Enthesitis
Enthesitis
The last three months have been an incredible physical, mental, and emotional challenge. It felt like a test that continually pushed the limits of what my brain and body could handle. I may have disappeared from the outside world for a while, but that time certainly didn’t go by quickly for me. Things are better now, and I’m sort of able to do normal people stuff again - with some help from a few painkillers.
One early morning in October, just before the sun came up, there was an incredible pain in my chest. It wasn’t the feeling of a heart attack, but instead more of a volcanic burning sensation of lava stuck in my upper body. It took at least an hour to be comfortable enough to try to sleep again, but things just weren’t right after that. For the week following, I was so incredibly tired that it was difficult to hold up my own body weight. In fact, I briefly wrote about it as the previous post on my blog.
Work was interesting, as I was always dizzy and tired while experiencing frequent heart palpitations. I’d sit in a meeting and make it through maybe 10 minutes until my body was nagging me to pass out. My chest was fluttering constantly, and it was difficult to concentrate on what people were saying, much less care about data and analytics. My coworkers and management are awesome, though. They were very supportive of my limitations and pushed me to take time off.
After talking with my doctors and slowly trudging through the week, things had cleared up a bit - that is, until the nightmare began. That morning started like any other. I woke up, made a smoothie, checked my email, showered, got dressed, and drove the kids to school. However, my neck was a bit tight. My neck sometimes gets tight when the room is cold, so it didn’t feel like anything out of the ordinary. It could move slightly, and the pain certainly didn’t keep me from making that short morning drive. A few hours passed, and my neck seemingly got worse and worse. Eventually, I couldn’t move it at all without severe pain. When you visit a hospital, doctors will ask you what your pain level is so they can gauge how much attention and priority you need. The neck pain went from a three to a nine real quick. I tried lying down on the floor to relax and stretch in hopes that keeping it straight would give some relief. However, I had made a huge mistake in not giving myself a way to get up. I tried to move, and the only response from my body was to scream in pure agony. My wife was way on the other side of the house and came running to my office in a panic. “What’s wrong?! Are you okay?!” she exclaimed. “Nothing. I was just trying to sit up.”
The days went on, and nothing made the pain go away. Practically everyone said that my neck needed heat, cold, rest, anti-inflammatory foods, lidocaine patches, and massage. Nothing worked. Not even a little. I tried sleeping on my bean bag chair since it cradles your entire body, but any movement whatsoever woke me up. Sleep was practically non-existent. Life had simply become only pain and sleep deprivation. I would grab sleep whenever possible, with an hour here and 30 minutes there. To this day, I’m convinced that neck pain was one of the worst things imaginable.
Weeks later, my right hip flexor started to feel weird. Suddenly, I couldn’t walk. Flexibility was gone, and now there was pain if my right leg was outstretched. In October, my average resting heart rate went from my normal 55 bpm to an elevated 115 bpm. The doctors say that when your body is in pain, your heart will compensate in a ‘fight or flight’ response. When Halloween rolled around, we took the kids Trick or Treating, but it was a slow trek getting through the neighborhoods. My eyes were focused on my watch throughout, with Garmin frequently alarming me that I was experiencing “an abnormally high heart rate.” The good news is we made it through, and the kids got their candy, so it was all worth it.
The following weeks brought migratory pain. My right leg would feel better, but then my back would have that pain. I’d be unable to get out of bed one week, then unable to pick up things with shoulder pain the next. Thanksgiving was quickly approaching, and my right foot began to swell like Thor’s hammer. The ankle simply disappeared behind a bloated mess of varying colors and severe pain. We had our typical large party on Thanksgiving, but after the guests left, my wife drove me to the emergency room. They gave me oxy for the pain and shoved a 4" needle into my foot to drain and test the inflammation. When I mentioned earlier that my neck was a nine out of 10 pain, well, that was reserved for the foot needle. That was, without question, level 10 pain. The doctors didn’t give me a stick to bite, so instead, my fist nearly went through their wall a few times.
I forgot to mention that my primary doctor was about as useless as my previous one. The first visit resulted in muscle relaxers as she said I probably overworked my neck. That’s possible since I exercise and may have slept wrong, but it was very unlikely. The next visit, she prescribed me more muscle relaxers and gave me a diagnosis of Sciatica. I asked, “How is it that this ‘Sciatica’ is affecting my neck, my right foot, my left and right hip, my back, and shoulders?” She said, “Oh, those are unrelated. Although I’m going to give you an x-ray for your left hip. Here’s more muscle relaxers.” It wasn’t until we went to the ER and called Kaiser’s advice line did they do tests and refer me to a Rheumatologist. Needless to say, I have a new primary and will hopefully never talk to any of these garbage people again.
Through this experience, I talked extensively to AI. It knew way more about what was happening to my body than my doctors did. Not only were the conversations highly educational, but the diagnosis Kaiser eventually came to was exactly what AI was saying months prior.
So now I’m diagnosed with Reactive Arthritis with Enthesitis. If you happen to browse Reddit for those afflicted with ReA, you’ll hear many say that no one understands this level of pain unless you’ve had it. They’re not exaggerating. There has been no worse experience in my life than standing up and having a sharp pain shoot from your foot through to your shoulder, while your body is begging you to collapse and not move at the same time. My wife has watched me scream in agony, cry in desperation, break things in anger, and beg for death in hoping for any sort of relief. Like I said, it’s been a very long holiday season, and I’m not sure when it’ll end.
On that note, I’ll finish this with a funny story. During the time my primary doctor misdiagnosed and delayed care, I was sleeping maybe two hours a day - 30 minutes at a time. I was smoking quite a bit of weed in hopes of getting some sleep and pain relief. One morning after watching YouTube throughout the night, I’m exhausted and figure a 30-minute nap was possible. I reach for some weed, smoke a bunch, then put my head on the pillow. As soon as I get my body into a position where the pain isn’t awful, I start to drift off. Of course, that’s when my phone vibrates, quickly pulling me back into reality. “Ready to go?” my wife messages. Huh? Oh shit! It’s my kid’s parent-teacher conference today. “Is it 11:00 already?!?” I’m high, haven’t slept in weeks, and also feeling a bit nauseated. This was clearly not going to go well.
I can’t imagine what the teachers thought of me, but I can certainly tell you what was going on in my head: “This chair is ridiculously uncomfortable!” “How long have I been sitting here?” “It’s only been nine minutes?!?” “I’m 100% going to pass out.” “If I lay down on the floor pre-emptively, will that be weird?” “What if I collapse on the floor? Will I wake up with ambulance people staring at me?” “Will the kids at school make fun of my son for having the dad that blacked out and had 911 called on him?” “It’s only been 13 minutes?!” “You don’t need to explain the times table to me, dude. I got it. Let’s move on!” “Oh cool! My wife is paying attention.” “Fuck, this chair is hurting my hip. Why are we sitting in the kid’s chairs?” “Is he staring at me?” “Just nod and smile.” “Not that big.” “Don’t say anything. It’ll come out weird and way off-topic.” “Getting dizzy. Here it comes. Deep breath. Don’t panic.” “Wow. That was close!” “It’s been 18 minutes? Is this a fucking joke?!?”
Things are okay enough that posts will start coming in semi-regularly. Just need to get past the hips, shoulders, neck, right foot, knees, elbows, wrists, fingers, and back pain, then we’ll be golden. Some sleep and headache relief would be nice too.