louise Sasse, Professor Basant Puri and Dr Raymond Perrin. You are all amazing forward thinking healthcare professionals. Also Dr Jav Nasemi and Mina Nasemi at Igennus – thank you for your vision and the leap of faith you must have taken in manufacturing VegEPA and the help you have given me personally.
Finally I must say that I am really quite grateful to this horrible illness because without it I would never have acquired the insight I now have about how my body works at cellular level. I truly believe I know what it means to be a holistic practitioner and am able to empathise with patients.
This message is good advice for everyone because you don’t have to be ill to benefit from it – use it as a way to keep well.
