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@EmLyWill: “Androgens seem to promote growth and maintenance of connective tissues like tendons and muscles. Estrogen promotes similar growth but also rapid turnover-- something not seen with androgens. So musculoskeletal connective tissue will simply be weaker in females”.
“Deconditioning also lowers testosterone further decreasing muscle mass creating a challenging viscous cycle! Regaining lean mass is crucial in #ehlersdanlossyndromes and any #pain condition!”

My clinical studies have taught me that Fibromyalgia is a weakened body tower partly caused by laxity of deconditioned &/or injured (acutely or chronically & repetitively) soft tissues (myofascia, muscles, tendons, & ligaments).
MAJOR TENANT: Hypermobility Spectrum Disorder (HSD) & Fibromyalgia are highly associated. In October 2019, l presented a study, “Causes of Fibromyalgia” in Proceedings (on line) at 10th Interdisciplinary World Congress on Low Back & Pelvic Pain (Antwerp) & presented data (N=50).
Chronic Widespread Pain (CWP) is especially generated by body-wide weak muscles assaulted by the gravitational field acting upon body parts & mass; causing supporting soft tissues to become chronically spastic & pained.
My definition of Fibromyalgia is: A repetitive bio-mechanical stress disorder that causes chronic widespread muscle weaknesses, chronic widespread soft tissue strain/spasm, & Chronic Widespread Pain (CWP).
AS AN ASIDE: My theory is that disorders associated with Ehlers-Danlos Syndrome (EDS) evolve in persons with greater genetic penetrance along the HSD spectrum of tissue variations. Mere repetitive & chronic exposure to gravity forces are consequential.
I have no data to support my theory of EDS symptoms. Certainly, if there can be shown that people with the same genetic variations underlying EDS accrue increasing symptoms as a function of time after birth, ....
and if this greater constellation of symptoms & symptom intensities occur absent significant traumatic injuries or prolonged bedrest due to an infectious illness, then this data would support my hypothesis.
Idea that pain of Fibromyalgia is caused by central brain sensitization is theory. Reason for academic disregard for alternative concept of widespread sensation of peripheral pain generation is that physiology does not generally have methods to measure peripheral pain generation.
Methods of measurement of function of the wispy web of myriad peripheral nerves has not yet been invented. Nerve Conduction Tests (NCT) used by Neurologists are crude medieval-like torturing instruments. Most patients swear they will never have another.
These NCT instruments generate electromagnetic fields which overwhelm delicate fields of smaller peripheral nerves; disrupting any attempts to measure them. It took me years to learn the NCT does not even register abnormality until 2 weeks after major nerve tracts have died.
Patients have ability to measure peripheral pain generation because, when doctors press on their soft tissues (myofascia, muscles, tendons & ligaments), patients feel pain. They feel pain right where they are pressed.
Are we to believe that what Fibromyalgia pain patients feel is due to a rewired brain? Perhaps pain is where patients report it, & lit-up functional MRI tests merely register barrage of pain signals to brain?
Perhaps delicate measurements of peripheral pain exist? (see discussion of the work of Dr. Shah, below).
Theory of central pain sensitization goes against all we know about evolution of body systems intended to protect us from dangerous environments.
Are we to believe our brains evolved by natural selection to become overly sensitized, & thereby generate factitious pain; defeating our efforts to stay functional, to prosper, & to survive?
About 10 years ago, I attended a pain conference. Dr. Shah, an NIH medical doctor-researcher, presented study of painful trigger points within the Superior trapezium muscles, large muscles of shoulder-neck, & which simultaneously support head & shoulder hemi-girdles.
Dr. Shah used micropipette sampling of tissue juices & sensitive ultrasound instruments to study blood flow & chemistry of small palpable tender nodes within Superior trapezium muscles.
Massage therapists are well acquainted with these painful Superior trapezium muscle nodes. Myofascia trigger point therapists inject these painful nodes to temporarily reduce pain.
What Dr. Shah discovered was that these tender tissue foci had constricted arterioles, depleted oxygen (anoxia), & high molecular concentrations of reactive substances, like Substance P, which evoke neural pain.
Superior trapezium & associated Levator scapularis muscles are premiere sites of Fibromyalgia pain, with mass & entheses some of 18 diagnostic pain points. Over years, I have collected most pharmaceutical ads offering graphic imagery of Fibromyalgia pain.
In these ads, is a woman & focus of pain is dramatically pictured at top of shoulder (Superior trapezium) & at entheses (insertion sites) of Levator scapularis muscles upon Superior Scapula Spine of shoulder skeleton, a common focus of tissue irritation within a tilted body tower
IMO, Dr. Shah discovered the physiologic nature of Fibromyalgia pain points, which an American College of Rheumatology committee incorporated into a 1991 criteria for Fibromyalgia diagnosis: positive when 11/18 standardized anatomical points are pained to firm palpation.
These 18 Fibromyalgia pain points are entheses (places of insertion) of ligaments & tendons on bone prominences. They are also places where ligaments & muscles hold & support the axial body skeletal tower during upright postures within the gravitational field.
Without moment to moment contraction of muscles of upright posture, the body would collapse into a heap of bones on the ground. There are more than ~200 muscles (in pairs from side to side). Several of the larger muscle groups are tasked to hold us up against the force of gravity
Superior trapezium muscles are major participants in upright-body-posture muscle groups. Major muscles around pelvis (platform supporting spine-post) & legs (posts supporting pelvic platform) are other muscles in this select & important group of “muscles of upright postures.”
The academic literature describes that “two weeks” of disuse (bedrest) leads to significant wasting of muscles; which lose tone & strength. Astronauts taken off return capsules & needing to be placed into wheelchairs attest to this phenomenon.
The sedentary in-bed respite of persons with Fibromyalgia & companion chronic fatigue disorders begets deconditioned muscles of upright-posture, & the dynamic becomes self-perpetuating. Weak muscle = spasm = pain = rest = weaker muscles = spasm & etc.
It is a vicious cycle of pain & increased rest whereby the pathologic dynamic of Fibromyalgia takes hold on body soft tissues. It is a grand paradox that the pathophysiology & phenomenon of Fibromyalgia actually begets itself.
Deconditioned muscles, chronically strained holding up weakened body parts, become additionally spastic; developing myriad chronic anoxic painful body-wide trigger points. The result is Chronic Widespread Pain (CWP). These pains prevent effective exercise.
IMO, these CWP trigger points are ongoing peripheral pain generators of Fibromyalgia & multiply overtime. Painful entheses (soft tissue bone attachment points) lie in wait to be discovered by modern day researchers, & are not easily detected outside academic labs (Dr. Shah above)
I have long considered that Surface Electro-Myography (SEMG) might be an effective surrogate marker for chronic widespread muscle spasm & chronic widespread pain (CWP) in Fibromyalgia. But there is only so much money and so much time; all my research is self-funded.
Neural pain generation is registered in brain. Functional MRI (fMRI) brain images are theorized to reveal patterns of central pain sensitization, but only one theory & one interpretation of data. My idea is these lite-up areas register myriad pain signals peripherally generated.
If neural physiologists need evidence of brain centralization of painful dysautonomic function, look no further than brain stem (seat of autonomic nerves) impingement within ME patients, whose 10 pound heads sit unstably on top of weak, twisty, & oft hyper-flexible body towers.
Perhaps the brainstem is where brain physiologists should be searching with their supposedly-diagnostic functional MRI’s (fMRI). Maybe there is a means to diagnose ME/CFS irritated lesions within these brain stem regions.
Of course intermittent brain stem tissue impingements in ME/CFS patients would best manifest in upright postures; whereby effects of gravity on body mass (head) would be better demonstrated. Patient-seated MRI technology is currently emerging.
Back to Chronic Widespread Pain of Fibromyalgia. The concept that Fibromyalgia pain escalation is due to magnification of peripherally-generated pain has never been disproven. This is one of the points I am trying to make in this essay.
My repeated observations have been that Fibromyalgia patients are not able to effectively participate in Physical Therapy. Land-based physical therapy, whereby muscles perform against gravity, is too painful. Efforts during Pilates & aerobic exercises are even less tolerable.
The only physical exercise that is possible for most Fibromyalgia patients is Balneotherapy: physical conditioning in an aquatic environment, where buoyancy of water negates gravity. Studies in academic medical literature report these same observations.
The efforts of Aqua therapy should be directed at reestablishing normal tone & strength of muscles that are critical to the maintenance of upright posture of the body tower.
While strengthening & stiffening the body tower, specific attention needs to be given to Trapezium muscles, both Superior & Inferior, because these muscles hold up shoulders (each hemi-girdle ~15#), neck & head (~10#), & support the entire spine-post.
Other important muscles of upright posture are the Rhomboids, Pectoralis (minor), Transverses abdominis, Gluteus maximus, & all the flexors and extensors of the legs; reason walking is so important to keeping leg muscles toned.
Specific exercises can accomplish proper strengthening of soft tissues of Fibromyalgia patients to stiffen the body tower. When performed in water gravity in negated. One can start with walks around the pool to strengthen legs.
Coaching by a Physical Therapists is most useful. For example, PT’s would know way to strengthen Superior trapezium in water is to push floats downward. On land, lifting hand-held weights with shoulder shrugs is effective.
Once muscles of upright posture have been regained by means of water exercises, then patient can advance to walking on land; exposing muscles of upright posture to the full force of gravity. This activity in itself is a major Physical Therapy.
Definition of Fibromyalgia requires both lower & upper back pain be present. Thoracic Outlet Syndrome (TOS) results from a weak upper body tower. IMO, TOS is the upper body element of Fibromyalgia pain. Pelvic girdle joint injuries cause the low back pain component.
See my discussion of etiology of TOS below & within this essay. Within my Thread Reader unroll library of essays, I have included an essay on the causes, evolution, & therapy for TOS.
Gradual increased efforts & graded exercise during regular walking strengthens muscles of upright posture. Tugging on leash of a large dog being walked will help to tone muscles of shoulder girdle & neck. I have observed women reverse TOS by such dog-leash-walking activities.
Over time, a back pack should be added to the walking regime & starting at pack weights about 5-10% of body weight. Walking with a back pack is called “rucking”. These efforts will further train & strengthen all the back muscles, including those of shoulders & neck.
A back pack tends to evoke shoulder-neck muscle configurations of a military posture, which is good for upright balance of the body tower; especially for posture correction in women who have anterior sloped shoulders & large breasts, which potentiate TOS.
It is no coincidence that the US military turns out some of the best soldiers in the world. Much attention is given to hiking with loaded packs & thereby generating strong backs. Strong backs underlie successful bio-mechanics of individuals’ warfare physical skills.
It is no coincidence that obesity is a reason for inability to join the military. Excess weight stresses the body tower & advances degrees of dysfunction & deconditioned bodies. Advanced soft tissue deconditioning is one of the major multifactorial causes of Fibromyalgia.
Widely ranging deconditioned muscles & other soft tissues have extraordinary difficulty supporting an effective upright body tower. Re-establishment of effective motor control requires specific & sequential exercise regimens.
Advanced exercises for Fibromyalgia include swimming, gentle yoga, & gently bouncing on a floor trampoline. One of my patients successfully reestablished generalized body tone by dedicated rolling on high density plastic roller in seated/lying positions 30 minutes/day x 3 years.
Another principle of reconditioning is to exercise balance mechanisms (proprioception) of the musculoskeletal system. This can be accomplished with large hollow plastic wands filled with small metal beads; to create shifting weights.
The wands are held out in various directions while the body is moved through various postures & spacial positions. The asymmetric & shifting weights challenge central nervous system centers of proprioception.
Standing on a platform that rotates around a central axis that tilts at the same time (ellipticals) can challenge proprioceptive functions. Another exercise for balance & coordination is Tai Chi.
It is important, while generating muscle strength of Superior trapezium muscles (supports shoulders & head), to strengthen the Pectoralis minor muscles, which oppose Superior trapezium in bio-mechanical movements of the shoulders.
An overdeveloped & hyper-dynamic Superior trapezius muscle can lead to Thoracic Outlet Syndrome, which is a chronic pain disorder of shoulders.
TOS occurs because of a tilted upper body (due to underlying scoliosis) & asymmetric shoulder girdles (see my thread-reader library of unrolls & essay about TOS).
As TOS develops, one Superior trapezius is toned & over developed as other becomes asymmetrically, atrophic, & weak (“Crossed Muscle Syndrome”).
The specific muscles that oppose Superior trapezium hyperdynamic upward draw of shoulder hemi-girdles are the Pectoralis minor muscles.
After a Crossed Muscle Syndrome has developed in shoulder hemi-girdles, unilateral arm-shoulder abduction greater than 90 degrees (arm above horizontal) causes ipsilateral Superior trapezius to shorten by folding, with relaxation of pull of this muscle upon the distal clavicle.
When the relaxed Superior trapezius lessens superior-directed draw upon the distal clavicle, this circumstance unmasks dominant Pectoralis minor muscle inferior-directed draw upon the distal clavicle.
Distal Pectoralis minor muscles attach to the distal clavicle. As arm abducts, hyper-dynamic function of Pectoralis minor muscle draws distal clavicle (which normally shifts superiorly during abduction) inferiorly. This abnormal clavicle shift relatively closes Thoracic Outlet.
Geometric analysis of the 18 cm long clavicle shows that a few mm of inferior abnormal shift of the distal clavicle can close the proximal sub-clavicle-to-top-of-first-rib space, the true Thoracic Outlet (TO), by ~30%.
In life, vertical dimension of the TO is ~1.0 cm. The TO is the transit location for all major arteries, nerves, & veins going to & from central body to arm. Closure of this space clips, impinges, these conduits, & symptoms of TOS ensue.
A way to reverse TOS is to work with a Physical Therapist to relax muscles of the shoulder hemi-girdle that are hyper-dynamic & spastic, & to tonify & develop muscles that are hypo-dynamic & weak; to reduce Crossed Muscle Syndromes within shoulder hemi-girdles.
A way to selectively develop shoulder muscles is with a Theraband (TM) elastic exercise device. Pulling on a resistive force (Theraband connected overhead) can tone weak Pectoralis minor muscles. Pulling up on a Theraband connected to floor strengthens Superior trapezium muscles.
People who want to recondition their muscles of upright posture, including those of the shoulder, should undertake services of a skilled Physical Therapist.
It is important to remember that adjunctive efforts in reconstituting muscle strength & tone are hormones. Testosterone & estrogen are important hormones. It is intriguing to consider what a dab of topical testosterone gel might contribute to female rehab from Fibromyalgia.
Growth hormone (GH) is important and supplements that provide the body with natural bio-chemical precursors, in effort to enhance body stores of GH, might be a consideration. However proof that these molecules work is not persuasive.
I have encountered many hypermobile men & women with similar injury histories & degrees of hyper-mobility. Men seem to require more forceful & destructive mechanical forces, like motorcycle accidents, to injure & loosen pelvic joints, & to potentiate disabling Fibromyalgia.
Inherent greater mass of male muscles makes a difference. So does robust size of the male pelvic bones and generous ligaments that connect & hold their pelvic bones together at the sacroiliac joints.
Women can evoke full blown Fibromyalgia from pregnancy/delivery, slips, falls, & lifting (e.g., protecting 230# patients who lose balance) accidents & injuries of pelvis joints. Nurses are particularly prone to develop unstable pelvises & Fibromyalgia.
Women with Hypermobility Spectrum Disorders (HSD) are particularly potentiated to develop chronic pelvic joint ligament injuries from childbirth & menial injuries (see my “Study of Cause of Fibromyalgia” referenced above).
In men, a common story of mechanical injury (men rarely have potentiating inherited Hypermobility Spectrum Disorder, HSD) is they were carrying a refrigerator or auto transmission and lost their balance.
At the instance of stumbling, they tried to regain balance & to prevent damage to the item. Excessive vertical forces & soft tissue torsion stress chronically injured pelvic girdle ligaments.
Another common injury mechanism amongst men is moving 300-400 pounds with another man, who lost his grip, while these lifters held on & incurred unanticipated, sudden-shifted, & extraordinary mechanical forces onto their own low backs & pelvises; tearing pelvic joint ligaments.
I have examined several hypermobile women with mild chronic aches & pains, but not full blown Fibromyalgia, nor with >11/18 points positive for pain. These relatively asymptomatic women had been physically active before, during, & after their low back & pelvic injuries.
A distinctive feature of these women isthey avoided inactivity & pursued a sport, swimming, regular gardening, etc. in order to forestall musculoskeletal deconditioning. They preserved widespread muscle tone & protected pelvic joint ligament integrity. They also avoided obesity.
The easiest way to avoid obesity & to lose weight is the Keto Diet: low carbohydrate high fat (LCHF) diet that includes meat (all meat has good fats). Butter & cheezes are good. The long held theory that cholesterol causes hardening of the arteries has been debunked.
A modest amount of vegetables are good for vitamin & mineral content, but vegetables are carbohydrates. Fruits are dense with fructose sugar & should be taken in minimal amounts & only as condiments to add some flavor to food dishes. Fruit juices are sugar-dense & to be avoided.
As to packaged food, if the label says more than 6 grams of sugar per serving don’t buy it. Absolutely no soft drinks & very minimal fructose-laden fruit juices.
Cheezes, eggs, beans, & nuts are good. Potatoes, rice, wheat, corn, & cereals grains are carbohydrate-dense (sugar) foods & to be avoided.
The idea with the ketogenic diet is to stop filling the body, which is a sponge for sugar, with carbohydrates which digest to sugar & so that the body chemistry will shift to harvesting stored fat to burn for energy, i.e., “ketosis”.
Saturated fats in meats are good. Industrial-generated trans fats & omega-6 laden oils from vegetables are bad. The amazing thing about the keto diet is that episodes of hunger are minimal.
Low thyroid function can be measured & corrected. When it comes to hormone enhancement, whole thyroid glandular substances bought in health food stores might be enhancing. I defer to Naturopaths who have skill sets to advise about these matters.
Vitamin C, D, & Magnesium are important for musculoskeletal function. Ribose & niacinamide are important for mitochondrial production of energy. Adequate amino acids (building blocks of muscle protein) are critical & consumption of meat is advised.
Bone soup can provide the biochemical molecular precursors to collagen (ligaments). A bone soup fast once weekly is probably effective to enhance weight loss as well as provide soft tissue bio-chemical precursors.
Healing from Fibromyalgia requires training the body, mind, & spirit. Mindfulness therapies of biofeedback & meditation are proactive. The passive therapy of Acupunture might provide temporary pain relief.
It is useful to regard that the most effective physical activity is one that is regular & progressively increased. If pain is disruptive of physical activity, then opium derivatives (opiate medications) & Cannabis whole herb medicinals might be used for pain relief.
Topical salves made from Cannabis are very effective for musculoskeletal pain. The secret is to open the skin pores with hot showers beforehand or apply a heating pad over the salve.
If loose & subluxing joints are an impediment to physical therapy, Prolotherapy might be natural non-toxic way to advance joint stabilization. Prolotherapy stimulates ligaments to thicken & shorten. Tissue growth hormones are probably involved if stem cells are used in injectate
Remember that operative efforts introduce prolonged periods of convalescence into the healing program; periods that foster deconditioning of soft tissues.
The idea is to initiate all the aspects of an healing program simultaneously.
I hope that this does not sound unsympathetic, but Fibromyalgia patients have two options: lay around and wait for gene editing therapies (distant on the horizon) or initiate a program to reverse multiple environmental factors that generate Fibromyalgia.
A good place to start is with review of the stories of Fibromyalgia survivors at @cfsunravelled.
CONCLUSION: Fibromyalgia is a multifactorial disorder and healing from this disorder requires reversing the multiple factors.
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