Some Kind of "-itis" (Part 3)
Hope is a funny thing. It’s motivating, uplifting, and inspiring. When I first started the prednisone as treatment for the new theory of “costochondritis,” I felt a whole lot of hope. And I felt a whole lot better… for a couple of days. As soon as I started tapering the dose down, my previous symptoms began returning. I was dreading every ‘lowered dose’ day because I was wondering which of my body’s previous bag of tricks would re-emerge to greet me. Don’t get me wrong, the prednisone did help. I was able to sleep almost completely flat at the end of the taper period but I was still managing pretty intense chest and back pain/pressure at regular intervals—like, whenever I did anything other than sit on the couch all day. The upside was that I knew for sure now that there was a major inflammatory component behind everything that was going on. The downside was that regular, over-the-counter NSAIDs weren’t doing a whole lot to keep me comfortable now that I was off of them.
Right before coming completely off the prednisone, I switched to a new beta blocker, propranolol. I was still struggling on even the low dose of metoprolol and had some fuzziness/cognitive shortcomings that continued to linger and make me feel more out of it than I wanted to. Propranolol is a non-specific beta blocker that has been shown to be helpful in treating endocrine insufficiency as well so my ND was hopeful that I’d be taking out several birds with one stone. The only issue was that my new instructions were to take ½-1 full 20mg tab at night before bed, then another ½ during the day if I became symptomatic. Propranolol doesn’t have the same ~24-hour effect as metoprolol so I wouldn’t be a BB zombie all day long, even if it did impact me a bit. Downside with the new instruction, was a shiny new symptom: tachycardia!
The three mornings after I made the switch to taking prop only at night, I was sitting at around 95-115bpm within 30 minutes of getting out of bed. I had Andy manually verify my pulse on these occasions as well since it was so out of character for my heart to be so distressed over something as simple as getting out of bed and I was feeling mistrustful of technology—remember, my normal resting heart rate is in the low 40s whenever I chill out/sleep so this was a HUGELY uncomfortable leap. The first time this happened, I took a ½ propranolol like I’d been instructed and brushed it off as a fluke. When the same thing happened the next morning, I called my doc to let her know what was going on (spoiler alert: she was out of town and couldn’t get back to me) and sort of hunkered down hard until my appointment with my new cardiologist (third time’s the charm, right?) on Friday.
Andy took me to the barn on one of these evenings and I cuddled the crap out of my bay baes for about an hour before going home to do absolutely nothing else. Oh, and I also tried to go for a walk with Cinder that week. It took me nearly 30 minutes to make it ¾ of a mile and by the time I got home, I was dealing with such immense chest/back discomfort that I just sat on the couch and cried intermittently for the rest of the evening. Watching me struggle to chop veggies for a salad that night was probably the entertainment highlight of Cinder’s life.
I was having such a rough week that I ended up just going to the gym with Andy and working on some freelance projects while a sea of climbers got their swole on around me. I managed to keep my shit together right up until the end when I got up to go pee. I made it back to my bench but shortly after, my whole body started shaking—I was freezing cold all of a sudden. We left pretty much immediately and I trembled, bundled up in the truck for the whole drive home.
Friday rolled around and I was cautiously eager to meet the cardiologist I’d been waiting five weeks to see. I was not disappointed. From the moment he walked into the exam room, things were better than I could have hoped for. He a) didn’t think I was overreacting, b) didn’t think I was a hypochondriac, c) was very surprised that no one had ordered a cardiac MRI for me yet, and d) did not think it was acceptable that I was still symptomatic after such a long period of time. We talked about all sorts of things and he really listened. That’s right, people, HE LISTENED TO ME! I explained my history and when I’d mentioned my previous adverse reaction to colchicine, he asked, “did you try lowering the dose?” Since my original cardiologist had just told me to stop taking it altogether, I just said that in reply.
“Hmmm, well why don’t we try lowering the dose and the frequency to try to get you some relief, if you’ll tolerate it.” He paused before adding, “we have to tailor the medication to the patient.”
It was like a beam of sunshine had entered the room when those words came out of his mouth. I’d never met a western physician who’d said anything remotely like that to me—let alone a very respected specialist! He then went on to say that as such an active person at my baseline, my sudden exercise/activity intolerance was concerning. When I mentioned that I was taking hydrocortisone because of my endocrine insufficiency, he was like, “interesting…with catecholamine levels as low as yours, we should be scraping you up off the floor, not having to put you on a beta blocker to keep you out of tachycardia… based on everything you’ve told me, it sounds like you might have myocarditis.”
He gave me a once-over, explaining that if I’d had costochondritis, I would have been able to self-diagnose because I would have been painful to the touch, which hadn’t been the case since the whole fiasco that was my current life had started. Before I left, he put in the CMR order and said that we’d consider doing cardiopulmonary testing depending on what that came back with. We decided to try putting me on propranolol morning and night to see if it helped level out my ever-varying heart rate. He then told me that I should keep him informed of how I was doing, and to upload all additional data at my disposal: Kardia 6L readings and any relevant Oura ring data as well. I went into the weekend feeling a little more hopeful than I had the entire 7 weeks prior. My new colchicine regime would be a ½-tab every other day, moving to a ½-tab every day if I managed to tolerate that dosing—a big drop down from my previous program. All signs continued to be pointing toward cardio.
That weekend, I made an attempt to drive myself to the barn but I was having such sharp and constant chest pain that any minor bump in the road was causing discomfort and the sitting position was making it more difficult for me to get a full breath of air. I abandoned ship less than 10 minutes from home... I then cried (are you getting tired of hearing about all of my tears yet?) a lot when I came home and waited to calm down enough that Andy could take me out there for a bit. It was definitely an uncomfortable drive but I was better able to guard myself from discomfort and sit in a more stretched out position so I could breathe a bit easier. This was an unproductive day but I was at least able to see Mia and brush Bess and get my supplements sorted out for the following week. It was a nice reprieve from reality but I spent the rest of the evening sitting on the couch like a zombie, barely keeping myself comfortable.
The next few days were rough. The extra propranolol was helping my tachycardia which was a nice relief but I was continuing to have major sleep issues—lots of pillows propping me up, lots of trouble staying asleep, and my lowest resting heart rate was up to 47 overnight. On Monday, I called Providence to get my CMR scheduled and they told me I was looking at at least 8 weeks until they could fit me in. Devastated, I called my cardiologist’s office to give him the bad news. The nurse there said I should try OHSU to see if they had any earlier availability but that she would see if their team could find a way to get me in sooner. The next day (Tuesday), I got a call from Providence saying that they had an opening on Thursday. Happy tears all around, I jumped on the appointment and sent a note of extreme gratitude to my cardiologist. I wasn’t sure how he’d managed to get me in for the appointment months ahead of the usual openings, but I wasn’t going to look that gift horse in the mouth.
I continued to struggle but after seeming to tolerate the baby dose of colchicine, I moved to taking it daily on Wednesday. By that evening, I was feeling better than I had in days and I was able to lie pretty close to flat that night so I actually slept. Thursday morning rolled around and I was feeling nearly chipper by the time I was rolling into my CMR… which was terrifying by the way. I’m pretty darn claustrophobic and if you’ve never been in a MRI machine, you won’t grasp the level of confinement I got to experience for a lonngggg time. I may have missed the memo on the scheduling call but cardiac MRIs are a 90-minute marathon of “breathe in, breathe out, hold your breath” so it was pretty much the opposite of relaxing. I cried for the first 10 minutes after they put me in the machine and the tech had to talk me into a state of calm. I pulled on my big girl boots and dove deep into my happy place. There was a nice spot on the roof of the machine that held my focus while I did not move at all. The other upside was that whatever was improving allowed me to lay flat for the entire test, so I didn’t have any major discomfort, or any discomfort aside from emotional turmoil. Big win.
When I left the clinic, I was ready for answers. I felt like we’d clearly found our diagnostic tool and we’d have a foolproof treatment plan to follow from here on out.
Boy was I wrong... I think.
The next day, I got a jingle from the nurse at my cardiologist’s office. The PA covering for my cardiologist that week had reviewed my CMR results and the report and had determined that there was no indication of either myocarditis, or pericarditis still present. This was GREAT news in so many ways. But it was also a bit confusing... For nearly 8 weeks, every doctor I’d met with had decided that I was experiencing some sort of heart issue. But now I had an echo and a CMR indicating the opposite. Did I have pericarditis that magically resolved itself during a one-week program of colchicine? Obviously things had improved during the burst of prednisone but they’d certainly taken a downturn when I was off of it. I was confused and frustrated.
If there was no inflammation, why were the meds for pericarditis still alleviating my symptoms, most of which aligned quite nicely with the symptoms for that condition? Why did I go into tachycardia when I tried to reduce my beta blocker? Why was I still very much unable to do more than walk around the house six out of seven week days? WTF was happening to my body? I basically asked the nurse to relay all of those questions to my cardiologist and asked what the next steps were. I tried to focus on the positive, no heart problems, yay!, but was also worried that I was looking at a shiny new series of “which specialist now?” doors.
The brightside to all of this chaos that I clung to desperately is that I knew that I was actively treating the endocrine issue. I’d managed to take a slightly warmer-than-lukewarm shower that week after my hydrocortisone dose was upped to the next level (the dose increases every week), which was a major quality of life improvement.
As the days wore on, my chest pain slowly disappeared, replaced by a general sense of heaviness in my chest and occasional, sharp pain whenever I took a deep inhale. I also continued to have the same breathing challenges that I’ve had since January 17: sitting in a ‘chair’ position, or scrunched in any way, or occasionally while lying down flat, makes taking a deep breath nearly impossible. Could there be lung inflammation included as the bonus element of my clusterfuck? I decided to relay this info to my cardiologist, too, while I waited for a firm “what the heck is wrong with me?” answers from him.
A couple days later, I got the answer from the nurse: my cardiologist said it was likely that I’d had pericarditis and that it had resolved by the time we’d done the CMR (about 8 weeks post-symptoms onset). If you’re confused, you’re not alone. We’d circled back to the original diagnosis for the thing that should be self-resolving but never resolved until I was put on a heavy nuke of steroids and a niche anti-inflammatory. So, why did the original two cardiologists keep telling me it should just get better on its own without treatment? That’s a question I can’t answer… Either way, pericarditis can be a recurrent condition so I needed to continue taking the colchicine for three months, not just because it was helping me feel better, but because it’s the treatment of choice for keeping it away for good. He also felt like I should attempt to return to some degree of activity in hopes that it would help me turn the corner. The latest and greatest suggestion is a 10-minute walk and/or some easy yoga, just to see how my body responds to “real” activity.
Regarding the lung/breathing issue, that was a bit puzzling. My cardiologist asked me to keep him informed of how I handle this low degree of activity. Do I get worse? Do I get better? Stay the same? Do things evolve further? Will something new and exciting appear out of nowhere? If the answer is anything aside from ‘getting better,’ cardiopulmonary testing is on the table.
Figuring out how to balance the introduction of activity with recovering from adrenal insufficiency seems like one of the big challenges I’ll face in the coming weeks. But luckily, I do have an appointment with my ND specialist before the end of the month. And, every week gets a little bit better on that front. Showering is better, I’m less bundled up than I have grown accustomed to, etc. Getting cold or overly warm is still a bad idea and I need to try to keep any and all stress out of my life (a good lesson for life, amiright?), but those are easier to mitigate for when my body isn’t constantly at war with the elements.
One of the most frustrating components of this diagnosis is that if my original cardiologist, who I met with in early February, had suggested that I simply lower the dose of colchicine he’d prescribed me after I’d had an adverse reaction to the standard dose, I would have likely continued to improve starting then, rather than having to wait another month before my chest pain/pressure/inability to sleep flat symptoms improved/disappeared. Yeah, the other crap would have continued and I still would have needed all of the extra labs, etc, to get the source behind my inability to thermoregulate/my extreme fatigue, but rather than waste so much time and energy chasing another diagnosis because my “self-resolving condition wasn’t resolving,” I would have moved on to sorting out the source(s) of my other pain and frustrations. Why can’t all doctors just follow the same philosophy of “fit the medication to the patient?” * soap box dismounted*
In the last couple of days, I’ve managed a couple of new firsts since I first got sick. I was able to go for an easy walk with Andy and Cinder (was supposed to be 10 mins, ended up being 17 because I clearly don’t understand how time works). I felt largely well throughout the duration, with the exception of a couple weird instances of feeling like I was ‘floating,’ which, not gonna lie, was actually kind of fun? Those went away when I slowed down my pace. I also managed to do some sun salutes (hello jello muscles!) and drive TO THE BARN. BY MYSELF. on Thursday. Without being overcome by symptoms. I’m still not able to breathe as well as I’d like while I’m in the car but I’ve found that I can use some learned breathing techniques to keep my internal governor from losing their mind when I feel oxygen-deprived. Growing up with asthma, I have a deeply rooted fear of suffocation; whenever I feel remotely low on O2, I just freak out because I know very intimately what it’s like to be unable to breathe. I’m learning to manage this symptom well enough to go about my daily life while we see if it resolves with the other issues, or if it needs treatment on its own. I’ve also managed to backslide in the last 24 hours. Did I ‘overdo it?’ Not likely. I expected to feel a bit crummy post-activity for sure but some things have actually gotten worse. I’m now dealing with near constant dyspnea accompanied by ongoing back pain and pinpoint chest discomfort. I literally get short of breath putting my shoes on. So in short, I don’t think the exercise program is working…or at least it’s making me feel so much worse that I’m not sure I even want to keep trying to exercise.
So, some things are improving, kinda. I have two diagnoses (one based purely on symptoms) that we’re actively trying to resolve with medication and some lifestyle changes (like doing things again). I seem to be able to drive again on my good days. And my team has at least narrowed the field down enough that any and all lingering annoyances and symptoms will hopefully be easier to repair once the other major problems are gone. Am I worried I’ve been misdiagnosed? Yes, because without concrete evidence of pericardium inflammation, I fear that there’s another issue at the root of all of this. Clearly I’ve been watching too much House (honestly, how did it take me so long to discover this show?!). But, I can also look at my saga rationally and say that three specialists have agreed on this diagnosis based on a combination of symptoms and diagnostics, and the treatment, which is pretty darn specialized, is kind of helping. I’m also trying to trust in the medical professionals that are actively trying to help me, rather than poo-pooing me like the previous ones I’ve worked with.
I’m still very much concerned about the lung issues, my ongoing upper back pain, the intermittent weakness I get in my left arm, and the lightheadedness that seems to come and go at will. It’s also concerning that I seem to be reliant on the beta blocker to keep my heart rate within a normal range, despite all signs of inflammation being gone at this point. Hopefully I’ll get answers to those questions in the coming weeks (along with either a concrete diagnosis or some new theories to try to treat) … and here’s hoping I’ve turned the page in this really annoying and overly long novella that has been my 33rd year of life.