I’ve felt like I’m at the end of my rope with health problems lately…so like any millennial I have decided to air my grievances on the internet. 😬

Fair warning to the reader–I do not have a great track record with blogging at ALL. I have tried and failed to keep a blog several times over the years…mostly notably when I created a travel blog for my semester abroad and updated it all of once…while I was still in the U.S. But what I’ve been going through lately has been weird and frustrating and I feel as though 1) writing it down could be therapeutic 2) if I have friends experiencing what I am now or in the future I hope to provide some sort of camaraderie and/or reassurance that they are not alone.

Now, some context is probably helpful here. If you’ve been close to me the past several years you might know I was diagnosed with Hashimoto’s disease (autoimmune hypothyroidism) in 2017 when I was in the middle of marathon training. It derailed me for awhile but once I started taking levothyroxine for a few weeks I felt much, much better. I’ve had a terrible immune system my entire life but after starting the medication for Hashimoto’s I was taking only a fraction of the sick days I used to need. And I felt better overall with more energy and less trouble sleeping.

October 2020

Everything was going pretty well until the end of October 2020, about a week after my 31st birthday. (Ok, I guess relatively well because living in the COVID-19 world hasn’t exactly been a picnic.) Now, this is the beginning of a long story so bear with me while I tell it. A lot is centered around running and fitness because that is my barometer for how I am doing health wise. Prior to late October, I was feeling pretty fit again after an injury-filled summer. On my birthday I ran a half marathon long run for fun (and to celebrate!) two days after a hilly tempo + lifting session. And I felt good doing it!

On the day I consider as the origin of all my symptoms, I was out on a run with Nick when something just felt…well wrong. 2 miles into what should have been an easy paced 6-mile run my breathing felt labored and I was feeling much more fatigued than usual. I chalked it up to an off day…but then the next two days were the same. “Ok,” I thought, “I’m probably a little burned out.” After all this year has been one of the most stressful on record for a lot of us. So I took a week off running.

But when I laced up again a week later I actually felt worse. I felt very short of breath and my chest hurt. I cut it short (after about a mile) but my chest pain and shortness of breath persisted. I felt like I had a dumbbell sitting on my chest. I got a COVID test (because I considered these to be symptoms) that came back negative.

November 2020

Around this time I also started to experience sinus pain and headaches. After a few more days I was getting worse, so I went to urgent care and was prescribed antibiotics for a sinus infection. A diagnosis, finally (but I don’t think it was correct).

After 10 days and 20 pills of 975 mg amoxicillin/ clavulin I felt the same and scheduled an appointment with my PCP. I should also mention I was experiencing extreme fatigue at this time (mid-November now). I was barely able to run–if I did my heart rate was much higher than usual and my pace much slower. The shortness of breath and chest pain persisted whether I was running or not. I wondered if I had mono or something like it. I had a lot of “trying a mile and then stopping because it doesn’t feel good at all” days. I got a second COVID test, which again was negative.

My doctor ran an EKG (which was normal) and listened to my lungs (also normal). At this point my primary complaint was extreme, debilitating fatigue. My doctor thought I still had sinusitis and prescribed a second round of antibiotics. She also did some blood work but did not check a lot of things that could be causing my fatigue (like iron, Vitamin D, B12)–which frustrated me.

My sinus pain was about the same after the second round of antibiotics. Since I wasn’t feeling better, I called my doctor’s office and they told me to set up a virtual visit. At this time, my doctor lectured me about my high cholesterol, which honestly puzzled me since 1) I was there for sinus pain, 2) I’d never received access to the recent blood tests and therefore had no idea I suddenly had high cholesterol, and 3) HOW did I have high cholesterol? I am a runner and have been vegan since shortly after college. My doctor seemed to question if I was actually vegan and told me to stop eggs and dairy…which again I haven’t eaten in many years. She said something like…”oh it must just be genetics then. It’s not that high.” Ok… so maybe this is a standard response, but it frustrated me as the either the assumption was just that I am lazy/ eat poorly OR that there was something more serious going on that needed to be investigated and wasn’t.

As for my sinus pain she really had no advice other than “wait a bit longer and if it still hurts we’ll put you on a third round of antibiotics.” At this point I was really frustrated, since antibiotics did not seem to help whatever I had in the first place. The Netipot was my only relief even though using it scared me a bit; I had read more than one story about people dying after using a Netipot that had not been cleaned thoroughly enough.

Nevertheless, I did start to feel a little better after more rest. I was able to start running again and ran 4 miles on an unseasonably warm Thanksgiving…then 6.5 more on the following Saturday. I was feeling like I might have turned a corner.

December 2020

I was continuing to feel better into December, minus some one day where I had neuralgia, and then some glute pain which caused me to take a few days off running and lifting.

That came to a screeching halt right after Christmas when I went for a run and felt much the same as I had that week in October. I chalked it up to the stress of traveling to my parents’ house during COVID and running on snowy trails. I decided to scale back, but since then I have only felt worse.

January 2021, Part 1

I had one ok (albeit very slow) 3- mile run the Saturday after New Year’s Day. But then the following Tuesday I tried to run and could barely jog much slower than my usual easy pace for a few minutes at a time. For my New Year’s resolution, I vowed to figure out what was causing my health problems and to look for a new PCP who would take me more seriously. So far, though, none of the offices I have called have responded to my voicemails (even though their websites say they are taking new patients). It’s been incredibly stressful because at this state my gut tells me I need to get a second opinion.

I saw my doctor again and she was of minimal help. I mentioned I was extremely fatigued all of the time and could barely complete my usual tasks. Running was impossible for more than a few slow minutes at a time even though I’ve completed multiple long distance races over the past few years and had been running long as recently as mid-October. She actually asked “maybe you are just out of shape because you haven’t been working out during the pandemic?” I was furious…because prior to late October I was 100% keeping up with a regular routine! And I had been complaining about an inability to exercise normally during my last two visits. It felt like she was accusing me of being lazy. And if you know me, you know it’s hard to get me to stop exercising even when I need to rest. I cried on my drive home.

But I did get additional blood tests and a referral to a new endocrinologist which I needed. (I was also wondering if any of my illness could be attributed to my thyroid or possibly another undiagnosed autoimmune condition–as they sometimes like to show up in groups.) I set up an appointment with the new endo for April (earliest availability…yes it’s a pain) and am on a wait list for a cancellation. I’m only guessing at whether that might help since my TSH has been only minimally elevated (2.7-ish when my endo said it should be around 1) and my T3 and T4 are in a normal range. For context when I was first diagnosed with Hashimoto’s my TSH was around 7.0…and I honestly felt much better then.

January 2021, Part 2

I got the results back from my second round of blood work. My thyroid levels were the same but a few things that were previously not tested showed up out of range. My iron (total and % saturated only…frustratingly there was no ferritin tested) was very low. My hemoglobin was within range but lower than the last test in November. And my c reactive protein level was 9.9 when the normal range was 0-3. According to Dr. Google (granted, I know this isn’t the best source!) this is a generic marker for inflammation. Levels of 10+ are associated with serious infections or heart attacks (scary, but I don’t know what that means exactly).

I also had high lgG antibodies for Cytomegalovirus (3.4, normal is 0-3.0) and Epstein-Barr (the virus the causes mono). My EBV lgG was ABOVE 750 when the reference range was 0-18. Does this mean I had mono all along?

I should mention that there was never any call from my doctor at this stage, and I had to call the office to remind them to send me my results as they have a bad habit of never uploading them.

So… I had mono (maybe?) and seemed like I was borderline iron-deficient anemic. But how when I already take iron supplements?

January 2021, Part 3

Without any real guidance from my doctor other than the generic “it’s good to be active” I continued to exercise as my body allowed at a much lower than usual intensity. I downloaded the Peloton app and was doing weightlifting classes and treadmill boot camps (which are largely effort-based and combine treadmill intervals with exercising off the treadmill–I figure they could be a good reintroduction to running). I listened to my body and would take a break when I needed. And I didn’t skip rest days either.

On Tuesday the 12th I tried to run but honestly was slogging along at the slowest pace I have ever recorded and not feeling good doing it. So it called it quits very early. After I got home I decided to completely rest until at least the end of the week.

I also noticed that my left shoulder was starting to hurt, particularly when I breathed in. It was bearable, but I couldn’t sleep on that side without pain. It seemed to improve with rest.

January 2021, Part 4

In the middle of the night on Thursday the 14th I woke up in severe pain. My entire left side from the bottom of my rib cage to the ripe of my shoulder was on fire. Breathing in was difficult, especially deeply. I took 2 Advil (400 mgs in total), then 2 more 40 minutes later when it seemed to do nothing. I was crying and groaning trying to go back to asleep. Every position hurt–lying on both sides and my back, even sitting up.

Nick eventually woke up and asked if I wanted to go to the ER. I was afraid because COVID rates were on the rise in our county and I did not want to be exposed. We decided to wait a half hour and see if it improved.

Eventually I was able to sleep a little. We decided I would go to urgent care in the morning. (But I probably should have just gone to the ER, given that I was no closer to answers after my visit.)

I specifically chose a clinic not treating COVID patients nor running COVID tests to avoid exposure. But when I arrived I waited two hours to be seen, then three more hours while they ran some tests. I remember laying on the patient bed and praying they would figure out what was wrong. They ran a chest X-ray and urine test (both were normal) and eventually advised I just take 800mgs ibuprofen alternating with acetaminophen.

I drove home in tears no longer feeling like I no longer owned my own body.

Now?

I talked to my sister (a dentist) that evening. We were wondering if maybe the pain was from an enlarged spleen due to mono. I cursed myself for not mentioning the possibility during the urgent care visit (honestly I was just in so much pain then!) and decided to go to the ER if I got any worse. Fortunately taking high doses of NSAIDs for a few days has lessened the pain. But I am basically just laying on the couch unable to do much else. I have a follow up appointment with my PCP this week. Honestly I just want answers.

If you’ve gotten this far, thanks for reading. I will continue to post updates here as I am working hard to find out what’s wrong. I’ve gone from being a very healthy and active 31-year-old to a woman who has trouble staying awake at her computer after sleeping 10+ hours. My life feels a bit like a TLC medical reality show. If I don’t have mono I am beginning to suspect something quite sinister might be going on and it’s truly frustrating that my doctor has been dismissing how I feel and/or not taking my symptoms seriously.

I understand that the COVID-19 pandemic has caused additional stress on everyone, especially medical professionals. But to have my doctor imply multiple times that maybe I’m just lazy or need to clean up my lifestyle when I am extremely active and eat very well is not ok. And neither are the doctors who claim to be taking new patients only to never respond to my inquiries. Part of this may be due to my insurance being bad and not having many doctors in network…but at this stage I am quite honestly willing to pay to figure out what’s wrong and start getting better. Health is wealth after all.