Simone Cohn- Fibromyalgia
Reflecting on my personal health journey I can pinpoint certain events which have led me to where I am today.
As a child I was classed as a “white food eater” which meant that all I really wanted to eat was white! white bread, white pasta, white chicken, white rice (except for the ketchup of course so in reality I was a pink food eater! )
I don't remember how long that went on or at exactly how old I was when the next part happened but definitely in primary school. I remember going to see a gastrointestinal consultant because I was permanently constipated and had stomach problems. I still remember the trauma of an endoscopy and telling my mum that I had an irregular “beat” in my bowels. I have no idea if this is was a genuine diagnosis or if (knowing what I know now) I was just a very anxious kid.
There’s another childhood trauma that I remember so clearly and that was being at a friend’s house and falling backwards and hurting the base of my spine. The pain took my breath away and uncontrollable tears filled my eyes. For some reason I never told my parents, but I do remember I being unable to sit down comfortably for months after.
I'm telling you all of this is because these little health stories all mean something in the end- they always do. Years later, aged 16 whilst aboard I was hospitalised with severe constipation only to be told “we can’t do anything about that, but did you know you have a scoliosis”? Errrm no, but thank you…….. Through various eating regimes as a teenager from become a vegetarian (who smoked cigarettes – go figure!) to being a chocoholic, to having a miscarriage, and then developing severe post-natal depression following the birth of my first child. It all means something. These things don’t just happen for no reason.
I remember after the birth of my first child waking up in complete agony…. I remember being unable to open my arms to pick up my son soon after his birth. But the doctor told me it was just hormonal and would ease up. Months after that when I admitted that I really wasn’t enjoying motherhood so there must be something wrong with me, they just put me on antidepressants telling me it was all normal, most likely hormonal, and would pass…..just take the tablets.
After the birth of my second child, a much nicer experience, my depression continued but my lifestyle needed to change. I had always considered myself health conscious, having been in the health industry for many years, so my (now) ex-husband and I embarked on losing some of the excess weight we’d gained over the years by attending first Weight Watchers, then Slimming World. Both painfully boring and demanding with the scales. So we did the GI diet, then the juicing diet (that lasts 2 days and I wanted to eat my own arm I was so hungry!) I’d always considered myself to be a size 13 - size 12 was too uncomfortable and a size 14 just a little bit too big but actually because of my height and my shape I hid it very well. Weight loss wasn’t that important to me, but my health was.
In 2012 I started to get incredible pain at the side of my ribs and up my back and under my scapula this happened after I'd eaten certain foods usually a curry or something spicy. Eventually I decided to see my GP and was diagnosed with gallstones. Thank goodness for private medical health as I managed to get straight to see a general surgeon who said I could have keyhole surgery to remove my Gallbladder and that will be that. So like most people, I put my faith in the professional and went under the knife to have my gallbladder removed. I remember in the consultation he said to me it will only be a two-week recovery.
But it did NOT take two weeks to recover it took many months. I had been battered and bruised and left with numerous scars and I was severely traumatised by the experience. This was, in my mind the trigger for my future issues.
Soon after I started to feel continuously exhausted, achy and in pain in my upper back, elbows and knees, and hands. I ached like I had flu all the time, and was suffering from migraines, headaches and jaw problems. It felt like one thing after another. I felt miserable with motherhood and miserable again with my health. The doctors kept fobbing me off telling me that all the physical symptoms were because I was a “depressed mum” with two young children. Over time things would change. And overtime things did indeed change. By the end of an evening after dealing with my kids all day and possibly working in an evening as a massage therapist I was totally exhausted. I had no energy left for my poor husband and would end up flat on my back on the sofa unable to make him dinner. This was not what I signed up to, not the life I wanted.
Being married to a South African has its advantages. They have a way with words which means things get done, so on the day that he accompanied me to the GP he insisted that this is not normal for my wife to feel like this. Maybe her “normal” blood results are NOT normal for her and (to my GP’s displeasure!) “we have done a lot of research online (Dr Google!) and we think she has fibromyalgia.”
With that, my health journey began.
I was sent to a wonderful orthopaedic consultant. He prodded and poked me and it all felt fine. He watched me walk, he could see I had a scoliosis, he saw I had issues with my jaw and after taking bloods saw that my Vitamin D levels were virtually zero. He put me on a massive dose for 8 weeks. After that, I walked away feeling a fraud. He prodded and poked me and none of it hurt. I felt embarrassed, I had wasted his time, but on the journey back home, I started to feel incredibly unwell, and ended up with flu like symptoms, aching all over, headache, exhausted, it was awful. I went straight to bed. I phoned his secretary the next day and told her to please pass that message on. I was uncertain but it could have been relevant. It was certainly relevant as he confirmed at my next consultation. Yes, I did have fibromyalgia and referred me to the waiting list for The Pain Management Programme at the incredible Royal National Orthopaedic Hospital in Stanmore. He also suggested I see a pain psychiatrist, which I refused to do as I was sick of doctors telling me it was all in my head!
By 2014 I had decided to give up my job as a Bodyworker. I had built a successful business over many years but knew I needed to take the time to get myself fixed; my young kids needed their mum back. I decided I would go see the psychiatrist. He was incredible and helped me enormously. I had already stopped the antidepressants a while before since they made me feel totally numb and no less depressed. But the Psychiatrist encouraged me to try another type which would help bring the pain sensors in my brain down a couple of notches. I did resist this for a while and he respected that, but then decided that I would try a low dose. As much as I hated the idea of being back on antidepressants this drug did make a difference to my pain. His sessions and the new drug allowed me to clear my mind in order to make the decision to further improve my health.
In May 2014 I started the Pain Management Programme. All I have to say is that if you ever have the unfortunate diagnosis of chronic pain, and you get this opportunity, DO NOT turn it down. It was wonderful. Educational, encouraging, mindful, holistic and just incredible.
In March 2015, my mother-in-law passed away. We flew to south Africa for the funeral. It was a stressful time and the stress caused my flare ups to return with a vengeance. One of my brothers in law, despite all the stress he had from the lead up to his mother’s death, looked incredibly well, in fact the healthiest he had looked in a long while. I asked him what he was doing, and he mentioned the word “banting”. He explained a little about what it was, and I parked it in the back of my mind as I knew I was not going to make any nutritional changes at that time since we were due to take a family trip to Disney the next month.
The trip to Disney was exhausting and I did eat most things without any restriction. I felt rotten, tried, achy, headachy, low mood etc. So, after Disney I went and did some research about Banting. I knew by then that something had to seriously change in my nutrition. I was really addicted to sugar/chocolate/biscuits, and bread products. No matter how “good” I was during the day I always went back to my comfort foods.
This Banting stuff intrigued me. In South Africa it became big via a company called The Real Meal Revolution. It had a chef, an expert on addiction, and a well-known sports scientist professor called Prof Tim Noakes. It was a programme where you sign up for a period of time. I chose three months and was given all the online support I needed to change my lifestyle and nutrition. It was geared towards eating real food with a limited amount of carbohydrates, plenty protein and healthy fats. We were given an understanding of the physiological and psychological reasons behind the changes. I really wanted to give this a go. I was truly ready and I knew that this was the change I needed to make.
When I read the information it resonated with me to the extent that I felt inspired to make the changes. So, finally, on the 4th of June 2015 my true health journey started.
Within a month my fibro pain, my puffy face and body (inflammation), my headaches, my migraines, my moods, my foggy brain, my oily skin, my aches etc all started to fade. People noticed a glow about me that they hadn’t seen for a while. I started to feel like I was getting my life back. I could not believe how good I felt, but it was noticeable, not just to me, but to everyone. By September 2015 as the programme was coming to an end, I felt a calling that this would be my new path. I needed everyone to know that it IS possible to take control of your health and make changes to your nutrition and not feel *insert your problem here*. The more I read about the subject of sugars and carbohydrates, the more I realised this message needed to be spread. I felt an array of emotions about what we were being told and taught by government guidelines and advertising. Why were we being told we need all this highly-processed toxic food? Why are we told fats are bad? Why are the experts who are making massive changes in the “banting” world (Low Carb/Keto) not being praised for all their work? Why is there such a push back from the mainstream orthodoxy?
When you look into the subject deeper it becomes very controversial. (Something I’m not shy to talk about) It doesn’t fit the Government, the food industry or the pharmaceutical company narrative. In short, for those vested interests, there is no money to be made from good health!
The term “banting” is known in our world as low carb high fat (LCFH) or Keto (ketogenic), or Real Food. Whatever you call it, it comes down to a few simple theories: sugar/carbs are not essential to life and we really do not need them in the amounts most of us are consuming. In fact they are harmful and damaging. Moreover healthy FAT is NOT bad for us. For those people who are on the Prolongevity Wellness programme you’ll gain a far greater understanding of this. Eg What are carbs? What is good fat /bad fat etc.
If you would like more guidance on this please get in touch.
So, there you have it, my very long health journey.
One thing is for sure: I will be on this path forever. For me there is no turning back. I will never go back to the standard Eatwell Guide that is foisted on us by our government, and I will forever be grateful to all those people who helped me on my journey and reignited my passion to go back to working in the health and well-being field.
I can state with certainty that I have put my fibromyalgia into remission, which is something we are told by medical professionals will never happen. We are told that will have it for life, that there is nothing to be done about it, take the tablets…….. Its simply not true. I must be honest: there is no quick or easy fix but it IS well worth the effort and YOU can change the narrative.