Fibromyalgia in review

Last night, I watched a webinar replay from the Fascia and Chronic Pain Rescue Summit presented by Dr Roger Murphree that was a really good overview of fibromyalgia and the link with central sensitisation and fascia pain. It’s still available online if you want to sign up (basic access to the summit is free and the speakers change every day).

It pretty much condensed a lot of what I’ve come to learn about fibromyalgia across all the years of having it, plus so many posts shared on here, into one extremely straightforward presentation with visual aids, which is always my preference for taking information in.

I just want to quickly capitalise on my own moment of clarity to summarise some of the key points, with the benefit of acting as a tick-list of factors for myself or anyone else to make sure each point is being addressed in a healing protocol.

Rather than feeling overwhelmed by all the information in one place, it has really helped me to appreciate how far we have all come in our understanding of fibromyalgia. My own sense of overwhelm so often stems from the fact I have been dealing with this for so long now (16 years) and those terribly desperate feelings of “too much going on” and not knowing how to handle any of it is largely a historic feeling remembered from back when it all started and I was completely alone and in the dark.

Back then there was very little known about it, no doctors had really heard of it, there were no functional doctors helping you through, the internet was very new and there was very little information to be had, plus you got used to people rolling their eyes or not believing you were ill when you told them. Anyone who thought they knew about it would just shrug and tell you it was a life sentence but now there are so many inroads to managing or even reversing the condition and these bullet points may help you gain a sense of clarity, just as it has helped me to write them out.

What follows is a framework that combines some of last night’s presentation with my own knowledge (and experience) and a few links I can recommend for further information. It may also be of help to anyone trying to summarise the widespread effects of the condition to other people in their lives since I know this kind of information would have been a godsend to me in the earlier stages when I first tried to explain the extent of my symptoms to anyone else.

  • Fibromyalgia is a pain condition lasting at least 3 months at a similar level spread out over numerous parts of the body, where there are no other health conditions that explain those symptoms (although there are often overlaps).
  • It classically involves fatigue, waking unrefreshed and cognitive (memory or thought) problems such as brain fog (“fibromyalgia fog”) and depression.
  • It is similar to chronic fatigue syndrome but the latter may or may not involve pain, may or may not involve sleep problems and more typically results in the person wanting to sleep too much rather than not enough. Again, some people have both conditions overlapping.
  • Other typical issues are irritable bowel syndrome, chemical sensitivities, headaches including TMJ and neck pain, dizziness and balance problems on standing and other dysautonomic issues (POTs), all of these covered in my various other posts, search by tag.
  • Causes are unknown but it is typically linked to stress, trauma, environmental and genetic factors (in which I would include neurodiversity).
  • It is linked to chronic HPA Dysfunction (dysfunction of the hypothalamic-pituitary-adrenal axis) which from my own research (see various posts) can occur as a result of a mix of genetics, childhood experiences including attachment issues and later life trauma.
  • What classically seems to occur, in my observation, is that a pre-existing HPA axis weakness meets a stressful situation (which could be emotional, such as a divorce or bereavement, or physical such as a car accident, or prolonged fear and stress for other reasons) and this creates a perfect storm, from which fibromyalgia results.
  • Studies confirm that stress undermines functioning of the HPA axis but I would say pre-existing weaknesses are another consideration and, as I have talked about before, autism is such a weakness, especially if long undiagnosed (causing its own stresses and trauma).
  • Perimenopause and menopause can also severely disrupt the HPA, as I have touched on before, and then fibromyalgia can disrupt the hormones even more than in “normal” menopause, requiring a knowledgeable and cautious approach to natural supplements if used.
  • HPA axis disturbances cause impaired function of the brain and endocrine system.
  • Central sensitisation occurs when miscommunication between the nerve impulses of the central nervous system cause an over-amplification of pain (see functional issues below).
  • This, according to the presentation, is believed to be as a result of inadequate growth hormone production and HPA axis dysfunction.
  • Inflammation of the fascia is likely a key source of pain, resulting in extreme levels of peripheral noccieceptive input. The fascia is a web-like network of connective tissues enveloping all of our muscles and organs and contains a lot of nerves, making it is as sensitive as skin.
  • The fascia also contracts in response to “danger” signals from the brain which means it is more easily provoked when there is already a chronic condition stressing the individual and making them far more hypervigilant to pain sources.
  • The major cell of the fascia, the fibroblast, secretes pro-inflammatory cytokines in response to stress or strain and in fibromyalgia patients these inflammatory mediators have been found to be increased. Excessive release of cytokines is implicated in mast cell disorders (see below) as well as inflammatory conditions.
  • Increased tightness of the fascia increases pain and inflammation as well as contorting into painful knots called trigger points. Seeking trigger point therapy as I did for years, as I have posted about before, can be an important management approach but does not solve the root trigger of the increased tension, which is related to HPA axis dysfunction and heightened sensitivity to pain and stress caught in a loop.
  • When seeking a myofascial therapist they should be familiar with fibromyalgia and fully aware that the release of trigger points can both result in much intensified pain in your case, if too much release work is carried out at one time and also the release of mastcells, leading to a flare-up of other symptoms.
  • Emotions can get caught up in the fascia long-term so the release of trigger points can provoke memories of trauma before release is achieved, with the knock-on effect of other symptoms. Treading softly has to be the approach with fibromyalgia, especially if there is any trauma.
  • People with fibromyalgia have less mitochondria than other people, leading to further oxidative damage on top of other causes of this such as, potentially, nutritional deficiencies and leaky gut.
  • They have extra nerves on blood vessels resulting in extra temperature and pain sensing (which can feed back into autonomic issues such as difficulties regulating temperature or feeling dizziness or even pain when the temperature changes).
  • Environmental sensitivities that include symptoms in response to changes in the weather, the seasons, the quality of light, changes in air pressure or geomagnetic conditions, are commonly reported.
  • They often have small-fibre neuropathy.
  • Vitamin D deficiency is very common and addressing this is a key component of supplementation. To address this, it is required at high levels such as 4000 to 5000 IU per day (not the small amount in conventional supplements).
  • They have 31% lower magnesium levels and as magnesium mediates pain levels and sleep quality, also emotional sensitivity and the ability to cope with environmental stress, plus it also acts as a muscle relaxant (including relaxation of the colon, to prevent constipation) this is so important. Stress further depletes magnesium levels. Higher doses are therefore usually recommended (compared to usual RDA) and this takes some experimentation as it can cause gut issues.There are various types of magnesium, each with their own merits.
  • People with fibromyalgia have elevated glutamates (as I recently shared in a post) which leaves them tired-but-wired, anxious and with poor sleep. Amino acids can be used to tackle this, such as GABA, l-theanine and taurine, also lemon balm.
  • They have elevated homocysteine (explaining how helpful I have found supplementing with NAC, as shared before, which “acutely lowers” homocysteine according to studies such as this one).
  • They have elevated lactic acid, as I have talked about many times over the years but, in summary, too much lactic acid means their muscles don’t get the oxygen they need and this can also cause painful cramps.
  • Proinflammatory cytokines IL8 and IL-6 are elevated.
  • Pyruvate levels are elevated which can cause too much lactic acid in the blood.
  • Substance P (a neurotransmitter that signals pain) are typically found to be elevated.
  • Allodynia is another related condition (see my various posts on this) which is characterised by a low pain threshold, for instance, even certain fabrics and types of clothing can be too painful to wear.
  • Hyperalgesia is another cross-over and means that pain is amplified.
  • These last two conditions are types of functional pain related to fibromyalgia. There may be methods of moderating the symptoms, such as looser clothing and natural pain remedies such as CBD, but they can be very hard to live with.
  • Fibromyalgia becomes a vicious cycle whereby chronic stress disrupts the HPA axis, this results in low pain thresholds, pain then disrupts sleep, leading to fatigue, increased sensitivity, increased inflammation, suppressed immune function and lower metabolism. Poor sleep lowers serotonin triggering IBS, more pain, low moods and brain fog.
  • This cycle of responses is a strong reason to consider a limbic retraining approach such as the Gupta Program as a means of potentially breaking out of the loop of some of the chronic fear responses and general resistance to the condition. Taking the program will teach you, in simplest terms and very quickly, a great deal about how the condition likely came about, which can help you to be more proactive in tackling it.
  • Over time, you become your own expert; the key is to do this without further triggering the nervous system (which the Gupta Program method helps you to do as it is primarily a method of calming the nervous system response, boosting your confidence and sense of wellbeing as you start to get a grip on it).
  • Mainstream doctors are so thrown by all these symptoms that they tend to either assume you are a hypochondriac or tell you to “learn to live with it”.
  • People in general tend to assume that because you can walk into a room unaided and may even look fairly normal, there is nothing much wrong with you and that you are exaggerating. This makes fibromyalgia a lonely and isolating condition, having a profound effect on mental health.
  • The conventional meds that have tended to be be used come with multiple side-effects and have been shown to make the chronic condition worse over a 15 year period (taken from the webinar presentation). They tackle individual symptoms not root causes and can further complicate the situation.
  • Functional medicine and supplementation is the way forwards (over conventional meds).
  • Increasing serotonin is key because lack of deep restorative sleep depletes the store of serotonin resulting in many issues (note serotonin may be naturally low to start with for other reasons, such as in the case of autism).
  • Taking an SSNRI (conventional anti-depressant meds) to help the body to hold onto its serotonin stash will not work if levels are low to begin with!
  • Serotonin is essential for raising the pain threshold, blocking Substance P, helping you to fall asleep and then sleep through the night, regulating moods and anxiety, reducing cravings, increasing mental abilities and regulating normal gut motility.
  • To tackle this shortfall, the best approach is to saturate yourself in appropriate vitamins, minerals, amino acids and essential fatty acids. I also take standardised saffron supplements (“Affron”) which have been shown to have good results.
  • Including B vitamins is essential, particularly to address a typically chronic shortfall of B1 (thiamine) plus you must also include appropriate levels of all the other Bs as they work as cofactors (see my various posts about the high dose Thiamine “B1” protocol starting with this one).
  • 5-HTP or tryptophan are key players and many studies have shown significant benefits for people with fibromyalgia. If you do not get on with 5-HTP as sometimes happens, tryptophan may be a way forwards for you as it is a precursor that the body can use to make it (I refer you to Trudy Scott’s excellent resource Every Woman Over 29 for all matters amino acid related as she discusses all the different angles in detail).
  • 5-HTP/trytophan, B vitamins plus magnesium make serotonin so these are the crux of supplementation.
  • As well as exhausting their ability to cope with stress, many people with fibromyalgia also experience burnout of their stress coping glands including issues with cortisol and DHEA.
  • If the adrenal glands fall into a state of fatigue this leads to more pain, loss of stamina, inability to handle stress, sensitivities to changes in the weather and many the other familiar symptoms of a fibromyalgia flare-up. Therefore methods of supporting the adrenal glands should be explored via supplements and so on.
  • Ashwagandha is one supplement that has positive effects on adrenal function. Rhodiola rosea is another supplement often recommended for adrenals but can be stimulating and affect sleep. Avoiding coffee and sugar, adopting a good bedtime regime and getting outside into nature every day can also really help.
  • Low stomach acid (hypochlorhydria) is another potential problem and may be worsened by menopause, as I have recently discovered on coming off hormone support. Ironically this often feels like too much acid, for instance when there is acid reflux, when it is really a deficiency. This leads to absorption issues, bacterial overgrowth (SIBO), leaky gut, reflux, bloating, gut motility issues and pain.
  • Antacids are not the answer and come with severe health risks!
  • Digestive enzymes taken before meals might be helpful, according to the presentation (I am about to try these myself).
  • Abnormal thyroid function could also be an issue: low thyroid corresponds with many of the familiar symptoms of fibromyalgia such as low body temperature, cold hands and feet, tingling in extremities, fatigue and depressed mental acuity.
  • Although I have long been aware of a link to thyroid issues as I have had them myself, the presentation reported the shocking information that over 43% of individuals with fibromyalgia have low thyroid function and that its estimated that those with fibromyalgia are 10 to 250,000 times more likely to suffer from thyroid dysfunction than other people!
  • Other common issues that crop up include food allergies, yeast overgrowth, chemical sensitivities, EMF sensitivity, Osteo or Autoimmune Arthritis, mood disorders and poor immune function. For more on EMF sensitivity and other environmental factors, explore my various other posts in this blog.
  • Increased cytokines (as mentioned) and histamine intolerance can lead to food allergies and even a mast cell disorder as I have talked about before. I refer you to resources from Beth O’Hara of Mastcell 360 for an overview of how to tackle those.
  • While supplements are key, additional fillers in supplements can be a further issue for people with fibromyalgia and should be avoided as much as possible. Also, be sure of the purity of your choices. Doses should be triturated gradually to ensure suitability and to avoid having one paradox response after another as these can be highly triggering to the overly sensitised body, leading to further flare-ups that perpetuate the cycle.
  • There is no one approach to tackling fibromyalgia; it has to be a whole-system approach and should be tailored to your particular symptoms. There are many functional doctors that can help you to navigate the territory these days as well as countless online sources of information and resources, such as the Gupta Program or Fibro Doctor, for you to explore until you find a fit, which is a vast improvement compared to even a small handful of years ago.

With thanks to Dr Murphree for such a useful and clarifying resource, as formed the supporting framework for my recap and summary post. Although I had previously tried most of the approaches mentioned, it really helped me to organise what I already know and get clear about steps I might want to now take or have another look at, such as digestive enzymes and supporting my adrenal glands. Likewise, I hope that this summary shines some clarity and presents an opportunity to review your own processes and that the linked resources I have included from my own journey might be of some help.

Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest and anecdotal purposes only. They are not a substitute for medical advice, diagnosis, treatment, or prescribing. This article does not constitute a recommendation or lifestyle advice. Opinions are my own based on personal experience.Any links and information shared are for your own assessment and research purposes, I have no affiliation with any of the attached information sources and share them as point of interest, with no recommendation implied. You should check all health-related supplement and other protocols with your medical doctor before proceeding. Please seek medical advice from a professional if you are experiencing any symptoms or before you change your diet, your nutrients, your habits or anything else with health repercussions.

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