#Fibromyalgia: the 21st century cover up?

Considering its literal description – ‘Tissue Pain’, it’s beyond me just how the medical profession is still getting away with it, but Fibromyalgia (FM) is the general label that is being given to so many people, predominantly women, who have a set of symptoms that their GP can’t or won’t investigate

The Hormone Connection.

The clue here may well be in the fact that women are more predisposed towards the ‘condition’, characterised by widespread pain and fatigue. It does not take a rocket scientist to to pick up on the scent of hormones in this puzzle, so why is it that the wool is being pulled over our eyes despite this obvious pathway to explore? Without wanting to be too presumptuous, I am imagining a cheap answer to a widespread epidemic is to give it a fancy name, one which will perhaps blind us with its science. But a lot of research and money has gone into FM research so surely it cannot be that easy to cover up? I myself was diagnosed with FM about 15 years ago, via my initial visits to a Chiropractic Academy in London. At the time I was suffering with intense electric shock like pains in my hips. During an assessment the word Fibromyalgia was mentioned several times and it terrified me, 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 where I had gotten it from. Surprisingly enough most of us were not at all internet savvy back then and I am sure the medical profession preferred it that way: no questions asked.

Associated Conditions.

A diagnosis of Elhers Danlos Syndrome ran simultaneously and of course this made me even more bemused, I found it hard to imagine I had both of these weird diseases, and still no explanations were given. As a consequence, I lived in my own world suffering with pain, fatigue, confusion and a collection of strange symptoms related to these conditions and this world became a double life – I kept to myself the problems, as although i was legitimately diagnosed, I may as well been thrown on the scrapheap as far as my Drs were concerned, and left to rot. Leaving 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 gotten worse as despite going through all the GP’s in my practice, I am met with a suspicious eye when talking about my health, the bombshell being my Lyme Disease diagnosis – as like many of us diagnosed outside of the UK, it has been treated like a forged document rather than a legitimate (and expensive) diagnostic 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 way back 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’

But the research into FM goes back as far as forty 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 often 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. But 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 Trigger.

Looking closer at more recent report from Simmaron Research opens up a whole new can of worms which connects more dots with epigenetics and in particular Hypomethylation, and 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 patients body resulting in Hypomethylation further down the line of the road to chronic disease. In particular studies have been made linking the herpes virus’s to this trigger, and one that often 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 to learn through genetic testing that I have many mutations which can make me more likely to suffer with hypo-methylation, but there can be many triggers to this hypo-methylation and having genetic SNP’s does not mean one is destined to suffer with particular ailments they may be genetically predisposed towards. On the contrary, what epigenetics shows us is that its the environmental triggers that have most of the 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. But it is toxins I wanted to highlight, namely the ones known as Endocrine Disruptors, which it turns out are absolutely everywhere in our modern western society.

Environmental Toxins.

These Endocrine Disruptors appear to be having a disastrous effect on the thyroid, and in turn playing a major role in our overall health resulting in so many of these modern day diseases such as discussed here, but also influencing the proliferation of cancers and many other devastating illnesses we are plagued with. The question on everyone’s lips is of course, what in Gods name can we do about this mess? Well a recent Fibromyalgia treatment success story has come to light, one in which an English woman successfully utilized a new immune therapy called intravenous immunoglobulin (IVIg). This therapy is used for people with weakened immune systems, and usually reserved for autoimmune conditions. The success of this trial (the woman may be considered fortunate in that her mother managed to get her daughter involved in a clinical trials through a German Life Science company Berlinecures, that specialises in the research and testing of antibodies that it believes 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 here is that fact that this woman’s health problems started very suddenly after receiving her HPV vaccination, and THAT is a whole other immune dis-regulation related topic, closely linked to these ‘mysterious’ diseases, which deserves another post all of its own, for now lets see if we can pull together these issues discussed. Ultimately it would appear to be an Epigenetics topic, meaning all of these influences that are the factors involved in the culmination of a Fibromyalgia diagnosis (similarly with ME and CFS) are environmental factors – pathogens, toxins and pollutants and the sheer extent of the damage done by these unavoidable influences it would seem, has not quite been comprehended.

Opportunistic Pathogens.

It wasn’t until a few years ago did it begin to dawn on me the magnitude of damage done by all of these environmental influences, and I learned before too long that the best way to improve my health was by addressing all of the above, but I had to start with the pathogens, as given an unhealthy terrain, I had lost my grip on my body and was overrun with disease and consequently in despair. If I knew than what I know now, I would have done it very differently, but having been desperate for professional help as well as struggling with neurological problems such as severe fatigue, depression and brain fog, researching was a challenge. This of course is a very sad and common trait of a chronically ill person; we are very vulnerable and desperate for someone to help and so often will do anything we are told to try. 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 very serious as it is now apparent that I was likely suffering an acute mast cell (MCAS) reaction to the die off of bacteria’s and protozoans in my body and coupled with an inability to process these ‘biotoxins’ due to genetic problems. In other words the inflammatory response was far too extreme for me. I also suffered severe burns due to 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 and with no support network or warning, I suffered unimaginably. The damage done to my gastro-intestinal health will probably never be undone, consequently my illness became a lot more serious as my body weakened and I became overrun with various fungus infections and mycotoxins and finally resulting in Biotoxin Illness and a very advanced case of Multiple Antibiotic Resistant Staphylococcus (MARCoNS). I did not understand the process I was going through, had I done I would have taken anti-inflammatories at the very least, and certainly would not have taken the double dose of Doxy that the physician had prescribed me.

Intracranial Hypertension.

Another study from Belgium in January 2018 on elevated pressure in the brain (Intracranial Hypertension) and examined in the very informative and up to date chronic disease blogspot Health Rising, believes that FM patent’s brains and spinal cord 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 here in this blog seem to reduce in severity, in fact one of the best biofilm ‘busters’ I have utilised in my treatment of Lyme and Co is Guaifenesin which was once studied as an alternative treatment for FM.

Prime Candidate.

Sadly I appear to be a living example of the complex pathway that Fibromyalgia can often emerge from; a weakened immune system partly due to methylation polymorphisms (and also DAO and HLA SNP’s which furthermore cause susceptibility to infection and dysfunctioning immunity), the pathogenic ‘trigger’ infections such as early on EBV, later Lyme (and its many co-infections) and all the typical vaccinations, 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 this report published in 2010 titled; Biological effects from exposure to electromagnetic radiation emitted by cell tower base stations and other antenna arrays, there is certain concern 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. But we seem to be living in blissful ignorance for the most part, despite having access to all the knowledge imaginable at our fingertips, that is until we get sick, and start to ask questions which is exactly what many of us are doing now. There are of course many ways to improve our health, and Fibromyalgia is one of the conditions that can be helped. In fact I suffer with very little Fibro type symptoms now, although my health has deteriorated in some ways (long term damage to my Autonomic Nervous System resulting in POTS. Thyroid Dysfunction, Ulcerative Colitis and often very severe fatigue) – pain no longer dominates my life. Whatever the causes, triggers and influences that culminate to the diagnosis of FM, it clearly is a ‘real’ disease, and one that is not surprising considering the myriad of possibilities in our modern lifestyles, I hope that the diagnostic criteria and possible treatments may improve in the UK, but for now my experience tells me to stick with Functional Medicine, and FM practitioners, as the help from mainstream medical practices within the UK at best seems very scarce, negligent at worse.

My point is that these aforementioned conditions such as Nutritional Deficiencies, Thyroid Hormone deficiency and Hypothyroidism. Methylation problems, Mast Cell Activation Disorder and other related genetic SNP’s, Intracranial Hypo-tension and even Lyme Disease are all conditions that could and should be ruled out before giving a set of symptoms a very vague name and leaving us to live a half life whilst degenerating slowly, is in my opinion, 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

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