Time for the obligatory first post! I am excited to be starting another blog, even though this will probably end up being the hardest one for me to write. My goal is to post weekly at first and see how that goes from there. For now, let me give you an overview of what is going on in my life so we are all caught up.
Trigger Warning: This post discusses experiences with chronic pain, mental health struggles, and thoughts of self-harm. Please take care while reading and prioritize your well-being. If you need support, consider reaching out to a mental health professional or a trusted person in your life.
Chest Pain
My current health issues all started with something that now doesn’t even feel related. It all started after I had a small cold that didn’t cause me any problems at all (or so I thought). It wasn’t until a week later that I was suddenly rushing to the ER with chest pain. It all felt like a blur as I found myself in a ton of pain, feeling very panicked, and thinking I was having a heart attack. At the time, I didn’t think much of it, but my hands also started feeling hot (more on that later).
If you or someone you know has been to the ER for chest pain, then you probably know what happened next. It was a flurry of blood tests and scans. Luckily for me, they just gave me some new meds to control my blood pressure and cholesterol and sent me on my way. So, that was the good news: no heart attack. The bad news was that I suddenly had other issues going on. I would almost pass out throughout the day as my heart rate would spike and/or drop. I also started getting headaches, extreme fatigue, and generally just feeling off. Eventually, that led to more tests on my heart and a stress test to see how it handled things under load. Every test came back with no results, which was great, but it didn’t help the fact that I was still getting worse.
Burning Pain
I mentioned that at the beginning, my hands were feeling hot. Well, the longer this all went on, the worse the burning got. I was also still having issues with feeling like I could pass out, so that took me to a neurologist to see if they had any ideas about what was going on. By the time I got there, the pain had spread to cover my hands and feet. It had also made its way up my arms and legs, eventually covering about 70% of my body. Things started to get really scary when I also started to lose muscle control. The strange part was that it would come and go. The neurologist ran a bunch of tests and confirmed that something was going on, but I didn’t fit into any diagnosis.
About 6-9 months into it, the pain was getting really intense. I wasn’t sleeping well, I couldn’t do a lot of my normal activities, and the pain never seemed to go away anymore. It was at this point that I went on Gabapentin, which is basically a painkiller specifically for nerve pain. That helped a bit at first, but almost every 2 or 3 weeks, I had to up the dose. This really worried me because I knew that something was wrong and the med was just covering it up. I also knew that there was a max dose that I was rapidly approaching. I tried to stop increasing the dose, but the pain was just too much to handle. Soon, I had to walk with a cane because I couldn’t fully control my movement.
And then things got bad
Up until this point, I was still doing my best to keep up appearances that I was mostly functioning. I was still working a normal schedule, pretending that it was still safe for me to drive, and generally trying to ignore the problem. That all came to an end when, at the beginning of 2024, I suddenly started experiencing strong negative psychological effects. It is hard to know if this was caused by the chronic pain that I was in, the stress of trying to cover up my weakness, or if it was all part of what was happening to me.
This part is hard to type, but I think it is important that I write it out because it is important. One day, when I was sitting on the couch, in so much pain that my vision was blurry, I reached over to the bottle of Gabapentin that I had sitting next to me (I had just sorted my meds that morning and hadn’t put them away yet). In my head, I remember feeling like I had just figured out the solution to a problem, that I knew what would make me all better. It was the strangest thing because it felt more like an instinct than a thought, but it felt like I should take the rest of the bottle. Luckily, I decided that I should let my wife know about the idea and I got up right away and walked to her (still carrying the bottle). Talking to her quickly broke me out of that state, but thinking about it still scares me today. Like, what if I hadn’t thought to tell her? What if she wasn’t home at that exact moment? Since then, I have learned that a lot of suicides are not actually planned out like in the movies. Instead, they are just a sudden decision, and after feeling it firsthand, I really wish we did better as a society at educating everyone about how it really happens.
I think it wasn’t until that day that I had ever thought I would even consider doing something like that. Looking back now, I also think I was hiding a lot of my feelings, even from myself. As I talked with my new support team, they helped me realize just how depressed I was. They also helped me become more aware of the high levels of anxiety that I was having. My system was basically in fight-or-flight mode 24/7 between the constant chronic pain and lack of sleep. Honestly, a lot of that time is a bit of a blur for me. I remember the feeling of endless nights, wishing I could just sleep and actually stay asleep when I did.
It got worse before it got better
Alright, so that brings us up to around March. At that point, I still didn’t have a diagnosis. My heart pain was mostly gone, but the nerve pain was relentless. I had heart palpitations non-stop, my vision was getting pretty bad, and I still wasn’t sleeping much.
Mornings were and still are, especially hard for me because the nerve pain is worse when I am sitting still for a long period of time. I tended to wake up in enough pain that it would cause me to yell out and/or cry as soon as I woke up. One morning, I hit the extreme version of this, and as soon as I woke up, I felt like I couldn’t move. My arms and legs were completely ignoring me. I also wasn’t able to talk (the nerve pain likes to go up my chin and one side of my face). I remember making enough noise to wake my wife, but being unable to lift my arms and legs. Over the next hour, the pain slowly went down and I was able to move again. And me being the idiot that I am, I talked my wife into believing that it was nothing to worry about. I realized the next week that we should have gone to the ER because it fit the characteristics of a stroke.
Once we realized what it might have been, we did talk to the doctors, but I missed the golden window of detection/confirmation. We will probably never know for sure, but at this point (months later), my doctors are pretty sure it was actually an extreme panic attack and not a stroke. At the time, it caused me to worry and stress even more than I already was. The doctors had me do more labs, more scans, more med changes. And yet, still no diagnosis.
Finally some good luck
It was after the possible stroke that I ended up going on short-term disability because my primary care doctor was getting very worried that everything was snowballing. I was also told that if it was a stroke, I was at risk of another one. I needed to find a way to relax because at that point, I was really running on empty. It was also near this time that I started seeing a new psychiatrist and a therapist, which ended up being the turning point.
The big game changer ended up being a new drug/treatment that I had to do twice per week, but it would reset my nerve pain back to 1-2 out of 10, which gave me the ability to work on other lifestyle changes. The miracle drug was Spravato, which I will probably have to talk more about in another post. The biggest thing to call out is that it was because of that drug that I was able to stop taking Gabapentin (going down was hard, but I made it). It also helped me get my depression and anxiety into a state that was easier to deal with.
I think a lot of it came down to getting a good care team, who really cared and took my condition as a challenge. Being able to talk through the issues with someone who understood and cared made it feel more manageable. I honestly can’t thank them enough just for that part, let alone everything else.
Today
Well, look at that! I caught you up to the current day. Thanks for sticking around for the ride. Now that we have that out of the way, I am going to be posting more about things that work and don’t work as we continue treatment and the search for what is wrong. I still don’t have a diagnosis, but that hasn’t stopped me from making a lot of changes to my life for the better. And with the help of my wife and current care team, I know I can beat this thing.