Complex Chronic Illness Advocacy

I deeply want to see care and recognition of complex, chronic illnesses improve.

The motivation to help with advancement of care in these areas is highly personal for me.

I was once a competitive athlete and straight-A student. Something gradually changed.

For five years I couldn't read. For fifteen years it hurt to move. I had migraines and vertigo 3-5 days a week for months on end, off and on through a decade.

There's much more to tell if it matters, but in short, I've come back to life. Can we help you too find answers and improvement?

A simple diagnosis paired with a lot of personal work to figure out what to do with that information finally made all the difference to me. I am generally not in pain now--not at all. The razor-thin edge I once walked to try to stay out of pain has become a sidewalk. I have to be careful in a number of areas lest I still fall off that sidewalk, but in general I can stay out of trouble. I live within certain limitations, but I absolutely have my life back.

It turns out it's not just me. Chronic complex illness has become a raging epidemic. I've seen family struggle with the same confounding breadth and changeability of symptoms for decades without any answers. Friends too. I once thought it was rare. The more I read, the more I realize that many, many people are on their way to these conditions. Many, many people are already there. The answers are finally arriving to science. I'm thrilled. But I was late to the party. My friends and family and clients have been too, almost without exception. Mainstream medicine is late to this party. But there are answers arriving fast and there are people who focus on finding them and putting them together into individualized solutions--ongoing experiments tailored for one person and their unique presentation.

No one needs to struggle for so long as most of us are still doing. I want to help speed the answers into mainstream medical care. That's a project. It'll take a while and a lot more people than me. Thankfully there are many who are working to make it happen. But I still want to see others get better faster.

So, I'm putting myself out there where given my extremely limited scope of practice it's very complicated to be. I ain't a doctor. I'm a massage therapist. We have a year's initial training. We do not diagnose, treat, or prescribe. I literally couldn't read anything more serious than an entertainment-style magazine article for five years in the period where I dreamed of medical school, so I instead do some of the simplest work we license for, alongside medicine, hands-on, doing my best to help with pain. Know my limitations in advance, and I do repeat them often because this boundary is important.

On the other hand, by now I have more experience than most doctors in the felt-side of sickness. I know what that's like and what it's worth to make even small gains. As for additional training, I now have a long history of personal experience with mysterious symptoms, no solutions, then finally a diagnosis and the right odd diet plus the right growing combination of approaches to be rapidly improving everything. I claim all of this experience as my right to work in the advocacy space. I want you to check everything I say with your healthcare team. I know just how wrong I can be, and at length. But I am obliged by having made it through to such a better place to find a way to help others despite all limitations.

Centrally, I want you to feel resourced in ways that are necessary at present in navigating complex, chronic illness:

• to push back when you're being pushed away with inadequate answers

• to understand how very much you're not alone

• to know the underlying, simplified picture of the roots of many complex, chronic illnesses

• to find the medical and adjunct practitioners who understand these conditions well and can help to make a difference

Medicine's approach needs to evolve too; as things stand, complex chronic illness and its precursors are too often missed in early stages.

I need to share what I've learned because I'm so, so done with hearing that others have been through the same decade or two or three that I have been through trying to figure out on their own what is going on with their bodies because conventional medicine hasn't had any answers. I'm here to hear it--come tell me, but then let's get you to the right kinds of people to look in an appropriate way at complex chronic illness. This is why I work as an advocate. 

This was my own experience with chronic illness and medicine:

I was told I was anxious. That was clear; in fact I announced it upon entering. I was upfront about the traumas I knew somehow played into various symptoms. I was there to see the doctor to have her help weigh out whether there was more going on.

I was years past the worst of it when I finally had access to regular medical care at all. I had improved greatly on my own by continually toying with my diet, with attention to the posture and patterns of my breathing, a thousand other things. But at various stages of my fifteen most unwell years I was experiencing migraines through much of the week, unpredictable episodes of shortness of breath, gasping to wakefulness in the night, deep daytime fatigue for weeks on end, chronic widespread myofascial and nerve pain, intense pain in certain joints, and so many more symptoms--always rotating, always off and on. At the stage when I entered conventional medical care for the first time, I was so much better than I had once been, but never well.

I had spent years underresourced, chronically ill, without health insurance, seeing naturopaths infrequently when I could afford it but benefitting from those brief engagements. By the time I had health insurance, I was disillusioned with how much it had cost to move piecemeal up a gradient, adding supplements here and there that I could never afford longterm. I'd improved, but I never knew what was happening. I was grateful that I'd surely, finally be finding black and white answers which I could then go learn all about and really get to work doing my best to make the most of what was left of me. My main quest at that point was to understand what had happened years before, whether I should expect it again, and whether I could do anything further to try to avoid it or to improve my outcomes. Improving further would be great but surely the more potent locators for what was going on in the present would be to look at the extreme periods of the relatively recent past. These questions, the major symptoms, and the clear involvement of trauma were about all we covered in the usual fifteen minute appointment.

Having no real experience with conventional medicine, basing my approach on the history-focused approach of naturopathy, I supposed it was all what we were there for. I'd never seen the rule book for appointments with conventionally trained doctors. Answer two to five questions. They listen to your heart and lungs. They give you a diagnosis or a lab order or a referral. That's it, and let the poor doctor go; she's very, very busy!

Until I was around 18 and began the fall-off-a-cliff into chronic illness I was quite well. I had mainly only been to the doctor for sports physicals, and a broken toe, something simple here and there. Quick and simple was fine. I had no idea how streamlined and processed the conventional medical approach had become, even where it simply can't be.

This first appointment earned me a label in my chart: "quite a historian." Over a decade later I shake to recall how much the insobriety in which that note was made has cost me.

I understand the comment. A game in high school labeled me "Dickens." My dad laughed. He was always trying to correct my tendency to run-on sentences. The world doesn't tend to appear in black and white for me. Detail is where everything is. Between that and the anxiety I absolutely understand the comment. I had feared all those years going through the worst that if I saw a conventional doctor that nothing of what I was experiencing would be understood. I just didn't expect by this stage that things would be what I had expected.

I had great reasons to be anxious. Hefty early childhood and ongoing truama. A big reinstigator early in my twenties. A sudden fall off a cliff healthwise around the time I left home for college. Loss of identity--from competitive athlete and straight-A student to completely dysfunctional. Homesickness. Loss of home. Confusion--very confusing circumstances to withstand. Having then on top of it all been hit and thrown two car lengths by an SUV speeding around a blind corner while crossing the street, which resulted in round-the-clock migraine for some months. That followed by the labor of constantly working... yet again, after so much improvement prior... to peel back the pain patterns and find a life that felt like much of a life. I had been homeless at times. I had spent my adult life paying off loans for a degree I couldn't finish for ten years. I had entered the job market without that degree in 2008 and had worked minimum-wage jobs several at a time, trying to balance exposure to known triggers for my illness with the need to make a living. I sometimes still found myself at thirty-some with $2.50 in my pocket to feed myself for the weekend--with invisible, unlegitimated, serious food sensitivities that meant I'd have any of a vast range of reactions if I accepted any of a vast range of foods, or timing was wrong, or anxiety was high. I had great reasons to be anxious. If you've been here, you know how hard it can be to see solutions.

Trauma and hypervigilance and anxiety are too often seen as a separate issue from internal medicine. Come with these and you must go see the trauma and hypervigilance and anxiety doctor. Bring your gastrointestinal symptoms, but if they get too complex we'll need to send you to the gastrointestinal symptoms specialist. Your rashes will have to wait for a separate visit--we're out of time for today. Next appointment?... six weeks out. If we don't have an answer we'll get you to a dermatologist, don't worry. Try that cream meanwhile. This is how things are handled in a typical conventional medical office, it turns out--separately, in brief, and with topical address as though one thing in this complex organism can possibly be separate from another.

Trauma and anxiety drive chronic illness. Chronic illness drives trauma and anxiety in a thousand ways too.

Trauma is just one of the precursors to complex and chronic illness. Complex and chronic illness are relatively new epidemics; my uncle lived with the same sorts of things I had for much of his life. But he was in a minority in that different age. Internal medicine is beaurocratic and learned and takes time to adjust. Internal medicine is not yet reformatted to handle complex conditions. I didn't even know it at the time. It isn't what's done at the conventional doctor appointment to list a bunch of arbitrary-seeming symptoms hitting totally different systems, some mild, some only occasional, others chronic and still others terrifying. There's no room for a big picture. The job is: go in and list one symptom, maybe two. We prescribe some medication, perhaps recommend therapy or yoga if we're feeling holistic and warm.

That note in my chart early on meant dismissal for the next decade at the clinic where I received regular care. I was 18 when all this started--still too young and too healthy looking to have any real health issues, I was told so many times in so many words over the next decade. I should see a counselor and gain a little weight. This was the message over and over again. And when I replied that I was seeing a really good trauma therapist who had helped me more than any other practitioner so far, that's why I was there seeking care yet again, and that I'd be glad to gain a little weight if I could but that it would take more sleep than I could get and an immense amount of physical training and that even then I wasn't sure I could do it since training even at a low level for many years now had led to five days at a time of massive fatigue, physical burnout, sore muscles beyond anything that made since, heart palpitations, weight loss, and progressively worsening pain.... No, I rarely could explain any part of that. I quit when I saw the suppression of an eyeroll.

I was given throwaway tests to "prove" to me that nothing more was wrong. The true worst of it involved regular episodes of what I now believe to have likely been mast cell disease's unique presentations of anaphylaxis plus chronic abdominal neurovascular compression syndromes. I had escaped those patterns for the most part by toying continually with my diet, with attention to the posture and patterns of my breathing, etc. 

Over the years I tried again and again, and I learned some of the rules of speaking up at the doctor. But no one symptom even began to represent the big picture anyway. I had really about given up and given in to the idea that I was just anxious and of innately low vitality or somesuch by the time a nurse practitioner heard what I was no longer saying and sent me for tests. Ironically even these weren't enough. Three major strokes of luck got me a diagnosis of histamine intolerance. 

Yet it was so complex, so scary at times. I was handling it all alone, and I was at sea trying to boil it down into a solution until I was diagnosed in 2022 with histamine intolerance. So much more helpful and validating information has unfolded for me from having that piece to focus on and to allow me to clear aside all the questions that previously lay open long enough to see what this path of inquiry brought. The histamine intolerance diagnosis plus my exploration of mast cell activation syndrome and low histamine diet have nearly alone made this difference for me:

After a decade of regular migraines following a severe neck injury; low histamine diet and slow, gentle gut repair allowed me to skip migraines entirely for two years. 

I did have more than enough really close calls in that migraine-free period of two years to know that I hadn't matured out of them. In fact, am I hyperbolizing?

It was such a relief to be in a certain amount of pain as I fought my way back, and not a much greater and uncontrolled level of pain, that I refused to call those close calls migraines when perhaps I could have.

The difference to me was the map that I was finally developing--the sense of control and navigation and understanding of what was going on. I was finally having enough success with peeling myself back from those close calls to understand that I was on the right track. Over those two years, cumulative efforts improved things so much that eventually I rarely had my (previously nearly incessant) precursor pain let alone threats of migraine.

A General Picture on Chronic, Complex Illness

The integrity of the gut and the health and balance of the microbiome are keystones for health. The immune system's functioning is heavily informed by the functioning of the gut. Hormone levels and balance, infections or parasites, stress level, and other central factors all play together in a highly dynamic, highly complex manner to keep us in some manner of wellness or otherwise. We've largely forgotten in the modern world with big-gun medicine and laboratory testing available to follow the subtle signs on what's going on inside, to fully appreciate that all of these body systems work together so closely, and to understand that any change shows up in a thousand ways, in all the systems whether near term or eventually. Those principles taken to their outcomes explain the multisystemic nature of chronic complex illness.

Here are some other relatable stories by others who have been down the road of chronic illness and come by similar means to the same sort of resurrection:

• Brave New Medicine--Cynthia Li, MD

• The Lady's Handbook for Her Mysterious Illness--Sarah Ramey

A Quick Summary of What Has Worked for Me Managing Histamine Intolerance and Mast Cell Activation Syndrome, Mostly Dietarily

Low histamine diet and relief from the heaviest and most frequent layering of triggers also allowed me to separate out, better understand, and better control more of the dynamics of my migraines by attending my mechanical body in very specific ways. Here and there in recent months I have had what I'd call proper migraines again, not infrequently. Most have come with extreme stress or illness, but others when I reach for athletic barriers I haven't touched in years. All in all I read that there's deeper work to be done again with my underlying gut health, with environmental factors, and with the ways that my body interprets stress. These are now very concrete sentiments. Now I have more tools to do the work. While I improve my gut health, the principles detailed in the chart below are indispensible once again. I'll walk a more careful line with histamine until the other work is done and I'm on a smoother path again.

I feel compelled after experiencing such a vast improvement that took so much work to unfold to lend a hand in guiding people through the complexities of histamine intolerance and mast cell disorders. These are too little known by mainstream medicine at present, and there are few people in any given locale to help navigate the complexity of these conditions and understand what's possible on the ground. As a massage therapist, I'm a keeper of stories. I hear so many stories. I've focused my work around hypermobility, chronic illness, and various related areas since early 2023, and I've heard so many stories by now of people trying to find their way through histamine intolerance, mast cell activation disorders.

I'll be writing more on this topic.... Meanwhile, below the chart are a few notes on how to use the downloadable food list in ways that may help to separate cause from cause in chronic, complex illness. By the time this information is relevant, you like me and so many others have a lot going on healthwise. The chart is designed to help offer clarity in the roots of pain and illness that may need to be addressed. You'll need to take your findings to your healthcare team, but I hope the details help you bring more helpful questions and speed you to useful answers. 

Histamine Food List

The chart below is what I built in trying to synthesize various research into a tool that was simple enough, principle-based enough, and substituted intuition for memory of all these confounded details well enough to be useful to me. Feel free to download and share, but keep my website info and the markings at the bottom indicating that there will definitely be errors--if you have any input on improvements or corrections to be made, email me: sarah@lightspiritstudio.com.

Principles/Hypotheses You Might Wish to Consider:

All from experience, these are the principles that have most clarified for me how to navigate my histamine intolerance and turn the razor-edge initial path of relief into eventually a sidewalk that I can relatively easily rarely leave.

• Staying under your tolerance level for cumulative histamine load is what's important in terms of symptom activation--not following any list perfectly

• The more you reduce your load, the clearer signals you'll likely be able to observe on what other factors are related   

• Different categories of trigger listed in the columns above may have different kinds of immediate effects for you; if so, the information will help the right kind of medical provider to suss out other areas to attend

• Functional, naturopathic, and integrative medical doctors are the folks who at present are going to be able to help address issues in these categories best--or so I hear, read, and experience. (You still need to find someone who is good at this work, accessible, affordable, and a good match.)

• Improving gut barrier integrity and microbiome diversity and balance will likely improve your general gut health and, over time, your tolerance to dietary histamine

I've gone the slow, steady, and independent method much out of necessity until recently, but it appears various approaches that match where I've seen my best results include paleo and GAPS diets along with care of a functional medicine doctor or naturopath who knows the GI system well. FODMAPS, low-oxalate, and other diets may help to refine the approach with other sensitivities in play. 

• histamine liberators are a different story--so far as I understand, when they're reactive, they suggest work may need to be done with detoxing mold or other constant, systemic immune triggers

I'm told Neil Nathan's, MD's book The Sensitive Patient's Healing Guide is a good resource for looking further into these ideas.

If this list is relevant for you, the categories of histamine related trigger may help you simplify correlation of cause and effect and make positive change

Getting to the point where I could summarize the differences between types of histamine-related response made a huge difference for me. For example, in sorting out my two types of migraine and their triggers by type, I was able to understand where I do have room to live more freely and where at this stage I still need to take very careful cautions:

Migraine Type 1 Notes--high histamine load from diet or SIBO: Histamine and similarly-acting chemicals in food used to be a huge trigger for my 5 days a week vertigo and migraines–my “migraine type 1.” My gut health has improved, so I can generally tolerate more histamine in my food now. (Whenever my gut is struggling again somehow, I'm back to more carefully low histamine diet until I improve it.) My "migraine type 1" is one sided. It generally starts with pain in my neck and shoulder and then advances to my head if I don't find a way to turn it around. This type of pain modulates slowly; when my histamine load is higher and too close to my tolerance level, a meal that brings my load too high will be followed by gradually onsetting pain starting around minutes after a higher histamine meal. Or, more commonly now that I stay further from my threshold, a bout of small-intestine bacterial overgrowth (SIBO) will bring me near my threshhold for a few days to a couple of weeks at a time. In that period, bloating is my sign to stay away from sweet foods and eat things that refocus my gut around healthier kinds of bacteria. For me a focus on greens, meats, and vegetables tends to be best. I also notice distinct improvement from using the enzyme supplement diamine oxidase (DAO) when my histamine load is too near my threshhold or when SIBO is active. I suspect there are more proactive things to be done with my gut microbiome that will help me avoid this state in the first place, but haven't yet had the guidance or knowledge to address this pointedly. Deep breathing to move out of the tendency for a locked diaphragm and/or related neurovascular compression patterns in the celiac plexus (a.k.a. solar plexus) can help a lot too. Since deep, diaphragmatic breathing is impossible to start with when my diaphragm is locked, I force deep chest breathing until it that unlocks my diaphragm. Mechanical and manual exercises/movements for the abdominal area also help a great deal with the mechanical aspects of this pain related to abdominal strain and neurovascular guarding. They would take quite a lot of words to relay, but I will somewhere when I can and will link them. "Migraine type 1" pain stays on the right side of my head, and when it's really bad it causes nausea, butterflies, vomiting. Sometimes the broader pattern of tension and mechanical strain also produces pain in the distribution of the upper two rami of the trigeminal nerve and/or in my left pelvis and down the back of my left leg. Migraine Type 1 pain responds well to mechanical therapies (weight-lifting, kettlebells, percussor) even when histamine is involved. Sometimes those aren't enough. NSAIDS can damage the gut lining all on their own, and I've been advised by an allergist-immunologist not to take them for that reason. I used to be able to turn this type of migraine around at the right stage with ibuprofen, but I'm looking for a new solution for the rare times that this type of migraine still catches me.

Migraine Type 2 Notes--increased intracranial pressure from histamine liberators: Histamine liberators such as citrus, on the other hand, will still lay me down with my “migraine type 2” for three days. It's easy enough to avoid citrus at home, but I have to be really cautious eating fresh dressings and sauces anywhere else. The good thing is, I'll often catch the warning in the flavor or by the fact that subtle reactions begin to arise within seconds. Many cleaning products and chemicals and certain essential oils can also trigger this pattern but it's easier to avoid them. Even having an orange opened in a closed space next to me is enough to give me precursory pain as a warning signal for this kind of episode. The pain starts within seconds of exposure and emanates from scarred tissues in my shoulder and neck as they seize, traction, and compress underlying nerves and vascularure in response to the aerosol exposure. I imagine at this point that mast cell degranulation is the cause proximate to the pain. Pain arises in my neck and or shoulder within seconds (mast cell degranulation), as well as runny nose (a sign of one type of immune reaction). Intractable headache slowly arises over the course of half an hour or so depending on the dose of the trigger. The headache is everywhere in my head all at once, not one-sided. It comes with nausea, vertigo, loss of balance and coordination, low mood, inability to sleep at night, inability to stay awake during the day. My "migraine type 2" does not respond to mechanical therapies. I've been experimenting with mast cell stabilizers to see whether they help, but thankfully the episodes are rare enough now with all that I do already that I haven't had opportunity to very well clarify what helps and what doesn't. The jury is still out on ketotifen. Loratadine helps in a limited way for far under the period until which I can take it again. I haven't tried cromolyn sodium or any of the newer drugs. Taking the supplement quercetin daily seems to help. It was suggested that I might try low-dose allergen therapy.

For all the questions that remain about the mechanisms involved in my "migraine type 1," I'm less clear on those in my "migraine type 2." Yet I'm so grateful for the degree of at least hypothetical clarity that has emerged, particularly since no doctor I've yet worked with has gotten into the nitty gritty with me. Few have even had answers sufficient to propel my own search. And I only have so much energy, time, and money for getting to doctors. So I'm left to figure out a lot on my own with respect to mechanisms, all for the sake of finding solutions. My "migraine type 2" symptoms match those of acute mountain sickness. High altitude is another oxidative stressor which probably makes those of us at altitude more prone already to this kind of episode, as was confirmed to me by an argentinian altitude medicine doctor. Aligning those dots has been the source of my best guesses so far on mechanisms for my "migraine type 2." As far as I can tell--without medical backing on the hypothesis so far--this type of episode involves heightened intracranial pressure due to cranial drainage issues. These likely arise from immune or chemical reactions in the nerves or vasculature in mast-cell-rich scar tissue of my long-ago injured neck and shoulder. ("Migraine type 1" became chronic instead of very occasional after the accident that caused most of this scar tissue.)

Until my histamine load was low enough that I could go through a day reliably without migraine precursor pain, there was so little information available through all the noise of simply constant pain and other symptoms somewhere or other. When my histamine load was lower, suddenly features started popping out in the data. Then I could functionally control enough variables well enough to experiment with what all could support staying out of pain, and from there I had enough information to really begin improving systemic patterns, for example with my gut, even though I hadn't previously had the combination of enough information and enough money to justify expensive, time consuming, and laborious efforts with the right kinds of practitioners to make a difference--particularly where conventional medical guidance seemed to pish-posh or circumvent every suspicion I would bring with respect to underlying causes. Now that the tasks are so well identified, not to mention my health and therefore my financial capacities have grown, I can finally once again afford to work with those who can guide me and provide testing and prescriptions to more pointedly address underlying gut-related challenges.