Athlean-X--I've stopped apologizing for his sense of humor--laughter is good medicine, of course. This choice and application of exercises are always efficient and effective
Jeannie Di Bon--An awesome resource in movement therapies, especially for those who are hypermobile. "The Zebra Club" app, articles, and many other resources are available here too.
I'm still looking for a good place to send you! There are a few notes of my own making here.
Ray McClanahan--a podiatrist with some content on restoring healthy foot shape--he also created and sells silicone correctors for toe position.
(I have no affiliations of any kind with any companies mentioned or otherwise.)
Among my many soapboxes is the thought that people should be shod in shoes that are shaped like feet. I've seen too many elders with feet that have been reshaped by shoes that suited the fashions and expectations of their day; the reshaping often leaves feet painful and dysfunctional, which greatly impacts their efficacy in their good work as a foundation for the body. We can recognize so many outdated trends as cruel. Let's just skip ahead a few years--shoes should not damage our feet.
Individual needs vary greatly, but below I've listed a few brands whose respect for the architecture and function of the foot I generally appreciate. Principles I care most about are:
a general shape matching that of the relaxed, working foot (shapes vary widely, so you'll want to find brands that happen to suit you)
a toe box that allows the toes to splay comfortably (this is probably the hardest feature to find)
"zero drop"--no elevation of the heel compared to the forefoot
enough padding to suit the health and comfort of the user as well as appropriate to the surfaces they live on
a heel that fits well--this can be hard to find when looking for a wider forefoot
an individually correct choice with respect to arch support. I find having much arch support at all leaves me uncomfortable to painful and fatigued by the end of the day whereas barefoot style shoes are comfortable for weeks on end. I haven't checked in with a professional on this, but I feel that some of us need less support than is easy to find--the arches of our feet are structured as springs and they need room to play. The feet have to be strong to do this, however, and I've been moving toward barefoot styles of shoe for every activity over many years so assume that has strengthened my feet a great deal.
The barefoot brands are bringing us a lot of great options. One gap I still see is in dress/work shoes in suitable construction and sized for women with large feet like mine. We need more options among shoes that can go under the radar of social expectations for those activities--often the concern among working women trying to find better shoes is that they can't show up to work in flats, let alone athletic shoes in certain work environments. I refuse to believe that we need to play to the trends for those activities to look good, but we often do need to fit in and it would be nice to actually have this as a place to play as most Westerners do--the options are just too limited. With the added limitation that women with feet larger than size 10 are out of luck with most shoe companies, it can be hard to find shoes one really wants to buy. If I had enough room for about five careers at one time, opening a shoe company would rank around number five. Until time bends for me, I'll content myself to list some better options here.
Resources
The Foot Collective--a lot of good resources including a shoefinder list and training videos
A list of barefoot style shoes ranked for use in correcting bunions
Brands
Altra--not as good as they used to be in terms of ergonomic design, and they now play heavily to the prevailing trends aesthetically which as a shoe design future zealot I find a backward step--but they're well cushioned unlike many foot shaped shoes and so still one of the best shoe options for living on modern hard surfaces for people who need more cushion
Astral
Merrell
Xero*
Be Lenka*
*I haven't these brands but they look like they meet a lot of my criteria
Movement and Creativity Podcast--free, gentle, remote training in podcast form on posture improvement and finding ease in posture and daily motions
Soap and Supply, Santa Fe, NM--an awesome local, small business carrying body care and cleaning products mostly in bulk so that you can refill your own containers and reduce waste. Anyone with low tolerance for scents or other ingredients in products will likely find a lot more suitable options here than are available in most places.
Hypoallergenic Massage/Body Lotion Recipe--this is the recipe I use for massage lotion. I haven't yet worked with anyone who has reacted to it. It's far easier on linens than most products. And it works really well for everything from gentle circulatory work to myofascial release.
Accessible Book: When Food Bites Back
Textbook: Food Associated Autoimmunities: When Food Breaks Your Immune System--Aristo Vojdani, Elroy Vojdani
Textbook: Neuroimmunity and the Brain-Gut Connection, Aristo Vojdani
Alessio Fasano has numerous books and interviews out that cover recent learnings around celiac disease, gluten intolerance, tight junction disruption, food reaction, and related topics.
It looks as though much evidence is coming out that sugars and artificial sweeteners disrupt tight junctions of the gut and elsewhere. If you're looking to understand the mechanisms of gut dysfunction and healing, this is worth a search.
Video interview: The ROOT CAUSES Of Allergies, Why They Get WORSE & How To Get Rid Of Them
Video interview: An accessible interview with neurologist Stasha Gominak on her approach to rebuild gut health using supplementary Vitamins D3 and B complex. Her website offers information and a lab testing-driven protocol.
Science paper: Advances in the physiology of gastric emptying
(I have no affiliations of any kind with any companies mentioned or otherwise.)
Microbiome related lab and products: Microbiome testing and personalized, custom supplementation subscription service: Viome-- A client finds this service helpful amidst managing Systemic Mastocytosis
Cyrex Labs: reputedly innovative testing relevant to food sensitivities and autoimmunity, coming from Aristo Vojdani's work
Four page PDF: SIGHI histamine intolerance food guide--this is one of the best consolidated resources I've found on how to manage a low histamine diet, the specific categories of caution, and in brief the theoretic details needed to understand how to use the information well
One page PDF: My own low histamine diet guide: Dealing with my histamine intolerance through diet alone eliminated not only my multi-day per week migraines but also for the most part my undiagnosed symptoms of POTS, dysautonomia, sleep apnea, and acne. I missed all these improvements for years even after first hearing about histamine intolerance--in part because the information I found at first glance on reputable medical sites was cursory, oversimplified, and indicated neither the complexity nor nearly the full list of even the most direct underlying principles of the problem. I already avoided or was careful with everything on the food lists. These sites gave me no new information and so were easy to dismiss. And without a diagnosis of histamine intolerance for years afterward (I suspect I've actually had MCAS, not just HIT) there was nothing to draw me back to the question of its further relevance. Even when I received a diagnosis of histamine intolerance it took a blessed accident of fate to basically solve the problem and then a very deep dive to refine and understand the solution. So I have felt there is a gap in at-a-glance, principle based information on how to manage histamine intolerance, mast cell activation disorders, and mast cell activation syndrome on the dietary level. This chart covers what I think I've come to understand toward managing my diet while histamine intolerant. It provides gestures toward my next project, which is to understand how to heal the gut so that it can better handle a wider range of foods. While that has been naturally happening as far as I can tell, I'm beginning to find information that seems promising toward helping healing along.
Succinct & accessible article: A summary of functional approaches to treating mast cell related conditions
Interview between Tania Dempsey, MD and Jill Carnahan, MD on Jill's experience of MCAS, Crohn's disease, chronic severe exzema, breast cancer, mold toxicity, and more
Accessible video summaries: Dr. Rajsree, MD thoroughly summarizes histamine intolerance and separately MCAS
Video lecture: Nina Bailey, PhD on Histamine Intolerance
Video lecture: Dr. Tania Dempsey speaking on MCAS. Dr. Dempsey specializes in treatment of MCAS, Lyme, and complex diseases. Her blog and podcast cover topics and questions rarely touched elsewhere.
Abstract only or meet paywall for science paper: Diagnosis of mast cell activation syndrome: a global "consensus-2"
An idea under construction: I'm keen to put together a test kitchen where people can come to learn to love a whole food, plant heavy, seasonal, colorful, freshly prepared diet. One offering will be guidance managing the habitual and practical changes appropriate for MCAS, gluten intolerance, and other diagnoses that force reconsideration of diet. Dietary factors clearly play a central role in many 21st century illnesses--things that humanity has not really struggled with until now. I believe I've seen evidence that diet can also play a central role in relieving chronic pain. I don't think that's controversial. I suspect we'll also find that low histamine and anti-inflammatory diets are a valuable means to temporarily reduce symptoms of many complex conditions by reducing the overall level of oxidative stress, ideally while building the body's capacity to handle higher stress as needed or desired. This suspicion is largely based on personal experience and wider observations, but also reflects general research and a discussion with altitude medicine doctor Javier Seufferheld covered here under "Altitude and Hypermobility." In any case I'm looking for partners in this project who can better stand behind their information in these areas than I can myself with little more than experience to offer. Contact me if these offerings would be of interest.
An amazing list of science papers: on mast cell related topics from a central researcher in that area--many links made with autism
Science paper: A Puzzling Mast Cell Trilogy: Anaphylaxis, MCAS, and Mastocytosis
Science paper (paywall): Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases
Science review: Association of mast-cell-related conditions with hypermobile syndromes: a review of the literature.
Video interview: Dr. Lawrence Afrin speaking on MCAS with Ehlers-Danlos Syndrome
Interview between Tania Dempsey, MD and Jill Carnahan, MD on Jill's experience of MCAS, Crohn's disease, chronic severe exzema, breast cancer, mold toxicity, and more
Article: NHS Overview
NCBI Article: POTS and hypermobility
Article: connections between POTS and Mast Cell Activation Syndrome
Audio Interview: Optometrist Dr. Diana Driscoll speaking from personal experience and research on POTS, Ehlers Danlos Syndrome, vagus nerve related organ symptoms, supplement support for the vagus nerve and parasympathetic nervous system, high intracranial pressure relating to POTS, gastroparesis, optic nerve issues, shortness of breath. Also, Diana Driscoll's clinic: POTS Care--a POTS treatment center in Texas that can treat remotely by having your local providers do any needed tests
Science Paper: Maternal posture-physiology interactions in human pregnancy: a narrative review--a lot of intersections here with items of interest in EDS, HSD and related conditions including POTS and intraocular pressure
Science Paper: Orthostatic intolerance as a potential contributor to prolonged fatigue and inconsistent performance in elite swimmers
Audio Interview, as listed elsewhere: Optometrist Dr. Diana Driscoll speaking from personal experience and research on POTS, Ehlers Danlos Syndrome, vagus nerve related organ symptoms, supplement support for the vagus nerve and parasympathetic nervous system, high intracranial pressure relating to POTS, gastroparesis, optic nerve issues, shortness of breath. Also, Diana Driscoll's clinic: POTS Care--a POTS treatment center in Texas that can treat remotely by having your local providers do any needed tests. Dr. Driscoll claims her supplement is useful in managing gastroparesis, other gut motility disorders, and generally issues caused by low supply of acetylcholine at the post-ganglionic vagus nerve. This note is here for your research only--not as a recommendation. I haven't tried the product and would ask a doctor before doing so; at least one ingredient carries warnings in some countries.
my own open question: following up on cues from Drs. Driscoll and Gominak, note that caffiene and nicotine bind with acetylocholine receptors. Do caffiene and nicotine dependence indicate the possibility that these substances are being used to supplement function in that system?
Advocacy group: https://www.dysautonomiainternational.org/
Advocacy and research group, United States: The Ehlers Danlos Society--I can't highly enough recommend their events, which include learning opportunities hosted by doctors who are expert in working with EDS and its whole assortment of associated conditions. Many of the events can be accessed for free. There are many, many hours of recordings of past events here.
Advocacy and research group, Canada: EDS Foundation
Advocacy group, UK: Ehlers-Danlos Support UK
Advocacy and research group, United Kingdom: The Hypermobility Syndromes Association--focused on the broader spectrum of hypermobility disorders
Information group: EDS411--a large, growing, searchable database of information resources on EDS and HSD
Info exchange hub: Cort Does Science--subscription-based and free newletters, instagram, etc. on science news relating to EDS and related conditions by a PhD researcher with EDS
My own article: Some observations I've collected on bodywork and the wide spectrum of hypermobility and related challenges
(I have no affiliations of any kind with any companies mentioned or otherwise.)
Product: This neck brace helps one client to wake without pain from sleeping with their neck deeply rotated.
List of products: YouTube, web, and instagram content creator Jenni from Chronically Jenni has compiled lists of tools that she finds helpful in managing her life and body with severe hypermobility
Product: One hypermobile client finds this bed extremely helpful for back pain and sleep quality
YouTube channel: Izzy--friendly and accessible videos on Ehlers Danlos Syndrome from a Genetics Counselor with hypermobile EDS
YouTube, web, and instagram content: Chronically Jenni
Science Paper: Hypermobile Ehlers–Danlos syndrome and disorders of the gastrointestinal tract: What the gastroenterologist needs to know
Video lecture: Hypermobile Ehlers Danlos Syndrome during pregnancy, birth, and beyond--a video talk by Sally Pezaro, an academic midwife researching in the space of EDS and gynecology. Her research is recommended with excitement by doctor lecturers working with the Ehlers Danlos Syndrome Society. Here is a link to the Open Access paper she mentions, describing childbirth experiences of women with EDS.
Book: Your Eyes and EDS, Diana Driscoll, OD, FAAO
EDS and autism are frequent companion diagnoses--I'm not far into digging up specific resources. Ask me for more info if it's of interest and maybe I'll have something new.
Acetylcholine, caffiene, & nicotine
Audio interview: Dr. Diana Driscoll speaking on experience learning to treat gastroparesis, POTS, and many other symptoms after a virus brought upon onset
NCBI summary: Physiology relating to Acetylcholine
Cellular responses and functions of α7 nicotinic acetylcholine receptor activation in the brain: a narrative review--wide background info on the vagus nerve function related cholinergic anti-inflammatory pathway and various other functions and details relating to acetycholine.
B Vitamins
Accessible web article: Folate-Dependent Hypermobility: Researchers at Tulane's EDS Clinic Look Into New Possible Mechanism For Hypermobile EDS
Medical hypothesis paper: Folate-dependent hypermobility syndrome: A proposed mechanism and diagnosis
Video interview: General, accessible info on implications to B vitamin processing efficiency in those with certain MTHFR variations by masters level human biologist Gary Brecka. He argues for using methylated B vitamins if the variations are and avoiding folic acid and cyanocobalamin.
Vitamin D3 and K2
Video interview: An accessible interview with neurologist Stasha Gominak claiming that 1) raising Vit D levels can immediately improve chronic symptoms of pain and sleep disorders, 2) temporarily supplementing additionally with B complex can help restore a healthy gut microbiome, synergistically further improving symptoms and reducing the need for supplementation. Dr. Gominak's website offers a lab testing-driven protocol and one-to-one support. She does note there in FAQs that methylated B complex should be used if methylation function is compromised; MTHFR is elsewhere proposed as a causal link for most hypermobility.
Video presentation: General info from Sten Ekberg, doctor of chiropractic, on Vitamin D need, tolerance, toxicity, optimal blood levels, and dosing.
Functional Nutrition Therapeutic Strategies
Video interview: An accessible interview with neurologist Stasha Gominak claiming that 1) raising Vit D levels can immediately improve chronic symptoms of pain and sleep disorders, 2) temporarily supplementing additionally with B complex can help restore a healthy gut microbiome, synergistically further improving symptoms and reducing the need for supplementation. Dr. Gominak's website offers a lab testing-driven protocol and one-to-one support. She does note there in FAQs that methylated B complex should be used if methylation function is compromised; MTHFR is elsewhere proposed as a causal link for most hypermobility.
Medical hypothesis paper: A novel therapeutic strategy for Ehlers–Danlos syndrome based on nutritional supplements. The supplements under focus here are calcium, carnitine, coenzyme Q10, glucosamine, magnesium, methyl sulphonyl methane, pycnogenol, silica, vitamin C, and vitamin K
An overview of medical recommendations on diet and hydration: Nutritional Implications of Patients with Dysautonomia and Hypermobility Syndromes
I can direct you to several prolo and/or PRP therapists in Santa Fe but haven't found specific high quality info yet relating specifically to hypermobility. Here's some general, accessible info from a local PRP therapist and links to research papers he has collected.
Science Paper: Orthostatic intolerance as a potential contributor to prolonged fatigue and inconsistent performance in elite swimmers
Science Paper: Joint Metabonomic and Instrumental Analysis for the Classification of Migraine Patients with 677-MTHFR Mutations
For those of us living at or visiting moderate altitude and higher, altitude can reduce our capacity to handle other oxidative stressors such as dietary factors, poor sleep, etc. See here under Altitude and Hypermobility for some notes on a conversation with Javier Seufferheld, MD, and contact him for help creating a functional nutrition approach specific to managing altitude under the additional strains of hypermobility.
Science paper: The Oxygen Cascade from Atmosphere to Mitochondria as a Tool to Understand the (Mal)adaptation to Hypoxia
Science Paper: The Possible Importance of Glutamine Supplementation to Mood and Cognition in Hypoxia from High Altitude
Article: Harvard Health Publishing article naming links between fluoroquinolone antibiotics such as Ciprofloxacin, Levoquin, etc. to severe adverse events in those with EDS and Marfan syndrome. Among those I see with EDS or likely diagnosable, it is more common than not to have a deep family and personal history of medication reactions. In December of 2023 Cipro was pulled from US markets. Levoquin under the brand name has also been voluntarily discontinued by the manufacturer. However, generics are still used in the US. Other drugs in the same family are as well. It would be wise to both ensure that your doctor is watching out for any possible risks specific to your hypermobility condition and to do some research yourself if you're stuck getting medication outside of their care while traveling or such. The Ehlers-Danlos Society is the first place I'd look for information on what options might be safer--I'd ask on the helpline to be connected to useful resources.
Link to registry: I'm really excited about this project. The Ehlers-Danlos Society has created a global registry through which people with known or suspected EDS and HSD can conveniently be connected with studies and surveys to take part in. Many of us are undiagnosed for conditions related to EDS and HSD because of current challenges in diagnostics and awareness. Many are undiagnosed because of weaknesses of the larger healthcare system as it relates to chronic illness; obtaining ideal healthcare is even harder while chronically ill. Whether or not you have a diagnosis, your symptom data can help to fill out the picture of what EDS, HSD, and differentiable illnesses actually are. The experience of people affected can inform the literature on effective care as it develops. For areas of the spectrum that are not yet well defined genetically or otherwise, broad banks of info will help researchers to understand what all we're dealing with and eventually the mechanisms through which we will be able to better mitigate symptoms.
Link to US FDA medication/device adverse event reporting system: Those with connective tissue disorders often react to numerous medications. To help develop our understanding of what drugs are potentially less safe for whom, you can report side effects and adverse events to the FDA here, along with any known health conditions. There's room in an "other" box to include provisional diagnoses or personal observations about hypermobility, which may be useful to those who remain undiagnosed.
Science Paper: Caution, “normal” BMI: health risks associated with potentially masked individual underweight—EPMA Position Paper 2021
Organization website: Fascia Research Society--for top quality info on how connective tissues work and emerging therapeutic methods
Link to free, accessible materials: Seattle area's Connective Strength offers free, downloadable booklets covering these areas from a connective tissue disorders perspective
Santa Fe and Albuquerque, NM area healthcare provider list: My own list of trusted local, virtual, and remote healthcare providers plus some support and information groups