My Fibromyalgia Framework

Fernanda Lugo
8 hours ago
9 min read

Fibromyalgia as a framework for what I was meant to learn.

This is a blog post comes from a long time synthesis with previous journal entries from up to 6 or 7 years ago, and the health breakthroughs in getting off some meds that give me hope.

You can skip the private HIPPA stuff (in grey) if it makes you uncomfortable, though the lens of dealing with the healthcare system is another that merits time and attention, as this and other chronic diseases' prevalence increase.

I'd been on amitriptyline since 2018. Id been on gabapentin, then pregabalin, since 2024 after having a back sciatica episode and a herniated disk diagnosis. I started Fall graduate school in Fall 2025. I have attempted to write my experience living with these disease clusters, medications and the systems that help and hinder my health and wellness for a while, and haven’t succeeded- until now!

Fibromyalgia, in my own definition, is a Disease/syndrome that embodies the lack of movement that leads to fatigue that leads to tightness, scarcity, overarching dehydration that brings with it pains aches, stiffness and malaise of the immune, digestive, and nervous systems (pressure and temperature dysregulation are common feelings).

This is knowledge I've had since around 2018 or 19. It escalated after COVID, social isolation, and complex post-traumatic stress disorders, though my body has always been one on the sensitive side. My symptoms existed since my late teens probably, though my conceptualization of it as fibromyalgia – irritable-bowel- interstitial cystitis and chronic pain existed and came into the picture around college. I write of my awareness of the disease as integral to my conceptualization of it, and perhaps to its continuation. I write of my diagnosis (which actually didn’t officially come until 2024) as a conceptual highlight in my life story, where the episodic limitations I felt in my body- rigid, painful stiffness and neurological malaise- drowsiness/fatigue as something that gets in my way— an umbrella term for the many-at-once feelings of a complex disease. This concept piqued my curiosity and was deeply investigated , even as a major topic for my masters’ class assignments and thesis.

What this disease looks like on bad days is hard to describe. I looked through previous journaling notes in my old files from back in 2020 and found this:

I am depressed. I am in pain when I sleep, when I wake, I'd rather sleep. I yearn to be back there and for the comfort of the earthen ground, camping, before this disease took over.

I have fibromyalgia. If that is a new term for you, or you have heard people report that they have it.- Let me educate you. The symptoms of fibromyalgia are more of an umbrella than an exact science.

The reason for this-- that makes the most sense to me -- is that fibromyalgia is caused by the toxicity of the world

Crunchy. bloated, inflamed. I am often most inspired to start documenting the experience when there is a sharp contrast in how I am feeling: well, suddenly turning bad. Like today, as a heatwave takes a toll on my body's self-regulation. The question of the day is always 'how severe will my impairment and pain be today?' and 'in what mix will I get symptoms?'

How is it that my hands and feet are cold on a hot day? Am I dehydrated? Maybe I need some electrolytes, my eyes and back are hurting, but I want to finish writing this story. The Brown articles mention almost all of the thoughts I've had, including the questioning of the validity of an illness that is oftentimes inconsistent and variable, and the conundrum of disclosure. I start to feel validated upon reading others’ experiences. I was validated with a diagnosis, and when I was able to receive a disability placard for my car (after advocating for myself against the university parking, which was not making school accessible). There have been several wins from this perspective of having a disability, but also deep in my achy, dehydrated tissues, I know I may always be vulnerable to fewer healthy days and vulnerable to the social consequences of an episodic disability, where I may be less desirable for promotion and advancement.

In writing this as a blog post I also manifest it as a proposal to continue investigating embodied experiences in sustainability. I feel that I have gained a lot from the perspective that fibromyalgia has taught me, and its lessons are entirely applicable to the overarching systems. As I read the descriptions of other patients, I feel I already hold the knowledge that someone else created; I have been able to not only see but feel the philosophical arguments of body and mind.

One of the limitations why modern medicine struggled so much with understanding fibromyalgia until now is the invisibility of fascia. Awareness of this literal tissue lens offers a new perspective to the illness, and our social coping with it. Fascia is the thin, strong layer of shrink-wrapping packing material that surrounds everything in the body. It is a web that connects the skin to organs to muscles to skeleton and lymphatic system. It houses vast networks of nerve endings and is where proprioception takes place. As a translucent wrapping of living tissue, this is indeed a lens that needed to be seen through. In cadaver dissections, it was something to cut through to get to the really important stuff. Fascia is now known to be a dynamic living tissue that responds to movement nutrition and even feelings, and that is where healing from the disease processes of it can begin.

Chapter 2 of the patient guide by Fascial Labs puts it in layman's terms relating the healthy tissue as one that glides over all muscles and organs, lubricating motion facilitating exchange. In the disease process, repetitive motion, or lack thereof, higher propensity to inflammation or dehydration and ‘aging’ restrict the fascia. This causes tension, pain and a vicious cycle of disease. A lack of lubrication between each tissue is the diseases etiology and symptoms from headaches and jaw pain, to digestive discomfort are all linked to this lens-like wrapping tissue that connects our body to itself.

This is a good metaphor for other systems that are often invisible, disregarded and overlooked, such as the monetary system which is in essence a description of flow between units in society, and the illness of not flowing is where we experience inequality and scarcity today. My understanding of my own bodies experience in scarcity, inequality, injustice, and trauma inform me as believer in embodied knowledge, as the stuff that holds everything together. Of praxis and movement and activism as a medicine that heals not only me, but all of us together.

The body as a thinking organism, rather than just computer “brains on sticks” has been a philosophical debate since time immemorial; Dualism, determinism, and pragmatism, and even stoicism approach the human experience as a complex conundrum where the body and its experiences (pain, weakness, stress) are often at battle and in relationship with the mind and its experiences (feelings, thoughts, conscience). Overcoming the disease process requires one to learn acceptance and equanimity. For my understanding of the disease process, I've had to engage in pacing, deep compassion, and even medical leaves.

Ive written several attempts to be open about my 'disability' if it merits that title. On the one hand, acceptance and equanimity can come from understanding the disease process, also deep bonding can happen when people in your circle of care take the time to listen and understand your own self care needs. On the other, these thoughts and ruminations can spiral into health anxiety, obsessive catastrophizing, fuel for the pain... but it all depends on the frame of reference, and I think the fascia works better when it is moist, slimy and mobile- perhaps transparent. Opacity sounds toxic, aglutinated, dried up, and crunchy, so in the spirit of healing, I'll choose transparency of mind and body.

Chronic illness has taught me so many things I explain; coping, patience, acceptance, and medicating with illness has been one thing I've been honored to learn, and how diverse the reactions of the consciousness can go, but it can also be molded to fit the circumstances, by this feeling called will. I Will things into being. Or I Ill them into being. By not paying attention, by distracting, mindlessly, this can let things overgrow, aggregate and entangle. Contrary to stewarding, where it is necessary to pull the weeds that must be removed. Letting the thoughts circulate into the abyss is part of health maintenance when you understand disease as biopsychosocial.

There's also obviously political layers. Back in 2021 I read the Future is disabled and started an attempted blog post which I'd titled "How being open about disability is an anticapitalist act". I can guess I felt strongly that disability pride month meant fixing the injustices that hurt all of us, but some more than others.

here's a throwback snippet:

I have had chronic health problems for a while. It has slowed my down in pursuing more education- I would’ve considered being a doctor but cant fathom surviving when I hear horror stories o fhow overworked and mentally unstable med school students and residents become. I also have some health mysteries, and Im currently digging into the research on immunoglobulin E and diurnal cortisol etiology of idiopathic urticaria, which is apparently associated to fibromyalgia. I thought I would find some answers in graduate school , where I studied biobehvioral health but actually I only found more challenges, and hurdles, including catching covid 19 pre-vaccine, which might have left me with some long lasting symptoms- probably worse mental health. Todays obstalces are fatigue, brain fog and soreness like everywhere. I thought it was a bug I picked up from subbing at the middle school (it was less than hygienic) but I think its also time to admit that some disruption of my endocannabinoid system is to blame. There will be other essays on how obscurantism of medicinal plants has left some illnesses, particularly women's health , lagging in the dust, ignorance. This essay is more so about how being open about health concerns can be a revolutionary act, and , in the words of LEAH Lakshmi (the future is disabled) what if there is more to being disabled. More compassion and understanding to be found than what we find in the endless hustle of capitalist productivity.

But this isn’t the story of how sick I am –It’s the story of how yoga, anti-inflammatory medicines, avoiding what my body doesn’t like – and what challenges I find in staying well.

apparently i didnt finish the story then but I do wish to now, and as a supplementary chapter of my graduate and scholarly work, I propose continuing to exercise this mind-muscle of writing and research into the somatic learning experience so that it may be better shared and addressed in a world where it may be an obstacle to other participants' involvement. I hope this journal entry and its reflexivity can be taken into consideration as context of the learning experience with which I’ve chosen to dance.

(more—on dance as queer community building- a social support system that promotes health and healing)

The symptoms that hurt and get in the way of doing the work, often come from the pressure of validating one way of knowing- the hegemony of a pressure to create written knowledge, instead of community storytelling and advancement. The solitary pursuit of putting words on paper and citing them comes with its methodological challenges that keep habitually social species tied to a desk in anti-ergonomic positions that continue to create disease processes through stress on the neck (I had to go to PT in may due to a movement-limiting spasm strain), headaches, eye strain and bad posture. Though awareness about the health-limiting consequences of this kind of work the establishment prizes this work too much limiting opportunities for other ways of knowing, and teaching.

Besides the positional physical conditions that help and hurt the symptoms, seasonal hormonal and environmental conditions also greatly affect the body’s functioning. Cold and heat have surprising effects, as heat can cause and alleviate tension it also dehydrates and causes constriction of fascia over time, making heatwaves and hot summers a challenge. (Thinking back on this, my skin has always been sensitive to heat, and I often developed heat rash in my hands and feet in my youth, exacerbated by scratching. Until I learned to not scratch this initial itch did this disease go away, and food triggers have still not been identified. Guess I’m a somatic).

As I write this coming back from my Chicago excursions, I recognize that the heat wave, and my shift in social activities is causing the flare-up I am now experiencing, not my dependence to go back on these medications . It was still right to get off them, and try more holistic ways of health maintenance. It is in the interest of maintaining that balance that I disclose to you, dear reader and question this experience in a scholarly fashion (further reading: metaphorical understanding, embodiment, illness experience) as justification for my systematic understanding. (Brown, 2022).

I remain optimistic that this flare up too shall pass, and that I am able to receive what I need even when my body is vulnerable. I still need social time even when in pain, and I still need access to my other controversial medication at times, though I am happy to be off the pharmaceutical symptom-masking medications.

I have learned so much from my experience and although painful, I think I am blessed to have been given this perspective to hold and share. My perspective is about the interconnectedness of the body and body, and the environment, and the flows and transformations and it allows me (or forces me?) to slow down and think about things deeply, and in the tradition of other economics philosophers who question systems, has led me to reshape my vision for justice democracy and how we distribute the goods in our society.

My Fibromyalgia Framework

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