Alive and Well: Living with Migraine and Fibromyalgia
By Crystal Llamas
I hurt. All over.
For those with migraine and fibromyalgia, these two sentences resonate as deeply as the pain. These disorders disrupt our best intentions, sideswipe our most earnest attempts, and exclude us from our very lives. Living with loops and rhythms pulsing our nerves into rebellion, we become parts of pain and parts of cycles, with parts of ourselves fragmenting as fast as fortune fades. In this insidious process, flare-ups destined for landfill instead become recycled, composting the remains of last night’s migraine attack into widespread aches, fogs, and pains.
So, what are we left to hold? Depleted energy? Check. Canceled plans? Check. Invalidation from others? Check. “Character building opportunity” that beckons trauma and tumult more than it does grace and growth? Check. If excitement is at the core of every bucket list, we check boxes far and wide in our brain’s pursuit of hyperexcitability.
What purpose does this neuronal hyperactivity really serve? Why do our brains become fixed in repetition? Is this migraine-fibromyalgia relationship causal or concurrent? And, can we intervene and regain stability during this relentless process in our efforts to be alive and well?
The Migraine World Summit is on a mission to answer these questions and more. Designed to educate, inspire, and empower, this eight-day online event brings together dozens of experts who are working to improve migraine care and instill hope in the lives of many.
Double Trouble: Migraine and Fibromyalgia
Migraine is a debilitating spectrum disease characterized by a range of symptoms, including severe head and facial pain, sensory sensitivities, nausea, and fatigue. It not only debilitates, but drains our resources—emotionally, physically, and financially. Living a life dictated by pain is also not unfamiliar to those with fibromyalgia. Widespread body pain and sensitivity, cognitive difficulties, sleep disturbances, and mood issues mark both disorders, decreasing quality of life and increasing psychological distress.
These experiences are multi-faceted—the emotional, physical, and mental spaces affected occupy the deepest crevices in my psyche. The talk bustles. The noise riles. The movement boils. The commotion calls my attention, whether or not I desire the limelight.
Through migraine and fibromyalgia I’ve experienced these biological performances, invisible to the world around me, yet ever-present and commanding within me. While I may search high and low to provide the graphs, charts, and visual imagery I may feel necessary to animate silent suffering, the evidence sometimes lands on disbelieving ears. Not only has the pain I’ve experienced been casted as unreal, but I’ve internalized this stigma and felt unreal.
No matter the landscape, migraine and fibromyalgia are a common occurrence—30% of people with migraine have fibromyalgia, and 50% of people with fibromyalgia have migraine. Although migraine is generally treated by a headache specialist, and fibromyalgia a rheumatologist, both disorders share hyperalgesic properties and connectivity abnormalities. In addition, both migraine and fibromyalgia patients may experience one particularly troubling type of neuropathic pain: allodynia.
Ow! But How? Allodynia, Another Type of Pain
Simply put, allodynia refers to pain without the presence of painful stimuli. Pain when combing one’s hair, being lightly touched, or coming into contact with hot or cold stimuli describe the nuances of living with allodynia.
We are often told how wise our bodies are, but where does wisdom lie in the transformation of sensation to pain? What evolutionary advantage do we possess? Though I can intellectualize the insight and value pain offers, feeling sick and debilitated hasn’t felt like a competitive advantage for most of my life.
Pain marks me—my years, months, days, hours, minutes, and seconds. Outrageous? Check. True? Check. Pain limits, isolates, and rules my parts. It is a captain, leader, mentor, and delusional abuser hopped up on power. Pain is a problem, and pain is an answer.
It’s a fault line for those with chronic pain—a delicate balance of detachment and embracement we straddle time and again. We don’t want to lose ourselves, yet finding ourselves often means we find pain. What pain is and is not can easily become who we are and who we are not. Limitations can become selves and selves can become constrained.
Approximately 80% of people with migraine have experienced the limiting and painful allodynia during an attack. People with chronic migraine are at a greater risk for developing allodynia in between attacks, otherwise known as interictal allodynia. Why? When attacks are so frequent, the brain does not have adequate time to reset and resume normal function. As a result, it remains in a state of hyperactivity, and a phenomena known as central sensitization ensues.
Central Sensitisation at Grand Central Station
When I consider the parts—migraine, fibromyalgia, and allodynia—I consider the deeper roots and mechanics catalyzing these experiences. I reflect on the unique function and roles these aspects have adapted to fill, and how my brain has facilitated the fulfilment of this. I’ve found that the answer involves central sensitisation.
During a migraine attack, signals to the trigeminal nucleus caudalis in the brainstem trigger the activation of trigeminal nerves, which innervate the sensory endings in the face and sinuses, as well as the blood vessels surrounding the brain. This activation is responsible for the typical pain experienced, as well as the presence of head-based allodynia. In chronic migraine, repeated peripheral sensitization of these first and second order neurons causes the sensitization of third order neurons deep in the thalamus, aka Grand Central Station, which is responsible for processing all sensation in the body. Consequently, widespread allodynia and body pain ensue, completing this central sensitisation mayhem.
After I absorb the reality of this process, I question the functionality of my brain. Though highly dysregulated and imbalanced, the brain is responding to the conditions it has been given. If human evolution is an ongoing process of adaptation, then I am indeed evolving, just not the way I desire.
The Cost of Multiplicity: Conditioning Into a Constant State of Pain
Inhabiting a body host to both migraine and fibromyalgia presents unique challenges. When one experiences frequent pain, the central nervous system becomes conditioned to function in a state of pain and remains “on”, even when the threat has passed. The consequence? Increased disability and likelihood of developing additional pain disorders.
Self-blame, anxiety, depression, and guilt double down when migraine and fibromyalgia bear their unyielding weight. My mental chatter consists of compromises and negotiations in efforts to appease, pacify, and cope with pain. Pain becomes a cruel game…“should I take sumatriptan today, or save it should I need it later in the week, which I most likely will?” Resigning myself to full days in bed has distorted time and held me in a peculiar space, in chronic retreat.
Knowing when to accept or push my limits is an active problem I face day in and day out. I’ve grappled with respecting the parameters of treatments and questioning their efficacy when I’ve continued to feel pain and discouraged. “Good days” are relative but graciously welcomed. I’ve learned time is precious, and though my participation varies, my presence never leaves, and I am always here.
Is living a life avoiding pain still living? When evading pain has constituted so much of my life, I answer a self-assured “yes.” Feeling constrained has fostered a creativity that blooms as abundantly as pain spreads. While I’m thankful for the flexibility and adaptations I’ve nourished, regaining stability is an ever-present hope and work in progress.
Adapting, Once More
In light of these adaptations, I’ve begun to question: If my brain has adapted to a life with pain, can it not adapt to a life with less pain? Thankfully, it can, by reason of a phenomena called neuroplasticity, or the ability of the brain to adapt and change.
For those with episodic migraine, treating migraine early is especially important, as it interrupts the central sensitization process. However, when this process does take hold, treatment should prioritize multiple ways to manage pain. Pharmacologic intervention encompasses both acute and preventive treatments, some of which may include triptans, DHE, NSAIDs, or gepants. Alternative methods, such as talk therapy, mindfulness-based stress reduction, physical therapy, strengthening, grounding, massaging, meditation, yoga, acupuncture, and deep breathing have paved alternate trails and opened new channels within me.
Frequent migraine attacks can exacerbate fibromyalgia. Working with a headache specialist can help reduce the overall burden. Sadly there is a critical shortage of experts worldwide and there are often long waitlists to get an appointment. That’s where the Migraine World Summit can help. It brings 32 experts, researchers, advocates and professionals to share the latest treatments, best practices, insights, and research to help you turn the corner. Get free access during the event from 8-16 March 2023 when you register today at migraineworldsummit.com
Finding a Pulse
Disentangling pain from self and extracting my essence from disease challenges me to quit the checks and balances act. Searching for reasons, building lists, and marking my strengths, weaknesses, and growth edges comes with limits, amounting to mental gymnastics at best, and at worst, more chaos at Grand Central Station.
I hurt. All over.
For me, these sentences live in a repetitive loop. I struggle. I doubt. I wonder if life carves its own way or if I can wield the knife in my favor, and if so, am I capable? Can I find a pulse?
Pain is arriving just as fast as healing is unfolding.
Whatever part I bear witness to, or shifting perspectives I occupy, I still check my boxes from time to time.
Receptive? Check. Alive and well? Check.
Hopeful? Check.
References:
[Expert Interview] Ailani, J., MD, FAHS, FAAN (2022). Expert Tips to Manage Persistent Migraine Pain. Migraine World Summit. Retrieved January 9, 2022, from https://migraineworldsummit.com/talk/expert-tips-to-manage-persistent-migraine-pain/
[Expert Interview] Tietjen, G. E., MD (2018). Body Pain, Allodynia, and Fibromyalgia. Migraine World Summit. Retrieved January 9, 2022, from https://migraineworldsummit.com/talk/body-pain-allodynia-and-fibromyalgia/
[Expert Interview] Wells, R. E., MD, MPH, FAHS (2020). Mindfulness-Based Stress Reduction. Migraine World Summit. Retrieved January 9, 2022, from https://migraineworldsummit.com/talk/mindfulness-based-stress-reduction/