The Hormone ConnectionThe clue may be in the fact that women are more predisposed towards the ‘condition’, which is characterised by widespread pain and fatigue. It doesn’t take a rocket scientist to pick up on the scent of hormones in this puzzle. So why is the wool is being pulled over our eyes, despite this obvious pathway to explore? Without wanting to be too presumptuous, I imagine that a cheap answer to a widespread epidemic is to give it a fancy name. A name that will, perhaps, blind us with its science. However, considerable research and money has gone into FM research so surely it cannot be that easy to cover up? I was personally diagnosed with FM about 15 years ago, through my initial visits to a chiropractic academy in London. At the time, I was suffering from intense electric shock-like pains in my hips. During an assessment, the word Fibromyalgia was mentioned several times. It terrified me as it sounded like a mysterious disease. After I was officially diagnosed by rheumatology in hospital, I continued to live for many years in confusion and fear of what it was and how I had got it. Surprisingly, most of us weren’t internet-savvy back then, and I reckon the medical profession preferred it that way: no questions asked.
Associated Conditions.To my bemusement, a diagnosis of Elhers Danlos Syndrome ran simultaneously. I found it hard to imagine I had both of these weird diseases, and still no explanations were forthcoming. As a consequence, I lived in my own world of suffering with pain, fatigue, confusion and a collection of strange symptoms related to these conditions. This world became a double life. I kept the problems to myself. Although I was legitimately diagnosed, I had been thrown on the scrapheap as far as my doctors were concerned, and left to rot. This left me with the feeling that it was all in my head. Fast forward 15 years and a further diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS). My ‘treatment’ appears to have worsened. Despite going through all the GPs in my practice, I am met with a suspicious eye when talking about my health. The bombshell was my Lyme Disease diagnosis. As has been the experience of many other patients diagnosed outside the UK, my diagnosis has been treated like a forged document rather than a legitimate (and expensive) lab report. Back to hormones, Fibromyalgia… and connecting the dots… Dr John C Lowe of the American Academy of Pain Management and director of research at the Fibromyalgia Research Foundation wrote in 2007 that there is irrefutable evidence that FM is related to thyroid hormone deficiency.
“Fibromyalgia patients’ symptoms are exactly the same as those of patients who have hypothyroidism and the ‘peripheral’ form of thyroid hormone resistance. Many medical writers have reported this.”The research into FM dates back as far as 40 years, according to Dr Lowe, and researchers have consistently claimed to not understand the causative process behind it.
“These researchers often make these statements in journals, at professional conferences, and at public presentations. Each time they do, they ignore a line of evidence that points directly – and conclusively – to the main underlying cause of fibromyalgia. That cause is too little thyroid hormone regulation of patients’ bodies. The deficient thyroid hormone regulation results from two conditions. First is an undiagnosed or undertreated deficiency of thyroid hormone. Second is the resistance of patients’ tissues to thyroid hormone. ‘Resistance’ means that patients’ tissues need higher than ‘normal’ amounts of thyroid hormone to maintain normal metabolism. Several factors in addition to deficient thyroid hormone regulation complicate many patients’ conditions. The four most common are nutritional deficiencies, an unwholesome diet, poor physical fitness, and drugs that slow metabolism. Some patients also have deficiencies or imbalances of other hormones, such as cortisol, oestrogen, and progesterone.”He says that allopathic medical treatments seem to only mask symptoms and many patients stop taking them as they can frequently make them feel worse. The NHS recommends a list of treatments such as: Painkillers, anti-depressants, sleeping tablets, muscle relaxants, anti-convulsants and anti-psychotics. The missing link with treating FM, according to Dr Lowe in his interview with Dr Mercola in 2013, is the use of thyroid hormone:
“A one-line summary of Dr Lowe’s research would be that thyroid hormone is the missing ingredient in the treatment of fibromyalgia that is nearly universally overlooked.”http://www.thyroiduk.org.uk/tuk/related_conditions/Fibromyalgia-medical-mystery- solved.html
Epigenetics and the TriggerLooking closer at a more recent report from Simmaron Research opens a new can of worms, connecting more dots with epigenetics and in particular hypomethylation. It links this common genetic problem with what they have phrased a “system reset”. This reset is represented in the form of a trigger, usually a pathogenic infection, which causes genetic changes in the patient’s body, resulting in hypomethylation further down the road to chronic disease. In particular, studies have linked the herpes virus to this trigger, and one that frequently gets thrown around the CFS/ME and FM scene is EBV. Hypomethylation seems to occur within FM cases, more so than in CFS/ME. Patrick O. McGowan, PhD, noted that:
“A similar analysis of whole blood (not PBMCs) in Fibromyalgia suggested a very different pattern of epigenetic modifications existed in ME/CFS and FM. Methylation appears to be primarily affecting structural nervous system development and neuronal genes in FM, and immune and metabolic genes in ME/CFS.”So what comes first, Fibromyalgia, hypo-methylation or thyroid hormone deficiency? Well, it came as no surprise that genetic testing showed I have many mutations that make me more likely to suffer from hypo-methylation. However, there can be many triggers to this hypo-methylation and having genetic SNPs doesn’t mean one is destined to suffer particular ailments they may be genetically predisposed towards. On the contrary, epigenetics shows that it is the environmental triggers that have the greatest impact on our health. Triggers which are considered environmental can be, as the Simmaron report suggests, a herpes-type disease, poor nutrition and/or toxins. I want to highlight the toxins, namely the ones known as endocrine disruptors. These are absolutely everywhere in our modern western society.
Environmental ToxinsThese endocrine disruptors appear to be having a disastrous effect on the thyroid and, in turn, playing a major role in our overall health. One result is a proliferation of these modern day diseases, as discussed here, but also influencing the growth in cancers and many other devastating illnesses. The question on everyone’s lips is: what can we do about this mess? Well, a recent Fibromyalgia treatment success story has come to light, one in which an English woman successfully used a new immune therapy called intravenous immunoglobulin (IVIg). This therapy is used for people with weakened immune systems, and is usually reserved for autoimmune conditions. In this successful clinical trial, the woman may be considered fortunate as it was gained through a German Life Science company, Berlinecures, that specialises in the research and testing of antibodies that it believes may play a role autoimmune cardiovascular diseases. The fact that the woman responded positively to immunoglobulin therapy and that abnormal levels of antibodies were found in blood samples suggests a link between immune system damage and Fibromyalgia, but she was refused this treatment by the NHS due to the NICE guidelines not recommending it. Perhaps the biggest ‘elephant in the room’ is that the woman’s health problems started suddenly after she received the HPV vaccination. That is another immune dis-regulation related topic, closely linked to these ‘mysterious’ diseases, which deserves a post of its own. For now, let’s see if we can pull together the issues discussed. Ultimately, it would appear to be an epigenetics topic. This means all the influencing factors involved in an eventual Fibromyalgia diagnosis (similarly with ME and CFS) are environmental factors – pathogens, toxins and pollutants. The sheer extent of the damage done by these unavoidable influences would appear to be underestimated.
Opportunistic PathogensA few years ago, the magnitude of damage from environmental influences dawned on me. I learned that the best way to improve my health was by addressing these influences. I had to start with the pathogens. Given an unhealthy terrain, I had lost my grip on my body and was overrun with disease and, consequently, I was in despair. With the benefit of hindsight, I would have done it differently. I was desperate for professional help, as well as struggling with neurological problems – such as severe fatigue, depression and brain fog – which made doing my research was a challenge. This is a typical trait of a chronically ill person: i.e. being vulnerable and desperate for help and willing to try anything that is suggested. In my case, it was a high dose of doxycycline (a common first choice in Lyme antibiotic therapy). The doxy was a dangerous choice for me, and the Herxiemer reaction was serious as I now realise I was likely suffering an acute mast cell (MCAS) reaction to the die-off of bacteria and protozoans in my body. This was coupled with an inability to process these ‘biotoxins’ because of genetic problems. In other words, the inflammatory response was far too extreme for me. I also suffered severe burns because of the inevitable photo-sensitivity reaction (Doxycycline is a known phototoxic antibiotic) when prescribed during one of the hottest summers in British history. I burned in the shade and the histamine response was unbearable. I was, understandably, in tremendous shock. With no support network or prior warning, I suffered unimaginably. The damage done to my gastro-intestinal health will probably never be undone. Consequently, my illness became more serious as my body weakened and I became overrun with various fungus infections and mycotoxins, finally resulting in Biotoxin Illness and an advanced case of Multiple Antibiotic Resistant Staphylococcus (MARCoNS). I did not understand the process I was going through. Had I understood, I would have taken anti-inflammatories at the very least, and certainly would not have taken the double dose of Doxy that the physician prescribed me.
Intracranial HypertensionAnother study from Belgium in January 2018 examined elevated pressure in the brain (intracranial hypertension). On an informative chronic disease blogspot Health Rising, it was suggested that FM patients’ brains and spinal cords are under too much pressure:
“To date, the pathophysiology of FM has not been clearly determined. We aimed to examine the condition from another perspective. We propose that chronic idiopathic Cerebral Spinal Fluid dis-regulation underlies both FM and the clinical entity of STC.” https://www.sciencedirect.com/science/article/pii/S0306987717306266?via%3Dihub
But what is causing the IIH?Could it be inflammation caused by infections and, more to the point, the biofilm that is known to be the extra cellular matrix (ECM) which surrounds and houses these infections? When I reduce this biofilm matrix, which is commonly associated with Lyme Disease and its many complex chronic infections, the pressure in my head, the ringing in my ears and the dysautonomia symptoms associated with the conditions mentioned in this blog seem to reduce in severity. In fact, one of the best biofilm ‘busters’ I have used in my treatment of Lyme and Co. is Guaifenesin, which was once studied as an alternative treatment for FM.
Prime CandidateSadly, I appear to be a living example of the complex pathway from which Fibromyalgia can emerge. In my case, this pathway includes a weakened immune system, partly caused by methylation polymorphisms (and also DAO and HLA SNPs which cause susceptibility to infection and dysfunctioning immunity); the pathogenic ‘trigger’ infections, such as EBV early on and later Lyme (and its many co-infections); all the typical vaccinations and endocrine disruptors (BPA in plastics, pesticides, processed foods, alcohol to name a few), heavy metals and air pollution. Fast forward to current toxic exposure, and the scene of the crime is even more devastating as an unprecedented exposure to Radio Frequency Radiation (RFR) is said to be wreaking havoc on our health. In a 2010 report re ‘biological effects from exposure to electromagnetic radiation emitted by cell tower base stations and other antenna arrays’, concern was voiced for our long-term health:
“There are many important gaps in the RFR research. The majority of the studies on RFR have been conducted with short-term exposures, i.e., a few minutes to several hours. Little is known about the effects of long-term exposure such as would be experienced by people living near telecommunications installations, especially with exposures spanning months or years.”With the onset of 4G since the report was written in 2010, and the sinister promise of so-called smart meters, the ramping up of this kind of radiation is no doubt having negative side effects on our health. Generally, we seem to be living in blissful ignorance, despite having all imaginable knowledge at our fingertips. This ignorance changes when people become sick, and start asking questions – exactly what many of us are doing now. Many ways exist to improve our health, and Fibromyalgia is one of the conditions that can be helped. In fact, I barely suffer with Fibro-type symptoms now, although my health has deteriorated in some ways. These include: long term damage to my Autonomic Nervous System, resulting in POTS, thyroid dysfunction. Ulcerative colitis and severe fatigue. However, pain no longer dominates my life. Whatever the causes, triggers and influences that lead to the diagnosis of FM, it clearly is a ‘real’ disease, and one that is unsurprising, considering our modern lifestyles. I hope that the diagnostic criteria and possible treatments will improve in the UK. For now, my experience tells me to stick with Functional Medicine, and FM practitioners. At present, the help from mainstream medical practices seems scarce at best and negligent at worse.
Inhumane Diagnosis and Negligent TreatmentConditions such as nutritional deficiencies, thyroid hormone deficiency and hypothyroidism, methylation problems, mast cell activation disorder and other related genetic SNPs, intracranial hypo-tension and even Lyme Disease, are all conditions that should be ruled out before giving a set of symptoms a vague name and leaving the patient to live a half life while degenerating slowly. In my opinion, this is a cruel and inhumane medical practice… but clearly one designed to save money. Further Reading: Health Rising: https://www.healthrising.org/ Elhers Danlos Syndrome and Mast Cell Activation Disorder: https://www.ehlers-danlos.com/pdf/2017-Criteria-Nonexpert-PDFs/Mast-Cell-Disorders-in-EDS-Nonexpert-S.pdf Mast Cell Related Conditions: http://www.mastcellaware.com/mast-cells/related-conditions.html
Not being one to partake in recreational drugs, but following a bicycle indecent recently, I was struggling to cope with the pain despite being prescribed a powerful anti-inflammatory and paracetamol every four hours.