I thought it might be a good idea to write a little bit about what my “flares” are since I tend to mention them a lot. Honestly, I was also putting this off a bit because it’s hard to write about them when I am in the middle of one. Since I am past the last one I just had, I figured now is as good a time as I am going to get to talk about it.

What are flares?

Since I don’t have a diagnosis yet, I have been using “flares” to generally describe when my symptoms get worse for a period of time. For me, most of the flares have similar effects and there are just different levels of severity. The main symptom is that my nerve pain greatly increases and usually also spreads to more places on my body. When I am out of a flare, it usually stays between 1 to 2 out of 10. It also usually hangs out just on my hands and feet. Once a flare starts up, it quickly follows a similar spread pattern that goes up my limbs, across the back of my shoulders, around to my chin, and up the right side of my face to my right eye.

The other thing that happens along with the spread is that the pain level increases significantly. I like to use the Mankoski Pain Scale because it is simple and easy to understand. For reference, the levels are:

  1. Pain Free
  2. Very minor annoyance - occasional minor twinges.
  3. Minor annoyance - occasional strong twinges.
  4. Annoying enough to be distracting.
  5. Can be ignored if you are really involved in your work, but still distracting.
  6. Can’t be ignored for more than 30 minutes.
  7. Can’t be ignored for any length of time, but you can still go to work and participate in social activities.
  8. Makes it difficult to concentrate, interferes with sleep. You can still function with effort.
  9. Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain. Stronger painkillers are minimally effective.
  10. Unable to speak. Crying out or moaning uncontrollably - near delirium.
  11. Unconscious. Pain makes you pass out.

For me, I consider a flare starting when I hit 4 on the scale for more than an hour. I usually don’t have big spikes that come out of nowhere and go away within an hour. If the pain is going up, it usually keeps going after it hits 4. From there, it will continue up to a 7. It can go past a 7, but my current meds and treatment help reset it each night and/or week so it doesn’t keep climbing.

What starts a flare (triggers)

Now that you have a basic idea of what happens, we might as well get into how it happens. This part is complicated because I don’t have a complete handle on this part yet. I have a few that I have figured out, but there are still more that I am only guessing at. One of the issues with figuring out your flare triggers is that you want to avoid flares at all costs. This means that even though I might have a strong idea of what causes one, I am going to avoid it in general to avoid the wrath of another flare. So the best I can do is confirm them based on if I accidentally get one or if the thing is unique enough that I can just assume.

Starting with the ones I am most sure about and working my way down the list from there. The one that I am most certain about is stress. When I am in a stressful situation, I tend to start feeling the pain increase right away. The stress could be physical, like I pushed myself too hard in a workout, or mental, like I am worried too much about something. This is the big trigger that made me have to change a lot about what movies and games I watch. It really sucks to have a jump scare in a movie cause me to go into a flare for a few days. I can tell you that it isn’t worth it at all for me, so I am watching a lot of movies that are more adventures without much emotional drama in them. And for games, I have switched to playing a lot of games in the cozy category. For the few games that I just have to play even though there is a risk, I make sure to limit my playtime, take a break at least once an hour, and I keep the difficulty settings lower than I normally would want.

From stress, we go down to a similar one, which is just exhaustion. I noticed that the more I push myself in general without taking a break, taking a nap, or if I just don’t get enough sleep, then I usually wake up the next day in a flare. This is actually worse than the stress trigger because I won’t really notice that I did it until I wake up the next morning and I am in horrible pain. Waking up with 70% of your body feeling like it is on fire can really mess with your dream too. This trigger is also what can send me straight into a panic attack, first thing when I wake up. I mean, you would probably panic too if you woke up thinking you were on fire, right? It would be great if I had a little gauge that told me how hard I pushed it that day, but there isn’t a perfect one. Eventually, I will write another post about the different monitors I have tried to see if I can predict when a flare will start.

For the first two I talked about, they are pretty obvious and there isn’t much mystery around them, but now we are getting into the harder to predict ones. Gluten is one that falls into this category. At first, I thought it just helped my stomach feel better, but the more I went gluten-free, the more likely it was that gluten could cause a flare. The issue with figuring this one out for sure is that it doesn’t trigger that day or even the next morning. I think it has more to do with adding another layer to the exhaustion one and it has just an overall impact on my body’s recovery each night. From what I can tell, it doesn’t always trigger a flare, but it does line up with them most of the time. And like I mentioned before, I don’t want to be in a flare, so I am trying to just avoid it if at all possible.

The Snowball Effect

I covered the 3 big triggers that I know about so far, but here is where things get interesting (and very crappy). When a flare hits, it sends my body into overdrive. It maxes out my fight or flight response, and I go into a hyper-sensitive mode where I have a strong reaction to smells, lights, textures, sounds, emotions, and lots of things that happen in normal, everyday life. What makes this especially bad is that once I start to snowball, it means that all of these things add to the stress and exhaustion that are already triggering me. The part I don’t know for sure yet is if one causes the other or how they interact. I do know that if I am in a flare, it is really easy for me to get triggered again during the flare.

Theoretical Example

I think an example might help to explain just how serious this is because without a lot of context, it can be hard to understand the significance of these triggers. Let’s say I start out my day in a small flare caused by lack of sleep. That means I start out my day already around a 4 on the scale. From there, I need to get showered and dressed, but the water would feel scalding even at a lukewarm temp. If I forget to keep the temp low enough, it might even make me get close to passing out, so I have an emergency buzzer in the shower just in case. But like I mentioned, avoid, avoid, avoid… On this theoretical day, I would probably just skip the shower.

Next, I would head to work, which luckily for me is just down the hallway because I work from home. I had to switch chairs because the texture could cause the pain to jump up a level or two. Luckily, I found one that doesn’t cause too much of an issue, so I am able to work for 1-2 hours before it really hurts too much to sit. What usually happens next is I join a few meetings and things are going okay. People might notice that I am a little off, but most of the time it isn’t noticeable. The problem that will happen is the longer I try to focus on work or the more stressful a meeting is, the more likely it will be to cause the snowball effect to really kick off. Like say someone says something in a meeting that I strongly disagree with, and instead of just being able to speak my mind and walk through the topic, I might start shaking uncontrollably, have my skin suddenly become so sensitive that I don’t want to touch anything, or at the very worst, I can even start to pass out.

Talk about an overreaction, right? That thought hits me too, and then I start getting embarrassed because I feel like I am not good enough, healthy enough, or focused enough to do my job. And all of that will just feed back into the effect. The best I can do at these points is to try to get up and walk around, but in the moment, it can be really hard to get myself to do that. I tend to be like, “Oh, I just need to finish a few more lines of code,” or “The meeting will only be another 5 minutes.” I tell myself that I can make it until I am curled up on my chair with tears running down my face. I have been getting better at this, but the work ethic ingrained in me from growing up on a farm really makes it hard for me to walk away or to show any kind of weakness.

The Right Now

As I was typing this, I was really thinking I would go into an example of a past time that this happened. The good/bad news is that I have the perfect recent example because just writing this was enough to start causing an increase in pain. Chronic pain can be funny that way, in that the more you think about it, the more you notice it. At one of my old jobs, we had multiple people who got migraines, so we had a “no talking about migraines” rule because it would tend to make everyone think about having one, which might cause one. This is kind of like that for me. Today isn’t too bad, and since this blog is just for fun, it was easy to step away and take multiple breaks while writing it. I guess I will leave a bigger real-world example for another day.

One Tip to Leave You With

One thing that is worth mentioning now is how I have been avoiding causing this kind of trigger as my wife and I both deal with our health issues lately. We started not talking about pain and instead we talk about how many clowns are in our clown car. I read that just using certain words can trigger those pathways in our heads that will make the pain spark. And since we want to avoid that as much as possible, we try to use phrases like:

  • My hands are not as cool as I want them to be.
  • I am not as comfortable as I want to be.
  • I have 5 clowns trying to fit into my clown car today.

I know this doesn’t sound like much and it feels really silly at first, but I think that is part of it. It makes the pain seem less serious and forces me to think about it another way. And honestly, it really does help me to talk about my condition without making the condition worse. Plus, it usually makes everyone smile, which is something we all need more of.

Anyway, that’s all for today, but I promise to write some more posts about actual solutions to some of these problems that I have come up with. In the last year, I sure have tried a lot of them, so I do have some that I want to talk about. In the meantime, don’t forget to take breaks as needed and try to find those reasons to laugh, even when things are rough.