Friday, May 1, 2015

Dealing with Lupus Fatigue

Ok, so this is not going to be a touchie-feelie, "find your inner peace" type of article. Not my style. I don't buy into the whole idea that some internal sense of peace, balance, chakra alignment, etc. will offset the symptoms of my batshit crazy immune system trying to kill me. Sorry. I just don't.

The fact is, while the touchie-feelie stuff can be great and have its place in helping us cope with our illness, it doesn't make the symptoms go away. The pain still hurts, the blood counts still swoop like kamikaze bats, and we still have the energy level of stoned sloths. That's the reality we face. So what is the best way to handle fatigue without landing face-down on our keyboards at work? (For those of us fortunate enough to still be able to work, that is).

 I don't know.

Class dismissed. Well, not really. The fact is, I don't know a good answer, but I have come up with some less than ideal ones:

1. Caffeine, for example. Not a great solution. It's addictive, for one thing, and it can make some lupus/fibro symptoms worse. But it does keep me from nodding off in the all-staff meeting. Best source of caffeine ever? Chocolate covered espresso beans. You can get them at Trader Joes unless you live in Alaska like me, where there are no Trader Joes. (Great face of sadness!)

2. Prescription Stimulants. (Important note: only use these as prescribed and when prescribed by a licensed physician!!) Sometimes these can really help bring me out of the depths of fatigue and brain fog. Important caveats: they're addictive and insurance companies won't cover them if you're over 17 years old because insurance companies are run by tight-fisted bastards.

3. Naps/breaks. I work for the State of Alaska, and as such I'm a unionized employee. This means my employer is required to give me two breaks and one lunch break a day. I have been known to shut my door, curl up under my desk and take a nap during my "lunch" break. Important: set an alarm on your cellphone or you will sleep through every afternoon meeting you have. Also, it's not a bad idea to keep a pillow under your desk. I do. I realize this doesn't work if you don't have your own cubicle or office and mandated breaks, but if you do, have at it.

4. Get enough sleep at night. Ok, so I made a funny. We all know that's not possible. But at least try.

5. A little exercise. Bear with me here...I know, believe me, that when you can barely lift your head exercise is the last thing you want to do. But if you find that, despite the fatigue, you have trouble sleeping at night (not uncommon), exercising as you are able can help.

Ok, that's all I got. It's not much, but those are the tricks I've found thus far. I'd love to hear if anyone has other suggestions; please leave any feedback in the comments!


  1. Why would anyone under 17 need prescription stimulants? They can drain energy directly from surrounding adults. This policy makes not sense.

  2. This comment has been removed by the author.

    1. I have tried to get my rheumatologist to prescribe stimulants for fatigue and brain fog, that seems to kick in as I'm testing, (I'm a nursing student) however, she states there's no evidence that proves this works for lupus patients. Do you know of any evidence based articles or studies I could provide to her?