Summary Bio

I have a long list of illnesses (see it here). In 1995 at age fifteen I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Studies & Research on Fibromyalgia


Autonomic Nervous System Dysfunction as a Fibromyalgia Cause [article]
New research sheds light on mysterious fibromyalgia pain [article]
  • http://www.usatoday.com/story/news/nation/2013/12/15/fibromyalgia-research-breakthrough/3991063/
  • Oaklander published two studies this year showing that half or more of the cases of fibromyalgia are really a little-known condition affecting the nerves. People with this small-fiber neuropathy get faulty signals from tiny nerves all over the body, including internal organs, causing an odd constellation of symptoms from pain to sleep and digestive problems that overlap with symptoms of fibromyalgia. 
  • Neuroscientist Frank Rice and a team based at Albany Medical College also discovered that there are excessive nerve fibers lining the blood vessels of the skin of fibromyalgia patients — removing any doubt that the condition is physically real.
Neurobiology Underlying Fibromialgia Symptoms [medical study]
  • https://www.ncbi.nlm.nih.gov/pubmed/22135739
  • Neuroimaging studies show augmented sensory processing in pain-related areas, which, together with gray matter decreases and neurochemical abnormalities in areas related to pain modulation, supports the psychophysical evidence of altered pain perception and inhibition. Gray matter decreases in areas related to emotional decision making and working memory suggest that cognitive disturbances could be related to brain alterations. Altered levels of neurotransmitters involved in sleep regulation link disordered sleep to neurochemical abnormalities. Thus, current evidence supports the view that at least some fibromyalgia symptoms are associated with brain dysfunctions or alterations, giving the long-held "it is all in your head" view of the disorder a new meaning.
Changes in Gray Matter Density in Fibromyalgia: Correlation With Dopamine Metabolism [medical study]
  • http://www.jpain.org/article/S1526-5900(09)00007-8/abstract
  • Fibromyalgia is associated with reductions in gray matter density within brain regions ostensibly involved in phenomena related to the disorder, including enhanced pain perception, cognitive dysfunction, and abnormal stress reactivity. 
  • Given mounting evidence of abnormal dopaminergic neurotransmission associated with the disorder, the strong correlation between dopamine metabolism and gray matter density provides insight as to the pathophysiology that might contribute to these changes.
Evidence of abnormal epidermal nerve fiber density in fibromyalgia: clinical and immunologic implications  [medical study]
  • https://www.ncbi.nlm.nih.gov/pubmed/24719395
  • All patients with FM had evidence of stocking hypesthesia. 
  • The calf and thigh ENFD in patients with FM is significantly diminished compared with that in control subjects 
  • ...small fiber neuropathy is likely to contribute to the pain symptoms of FM; that pain in this disorder arises, in part, from a peripheral immune-mediated process
Pleasure and pain brain signals disrupted in fibromyalgia patients [medical study]
  • https://www.eurekalert.org/pub_releases/2013-11/w-pap103113.php
  • "In patients with fibromyalgia there is an alteration in the central nervous system pain processing." 
  • "Results show that during pain anticipation and relief, fibromyalgia patients displayed less robust response within brain regions involved in sensory, affective, cognitive and pain regulating processes. The ventral tegmental area (VTA) [is] a group of neurons in the center of the brain involved in the processing of reward and punishment...  VTA responses during periods of pain, and anticipation of pain and relief, in fibromyalgia patients were significantly reduced or inhibited."
Fibromyalgia: autonomic nervous system dysfunction  [article]
  • http://www.fmpartnership.org/articles/Martinez-Lavin.pdf
  • The results of these studies suggest that a fundamental alteration of fibromyalgia is a disordered function of the autonomic nervous system. Patients with fibromyalgia lose the normal day/night cycles (circadian rhythms) and have a relentless sympathetic hyperactivity throughout 24 hours. This may explain the sleeping problems that the patients have. 
  • At the same time, such individuals have sympathetic hypo-reactivity to stress, which could explain the profound fatigue, morning stiffness and other complaints associated to low blood pressure. This autonomic nervous system dysfunction could induce other symptoms of fibromyalgia such as irritable bowel, urinary discomfort, limb numbness, anxiety and dryness of the eyes and mouth.
  • Fibromyalgia's defining features (chronic widespread pain and tenderness to palpation) could be explained by the mechanism known as "sympathetically maintained pain". After a triggering event (physical/emotional trauma, infections) relentless sympathetic hyperactivity may develop in susceptible individuals. This hyperactivity induces excessive norepinephrine (also known as noradrenaline) secretion, that could in turn sensitize central and peripheral pain receptors and thus induce widespread pain and widespread tenderness.
Sympathetic nervous system dysfunction in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis [medical study]
  • https://www.ncbi.nlm.nih.gov/pubmed/24662556
  • This review demonstrates that sympathetic nervous system predominance is common in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis. This concordance raises the possibility that sympathetic dysfunction could be their common underlying pathogenesis that brings on overlapping clinical features. It may be worth exploring the use of nonpharmacological measures as well as drug therapies aimed to regain autonomic balance. 
Scientists Pinpoint Physical Cause of Fibromyalgia Pain [article]
Fibromyalgia Pain Isn’t All In Patients’ Heads, New Brain Study Finds [article]
Fibromyalgia Blood Test Claims Quick, High Accuracy Results [article]
Unrefreshing Sleep in Fibromyalgia [article]
Mitochondrial Dysfunction in Fibromyalgia [article]
Moderate pressure massage elicits a parasympathetic nervous system response [medical study]
The Affects of Heat and Massage on Autonomic Nervous System [medical study]
Massage and the Autonomic Nervous System [article]
  • http://timnoonan.com.au/resources/health-and-wellbeing/massage-and-the-autonomic-nervous-system/#effects-of-massage-on-autonomic-nervous-system-ans
  • “Thibodeau and Patton, (1996) describe the hypothalamus as the integrator of mind (psyche) and body (soma). It is also the main link between the nervous system and the endocrine system, In particular, it is the regulator and coordinator of autonomic activity. Though according to Soliman et al, (1990) “… Although the hypothalamus is considered the main sub-cortal centre for autonomic regulation, centres within the brain-stem (especially the medulla and spinal chord) are also very important. … in addition, areas of the cerebral cortex (particularly parts of the limbic system) can influence autonomic responses by sending messages to other parts of the CNS”
  • Thibodeau et al, (1988) also describe the hypothalamus as the major relay station between the cerebral cortex and lower autonomic centres. thus, they propose that the hypothalamus is the main mechanism by which ‘mind over body’ changes can be effected, even of a psychosomatic nature. “Thus emotions can directly effect the activity and the state of the body.”
  • Both acupuncture and deep tissue massage can trigger endorphins which can trigger relaxation and stress reduction which can trigger parasympathetic nervous system.
  • “Painful, stressful, and emotional experiences all cause changes in hypothalmic activity. In turn, the hypothalamus controls the autonomic nervous system and regulates body temperature, thirst, hunger, sexual behaviour, and defensive reactions such as fear and rage.” (Tortora and Grabowski, 1996)”
  • “While biofeedback is relatively new, profound results have been documented for practitioners of various systems of meditation. These disciplines have been practised for thousands of years, but great discipline and practise are required to elicit body changes compared to shorter training times in biofeedback situations.”
  • Effect of human touch not to be overlooked in massage and energy balancing as a treatment therapies.  Intent and attitude of care or even love in the therapist are paramount.  In same respect, attitude of patient and focus on relaxation, acceptance of care/love through touch, biofeedback, energy, meditation, etc is important to ensure parasympathetic response instead of sympathetic.
  • Aromatherapy effects can be conditioned.  Smell directly linked to memory, [fastest processing out of all the senses] = strong effect on brain.  Pleasant scent or essential oil combo used during relaxing massage therapy sessions can be used later to trigger memories and relaxing response.
Childhood Trauma Leads to Lifelong Chronic Illness [article]
Childhood, Disrupted [article]
  • https://aeon.co/essays/how-bad-experiences-in-childhood-lead-to-adult-illness
  • Kids who’ve faced chronic, unpredictable stress undergo biological changes that cause their inflammatory stress response to stay activated.
  • The children who’d experienced chronic childhood stress showed epigenetic changes in almost 3,000 sites on their DNA, and on all 23 chromosomes – altering how appropriately they would be able to respond to and rebound from future stressors.  Kids who’ve had early adversity have a drip of fight-or-flight hormones turned on every day – it’s as if there is no off switch
  • Pollak identified damage to a gene responsible for calming the stress response. This particular gene wasn’t working properly; the kids’ bodies weren’t able to reign in their heightened stress response. ‘A crucial set of brakes are off,’ says Pollak.
  • In people such as [these], the endocrine and immune systems are churning out a damaging and inflammatory cocktail of stress neurochemicals in response to even small stressors – an unexpected bill, a disagreement with their spouse, a car that swerves in front of them on the highway, a creak on the staircase – for the rest of their lives. They might find themselves overreacting to, and less able to recover from, the inevitable stressors of life. They’re always responding. And all the while, they’re unwittingly marinating in inflammatory chemicals, which sets the stage for full-throttle disease down the road, in the form of autoimmune disease, heart disease, cancer, fibromyalgia, chronic fatigue, fibroid tumours, irritable bowel syndrome, ulcers, migraines and asthma.
  • Adversity in childhood can create long-lasting scars, damaging our cells and our DNA, and making us sick as adults.
  • The children who’d experienced chronic childhood stress showed epigenetic changes in almost 3,000 sites on their DNA, and on all 23 chromosomes – altering how appropriately they would be able to respond to and rebound from future stressors.
  • Kids who’ve had early adversity have a drip of fight-or-flight hormones turned on every day – it’s as if there is no off switch
  • Pollak identified damage to a gene responsible for calming the stress response. This particular gene wasn’t working properly; the kids’ bodies weren’t able to reign in their heightened stress response. ‘A crucial set of brakes are off,’ says Pollak.
  • Imagine for a moment that your body receives its stress hormones and chemicals through an IV drip that’s turned on high when needed and, when the crisis passes, it’s switched off again. You might think of kids whose brains have undergone epigenetic changes because of early adversity as having an inflammation-promoting drip of fight-or-flight hormones turned on every day – it’s as if there is no off switch.
  • Experiencing stress in childhood changes your set point of wellbeing for decades to come. 
  • Facing difficult circumstances in childhood increases six-fold your chances of having myalgic encephalomyelitis (chronic fatigue syndrome) as an adult.
  • The adversity a child faces doesn’t have to be severe abuse in order to create deep biophysical changes that can lead to chronic health conditions in adulthood.
  • That feeling that the bear is still out there, somewhere, circling in the woods, stalking, and might strike again any day, anytime – that feeling never disappears.
  • There are a lot of bears out there. Chronic parental discord; enduring low-dose humiliation or blame and shame; chronic teasing; the quiet divorce between two secretly seething parents; a parent’s premature exit from a child’s life; the emotional scars of growing up with a hypercritical, unsteady, narcissistic, bipolar, alcoholic, addicted or depressed parent; physical or emotional abuse or neglect: these happen in all too many families. Although the details of individual adverse experiences differ from one home to another and from one neighbourhood to another, they are all precursors to the same organic chemical changes deep in the gray matter of the developing brain.
Trauma [article]
  • http://www.brainworksneurotherapy.com/neurofeedback-trauma-PTSD
  • HYPER VIGILANCE & TRAUMA: A heightened state of awareness is part of the fight / flight response, resulting in a state of chronic hyper-vigilance. This state is akin to being locked into permanent ‘battle stations’; brain resources on constant alert, causing inappropriate or even aggressive reactions in everyday situations. PTSD article here...   
  • FREEZE & DISSOCIATION:  When a threat is utterly overwhelming and too much for the fight / flight system to cope with, the brain goes into a ‘Freeze’ state; a numbing or collapse response. This sort of trauma is experienced as a general shutdown, lack of vitality, emotional separation and detachment.
  • NEUROFEEDBACK FOR TRAUMA:  Neurofeedback therapy works at a deep subconscious level, breaking the cycle of trauma and post-traumatic symptoms. By identifying and training the areas of concern, we precision tailor your sessions to help you shift out of these patterns and back into a natural, neutral state.  Neurofeedback gives the brain the tools to move past traumatic events – without having to talk about them, explore them, or relive them.

1 comment:

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