Living with Chronic Fatigue Syndrome CFS/ME

I was diagnosed with Chronic Fatigue Syndrome in 2010 after I had been virtually housebound for nearly a year. At the time of diagnosis, and to this day, I felt like it was an unnecessary  and useless label. The diagnosis didn’t come with any kind of treatment plan, medication or even advice. It simply came with a “we don’t know much about it, but you’ll probably have this for life”. I was sent on my way believing that that was my lot. Thanks Doctor.

Chronic Fatigue Syndrome does more then it says on the tin – and that’s why many CFS suffers are fed up with this vague and dismissible name. CFS/ME is a complex chronic illness that manifests differently among it’s victims and involves not only debilitating fatigue, but also chronic pain, irritable bowel syndrome (IBS), brain fog, weight loss, fibromyalgia, headaches, nausea, insomnia, muscle weakness and more.  woman-506120_1920

The causes of Chronic Fatigue Syndrome are still debated, despite it being reported for more than 200 years. It’s likely that there are several triggers, and that a unique mix of factors trigger each individual’s illness.

In addition to viruses as the cause e.g. Epstein Barr, a recent review proposes a disruption of gut microbiota as a possible cause (Navaneetharaja et al. 2016). Our gut microbiome is so important for our long-term health this proposal doesn’t surprise me at all, and it fits with my experience. Because our gut microbes are so important, whether they are disrupted by a pathogenic virus, poor diet, stress or something else, the knock-on effects can be far reaching.  CFS has also been proposed as an autoimmune disease triggered by gut dysbiosis and disruption of the lining of the gastrointestinal tract (Navaneetharaja et al. 2016).

It’s easy to think that the virus that I caught in Costa Rica in 2009 was the culprit, as many studies show connections between CFS and various viruses, but in reality the virus I caught was the straw that broke the camel’s back. My CFS had been simmering away for a long time – I believe since my mid teens.

For me, I believe my immune system has been operating sub-optimally for a long time. I believe that my CFS is a result of gut dysbiosis and autoimmunity.  I know that when I look after my gut and acknowledge my diagnosed autoimmune disease (Hashimoto’s thyroiditis) my symptoms improve. It’s common to collect autoimmune diseases if you don’t catch them early and work at reducing inflammation.

For years I’d had periods of inexplicable exhaustion. As a child I’d happily curl up anywhere and go to sleep. In the summer holidays I remember systematically sleeping in until 11:30am and being shocked by how tired I was, but I simply couldn’t wake up earlier. I’ve never been sporty or energetic and I know I should be in bed at 9pm. I have been constantly cajoled, pestered and teased into doing things – going for walks, staying up late, going to the pub – when my body is crying out for sleep. At university, during my undergraduate, I had one day of SCUBA diving each week in the winter. I’d suffer severe headaches afterwards and I’d be exhausted the next day, barely able to walk to my lectures. In my early 20s I’d wonder if I’d be able to walk to and from town – just a 20 minute walk – but I was unsure of my strength. I remember catching a cold and being in bed for days, and then unable to walk faster than an 80yr old with a Zimmer frame. It was ridiculous and I remember marvelling at my lack of strength.  Each of these episodes passed and, once they had, I continued on with normal life – after all, all the doctors I saw told me I was normal.

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The final straw

I got seriously ill in 2009, at the end of my PhD. I’d had several quite stressful years during my PhD, but I’d loved my work and was passionate about producing high quality science. I’d worked hard in a very toxic system with no support. I had my ideas and data stolen, suffered abuse of power, manipulation and sexual harassment – things that are rife in academia. No-one had my back. I didn’t have an academic champion or mentor until it was far too late. This stress during my PhD was definitely a huge contributor to my poor health – and a big factor in distancing myself from academia. But it wasn’t the sole cause of my CFS. Many people unhelpfully told me I’d made myself ill by working too hard. While several studies link perfectionism and CFS (as reviewed by Kempke et al. 2015) this isn’t the full story.

What it CFS feels like

The fatigue is like no other. A total exhaustion that stops you from being able to lift your head off of the pillow, from moving your legs to get out of bed, from standing while the kettle boils or from being able to speak. It prevents you from functioning and makes you pause and question the necessity of every action. The brain fog that goes along with it is nothing short of terrifying. I could no longer rely on my brain. I couldn’t recall dates, times, facts or even names of close friends. I couldn’t problem solve. I couldn’t hold a conversation because I couldn’t follow it or remember what had been said or what I had already asked. It was humiliating and scary. I had terrible IBS and, despite eating three or more main meals in a day, I kept loosing weight. I ate and napped. That was it.

I went from being a competent, independent and reasonably intelligent woman to someone who couldn’t communicate with her friends, didn’t have the energy to read and couldn’t walk to the end of the road. I was by myself all day while my husband was at work. I was lonely and down. I needed to be cared for. I needed someone to shop, cook and clean for me, and my husband became my carer.

broccoli-952532__180Slowly I made myself better by focussing on me and allowing myself to put my health first. I took advice, I listened to my body and I learned to let go of anger. I changed my diet, even though my diet was healthy, and my approach to life. I radically reduced carbohydrates and I cut out gluten. I prioritised my sleep and I stopped using chemicals in my home and on my body.

It took time, but I returned to “normal” – at least I was no longer chronically fatigued and ill. I was different though, but in a good way.

I have to keep on top of it, especially since I also have Hashimoto’s thyroiditis, which shares many of the same symptoms as CFS. When I let my diet slip or if I pack too much in (which is a constant tendency),  I know I’ll pay the price.  It’s all about balance.

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Do you suffer from CFS or another debilitating illness? I’d love to hear your story.

I’ll be posting soon about the changes I made that helped me get my energy back, so FOLLOW my blog to make sure you don’t miss out.

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All the best,

Caroline

 

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Love your microbes

I heard Tim Spector’s talk at the College of Medicine’s “Food. Food the forgotten medicine pictureThe forgotten medicine” conference earlier this month. He is mad about gut microbes and health, and has written a book about it The Diet Myth.

We are covered in microbes – single-celled organisms that are invisible to the human eye and the oldest form of life on Earth. These micro-organisms live on us and in us – with a wealth residing in our digestive tracts. Each of us has a unique gut microbial blueprint – passed, in part, onto us by our mother during a natural birth, but dependent upon our genetic make-up (Goodrich et al. 2014). When we are healthy our microbes are diverse and abundant, and responsible for immune system development and long-term health (Romero et al. 2014).

99% of our microbes are beneficial. 

These “friendly gut microbes”, if you will, enable us to breathe, to digest our food, manage our weight, regulate our immune system and resist disease (Stearns at el. 2011).

Altered gut microbial diversity, or dysbiosis, plays a role in chronic and systemic disease, such as obesity, cardiovascular disease, diabetes, IBS, Ulcerative colitis and Crohn’s disease (Kinross et al. 2014), autoimmune disease e.g. rheumatoid arthritis, MS, Hashimoto’s thyroiditis, Grave’s diseases (Amy et al. 2013) and cancer (Schwabe and Jobin 2013).

It’s therefore worrying that we have grown-up being afraid of “germs” and systematically kill-off these life-giving, protective microbes with hand sanitiser, bleach, antibiotics. We can also cause dysbiosis through infection, lifestyle and diet.

Killing-off or not looking after our microbiome has long-term health consequences. In children, for example, taking antibiotics between 0 and 2years old is linked to increased chance of childhood obesity, growth impairment and allergies (Cox and Blaser 2014). We’ve likely all had antibiotics, and kids are given them routinely because of the plethora of infections they tend to get. If you must have antibiotics, you can buffer the effects by using a good probiotic and ensuring a diet and lifestyle that promotes the re-establishment of a healthy microbiome.

coral 3Our gut microbiome can be thought of as an ecosystem – a biological community of organisms that interact with one another and respond to the physical environment.. A high biodiversity of organisms, relative to climate, is characteristic of a healthy ecosystem – be it a coral reef, tropical rainforest, lake, field, desert or our guts. A high diversity of organisms ensures that each niche, or need, is fulfilled and gives back to the system. As such, an ecosystem is more resilient to short term environmental change and stresses, and therefore less susceptible to disease. Optimal climate is necessary for maintaining a healthy ecosystem.

 

The same is true for our guts.  To ensure optimal health, we need to nurture our gut microbiome by providing a favourable environment for the long-term (Xu and Knight 2015). In general, this means a whole foods diet including a diverse range of vegetables – including the pre-biotic containing ones such as Jerusalem Artichoke which help to provide the food for our microbes. The phytonutrients found in plants are irreplaceable and essential for good health – make sure you eat a high diversity of vegetables. Include some nuts and seeds, fish (for your omega 3 essential fatty acids) and whole grains and dairy. Limit red meat.

burger-1140824_1920A diet high in processed food is high in sugar, trans fats, saturated fat, additives and refined carbohydrates and is undeniably bad for your health, and your microbiome.  A bad diet can can drop your gut microbial diversity by 40%, which of course compromises your health and sets you up for disease.

Want to know what your gut is doing? It can be really useful if you have a chronic illness. I had mine done by a naturopathic doctor when I was diagnosed with Chronic Fatigue Syndrome.  It certainly helped me understand my health and take control of my health.  Though it seems like you need a referral by a doctor, which can be very difficult to get, visit www.mapmygut.com to find out what’s going on with you’re microbiome.

In the mean time, look after your microbiome!

Email caroline@flourishwellness.co.uk to book a FREE discovery session to talk about your health how diet and lifestyle changes can help.

Did you see my post about inflammation and your health? Have a read HERE.

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