Let's Deconstruct Your Chronic Pain

The core of my focus as a patient advocate is the conditions around which my own health experience centers--hypermobility conditions, neurovascular compression syndromes, craniocervical instability, mast cell activation syndrome. In exploring these areas toward finding answers as to how to keep balance and health for myself, never fully knowing what's relevant and what's not--(how could one?)--I come across a lot in the EDS/HSD and related worlds. I can't promise what I have to offer will be relevant, but if you suspect it might be I'm here to outline for you what I've learned, help you see what might help your own cause, and together find the list of providers, fields, or information I'm aware of that might be most likely to be pertinent.

Here's a gloss on how I think about hypermobility and other predispositions toward complex chronic illness, a.k.a., higher maintenance-needs (think not Real Housewives, but rather Ferrari): There are a great number of ways to be hypermobile. There are a great number of ways to be sensitive. Intersections involving any number of hypermobility and sensitivity conditions predispose some of us (women and those with more female-leaning biology in much greater numbers) to show the world what environmental, dietary, and social factors are out of balance. We are the ones for whom a modified, processed, stabilized, imported, and/or haphazard diet breaks the body sooner rather than later.

We who for any reason are more sensitive to the environment than others need a maintenance plan put in place from the first and knowledgably run throughout our lives. As a result, we often end up knowing ourselves and our bodies in a deeper way than most--which can often be labeled as sensitivity or hypochondria among those who don't understand. We often are forced to become our own experts, researchers, and healers because general maintenance plans and outside experts are by and large absent at the moment, culturally. (This has not always and everywhere been the case!) See Sarah Ramey's The Lady's Handbook for Her Mysterious Illness for a second, 400 page summary on this viewpoint.

In my practice over the past decade I've seen many, many clients affected by these issues. They describe themselves as "medical mysteries," as having "given up hope" or "having to be their own doctors." These cases have intrigued me in part because loved ones reflect the same challenges. Although it shows up in many forms and often needs specialized treatment, the roots of mysterious illness tend to be similar. As an advocate, having been through it for twenty years myself, I'm here to say at least that if any or all of those conditions are with you too you're not alone. Everyone is at different stages in navigating the complexity of all these sorts of conditions. If you need an introduction to the basics or if you need to be connected with some of the practitioners in Santa Fe who currently work well with these kinds of issues, be in touch. If you're by now your own expert and have found people nearby who have been able to support you effectively, I'd love to talk and make sure that those people are on my lists.

Our work together will focus on these principles and strategies--whatever works best given your location, preferences, and needs:

• My work is highly individualized, solution-oriented, and assistive.

Given the context of my work in a number of areas where not even the forefront of medicine has a lot to offer yet, it's sensible to be cautious, curious, developmental, and measured in our work together, whether through bodywork or in advocacy and learning aout your body. While as a massage therapist with only a year of initial training I can't diagnose or treat any illness nor prescribe any solution, I offer close observation, a decade's experience working hands-on, and a great deal of personal experience and research to help you identify what may be worth further investigation with your healthcare team. We discover tools for your particular case as we go as well as applying everything I've learned so far.

• We will work to reduce your chronic pain as efficiently and as far as possible with hands-on techniques if you're near, self-care if you're at a distance, while letting observation inform our overall plan.

I like to work in a highly individualized way, acknowledging the basic biomechanical and physiological principles as they specifically play out in your case. Observing your own body and how it responds to movement, balance, pressure, stretch, and strain, we'll identify a targeted collection of techniques to use in bodywork or coaching sessions together to efficiently reduce mechanical factors in your pain. We'll work to free your body to develop a healthier posture and ease of movement. Although my main bodywork tools include trigger point therapy, a whole-structural focus, and tailored deep tissue massage that safely meets the body on the table, sessions can be wholly different from person to person. To the degree that it is useful and desired I like to explain what I'm feeling and seeing in the body as we work and how that information adapts our work; understanding and coming to know their own bodies better often helps my clients to better work with their pain as well as seek additional care more effectively.

• As we study your body's unique characteristics and needs we will rebuild your habits and self-care strategies to help you maintain better health, greater ease, and more energy for what you love. Deciding what works best for you and dropping what doesn't makes room for our best results--we'll focus on the areas where we can find success by adapting our approach to you as you are, as your life is right now.

People in chronic pain are often moving mountains every single day just to show up, and prioritization is inevitable for everybody. Taking the opportunity to adjust habits and your day-to-day is key to making lasting physical change--but I'm not here to help you overwhelm yourself. Whatever energy and intention you've got in this moment, let's put it to work in small or large ways that fit well with your needs and lifestyle. Our goal is ultimately to help you keep experimenting and finding tools that fit so smoothly into your life that it's all easier and better when they're in use. When we find those right changes, they last.

• As we come to understand the signs that bodywork provides about your health, I will connect you with any other practitioners I believe may be helpful in making further progress.

Through bodywork we can observe signs like adhesion, inflammation, constitutional traits, muscle imbalance, and many more. Your health story gives us far more still to work with in understanding how to get to the right people to help solve further elements of your mystery and how to communicate what is going on for you. I keep a list of quality local practitioners whom I know can work well to investigate as needed and treat at levels that work, focusing on resolving root causes as much as possible. When needed, we can also search together for appropriate healthcare practitioners outside of my current network, information, and other resources.

Let's try working together if you've been looking for this approach. Be in touch to schedule a free fifteen-minute interview, bodywork sessions (rates and insurance billing info are here), or to request any of the classes that I list.

...And what is Patient Advocacy?

I'm often asked this question. The profession itself is still asking. The core of it is this: we are people who are invested enough in the idea of improving healthcare in some special area of interest, for whatever reason, that we choose to live in the complex, professionally and personally risky new frontier of serving as a bridge between healthcare professionals and their relevant public.

Just as the profession continues to explore what Patient Advocacy can be, I'm working to evolve my offerings in this realm into whatever I can best do to help the hypermobility community in Santa Fe grow better local care. Our patients should not be overlooked for decades, one after another. Nor should they be circumstantially forced many years in and unnecessarily progressed to multiple, still unconnected multisystem diagnoses, to work out with legal aid how to get insurance to pay for care in another state with all the expenses, inconvenience, and--for the truly ill, often also real danger--of travel. There should be care capable of connecting the dots here in Santa Fe.

Back to the general question, ethics are key for advocates. Having vested interests, we generally know firsthand how risky the conditions we aim to help navigate can be. Many, like me, have other professional roles with which our "spare knowledge" of the medical realms must be balanced to protect our livelihoods. But standing down is not an option, because there's a critical gap in healthcare.

The gap that must be bridged is this: There are researchers and medical care providers who do know enough to help those of us whose conditions are on the margin of medicine. They're few and far between geographically. Our conditions are underserved in the mainstream. It takes a serious, special effort to find the right providers to help not just piecemeal with small areas of symptoms while perhaps triggering others and sometimes inciting dangerous trajectories overall. Meanwhile, we're sick. We're medically, functionally, and financially compromised. We may have lost love, friends, and family over the perceived inability to manage "the normal things of life"--because what we have to work with is not normal. Being disbelieved by loved ones and healthcare practitioners alike can deepen the gap. It's especially difficult sick, underfinanced, and often alone to do the work ourselves to find the aid we need. Advocates are here to form a bridge. We have to watch our behavior and educate our clientele to understand very clearly that we are not medically trained. But we've seen enough of the road to help carry you to the nearest bridges. If we can even help get you to the ballpark of right care, there are professionals who will be able to tell "p" from "q" and wrap you into a more effective network of care. Patient Advocates who work in the pre-diagnostic space as I do are here to help create awareness around the conditions with which we serve and thus often hear the long stories that have not yet been told in full--of navigating 10 or 20 years, dozens of tests, a hundred doctor visits trying to find answers and having either none still, or sometimes a long list of diagnoses with no idea why one should have been so unlucky

Once you have your diagnosis, patient advocates are also educators. The kinds of conditions that fall through the cracks are often complex, multisystem conditions. Doctors working in the standard model do not have time to teach patients everything that needs to be known to navigate well at home, heroically devoted as they may be. We're here to direct clients to the books they've collectively written, the websites they've built, and the myriad human experiences of the same conditions that have been recorded or relayed and give an idea of the range of what one might experience and how people are addressing it effectively. These notes provide further background as one masters the realm of being an effective patient. Our discussions provide questions for those often too compressed, precious, and high-stakes doctor visits. As I often hear, the chance to honestly express ones experiences without fear of yet again being betrayed with disbelief over the inconvenience of unexplainable symptoms provide comfort. As much as we may have thought we're alone with our strange symptoms dismissed or overlooked year after year by family, friends, often even doctors, and sometimes ourselves, the next person who is experiencing the same may be only two doors down; undiagnosed, unaddressed chronic illness is disturbingly rampant, it turns out. Our commonalities are a strength toward finding resources.

As with most advocates, this mission is personal for me. I've lived many of the challenges of the conditions of those I serve. When I lie awake at night there's a good chance I'm asking myself: "What more can I do to improve care for my cohort here in Santa Fe?" When my clients go to the hospital, they're describing symptoms I navigated without healthcare, broke enough to have sometimes lived in my car, fifteen years ago. In the worst stages, the automaticity of my breathing was broken. There were nights I went to be not knowing whether I'd wake up, and my trust in and access to "the system" were both so broken I didn't know enough to engage. With decent cause, I judged my own symptoms would be dismissed. Years later when I had healthcare available, they were. I still have clients who report that they did in fact just have their symptoms pronounced psychological in the ER while there to address an MCAS flare or epileptic activity related to dural rupture. I'm not trained as a doctor. I'm not used to the idea that those I work with and care for may disappear never to return because of one of these episodes. But working as an advocate has become both a moral and an intellectual imperative. I've seen firsthand many of the ways in which it becomes complicated to find a way to live without a social safety net. I have survived some really rough episodes and am in general so much better now that I could not bear to not do this work--to try to find out what has allowed me to move both up and down the ladder of functionality and whether any of those principles can be used to benefit others. It's funny, though... this is a track that I've been on for a long time, not always knowingly from the inside. Looking for direction in college years and in the aftermath of some extreme events that overturned my value system and sense of self just as my health was descending (probably no coincidence in the onset....), I held onto the dream of studying medicine as a means of keeping myself alive. It's far too late to consider certain tracks; I'm probably back on my way to school eventually but I'm not sure what for. Chronic illness cast my die in the direction of medicine and it also lost me one set of futures, but I'm increasingly satisfied to take what's left. It's possibly somewhat unique to come so far back to health after having gone so far into unwellness. It's possibly of value to my cause.

However, I want to see this story change--young futures ripped away and replaced with uncertainty. Those with predispositions toward complex chronic illness are guards of the boundaries of human condition. We feel first what others tip into through convergences of fate. Witness what has happened with Covid-19. Suddenly research on proper functioning and disorders of the autonomic nervous system is a high priority, as it well should be. Those of us who have been dysautonomic for decades and looking for answers suddenly have a lot of company. Serve the boundaries and we serve all. The middle-way is found by knowing where the edges are. Studying the boundaries isn't enough, but it's critical, and it's often a better place than average to find contrasts that light up important details. Better care for all is served by studying the boundaries. I want to see Santa Fe a hotspot for diversity care--for care of chronic, genetically predisposed and environmentally enforced conditions outlining the breadth of human experience, the margin. Whatever I can do toward that end, that's what I'm doing as an advocate.

Mild hypermobility is extremely common--at least one in ten are "double-jointed" or a little loose. It's a benefit and a point of pride for athletes such as dancers, gymnasts, and yogis to move easily and deeply. Some people are so hypermobile that it's a serious problem, however. It can cause chronic dislocations of the neck, shoulder, hips... any joint in the body. Usually many joints are problematic in the same person at least from time to time--sometimes cyclically, sometimes chronically.

The name hypermobility is a poor fit for the breadth of its import, as joint hypermobility itself is often the least problematic concern--and sometimes not really an issue at all, while other tissues than joints are still affected. Collagen deficiency syndromes occur as a result of a vast variety of gene mutations, which singly or in combination can affect one or more different types of body tissue--not just joints. Issues that regularly co-occur include:

• a sensitive gut

• chronic fatigue, headaches, migraines, muscle tension, joint pain, and/or other pain

• immune challenges such as mast cell activation syndrome, histamine intolerance, food and drug reactions, allergies, environmental sensitivity, autoimmunity

• neurovascular compression syndromes such as median arcuate ligament syndrome (MALS), superior mesenteric artery syndrome (SMAS), nutcracker syndrome, gastroparesis or other gut motility issues (frequently causing pain, chronic constipation, etc.)

• dysautonomia, POTS, dizziness, or undiagnosed fainting spells

• anxiety, depression, and other mental health challenges

• unusual scarring or slow healing from wounds or after surgeries

• Chiari malformation, tethered cord

• endometriosis

• lipedema

• ... the list goes on.

This is not your average person's list of symptoms. Many are not well known, particularly in the outskirts of civilization, away from medical and academic centers. For those who are affected with only one let alone a collection of the above it can be very hard to find effective treatment. Few have had the package neatly tied up with a diagnosis such as Ehlers-Danlos Syndrome that helps to explain why any number of uncommon complaints chase them through life while others seem to live so much more comfortably.

Although estimates posted by the NHS on prevalence of problematic levels of hypermobility remain as low as one in five thousand people, in research circles estimates continue to grow. The numbers vary so widely I'll have to leave you to do your own research if you're curious. What I believe strongly by now is that the full spectrum is so wide, prevalence so high, and physiomechanical impacts so significant that we will only be able to optimize health for the individual when we've understood how to deeply incorporate the offerings of this lens into healthcare, prevention, and wellness plans.

Through having affiliated with the EDS Society, I've now worked with and talked with many diagnosed with Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder. I have also trained with the Ehlers-Danlos Society in Patient Advocacy for EDS and HSD. Both training and experience confirm that hypermobility in all its forms remains vastly underrecognized medically and socially and that collagen differences explain differences in function that frequently alone or compounded with other health factors create the conditions for all the above mysterious medical complaints to arise--regardless of whether external hypermobility is evident.

Really, my view has become that medicine broadly speaking is missing an entire paradigm: simply recognizing the gross, tangible qualities of the body, how they all intersect, and their mechanical and physiological implications. Medicine has advanced to perform miracles daily, but it has lost the vocabulary of touch and interpretation to great detriment. Because of that, those who are in the nearer end of the hypermobility spectrum struggle far longer to find appropriate care than more evident cases of EDS--who still tend to search for diagnoses for over a decade. This is unnecessary. Handling the extremes should be informing the care of the middle cohort, and would if we gave touch back its place with just a little more awareness of the now so-accessible world of variety. So much information about the body is available so readily. We should be screening. The full mobility spectrum with all of its complexity should be understood in at least the simple way that clinicians working with it do as a central, observable phenomenon that shortcuts us to not only answers, but preventive and maintenance measures--a more accurate and useful, individualized care manual for the body than the collection of general advice... perhaps even evolving into what we need more--a true cultural appreciation of the value of diversity and a deeper, more connected appreciation of the body, the environment, and life itself.

Here's exhibit A on why I'm so passionate about invisible illness, why I work in advocacy. I myself was very unwell for two decades. While there were numerous strong factors setting me up for this and making it hard to escape, I now do very well. I had a great deal of help, but the legwork in understanding any of the disparate pieces of my condition and how to see their underpinnings together as pieces of myself that needed the right support and environment were up to my own labor while ill. This is exactly the story I hear from most of my clients, wherever they are in their timeline.

If the care manual were made for hypermobile bodies, especially if the culture shifted to embrace the proactive wisdom of individuality, we'd see a better world. Three quarters of adults in the U.S. are chronically ill. In adults under 35, half live with at least one chronic condition, the most prevalent of which we know are largely preventable. Although we know these conditions are preventable, we've not directed our culture and our system of living to do the job of preventing them. Those numbers only include the folks who have diagnoses. In the world of hypermobility, the more prevalent outcomes are conditions that often take many years to name--autoimmunity, mast cell activation syndrome, endometriosis, dysautonomia. Talents and years are being wasted. We are canaries in the coal mine. Redesigning our lifestyle to meet the needs of our bodies with their tendency toward initially subtle but ultimately often unlivable conditions will improve conditions for all. I love Sarah Ramey's The Lady's Handbook for her Mysterious Illness, which speaks on all of this.

I'm determined to help those who are undiagnosed or so-far dismissed and help them find medical care appropriate for their so often invisible and misunderstood or unrecognized conditions. I continue to train with The Ehlers-Danlos Society, The Mast Cell Disease Society, Project ECHO, and other organizations relevant to the needs of the hypermobility and mystery illness communities. I will pursue Board Certification in Patient Advocacy late in 2025. I am working to build a local network of healthcare providers who know these areas. (See some favorite information resources and local trusted providers listed here.)

I'd like ultimately to help provide resources for those in other medical mystery categories, and this group may grow into that. The tradeoffs of focus and fit and the limitations on what I'll be able to pointedly offer myself are important to consider, but over time I'd like to be linked with others who have knowledge and passion in other specialties. That might offer another route to creating a wider service. Be in touch if this is relevant for you and you want a chance to speak on how it might develop.

Why reference zebras? Here you go.

Financial Accessibility

You'll notice that my regular prices are on the high side; Santa Fe is a high cost of living area. At present the best means I have to offer lower cost care for those who need it amidst the increased costs of living and working here myself is to ask that those with the means to do so participate in care at a rate equivalent to what they'd pay for the higher-end goods and services they find freedom to enjoy in other parts of their lives. For those who need it I'm happy to reduce my rates as much as I'm able--please ask if you need that support.

Santa Fe Hypermobility Resource Group and all classes I host are intended to help as much as possible to fill the gap in appropriately informed care and guidance for those I serve. Through mutual education and community, these free and low-cost opportunities also make available unmatched, guided self-education in healthy comparison, context, and self-recognition. Much of what I've learned from working with many hundreds of bodies is generally decently represented among the bodies who show up for a small class. Training your eyes to see difference is a great way to grow some love for your own uniqueness, which people often struggle with even while embracing it in others. We can often best see ourselves when we take a moment to look around and understand where we fall within the rainbow of human traits.

Time, Sensitivity, Shyness, and Other Access Challenges

While hands-on bodywork is a great aid in the physical care of the body, learning to bring it home offers far more potential than what we can do together in an hour here and there. My most important role is that of a mirror. My second most important role is as a teacher. How rare is the opportunity to work with someone who will reflect back in detail what they observe and make that knowledge accessible so that we can turn it into methods and strategy for constant application? Those are the resources I've found most potent in caring for myself, and I aim to share them with you.

• I work with all kinds of bodies, and bodies are bodies--unique, perfect in their uniqueness. The rule is: if you feel uncomfortable, share it. We'll find a way to make our work easy and useful and good for you or we'll work to find you a better therapist.

• We can work with you fully clothed or modestly draped, as you prefer.

• We can send you home with loads of things to try so that you're not coming back as often.

• We can meet by video for advocacy session if that works better than coming in person.

ADA Access and Environmental Needs

Please share any concerns prior to arriving and I'll do my best to accommodate any special needs.

Physical: My office is fully ADA accessible.

Light: Natural light is abundant. Artificial light isn't used in the workspace during daytime hours. Lighting can be adjusted to your needs somewhat, but bring an eye-mask or sunglasses if you're highly sensitive to bright light as we work under a window.

Sound: The office tends to be very quiet.

Odors and Chemicals: ADA guidelines now recommend keeping clinics scent-free. While I don't have full control of this space, I do my best to accommodate any needs that are brought up. The acupuncturist in the adjoining offices uses moxa and infrequently liniments or essential oils. I occasionally use liniments or essential oils as well, but can avoid them prior to your appointment if requested. The shared space and offices are cleaned mainly with gentle, natural cleaning products.