Lupus and Fatigue

“For some, tired is not just a destination at the end of a hard day or an irritating pit stop between activities, it’s a perpetual state of being.”

The above quote was written in The Insatiable Tiredness I Feel by Kristiana Page. (Read her article here: https://lupusnewstoday.com/2017/08/23/lupus-fatigue-is-insatiable-tiredness-i-cant-shake/ )

I recently had a friend ask me what the “tired” part of my lupus is like. I had to think about it and fumble for awhile. For something that is such a constant in my disease, I would think it would be easier to describe. Maybe it’s so hard to describe because it’s something I always feel.  I even have my own classifications for my levels of tired. But even trying to describe THOSE could get quite tricky. So let me try to start with a broader grasp of the fatigue involved with SLE.

I’ve done a ton of research for this post. One of the questions I set out asking has how many “Lupies” (that’s one of my favorite terms for us lupus warriors) suffer from fatigue. The answers have covered a pretty wide range. The most common answers have basically been 50-90%. I knew it was one of the most common symptoms, but I was still surprised. Stunned. Gobsmacked. Think about it. A MINIMUM of HALF...up to ALMOST ALL Lupus warriors suffer from fatigue as part of their disease activity. And as I sit here staring at a blinking cursor, I realize I still have no idea what to say to that. A fantastic quality in a “blogger”.... I think I’ll move on and try to suffice it to say I am not alone in feeling so exhausted all the time.

A “normal” tired is like what a person experiences when they get home from work, take off their shoes, and they can’t wait to get through the night so they can go to bed. And part of the anticipation in going to bed is knowing that you’ll wake up and be rested. Sleeping can fix this level of tired. Get a decent night’s sleep and PRESTO! You’re ready to take on the world!

Fatigue is more like this: You come home from a long, tedious, exhausting day at work. You take your shoes off and you can almost FEEL your feet swelling with their new freedom. You’re so tired from your day, you have to rest on the couch before you can even start dinner. You make it through mechanically shoveling food into your mouth because you know you need the nutrition. Dinner's over. Your shoes are off. You sit on the couch, put your feet on the coffee table, turn on the tv. And wake up in the middle of the night, hours later. You make your way to your bed. You wake up (5, 10, or 20 alarms later)  the next morning (or afternoon) and you're still a little....foggy. But you're awake.

And in Lupus Warriors, we can feel that level of fatigue at any point. It may jump up and surprise us at noon. It may be there all day. It may be go on for days or weeks. There is no level of sleep that will make that feeling go away. We can rest. We can sleep. We can exercise when possible. But if we’re at a “fatigue” point in our illness, there’s very little we can do to fix it completely.

I’ve tried for many years to explain my levels of tired. I think I’ve finally narrowed it down to four types of my fatigue. I’m going to try to characterize them the best I can. Please keep in mind, they’re different for everybody and it’s not an all-encompassing summary.

“Tired”

1. Wake up rested
2. Muscles start to get sore after a few hours

“Exhausted”

1. Dry eyes
2. Hard to wake up
3. Muscles sore/achy all day
4. My “key” joints achy and/or swollen
5. Slightly decreased motor skills

“Fatigue”

1. Limbs feel heavy
2. Sleep through alarms
3. Eyelids hurt
4. Skin hurts. (it almost feels like a sunburn facing inward with goosebumps on the outside)
5. The rings on my fingers are too heavy for my hands and I have to take them off.
6. Can’t concentrate or remember anything.

“Lupus Tired”

1. Eyelids too heavy to open
2. Extreme brain fog
3. Remote, cell phone, etc are too heavy to lift without concentration.

There are so many theories out there about what may actually be causing the fatigue. I probably ended up with more questions than I did answers. I have one question that pretty much bangs around my head all day, “Is fatigue caused by Lupus or is fatigue caused by the diseases so often present with Lupus?” The answer: Yes. It seems to me that with all of the different diseases us Lupus warriors  deal with, less of us would have fatigue if it was caused by “comorbidities” (The simultaneous presence of two chronic diseases or conditions in a patient) because we don’t all share the same “other” conditions.  And those other conditions fill a list so long, it’s no wonder some of them might make us tired.  I was talking to a fellow warrior today about this post. We batted around the idea of listing common comorbidities for Lupus sufferers. I was overwhelmed just thinking about it. That list could go on for days and days. Maybe it will have to be its own post...

In talking to that same Lupie today, she mentioned something so casually that I almost didn’t catch it. She told me her fatigue has been so strong, so overwhelming, that she’s fallen asleep at the wheel and nearly crashed her car twice. It wasn’t until later that she found out Lupus had decided her thyroid was the enemy of the era, causing her to experience an even higher level of fatigue than she normally did.

I set out to write this believing that I would learn so much from my research, that I’d be able to offer some glimmer of insight to someone else wondering the same things. I did learn some stuff, but I didn’t have any great epiphany. I learned a few pieces of trivia. Here’s one: Did YOU know that many lupus sufferers show a decreased production of melatonin? I did not. But more than anything, I got to feel like I’m not alone. And a lot of times, that’s one of the things I need the most.

  I.  Am. Not. Alone…. YOU. ARE. NOT. ALONE….

                   And as always, #Iamnotmylupus 💜