Multiple Chronic Pain Conditions: A Metaphorical Tale
Imagine rushing out to your car, and to your dismay, you notice a flat tire. With no spare tire, you realize you’re going to be late for work, again. You have no choice but to call AAA to come replace the tire.
After you anxiously pace the block for an hour, the tire is replaced. You quickly jump into the car, ignore the “CHECK ENGINE” light, and take a few cleansing breaths to bring your heart rate down. That’s a battle for another day. Feeling flushed after the flurry of morning activity, you turn the AC button on, only to be met with a blast of hot air and a strange rattling sound. At least you can roll the windows down. Sighing, but hopeful there won’t be a heat wave before you have the time or money to get the AC fixed, you pull out of your driveway.
You make it through the work day, unscathed; until you turn on the ignition, and you are met with…nothing. The car won’t start. You can no longer ignore the “CHECK ENGINE” light, and you call AAA for the second time that day.
This sounds like a scene out of the children’s book “Alexander and the Terrible, Horrible, No Good, Very Bad Day” by Judith Viorst. But this is actually a metaphorical tale describing the daily lives of approximately 40 million Americans living with headache diseases, especially those that live with migraine in addition to another pain condition.
There is increasing data that shows those with comorbidities (multiple chronic pain conditions) are misdiagnosed, undiagnosed or under-treated. According to U.S. Pain Foundation’s 2022 Chronic Pain Community Survey Report, 99% of patients who reported living with either migraine, chronic migraine or cluster also live with another pain condition. Looking at fibromyalgia in particular, a condition with a high comorbidity link with migraine, 50% of individuals living with fibromyalgia reported having more than five headaches a month (27% reported 3-5 headache days per month). Out of those reporting headache in accompaniment to fibromyalgia, 22% mentioned never discussing the frequency of their headaches with their health care provider; another 6% reported they had not talked to their doctor but planned on doing so now. (The survey did not specifically ask if any of those individuals had been diagnosed with migraine.)
As Diagnoses Accrue, Migraine Remains Untreated
I was one of those patients living with migraine that didn’t realize it. Once I was diagnosed, I was either untreated or under-treated for years. How did I not know that I was living with migraine? I’ve lived with multiple chronic pain conditions for more than 20 years. I was first diagnosed with CRPS/RSD (complex regional pain syndrome/reflex sympathetic dystrophy) in 2000. The pain from that condition, as well as the traumatic life changes that came along with it, were overwhelming and all-consuming. Like a flat tire, it was not something that I could ignore. My head pain became the “CHECK ENGINE” light that I put on the back burner — until I couldn’t anymore.
In 2006, I was diagnosed with fibromyalgia. I was now dealing with two chronic pain conditions and was having increasing headache frequency and severity, but I was consumed with my treatment for CRPS and now fibromyalgia. When I mentioned the headaches to my doctors, they didn’t address it, so I didn’t either.
As the years went by, my headaches persisted. One night, the pain and vomiting were so severe that my dad rushed me to the ER. I believe this was the first time that I was diagnosed with migraine, but that was it. No treatment suggestions were offered. And I had heard the word migraine tossed around so much, so I didn’t realize the implications of the disease. I had enough on my plate with CRPS and fibromyalgia.
Most of the time, over-the-counter (OTC) pain relievers helped manage my headaches. When I temporarily lost my vision and was diagnosed with ocular migraine, the ophthalmologist told me not to worry and that they were common in women. So I didn’t worry; I didn’t research treatment options or lifestyle changes. I just continued to pop OTC meds with increasing frequency. But when my headaches began happening every single day, they were harder to ignore. I again sought treatment and was diagnosed with chronic daily headache. But again, there was no follow-through on the doctor’s part.
Multiple Chronic Pain Conditions
I went on this way for years, never realizing that migraine was one of my multiple chronic pain conditions. Even after working as a chronic pain advocate and volunteer with the U.S. Pain Foundation, when I was invited to apply for Headache on the Hill, I didn’t think I was the appropriate person, as CRPS was my main condition. I didn’t put much effort into my application because I hadn’t come to terms with this diagnosis and what it meant. I didn’t realize that there was a whole community of people living with migraine and other headache disorders, and that I was now a part of it, though not yet active.
My “CHECK ENGINE” light kept coming on, but I was dealing with a flat tire (CRPS) and a broken air conditioner (fibromyalgia). Eventually, I could no longer ignore that “CHECK ENGINE” light (chronic migraine). I began to aggressively seek answers, visiting multiple doctors. Frustrated, I looked out-of network and met a doctor who took me seriously. I was diagnosed with chronic migraine and recommended medications recently approved by the FDA. They were extremely expensive, so I was referred back to an in-network neurologist in hopes that the medications would be covered. Unfortunately, the neurologist did not agree and told me to continue the status quo of what I was already doing to manage my other conditions. I left the appointment feeling let down, overwhelmed and ignored.
At Long Last: Belief, Answers and A New Community
Life continued this way until December 2021. I was a passenger in the car as my family drove through neighborhoods enjoying the homes decorated for the holidays. This was an annual tradition for as long as I can remember. I began to feel carsick, dizzy and nauseous, which was not that unusual for me over the last 15 years. When the symptoms hadn’t gone away days later, I went to see my primary care doctor. After seeing two ENT specialists and an audiologist, I was diagnosed with vestibular migraine.
By this point, I was no longer ignoring the various aspects of migraine in my life. I found a neurologist who understood how debilitating my symptoms had become — and this was on top of my symptoms of CRPS and fibromyalgia! He spent so much time explaining migraine and the various ways he thought we should begin to treat my disease. When I left his office, I felt heard, understood and hopeful that I would be able to get control over my symptoms.
It’s been a long journey for me to realize I needed to deal with my migraine symptoms. It wasn’t just a headache. I recognize that I’m not only an advocate for all people living with chronic pain, but that I’m a part of multiple subsets of the community — I can have a CRPS family and a migraine family. In fact, I attended RetreatMigraine virtually for the first time this year, and I’ve begun attending Miles for Migraine events and reading everything I can get my hands on to better understand my migraine journey. I also hope to attend the next Headache on the Hill.
There is no roadmap or GPS to guide me. Everyone’s route will be different with a lot of “recalculating” messages from the GPS, but I feel hopeful. Unlike cars, there is no warranty, and we can’t trade in or buy a new body. We each have to be our own advocate and demand that our symptoms be taken seriously. We deserve to have quality, affordable medical care for each of multiple chronic pain conditions, including migraine.