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EXERCISE AND HYPERMOBILITY SPECTRUM DISORDER: a long thread about to be introduced & replies might await until the end, thanks.
@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 lax soft tissues, & especially by weak muscles caused to be spastic & pained by gravitational field assault. More on this below:
My definition of Fibromyalgia is that it is a repetitive stress disorder that causes chronic widespread muscle spasm & pain. Gravity is the stressing injury force.
Idea that pain of Fibromyalgia is caused by central brain sensitization is a theory. Reason for absence of prominent academic regard for peripheral pain generation is that physiology hasn’t methods to measure peripheral pain generation.
Yet, patients have ability to measure peripheral pain generation. When doctors press on their soft tissues (myofascia, muscles, tendons & ligaments), patients feel pain. Are we to believe that pain Fibromyalgia patients feel is due to a rewired brain?
The theory of central pain senditization goes against all we know about evolution of body systems intended to protect us from painful injuries. Are we to believe our brains work in ways to defeat our efforts to stay functional & to prosper?
About 10 years ago, I attended a pain conference. Dr. Shah, an NIH medical doctor, presented a study of trigger points within Superior trapezium muscles (large muscles of shoulder-neck) which simultaneously hold up the head & shoulders.
Dr. Shah used micropipette sampling of tissue juices & sensitive ultrasound instruments to study blood flow & chemistry of small palpable tender points within the Superior trapezium. As to this muscle, -ium is pleural; -ius is singular.
What he discovered was that these tender tissue foci had constricted arterioles, depleted oxygen, & high molecular concentrations of reactive substances, like substance-P, which evoke neural pain.
The Superior trapezium muscles are premiere sites of Fibromyalgia pain. Over the years, I have collected most of the pharmaceutical ads offering graphic imagery of Fibromyalgia pain.
Universally, there is a woman & focus of pain is dramatically pictured at top of her shoulder blade (called Superior Scapula Spine), a major entheses (insertion site) of Superior trapezium upon the shoulder skeleton.
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, and as follows...
The diagnosis of Fibromyalgia is made when at least 11 of the standard anatomical entheses points are pained upon firm palpation performed by the examiner.
These Fibromyalgia pain points are entheses (places of insertion) of ligaments & tendons on bone prominences. They are also places where ligaments & muscles hold together the axial body skeletal tower during upright postures within the gravitational field.
Once again: The body is a skeletal tower held upright in face of gravity and by soft tissues that connect to the bony skeleton. When body is too oft reclined, these soft tissues become wasted & weak; prone to spasm & pain.
Without moment to moment contraction of muscles of upright posture, body would collapse into a heap of bones on the ground. There are more than 200 muscles (in pairs from side to side). Several large muscles are tasked to hold us up against the force of gravity.
The Superior trapezium muscles are major participants within this upright-body-posture muscle group. Major muscles around the pelvis & legs are other muscles in this select (critically important) group of “muscles of upright posture”.
The academic literature describes that “two weeks” of disuse leads to significant wasting of muscles; which lose tone & strength. Astronauts taken off return capsules & placed into wheelchairs attest to this phenomenon.
The sedentary in-bed postures assumed by persons with Fibromyalgia, & companion chronic fatigue disorders, generate deconditioned muscles of upright posture, & the dynamic becomes self-perpetuating. Weak muscle = spasm = pain = rest = weaker muscles = spasm & etc.
Deconditioned muscles, chronically strained holding up weakened body parts, become additionally spastic; developing myriad painful chronic anoxic painful body-wide trigger points, i.e., Chronic Widespread Pain.
The pathologic dynamic of Fibromyalgia begets itself. The result is Chronic Widespread Pain (CWP).
These CWP trigger points are ongoing peripheral pain generators of Fibromyalgia & they multiply overtime. The painful entheses (soft tissue bone attachment points) lie in wait to be discovered by modern day clinicians; pained entheses are not easily detected outside academic labs
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 $ and so much time if one is not a medical Professor.
Neural generation of pain is registered in the brain. Unfortunately, functional MRI (fMRI) brain images are theorized to reveal patterns of central pain sensitization.
But that is only one interpretation. Perhaps f(MRI) regions light up simply because more peripheral pain transducers come on line in Fibromyalgia.
If neural physiologists need evidence of brain centralization of painful dysautonomic functions they need look no further than brain stem (seat of autonomic neural control panels) impingement in ME/CFS patients’ #10-head instability at top of twisty & hyper-flexible body towers.
Perhaps this is where brain physiologists should be searching with their supposedly-diagnostic functional MRI’s (fMRI). Maybe there is a means to diagnose ME/CFS in these inferior 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. 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 major points of this essay.
My repeated observation has been that Fibromyalgia patients ineffectively participate in Physical Therapy. Land-based physical therapy; whereby muscles perform against gravity too painful. For these reasons, benefits from Pilates & other aerobic exercises are difficult to obtain.
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. Positive studies in academic medical literature proves this.
The efforts of Aqua therapy should be directed at reestablishing good tone & strength of the “muscles of upright posture”. Simply walking around the pool is key. Specific attention needs be given to Trapezium muscles, both the Superior & Inferior.
Other important muscles of upright posture are the Rhomboids, Pectoralis minor, Transverses abdominis, Gluteus maximus, & all flexor/extensor muscles of legs. The important status of leg muscle support for standing is reason walking exercises are so important.
Specific exercises can accomplish proper strengthen of soft tissues of those with Fibromyalgia Syndrome. Coaching by a knowledgeable Physical Therapist is helpful. For example, PT would know Aquatherapy exercises, e.g., push floats downward to strengthen Superior trapezium.
Once strength of muscles of upright posture have been regained, then patient’s can advance to walking on land, i.e., exposed to the full force of gravity. This simple exercise will additionally strengthen muscles of upright posture.
While taking walks, tugging on the leash of a dog will tone muscles (Superior trapezium) of shoulder girdle & neck. I have observed women reduce symptoms of Thoracic Outlet Syndrome (TOS) with this dog-leash exercise. Also, gavity force can be increased ...
Over time, a back pack should be added to walking regime; starting at weights ~5-10% of body weight. Walking with a back pack is called “rucking”. These efforts will further strengthen all the back muscles, including neck, shoulders, & low back.
Muscle configurations & development that generate a military style posture is recommended; especially for women with anterior sloped shoulders & large breasts. These women commonly have chronic muscle tension headaches.
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 back packs and generating strong backs for combat.
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 of deconditioned bodies.
Advanced soft tissue deconditioning is one of major factors, amongst a group of multiple factors, conjoined to cause fibromyalgia pain. Widely ranging decondition muscles & other soft tissues have extraordinary difficulty maintaining an effective body tower during upright posture
Advanced exercises include swimming, gentle yoga, & gently jumping on a floor trampoline. One of my patients successfully reestablished generalized tone by dedicated rolling his body on a high density plastic roller in seated & lying positions for 30 minutes each day for 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 that roll about challenging the body’s place in space.
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 that roll about challenging the body’s place in space.
The wands are held out in various directions while the body is moved through various postures. The shifting asymmetric weights challenge the nervous system centers of proprioception; training their acuteness of perception.
Standing on a platform that rotates around a central axis & which simultaneously tilts (ellipticals) can also challenge proprioceptive functions & develop proprioceptive skills. This should be a key part of any exercise program.
It is important while generating strength of Superior trapezium (which hold up shoulders & head) to also strengthen muscles (Pectoralis) that oppose Superior trapezium. By doing this patient avoids development of painful “crossed muscle syndromes” within shoulder girdles.
An overly developed Superior trapezius can lead to Thoracic Outlet Syndrome. Pulling down on a resistive force like a Theraband elastic exerciser connected overhead can accomplish exercise of the Pectoralis minor muscles that oppose Superior trapezium.
People who want to recondition their muscles of upright posture should connect with a skilled Physical Therapist to develop an exercise regimen focused on the “muscles of upright posture”.
It is important to remember that adjunctive elements in reconstituting muscle strength & tone are hormones. Testosterone & estrogen are important to respective genders. It is intriguing to consider what a dab of testosterone might contribute to female rehab from Fibromyalgia.
Growth hormone (GH) is important, & supplements that provide the body with natural bio-chemical precursors of GH are efforts to enhance body stores of GH & might be considered.
Enhancement of cellular mitochondrial ATP energy stores are important, & one of my recent Twitter threads discussed nutraceuticals for ATP enhancement.
I have encountered many hypermobile men and women with similar injury histories & degrees of hyper-mobility. Men (more robust pelvises) require more destructive mechanical forces, like motorcycle accidents, to advance to disabling Fibromyalgia.
Women can evoke full blown Fibromyalgia after menial slip, fall, & lifting accidents & injuries (such as unexpectedly protecting 230# patients who lose their balance).
In men a common story is they were carrying a refrigerator or auto transmission and lost & then tried to regain their balance in order to prevent damage to the item; torquing pelvic girdle. Or else their carrying buddy unexpectedly dropped his end...
Typically, the injured man was moving 500 pounds with another man who lost his grip; causing him to incur sudden forces onto his low back, pelvis, & particularly the ligaments that tether pelvic bones.
Inherent greater mass of male muscles makes a difference. So does robust size of male pelvic bones and generous ligaments that connect their pelvic bones. This is one of the major reasons men have less Fibromyalgia.
I have examined many hypermobile women who have chronic aches & pains, but not full blown Fibromyalgia (>11/18 positive pain points).
Commonly, these relatively asymptomatic women were physically active before, during, & after their low back/pelvic injuries. Toned muscles protect & compensate for loose joints.
These asymptomatic women avoided inactivity and regularly pursued a sport, swimming, or gardening to forestall deconditioning. They also avoided obesity.
Besides exercising the soft tissues of upright posture, the stream of nutrients in food consumption must be optimized & exercised:
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 fat, which is good). Potatoes, rice, wheat, corn, cereals grains & fruits (all of which are sugars by other names) are to be avoided.
It is time for the medical community to face up to the evidence of decades of scientific study. The cholesterol hypothesis of hardening of the arteries by cholesterol in food has been debunked. But that is another story.
A modest amount of vegetables are good for their vitamin & mineral content, but vegetables are carbohydrates & should be limited. Vegetables should be lightly steamed & the steam water consumed.
If the food label says more than 6 grams of sugar per serving don’t buy it. Absolutely no soft drinks & minimal fructose-laden fruits & fruit juices. Cheezes, eggs, beans, & nuts are good.
The long held theory that food cholesterol causes hardening of the coronary arteries has been relegated to the dust bin of history.
It is modern & pervasive concepts of insulin resistance, fostered by overconsumption of carbohydrates & sugar, that has become recognized the evil cause of hardening of arteries.
The idea is to stop filling the body, which is a sponge for sugar, with sugar; so that the body begins to harvests stored fat to obtain energy. The name for the fat-burning process induced by avoiding carbohydrates is called “ketosis”.
Saturated fats are good. Industrial-generated trans fats are bad. The amazing thing about the keto diet is that episodes of hunger are minimal & the amount of food needed to reach satiation is much reduced.
Another concern is hormones.
Sluggish thyroid function can be corrected. Licensed medical doctors should direct pharmacological therapies of “medical imbalances”.
When it comes to thyroid or adrenal hormone “enhancement”, whole glandular substances bought in health food stores might work. I defer to licensed Naturopaths, who have the skill sets to advise about these matters.
Vitamin C, D, & Magnesium are important for musculoskeletal function. Ribose and niacinamide are important for mitochondrial production of ATP energy.
Adequate amino acids, the building blocks of muscle protein, are critical & consumption of meat is advised. Inexpensive bone soup can provide the biochemical precursors of collagen & connective tissues in general.
Healing from Fibromyalgia requires exercising & training the body, the mind, & the spirit. Mindfulness therapies of biofeedback & meditation are productive exercise activities for the mind & spirit.
Passive therapies of Acupunture might provide temporary pain relief, but it is important for patients to become proactive. The most effective physical therapy is one that is undertaken, & a water environment is advised for Fibromyalgia patients.
If pain disrupts effective physical therapy, then opium derivatives (judicious amounts of opiate medications) & Cannabis whole herb medicinals can be used to effectively reduce pain.
In recent head-to-head clinical studies, Cannabis showed greater efficacy than the three FDA approved “Fibromyalgia” drugs: Lyrica, Cymbalta, and Savella
Topical salves made from Cannabis are very effective for musculoskeletal pain. The secret is to open skin pores with hot showers beforehand and/or apply a heating pad over the salve. And you don’t get high.
If loose & subluxing joints are an impediment to physical therapy, then Prolotherapy might be a natural non-toxic way to advance rehabilitation efforts. See: drcabaret.com/wp-content/upl.
Prolotherapy stimulates ligaments to thicken & shorten. Tissue growth hormones are probably involved in the healing process induced by Prolotherapy. See @RegenexxCayman.
Remember that operative efforts (surgical interventions) introduce prolonged periods of convalescence into the rehabilitation efforts & generate periods of time that foster injurious deconditioning of soft tissues.
Hopefully, not sounding unsympathetic: Fibromyalgia patients have two options: 1) lay around waiting years for gene editing therapies or 2) setting up an healing program; including physical therapy.
The idea is to initiate all aspects of the healing program simultaneously. A good place to start is review of stories of survivors at @cfsunravelled.
THE END. Thank you for holding replies because as they come in they seem to disjoin the thread in process of creation.
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