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.

Want to start feeling better right now? Check out my Reboot  I’ve packed all my best tips on how to get your health back on track in just 4 short weeks. This online package allows you to find your foundation of good health. It guides you through changes that will have long-lasting effects on your symptoms and overall health in a safe and manageable way.  It’s a great start towards taking control of your health and reaching goals!

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All the best,

Caroline

 

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Chronic Fatigue- diagnosis to remission

Sometimes I can’t quite believe that I was pretty much housebound for 18 months in my twenties. Other times it seems all too close for comfort. The lack of recognition and respect Chronic Fatigue Syndrome patients receive still astounds me.

For me, like many, it was a long road to a very unsatisfactory diagnosis. For over a decade I told GPs that I was exhausted and not able to keep up with my peers. I told them I felt unwell and that I was worried. I told them I was not depressed. I told them that I was sleeping 12hours a day and was still exhausted. I told them I had to rest for days after exerting myself and that I lacked concentration and motivation. At each and every appointment I was told that my symptoms were vague and non-specific and therefore there was nothing to be done. I was told I needed to socialise less (at a point during my degree that I was a hermit), to get more sleep (more than 12hrs a day?) and that I was probably depressed (maybe, but chicken or egg?).

And so I lived in this state of exhaustion. I resigned myself to it. I thought it was just  the way I am. But I could never fathom how people could just get up and do things, how they could achieve so much. Where did they get the energy? Why couldn’t I do everything? Why wasn’t I “normal”?

Things came to a head when I was writing up my PhD thesis. I’d moved to Costa Rica to write up (well, why not!?) and, within a week of being there, I contracted a really bad stomach virus. I didn’t eat anything apart from watery rice for two weeks. I lost a lot of weight and I simply never recovered my energy.

I was extremely ill. I couldn’t shuffle across the apartment without stopping to rest. I couldn’t stand in the kitchen long enough to boil the kettle. I couldn’t hold my arms above my head for long enough to wash my hair. I had to have a nap after a conversation. I had irritable bowel syndrome. I ached all over – in both muscles and joints. I couldn’t concentrate for more than a nano-second and my memory was atrocious. I was constantly hungry and loosing weight rapidly. One day the world went black and I temporarily lost my vision.

I went from doctor to doctor and had test after test. I gave countless vials of blood and saw a seemingly infinite array of “specialists”, but none could offer me any viable explanation. All told me I was “normal”.

I soon learned that being “normal” in the medical world simply means that the test needed to detect what is wrong hasn’t been discovered yet.  Unfortunately, it seems that most doctors tend to listen more to the lab data than to their patients. Either that or they are unwilling to collaborate and problem-solve with the patient.

I wrote my PhD thesis and planned my wedding – I’m not sure whether this was tenacity or stubbornness, maybe a bit of both. I knew that, like most, my PhD was a huge stressor, and had been for sometime. I knew that I wouldn’t start to get better until I could put it behind me. My decision to persevere and finish my thesis was met with a lot of eyebrow raises and head shaking, but I knew having it hanging over me would be worse in the long run. That was my decision.

Back in Australia, newly married and with my doctorate (cum laude) secured, I was unable to leave the house. My GP finally stuck a label on what I had: Chronic Fatigue Syndrome. She told me there was no cure and that I would likely have it for the rest of my life – that there was nothing I could do.

For me, that meant no career, no kids, virtually no social life and that my new husband would be my carer. Clearly something had to change.

I read and researched CFS, and a friend recommended a local naturopathic doctor. Finally someone who listened to me, who didn’t tell me I was imagining my symptoms or that I was depressed. He is ordered tests and diagnosed me with dysbiosis and intestinal permeability – things that many doctors still deny the existence of despite a wealth of evidence. Together we looked at my diet and lifestyle and I began to make changes. It was slow, and it was hard, but I stuck at it. I designed my own diet, one that suited my needs and took my various nutrient deficiencies into account.

Slowly, I began to get better.

I also took a long hard look at my life, and where, and to whom, I was loosing energy. I realised I wasn’t good at looking after myself and I usually put myself last.

What’s most interesting is that my pre-CFS diet wasn’t “bad”. I’ve always eaten vegetables, nuts and pulses. I hardly ever ate fast or processed foods. I always cooked from scratch and kept myself hydrated. Clearly, a “normal” diet was not ideal for my body and was not going to promote healing and health.

I learned that doctors don’t always know best. That you are the expert of your experience and no-one should try to diminish it. Once you have found someone who will work with you, instead of dictating to you, you’re onto a good thing.

Had I not been told I was “normal” 10 years earlier, maybe the autoimmune storm that seems to be my body’s default status now wouldn’t be raging quite so hard.

After a post-doc in the USA, having a couple of kids and caring for my husband through cancer, I am now help others take control of their health as a Health and Nutrition Coach. I help people with chronic inflammation reduce and eliminate symptoms associated with thyroid disease, type 2 diabetes, inflammatory bowel disease, irritable bowel syndrome and CFS, and weight management through cancer. I always encourage people to discuss our work with their doctor. But it’s amazing how many doctors refuse to listen and instead belittle the huge steps these people are making in taking control of their health.C_14

Symptoms of Hypothyroidism

Sleep has always been an important part of my life, and I’ve been able to sleep in some pretty spectacular situations – from a sun-warmed stone on a mountain top to the bouncing bow of a boat in the cold, driving rain. In hindsight, my ability  – or need- to nod off was probably a symptom of my thyroid disease.

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Recently I have met a lot of people with hypothyroidism, or suspect they have it despite their blood work being normal. Many of these people have a long list of symptoms that they have never associated with their thyroid condition and have lived with them for years. They are are used to feeling less than optimal and easily put these, often non-specific, symptoms down to age or lack of sleep.

But what if you could feel better? What if you could get rid of those aches and pains?  Today I want to give you a more comprehensive list (but by no means exhaustive) of the symptoms you may experience with hypothyroidism – there may be more than you may realise.

Chronic symptoms of hypothyroidism can be reduced or eliminated through changes in eating habits and lifestyle.

I’m walking proof of this. I have gone from being bedridden, aching all over and barely able to move to, on the whole, being fully functional!  I still get the odd flare-up, but there is usually a clear cause, such as over working, catching a horrible bug or letting my sugar consumption creep up. When this happens I know I have to go back to basics and “Reboot“, to get back on track. And it works.

If you have hypothyroidism, particularly Hashimoto’s thyroiditis, and suffer from chronic symptoms it’s important you know that they are an indication that your body is not functioning at it’s best. You have those symptoms for a reason.

Masking symptoms with pain killers and supplements without addressing the cause can compromise your long-term health.

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If you have these symptoms please know that you can feel better. It may take time. It may take effort, but it is possible! With no help or guidance from medical doctors as to how to manage my diagnoses (first CFS and then Hashimoto’s thyroiditis), just a prescription for Thyroxine, for a long time I thought I was going to be virtually house-bound for the rest of my life. Thank goodness I took control of my health and made the necessary changes to feel better.

I read and researched. I used my background in Immunology to understand the science behind my disease, then I listened to my body and used my knowledge of nutrition to heal and get as healthy as possible.

Here is a list of some of the symptoms you may have, even if you’re taking thyroxine. How many of these do you have?

  • Palpitations
  • Fatigue
  • Slow speech
  • Slow movements
  • Brain fog/confusion/forgetfulness
  • Liver tenderness
  • Insomnia (yes, even with hypothyroidism)
  • Hypoglycaemia
  • Muscle and joint stiffness
  • Fibromyalgia
  • Pins and needles
  • Puffy, itchy, scratchy eyes
  • Puffy hands and feet
  • Cold extremities/ low basal body temperature
  • Irritable Bowel Syndrome (IBS)
  • Tinnitus/hearing problems
  • Restless legs
  • Hair loss
  • Eczema/ dry skin
  • Migraines
  • Blurred vision
  • Anxiety
  • Mood swings
  • Inability to cope with stress

I had more than 75% of these symptoms and I was misdiagnosed for 5 years. Now I live largely symptom free!

Get in touch to hear how we can work together to improve your health and get rid of your symptoms.

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If you have some of these symptoms and haven’t got a hypothyroidism diagnosis, then it’s advisable to talk to your doctor. These symptoms don’t mean you DO have hypothyroidism and are not meant for diagnostic purposes. If you are at all concerned about your health, then make an appointment to see your doctor.

I am happy to help you make positive dietary and lifestyle changes alongside your medical doctor.

Take control of your health and feel better!

With warmth,

Caroline x

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My Thyroid Story – Hashimoto’s Thyroiditis

We all have a story – something that has led us to where we are today. My health, and that of those around me, has repeatedly shifted the course of my life, changed my perspective and led to some serious personal development.

I have Hashimoto’s thyroiditis – an autoimmune disease that causes hypothyroidism.

This diagnosis came after I had been gluten-free for about 6 months, having put the family on a gluten-free diet because of symptoms my son had (dry skin patches, distended stomach etc). One day I came across a lonely packet of normal (full of gluten) biscuits. Being human, I couldn’t resist and I tucked into them. The next day my thyroid was the size of a tennis ball (or there abouts!).

Aside from “Gerty the Goiter” I also had or developed these lovely symptoms:

  • Brain fog
  • Fatigue
  • Muscle pain
  • Joint aches and pains
  • Muscle weakness
  • Weight loss
  • Headaches
  • Hair loss
  • Carpel tunnel syndrome

A blood test showed that my Thyroid Stimulatory Hormone (TSH) was ridiculously high at 96 (normal levels are approximately 4). My TSH was so wildly out of range because my immune system had been attacking my thyroid gland and preventing it from producing adequate amounts of the hormone Thyroxine (T4). As a result my pituitary gland was churning out TSH to tell my thyroid to produce more T4, but to no avail. I also tested positive for thyroid auto-antibodies.

Hence, I was diagnosed with Hashimoto’s Thyroiditis. Finally I had a reason for feeling tired and cold my WHOLE life (or at least since I was 15).

So, I was put on Thyroxine (replacement T4 hormone).

It occurred to me prior to taking it that Thyroxine stimulates metabolism. I was already struggling to maintain my body weight and, sure enough, as soon as I took the Thyroxine my body crashed. I became bedridden within 24hours and all my symptoms had worsened – it felt like my Chronic Fatigue Syndrome (CFS) days.

At the time I was caring for our two kids and my husband who had Cancer (read about our Cancer story here), so I simply couldn’t afford to be ill.

I had to take control of my health immediately. I did so by radically, but safely, adjusting my diet and lifestyle. Within two weeks I had more energy than I had had for years and my thyroid/CFS symptoms disappeared.

Looking back, I now know I was right to go to the doctor as a teenager with fatigue, as a student with exhaustion, anxiety and muscle aches and as a post graduate with persistent colds and lethargy. Each and every time I was dismissed as needing more sleep or for just being “a student”. In reality my body was struggling to deal with an autoimmune disease.

I don’t blame the doctors for this. Yes, it’s frustrating, but really it is a reminder that we need to be proactive and tenacious about our health – reconnect with our body, listen when something is wrong and then take action.

I’m being proactive about my health by concentrating on reducing the effects of this incurable disease so that I stay as healthy as possible for as long as possible!

Do you have thyroid issues? What are your symptoms and how do you keep them under control?

 

4 signs your immune system is attacking you (and what you can do about it)

Autoimmune and inflammatory diseases  are becoming more prevalent and include Hashimoto’s Thyroiditis, Grave’s disease, Celiac’s disease, type 2 diabetes, arthritis, eczema, asthma, irritable bowl syndrome and Crohn’s Disease.

Most of us know someone with one of these, and some of us are unlucky enough to have one ourselves.

These diseases occur when our immune system goes wrong and attacks parts of our body, like the thyroid in my case, and/or when our immune system is constantly triggered into activation – Chronic Inflammation.

If having one of those diseases wasn’t bad enough, chronic inflammation also increases the risk of heart disease and stroke (Kristensen et al. 2013) and is linked with 25% of cancers (Eiró and Vizoso 2012). Click here to read my about experience as a carer for Cancer.

It’s really important to be aware of inflammation and to keep it as low as possible.

4 signs of chronic inflammation:

  1. You’ve been diagnosed with an autoimmune or inflammatory disease
  2. Tiredness and fatigue
  3. Muscle and joint aches and pains
  4. Strange things are happening with your digestion – e.g. you feel you have developed food intolerances, you have lost or gained weight or you are bloated.

(the last 3 points are general signs that something might be wrong and may need further exploration in collaboration with your doctor).

How to reduce inflammation

The best way to ensure we don’t put our body through any unnecessary inflammation is to avoid situations that tend to provoke it. Unfortunately, usually the foods we eat and the lifestyles we lead tend to promote chronic inflammation.

Here are 5 things to cut out today:

  1. Refined sugar and starches – These trigger the release of inflammatory messengers (cytokines) and are linked with increased intestinal permeability. Want to quit sugar? Contact me HERE.
  2. Alcohol (see my post “Why I’m going Dry for January”)
  3. Red meat – the NHS guidelines suggest a daily intake of 70g/day. See what Cancer Research UK has to say about it HERE.
  4. Stress – does what it says on the tin. Our bodies weren’t designed to be in constant fight or flight mode. Take time to relax, be mindful and look after your body.
  5. Chemical irritants – Get rid of unnecessary chemicals in and around your home! Help your family and the environment at the same time. Hints and tips for going eco-friendly coming soon!

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Your body and lifestyle are unique and so your inflammation triggers will be.  

Get in touch to work out what yours are and start feeling well again! 

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