May 12th is ME and Fibromyalgia Awareness Day. Across the world today a campaign called #millionsmissing will be taking place. Events have been arranged in cities worldwide where people with ME’s empty pairs of shoes are laid out. The shoes are labelled with a message about how they are missing from their lives due to ME. The aim is to highlight the devastation that this condition causes to 17-20 million people worldwide. As for Fibromyalgia, it affects between 1.2-2.8 million people in the UK and 3-6% internationally.
It’s clear Fibromyalgia and ME can cause so much devastation to so many people’s lives. So, why is the medical profession still devoid of answers? And why do people with these conditions struggle to be understood by professionals that are supposed to support them? People with these conditions also deal with in disbelief from their friends and families?
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.
These are just some of the symptoms of these conditions and are a far cry from the common perception that ME/CFS is about being tired! 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. However, they then don’t witness the exacerbation of all your symptoms afterwards and the debilitating effect that this can have.
I think the biggest problem is the apparent lack of a diagnostic test. There are lab tests (I run many of these for my clients) that can show up biochemical dysregulation. 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, heavy metal toxicity, mycotoxin exposure etc. that can all result in ME/CFS.
But none of these tests are available through conventional medicine. So is it that there is no test, or is it that when someone’s blood panel comes back as “normal” they simply aren’t looking for the right markers that would indicate biochemical dysregulation?
Physiology of ME/CFS & Fibromyalgia
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. Also, that people experience extensive inflammation and the body’s drainage systems are not working effectively. Nearly everyone I have encountered with these conditions has gastro- intestinal issues.
Is it physical or psychological?
Despite all of this evidence from researchers, particularly with ME/CFS, there is still much controversy about whether it is a physical condition. The aim of this blog is not to get into the politics of why this controversy exists and is perpetuated. Suffice to say that, amidst clear research showing physical signs of biochemical dysregulation, it still exists. One can only postulate as to the secondary gain that could be had by the powers that be in continuing to perpetuate this.
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 discovered over 20 years ago but never mentioned to me. We now know that delayed gut motility is a major contributory factor to SIBO, 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.
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 bacteria overgrowing in SIBO can actually eat your nutrients as they start to eat your food before you can absorb it.
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.
Naturopathy with chronic illness
So how can naturopathy help ME/CFS and Fibromyalgia? Well, firstly, 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.
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. For other people, it might be a traumatic event, an injury, an infection, childhood trauma, 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.
I developed M.E. back in 1996, 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.
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.
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.
I was put on antacids due to gastrointestinal issues, which I later found out gave rise to further problems. Acid reflux is often caused by not enough stomach acid being produced. This causes the lower oesophageal sphincter to become weak and when this happens the acid can rise up into the oesophagus from the stomach.
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.
The job of a good naturopath is to find the clues. Help the client to rehydrate effectively, improve digestion, repair the gut lining, nerve damage. I also use food and supplements to repair any damage to the cells or mitochondria. Finally, it is important to deal with any parasitic infections, bacterial or fungal overgrowth.
Detoxification is a huge part of the process. Using naturopathic techniques to open up the body’s routes of elimination, starting with ensuring the bowels are working correctly. Then the liver, working backwards to the lymph and then the cell. I know people who have had lymph drainage or massages and said it has made them worse. Why? Because if you release lymph before you improve drainage and detoxification pathways, the toxins released from lymph cannot exit the body effectively.
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 – homeopathy, reflexology, numerous nutritionists, osteopathy, the list was endless. But this opening up of the detoxification pathways in the right order was a big part of the jigsaw.
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. So, whilst I am not saying that naturopathy is the whole answer, it was and continues to be a major part of it.
There’s no magic pill 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 lead me to a place where I could get back to work. So please don’t give up hope. Please don’t wait for the magic pill to come along that will cure everything. I know what it’s like to feel like you have tried everything.
Taking responsibility for 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 would still be bedridden with these conditions today. I am not saying that implementing the naturopathic approach was easy or that it can produce miraculous results over night.
Point 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 the nutritional changes, supplements, hydration and detoxification techniques I tried did enable my body to kickstart its own innate healing ability.
I am now at a point where I am working as a naturopath, with 2 other part-time jobs as well! 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!
If you want to find out more about how naturopathy can help ME/CFS or Fibromyalgia, please contact me to book a free 15 minute chat.