Some Kind of "–itis" (Part 2)
Monday February 7, I got to meet with a cardiologist for the first time—virtually. And honestly WTH, I get the point of virtual appointments for some things but for a possible cardiac issue? I feel like that needs to be dealt with in person. Anyway, because I can’t catch a break or have anything “normal,” my 24-hour monitor data returned hardly anything out of the ordinary. This was in direct contradiction with the Kardia 6L device but this cardiologist was pretty darn old-school and waived off the “new technology.” How do I know he was old-school? He asked me if I “work outside the home” … … I didn’t quite catch on to the phrasing there until Andy pointed it out to me after the call was over and I answered with a, “no, I work at home” and moved on like an idiot. So, since my monitor returned nothing abnormal and he wasn’t keen on looking at the Kardia data, we dove into symptoms. I again got asked if I was having anxiety or could be having a panic attack (honestly, I might punch the next person to ask me if I’m anxious), and went through my whole story start-to-finish for what felt like the millionth time. He was stumped and kept circling back to symptoms until I mentioned that I couldn’t sleep because of chest pain. That got his attention.
“Well, that sounds like pericarditis,” he said. He wrote a prescription for colchicine (an anti-inflammatory typically used to treat gout—of all things—but also used with success against pericarditis that isn’t self-resolving) and ordered an echocardiogram so we could look at my heart’s function and to see if there was any effusion or constriction that could be indicative of more serious issues. Feeling hopeful that perhaps I’d finally received a diagnosis I could act on, I had Andy pick up my prescription and I started a course of colchicine that night. The next day, my chest pain had started to dissipate and I was feeling a bit better. I noticed that I was pretty fuzzy and weak feeling but I attributed that to the beta blocker, which I was still adjusting to. My appetite disappeared that morning but came back by the evening and, overall, I felt generally better. Until I took a shower… I’m a hot shower fanatic. I love being surrounded by steam and heat and generally look forward to showering after any activity or before bed. That night, as soon as I stepped into the stream, my body started to shake. My chest tightened up, I lost some of the strength and dexterity in my left hand and I freaked the fuck out. I crawled out of the shower and began sobbing in terror. I was sure I needed to go back to the ED. But, as I’d been informed before, they couldn’t help me, so I sat in my misery in bed and waited for my tears to dry up and my body to calm down. After crying for some minutes that night, I slept better than I had in weeks.
I had a labs overview appointment with my normal ND the next morning. I discovered that I was once again anemic (why does this keep happening to me?! I cut out gluten in the name of my ferritin stores!), and my thyroid levels were elevated (this can be caused by low ferritin). My ND listened to my heart to check for the telltale “pericardial rub” sound that coincides with pericarditis and she heard nothing out of the ordinary. Since I was otherwise feeling better that morning, she let me know that she wanted to hand my care off to the ND cardiologist specialist I had an appointment with later in the week so I wouldn’t be bouncing between three doctors all the time. It was nice having things simplified for once!
Aside from the shower incident the night before, since I was still largely feeling much more normal, Andy took off to go climb for a couple of hours later that morning. About 30 minutes after he’d left, I started to feel really, really bad. I was so weak that I could barely lift my cast iron skillet out of the oven, had lost my appetite altogether, and felt a bit like a pinball in a machine as I bounced around the house with fuzzy vision. By the time Andy came home, I was chugging water (I was so thirsty!) and on the verge of calling 911 again—my whole left arm and chest had become tight as a drum and my hand was shaking. I felt like I couldn’t breathe and was generally terrified that I was having a heart attack. Andy chatted through the episodes with me and we realized that the only major change in the last 48 hours had been the introduction of the colchicine, the medication that was helping me but also seemed to be making my body revolt. I called the cardiologist’s office and spoke to a nurse about what was going on.
“Oh, I’ve never heard of anything like that happening before,” the nurse said. “But if you feel like you need to stop, skip the dose tonight and see if your symptoms improve. Call us back tomorrow if you decide to stay off of the colchicine altogether.”
Decision made, I skipped that night’s dose, ate a normal meal that night, slept decently, and awoke with a growling stomach. That morning went pretty well and I was back to the “normal” fuzziness I’d been feeling when I was just on the metoprolol. I called the cardiologist’s office back and let them know that I’d be staying off the colchicine. “Well, pericarditis is usually self-resolving so you should be fine without it but you can also keep taking ibuprofen if you feel like you need it,” the nurse said. Feeling okay with that plan, I went ahead with my life and waited to see the ND Cardiology specialist.
Over the next few days my chest pain returned slowly and I was struggling to sleep without being completely propped up on a nest of pillows. My neck and back were aching from keeping my head at an odd angle and I was generally exhausted by Friday. I was still completely unable to drive so Andy drove me into my first appointment with Dr. Jana Redding, who happened to be the first doctor I met with (aside from my regular ND) who took anything I had to say seriously. She listened to my story, listened to my heart, took all of the vitals, and ordered a host of labs. She let me know that I had “quiet heart sounds” which could be an indication of low blood volume. She also performed an orthostatic test to see I was possibly having some form of POTS, which had been hypothesized by my PT as well. Before I left, since the labs would take a week or more to process (thanks, COVID), she started me on some supplements and treatments to at least provide some relief. I started taking a homeopathic remedy called Coro-Calm to help calm my heart/nervous system whenever I started to feel symptomatic; I ordered a natural anti-inflammatory called InflaCalm to help fight whatever inflammation was clearly causing at least some of my symptoms; I planned to increase my sodium intake my supplementing with 3000mg/day plus 3 liters of water to help with the blood volume issue; and I started on the Milner Acetylcholine Protocol, which has been proven to help with arrhythmia. Plan in place and feeling rejuvenated, I took off into the weekend and hoped for some relief.
Two days later, I managed to drive to the barn (with Andy riding copilot in case I needed a driver swap or some support while I was staring at my giant children). I toodled around, got the girls groomed, did supplements for the week, and said hi to my friends before heading back home to get ready for Carlie’s bridal shower. I felt exhausted and only managed to drive the first 10 minutes home before pulling over and having Andy take over. I was sad to have “failed” in this task but tried to hang onto the improvements I’d seen since starting the beta blocker and the other supports. I was able to have a really enjoyable time with family at Carlie’s celebration, ate a bunch of amazing food, and kept my symptoms at bay by hydrating aggressively and standing as much as possible. It was a really excellent day overall.
The rest of the weekend was uneventful but Andy was able to leave me alone for stretches of time without me feeling debilitating symptoms. I still cried pretty much every day in frustration over the shitty turn my life had taken but I was trying to learn to focus on how things had improved, not at how awful they still were.
I had another more major “spell” on the Monday before my echo. I decided to try to bring in the jug of urine I’d been filling for 24 hours (yay labs!) into the clinic but made it about 6 minutes into the drive before I became symptomatic (short of breath, chest tightness, palpitations), pulling over and crying in a parking lot for 10 minutes. I took backroads home and talked to Andy the whole drive back home. Luckily my husband of the year took my JUG OF URINE into the clinic for me later that day so my lab results wouldn’t be delayed more than necessary. I definitely felt all the feels in those moments!
Wednesday morning, I had my echo which was highly educational and I had a good long chat with the echo tech about what was going on with my heart. I think she could tell how anxious I was about what the images would show so before I left, she said, “your heart is boring, and I don’t get to say that very often in my line of work.” She also emphasized that she isn’t a cardiologist so I needed to wait to listen to his assessment the following week before doing too much of a happy dance.
Again, I had a few days of “closer to normal” life. I still didn’t do anything “fun,” but I was able to drive into the grocery store by myself, and could get some sleep as long as I was propped up. I also got a ride out to the barn with a friend of mine so I could spend some more time out there mid-week. I ended up getting in TWO BARN DAYS that week (Andy co-piloted/chaperoned visit #2) and it was amazing.
The sodium pills were giving me the most trouble since they turned my stomach like nobody’s business, and I was feeling really self-conscious about the amount of water I’d started to retain but I was trying my best to ignore those feelings. It’s hard when, as an athlete, you place a lot of weight on your appearance (do I look strong, do I feel fast, does my body feel ready?), only to watch all of that slowly fade away with a sedentary lifestyle and medication side effects. I continue to struggle with these emotions.
As I’d seemed to stay on the “improved” side of the spectrum, I felt okay jetting off to C & A’s combined bachelor-bachelorette weekend at the coast. I’d just take it easy, go to bed early, and continue to avoid all of the general awesomeness and exuberance that comes with these kinds of amazing weekends away. I felt so good that Friday that I even managed to drive us all the way to the coast! Cue the happy dance music for that.
The beach weekend was really fun. It felt nice to be able to properly celebrate my sister’s coming nuptials with friends and although I didn’t sleep as much as I wanted to (the house had very thin walls so my ‘early to bed, late to rise’ plan didn’t really pan out), which led to an influx of symptoms on Saturday night and Sunday day, it was generally a really awesome time. I had some guilt and sadness over not being able to fully enjoy long beach walks, the brew tour, and the extreme ping pong and foosball tournaments that happened throughout the weekend.
On Tuesday of the next week, I met with a new cardiologist (the one I’d been originally referred to) to go over my symptoms and the findings from my echo. This cardiologist confirmed that there is nothing physically or functionally wrong with my heart and said that I could stop taking the beta blocker and the ibuprofen altogether if I wanted to. He then said that I could exercise but I needed to play it by ear so I didn’t overdo it right out of the gate. Before signing off, he said we should follow up in four months. Feeling slightly heartened but also not feeling very inspired about my journey back to normal because I still didn’t have a diagnosis, I tried to look at the bright side: there was nothing wrong with my heart that would appear on an echo. I was still chasing a very elusive white rabbit but at least the signs were pointing toward something “other” and not something that would lead me into heart failure or something horribly life-altering.
Things took a new turn for the worse that afternoon. I managed to get down my second sodium pill of the day but only barely. After about thirty minutes, I was bent over the toilet, violently puking up the contents of my stomach, which happened to include the NSAIDs I’d taken. I’ve never vomited so hard in my life. I actually burst some of the capillaries around my eyes and was struggling to breathe between bouts of vomit. It was not my finest moment.
I took the rest of the day easy, did the BRAT diet and decided against taking more NSAIDs to keep some burden off of my stomach. I had no more nausea that night but my lingering chest pain began to worsen throughout the night and I barely slept. By Wednesday morning, I was in a fair amount of pain at all times. My back hurt, I had chest and back pain whenever I talked loudly, took a deep breath, or cleared my throat. Laughing wasn’t an option and I mostly hobbled around between my various at-home “work spots” so I could get my job done while I waited on a call back from my cardiologist’s office and my ND specialist about what the heck was going on. My ND called back first.
“Has anyone mentioned costochondritis?” she asked. She’d been consulting with another provider about my case and they were both coming up with educated guesses at this point. I’d never even heard of this particular “itis” and said as much. Basically, it’s an inflammation of the chest wall and can be caused by a virus. Since I’d not felt sick at all in several years, there was a likelihood (if this was the cause of my pain) that I’d contracted a virus and my immune system had fought it off so expediently that I didn’t know I’d had it. My immune system likely continued its attack on my body, inflaming my chest wall and creating the semi-constant chest pain I’d been experiencing for almost six weeks. I just didn’t know how severe it was because I’d been masking it with various flavors of NSAIDs for the last month. When I’d puked them all up, the pain returned in force.
“I’m going to prescribe a short-course of prednisone. I don’t do this lightly but I want to, a) help provide you with some amount of relief, and b) I think it will be a helpful diagnostic tool to see how much of your symptoms are due to inflammation and how much are due to the other things you have going on right now.” I had an appointment with her two days later to go over labs and we would check-in about the impact prednisone had during that time as well.
Not long after we hung up, I got a call back from the cardiologist’s office. I explained in detail what had happened and the nurse surprised me with her response, “your chart says your symptoms are related to pericarditis so everything should continue to resolve.” I paused in surprise before replying, “the doctor never mentioned that he was going to attribute my symptoms to pericarditis, but if that’s what he’s saying, then why isn’t it improving? This has been going on for almost six weeks and rather than improving in any way, I seem to have gone right back to my initial discomfort the moment I was off NSAIDs for 24 hours.” She didn’t really have anything to say to that… but I let her know that my other (insert “better”) doctor had prescribed me prednisone to help get my inflammation back down. She agreed that that plan might be helpful. I tried not to roll my eyes when I hung up.
Since prednisone can make you feel wired, I held off on taking it until the following morning. Within hours, my pain started to dissipate and by the afternoon, I felt like I could run a marathon. Andy rode copilot again while I went out to the barn and for the first time in nearly a month, I actually got Mia out by myself and turned her out in the arena for some exercise by myself. I also got Bess groomed to within an inch of her life (the mare is almost done shedding out her winter coat and it’s not even March yet!) and felt chipper and happy for the rest of the evening, even managing to drive us home without a single symptom! I felt genuine hope spark in my chest and tried not to cling onto it with too much force.
Friday (yesterday now), I went in to see my ND specialist to go over labs and to check in about the prednisone. She was happy to hear that it had helped me and was hopeful that this short, high-dose series would kick whatever this inflammation was to the curb (costo, myo, or peri). In the meantime, I also needed to prepare for at least another month of downtime: no riding, no running, no real exercise of any kind that could further deplete my body while it rebuilds itself). In addition to everything else that was going on inflammatory-wise, I was in endocrine dysfunction/adrenal deficiency (smart people please correct my phrasing here). Essentially, my body wasn’t producing anywhere near normal amounts of important hormones and chemicals like cortisol and norepinephrine. Best guess (based on our current working theory of a viral “itis/ditis”) was that when my immune system went all “extra” on me, it also took out my adrenals. Super fun stuff, right?
Those results helped explain pretty much all of the other symptoms I’d also been experiencing: fatigue, body shakes, weakness, inability to thermoregulate (literally at all. Our house would be 70 and I’d be wearing two puffies), on and on. This was not the news I’d been hoping for. To help get all of that back online, new plan is to start a long (6+ weeks) course of hydrocortisone once I’m through the prednisone and will be switching to a new low-dose beta blocker next week to help reduce some of the fuzziness I get on the metoprolol and which has been shown to help with adrenal dysfunction to some degree or another. The piece of very good news I did receive was that none of the markers for cardiac distress/failure were showing up in my labs so whatever was going on with my body hasn’t been damaging my heart.
I cried a lot when I got home. I have been watching my entire spring drift away with every passing week and was also seeing my first show season with Mia slowly evaporate. I miss being outside—and skiing!, I miss spending time with friends and laughing, and I miss the independence that comes with being a healthy, young person. And, I still only have a “best guess” as to what’s going on with me since all of the hypotheses so far have all been for self-resolving conditions that have not been resolving in any way, shape, or form in my particular case.. My symptoms do line up well with costochondritis. For the last six weeks, I’ve complained multiple times about feeling like my sternum needs to pop but being unable to pop it (sternum pain is a marker for this uncommon condition). I’ve also fallen deep into the land of forums and there are a billion people who say they have an influx of pain and symptoms whenever they drive—the result of poor posture collapsing the chest wall coupled with light chest pressure from the seatbelt across their sternum. I’ve been trying not to be too hopeful that I’m on the right path but I’m trying to keep my tears away.
I am hopeful that over the next month, I’ll feel well enough to at least drive to the barn a few days each week to see my girls and my friends. I can’t thank my barn family enough for everything they’ve done and will keep doing to help reduce the emotional burden I carry over not being able to see my horses often enough for my/their sanity. I’m also hopeful that I’ll be able to start doing some gentle yoga once I nip this inflammation in the bud. Wish me luck. And hang on to and cherish your health. I'm six weeks into this journey and I've never been so debilitated. Every single day that I feel better/don't feel like I'm going to have a heart attack is like holding a bright star for me. I've never had a chronic illness before but I will say that this tiny taste of what it feels like to be run through the ringer of specialists who either won't listen, don't care, or have only a best guess has been exhausting. Mad props and big hugs to all of you who deal with this on a routine basis. It has been an eye-opening experience with our messed up healthcare system and I hope to never, ever go through this again.