Chronic Fatigue Syndrome (CFS), M.E. & Fibromyalgia
Every year in May we see ME and Fibromyalgia Awareness day – the aim of which is to highlight the devastation that this condition causes to 17-20 million people worldwide. Fibromyalgia is estimated to affect between3-6% of people internationally and 1.2-2.8 million people in the UK.
It’s clear Fibromyalgia and ME can cause a lot of devastation to so many people’s lives. And not only the devastation to their own lives but also the disbelief from people around them including their friends and families.
It’s not “just tiredness” – Invisible& fluctuating symptoms
Most of the symptoms of these conditions are a far cry from the common perception that ME/CFS is just about being tired! Part of the problem is that in many cases, the symptoms are invisible. Chronic pain, cognitive difficulties, post-exertional flu like malaise after minimal physical or cognitive activity. At my worst, something as small as holding a conversation for 10 minutes or eating a meal would leave me exhausted! Other symptoms include gastro-intestinal problems, dizziness, coordination difficulties, poor balance, poor body temperature regulation. Suffers also experience increased heart rate on sitting to standing. This means the heart is working much harder to keep the person upright due to a lack of energy being produced.
Another part of the problem is that they fluctuate. Therefore, people see you doing things that they’d expect you not to be able to do. But they then don’t witness the exacerbation of all your symptoms afterwards and the debilitating effect that this can have.
Lack of diagnostic tests
One of the the biggest problems in these conditions is the lack of a diagnostic test. There are lab tests that can show up biochemical dysregulation and I run many of these for my clients. This shows abnormalities with mitochondrial energy production, parasitic infections, gastrointestinal imbalances, and cortisol levels. This gives us a lot of information about how to work with the adrenals. We also get full thyroid panels, mycotoxin exposure etc. that can all be part of the picture.
But unfortunately, none of these tests are available through conventional medicine.
What is going on in the body?
So, what do we know about what’s going on inside the body in these conditions? Well, we know that there is dysfunction in the mitochondria in the cells that are responsible for producing energy. We also know that there is dysregulation of the HPA axis, and immune dysregulation. Nearly everyone I have encountered with these conditions has gastro- intestinal issues.
Is it physical or psychological?
Despite all the evidence from researchers, there is still much controversy about whether it is a physical condition or psychological. Unfortunately, research that points to it being psychological perpetuates the myth that this is only a psychological illness, leading to discrimination and prejudice towards people with these conditions, which they have to cope with on top of their symptoms and functional limitations. Suffice to say that, unfortunately there is still much misunderstanding about the symptoms, complexity and physical nature of the condition.
The link between SIBO and Fibromyalgia
For me, looking back at my medical records there were actually signs of something physical going on. I had delayed gut motility (delayed emptying from the stomach into the duodenum). I also had duodenitis (inflammation in my small intestine). This was discovered over 20 years ago but never mentioned to me. We now know that delayed gut motility is a major contributory factor to SIBO (small intestinal bacterial overgrowth), the cause of 60% of IBS! A recent study showed that 90% of people with Fibromyalgia have SIBO. SIBO is where bacteria have overgrown in the small intestines, producing endotoxins and nutritional deficiencies. I also had numerous blood tests showing raised levels of eosinophils and decreased white blood cell count, indicating some kind of immune dysregulation, again left unaddressed.
Piecing together the jigsaw
The bacteria overgrowing in SIBO can actually eat your nutrients as they start to eat your food before you can absorb it. It wasn’t until another practitioner suggested I get a full iron panel rather than the standard iron tests that I found I had iron deficiency.
The type of SIBO I had wasn’t even showing up on private lab tests as I had something called hydrogen sulphide SIBO. This has no definitive test at the moment, just signs from existing lab tests. And that particular type of bacteria can…. guess what? Damage the mitochondria in your cells that are crucial for energy production!
SIBO can also cause visceral hypersensitivity. This could explain why, if 90% of people with Fibromyalgia in one study were shown to have SIBO, they also had increased hypersensitivity to pain. Even after I trained and qualified as a naturopath, it took me a lot of continuing training to work out all of these pieces of the jigsaw. It was only last year that I found Lyme, candida and mould toxicity were also parts of my jigsaw.
Naturopathy and chronic illness
Naturopathy, looks at disease quite differently to conventional medicine. Disease is a process which establishes itself over a period of time. When I first had my case history taken by a naturopath, I was surprised to see that I hadn’t suddenly been struck down by the virus that appeared to have started my ME/CFS. In reality, there had been signs of dysregulation, albeit minor, from an early age that had all depleted my immune system, coupled with my poor nutrition, poor sleep, my Type A personality causing me to always try and be superwoman at work and outside of work, despite my body screaming at me that something was very wrong.
Naturopathy also looks at the body as a whole entity, not separating the body and the mind. ME/CFS has been cited to have numerous causes. A virus was the straw that broke the camel’s back for me – my immune system was depleted and I couldn’t fight it off. I suppressed my symptoms by trying to carry on being superwoman and by continuing to do all the things that had already depleted my immune system. For other people, it might be a traumatic event, an injury, an infection, childhood trauma, over-exercising or ongoing stress. This has led to much debate within the ME community as to whether someone is correctly diagnosed with ME if their ME does not start with a virus.
But to me this is missing the point. Heart attacks can be caused by several different causes – stress, physical blockages, the food we eat, lifestyle, etc. But despite the fact that there can be numerous causes of heart attacks, nobody disputes that they are a physical condition. Nor that the end result is the same or that any stress or lifestyle factors that led to its onset need addressing. The job of a naturopath is to work out the case history to assess how the body got to that position in the first place and start to unravel it. Then you can start giving the body what it needs to kickstart its own innate healing ability.
In 1996 I developed M.E. followed by Fibromyalgia a few years later. In my case, adverse childhood events led to an overproduction of stress hormones on an ongoing basis. Continual production of cortisol led to my immune system and my digestive system shutting down.
Extreme Dry skin
The first signs of something wrong were extreme dry skin. Unbeknown to me, this was a sign that my body was dehydrated. I had no clue until I became ill that I even needed to drink 4 pints of water a day to keep myself hydrated and that drinking tea and coffee was not the same thing.
My diet was poor, which would certainly have been affecting my microbiome. We now know that this complex community of microbes that lives inside us are so important for the health of our bodies and minds. Couple this with a digestive system that was not working effectively and I began to develop numerous food allergies and intolerances. Which, you cannot have without gut permeability where the lining of the gut becomes permeable, allowing partially undigested food into the blood stream that shouldn’t be in there! So, I wasn’t absorbing the nutrients from my food. At the same time my body was launching an attack on what I was eating, giving rise to inflammation.
Stress and cortisol levels
This contributed to further internal physical stress, which elevated my cortisol levels further. This gave rise to an overproduction of histamine. This resulted in histamine intolerance, which meant that I could no longer eat foods containing high levels of histamine without reacting. It was only after my training as a naturopath and further continuing professional development that I worked out that I had histamine intolerance.
Digestion and stomach acid
I was put on antacids due to gastrointestinal issues, which I later found out gave rise to further problems. Acid reflux can be caused by not enough stomach acid being produced as well as too much. When not enough acid is produced, this impairs the signal to the lower oesophageal sphincter to close and when this happens the acid can rise up into the oesophagus from the stomach.
Onset of SIBO
We need a certain amount of acid in our stomach to break down proteins and to kill any unbeneficial microbes that we might take in through what we eat and drink. So the antacids contributed to the onset of my SIBO, together with more nutritional deficiencies.
At the time of the onset of my ME/CFS I was working long hours, partying hard and not getting much sleep. A virus came along and tipped everything over. For others overtraining can be a contributory factor. The point is that we all have different reasons as to why we become ill, regardless of the illness and regardless of the causes. Either shortly before or shortly afterwards I also contracted Lyme, but my immune system couldn’t fight it.
The job of a good naturopath is to find the clues and provide education as to how to best support your body through diet, lifestyle, supplements and naturopathic techniques.
Using naturopathic techniques starting with ensuring the bowels are working correctly. Then the liver, working backwards to the lymph and then the cell.
So it’s about doing the right things at the right time in the right order. Before I started seeing a naturopath I thought I had tried everything.
Changing the stress response
For me, changing my stress response which has been hardwired since a child has been another big factor. Together with structural work through a chiropractor as my ribs were not expanding and allowing me to breathe in enough oxygen, in addition to the shallow breathing caused by stress. So, whilst I am not saying that naturopathy is a cure or a substitute for medical advice, for me it has been an invaluable piece of my health and wellbeing journey alongside the medical advice I have been given. If you do think you might be suffering with any of the symptoms, always speak to your GP.
What is becoming evident is that stress is a major factor in every chronic physical health condition and stress can come from a range of places, the foods we eat, the exercise we do, what we put on our skin, it isn’t just about being “stressed out” due to current or past events as we understand the term.
Taking responsibility for recovery
So, for all of you reading this who have ME/CFS or Fibromyalgia, I completely understand what you are going through. I have been virtually bedridden for 8 years with both conditions, with a battle over 2 decades to find the answers. Culminating in my own training as a naturopath and being able to get back to work. This is a world away from where I was. Being too ill to have a conversation for more than 10 minutes, losing the ability to read or having to crawl on my hands and knees to get from my bed to the toilet! So please don’t give up hope. I know what it’s like to feel like you have tried everything.
Taking responsibility for aiding my own healing instead of waiting for the magic answer was so empowering. Had I not done so, and learnt everything I have shared with you in this blog, I may still be bedridden with these conditions today.
What to remember
It took me many years to get as ill as I did, so expecting a miracle cure just wasn’t realistic. And, there was a lot of trying things out to see what worked and what didn’t. But, the main premise with naturopathy is to first do no harm. And all of the changes I made, whilst not a cure, were all part of supporting my health.