How Real Pain Management Can Feel
Being chronically ill has taught me one very humbling thing: Everything can change in an instant—for better or for worse.
Despite having experienced symptoms of Cyclic Vomiting Syndrome (CVS) since my senior year in college, I didn’t receive a diagnosis until last summer—a whopping 10 years later. The only reason I’m able to put a name to this illness is that my partner did an intense amount of research into my symptoms, trawling through social media and Reddit and medical websites after my attending physician at a Brooklyn hospital refused to believe I was sick. I spent five days as an in-patient being passed back and forth between gynecology and gastroenterology, with both departments insisting I was just fine. Because that physician was so terrible, the visit was deemed medically unnecessary and we’re having to go through the appeals process with insurance. Medical gaslighting is a nightmare.
Spoiler alert: I wasn’t fine. I hadn’t been for a decade. And I’m still not most days, though now that we have a diagnosis and a care plan, this illness is much easier to manage.
As defined by the Cyclic Vomiting Syndrome Association (CVSA), CVS is a disorder affecting the neurological and gastrointestinal systems. It causes sudden, repeated episodes of severe nausea and vomiting that can last from hours to days, alternating with longer asymptomatic periods. Episodes have a variety of triggers that are specific to each individual patient. Mine include but are not strictly limited to severe stress and/or anxiety; insomnia; pain; menstruation; urinary tract infections; and eating too much or not enough in the four-hour window before bed. I get abdominal migraines before and during episodes and I will wake from a dead sleep into vomiting up pools of bile. This is at turns exhausting and debilitating, and it affects every area of my health and life.
Four months after I was sent home from the Brooklyn hospital, I spent an additional 10 days in a different hospital where my physicians listened to my symptoms and worked to find a resolution. I had a raging infection and severe back pain, which were why I was admitted, but I was also in the middle of a CVS episode. On my second to last day as an inpatient, a gastroenterologist quite literally breezed into my room, quickly went over my symptoms and history, then said the magic words: “Congratulations, you have CVS. There’s your diagnosis.”
The next day, he performed an upper and lower endoscopy and a colonoscopy to confirm, then retired. Apparently, I was one of the last cases he took before riding off into the proverbial sunset. I spent approximately five conscious minutes with him across two days and haven’t seen him since, but he completely changed my life. By following his prescribed list of medications and supplements, including capsaicin topical cream for managing abdominal migraines, my CVS episodes have gotten fewer and farther between even when I’ve been faced with multiple triggers at once.
I had a similarly surreal experience earlier this month. As I’ve gotten my CVS mostly under control, other issues—mainly with my pelvic health—have risen to the surface as being even more emergent. Obviously, that’s less than ideal, but knowing how to maneuver through CVS episodes makes dealing with other illnesses much easier. It even makes dealing with chronic pain less difficult, though the latter has been ever-present for the last two years.
Near the end of 2021, I started to experience such acute and persistent sciatica that it affected my ability to work, go to school, and have a social life outside of my apartment. While I was mostly mobile at home, the same wasn’t true once I left. Stairs, walking long distances, and navigating public transit became incredibly daunting. I began using a cane for support and attempted to manage my pain with over-the-counter medications and topical creams, as well as heating pads, ice packs, and stretching videos that were recommended to me by an urgent care doctor.
I carried on this way for more than six months and had begun to accept that I would likely have to contend with at least some pain for a long, long time, if not the rest of my life. Then I slipped a disc in my lower spine, which skyrocketed my pain and sent me to the ER for the fourth or fifth time that month. The other visits had been due to a persistent, resistant UTI that couldn’t quit me. With both issues occurring simultaneously during that last visit, I was admitted as an in-patient and spent the next two-plus weeks seeing a variety of specialists as we tried to get to the bottom of my entire symptom set since they likely weren’t all stemming from the same cause.
During that stay (which was when I received my CVS diagnosis), the slipped disc pain in my back eventually went away with rest and liberal application of pain medication. I started a new prescription for nerve pain, which tapped the well of my sciatica and forced it to calm its choppy waters. Still, I continued to exist with some pain every day, and the number on the scale would fluctuate depending on what I was doing, how I was feeling in other areas of my body, and whether my mental health was thriving or diving.
At the start of this month, the slipped disc reared its ugly head once more. This time, I spent just four nights in the hospital, but my pain was through the roof when I arrived at the ER and stayed that way even with a strict medication regimen and visits with both occupational and physical therapy. On day three, I was cleared for discharge with instructions to rest at home and follow up with a pain management specialist. There were no guarantees that I’d see one that week or even the week after, even with a referral; I feared going home and continuing to exist in so much excruciating pain, but the doctor said there was nothing more they could do for me as an inpatient. What else was I supposed to do?
Turns out, I just had to wait for another surreal and life-changing appearance from a specialist.
As my hospital doctor prepared my case for discharge, a neurosurgeon breezed into my room, quickly went over my symptoms and history, then asked if I wanted to get an epidural to manage that pain before I went home. I gave wildly enthusiastic consent for the procedure, despite having a bone-deep fear of epidurals based solely on how they are presented in teen pregnancy movies on Lifetime and not really knowing much else about them. If getting an injection in the hospital meant I could go home with less pain and potentially continue to have less pain for a while, I was on board.
The neurosurgeon placed two calls, including one to schedule a follow-up at his clinic for after I was discharged and one with the doctor he wanted to perform the procedure. I stayed another night under the auspices of getting the epidural next day, which got a little convoluted because of how the hospital schedules its procedure rooms. Unfortunately, I was in no condition to self-advocate: I was exhausted, in pain, incredibly nauseous, and in and out of sleep due to my meds. Fortunately, my partners and my nurse worked together to get my attending physician to order the procedure at any cost, and they succeeded.
I received my first-ever epidural at 4 p.m. on Wednesday, April 12. Two hours later, I got out of bed to use the bathroom and realized that moving didn’t hurt. It didn’t hurt at all. I stood next to my hospital bed and wept with gratitude.
Although this stay was much shorter than my last, it was just as grueling for very different reasons. My body processed what was happening in a much different way, and it was difficult to keep track of the days because I felt so cloudy from both pain and medication.
I took this selfie at 2:30 a.m. on Tuesday, the day before my epidural, after I woke sitting on the edge of my bed, mid-conversation with my nurse. In my sleep, I had removed my IV (which was a rare one-and-done by the ER nurse), my heart monitor leads, and my oxygen monitor. It took two nurses two hours and six pokes to get a new IV in, and three of those attempts were made with an ultrasound machine. They Coban-wrapped my new IV so I couldn’t remove it, which had the adverse effect of making the vein angry because it was too constricted. It blew in less than 12 hours. Somehow, my Tuesday night nurse managed another one-and-done based purely on intuition.
I will never, ever forget how cool she was.
As I write this, it’s been seven days since I came home from the hospital and eight days since I cried about not having back pain. The immediate numbing effect of the lidocaine that was administered wore off shortly after I got home, but I’ve been very carefully tracking my pain levels and triggers so that if the time comes to repeat the procedure, I’ll know when it should happen and approximately how long I can go between injections. Although I had heard of nerve blockers prior to becoming a person with chronic pain issues, I didn’t realize how effective or long-lasting they can be.
Having real pain management available to me has made a tremendous impact on my quality of life, even just a week out. Knowing there are treatment paths available for not just my CVS, but also my chronic pain—which was originally presented to me as “just something I’d have to deal with”—makes dealing with episodes and flares that much easier. Understanding my triggers and symptoms allows me to advocate for what I need from medical providers. I’m incredibly lucky to have a robust and well-informed support system, to have insurance, to have access to good hospitals and knowledgeable providers who don’t gaslight me when I tell them something is wrong.
Hopefully, this was my last unplanned hospital stay in 2023. I’m excited and nervous about continuing my relationship with a pain management specialist, and hopeful that my follow-up appointment will be as beneficial for my overall health and well-being as the hysterectomy I have scheduled for May. Although it’s taken me a long time to get here and I don’t think I’ll ever be in remission from chronic illness, the progress I’ve made has been super impactful for me and my loved ones.
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