Is there a connection between narcolepsy and lupus?
I know that fatigue and lupus go hand in hand, but I was telling my primary physician that I am always so tired and that if I sit or lay down for more than thirty minutes or so, I fall asleep, even if only for a couple or a few
minutes, and then I wake up. But it happens over and over until I get up- my doctor referred to it as narcolepsy. That week, I had fallen asleep two different days while eating my dinner and woke up to find my food on the floor (I was eating in front of the TV, not at the dinner table). When I picture narcolepsy, I think of someone falling asleep in the middle of a conversation or while standing up. Is this narcolepsy, or just fatigue? Does anyone else get so tired that you fall asleep without meaning to or even knowing you're doing it? Is there anything that can be done about it? It's very annoying... but I can't help it.
Hi,
!
While I don't know about a link between Lupus and Narcolepsy, I wouldn't be surprised if there is one.
And, as I am sure you know, living with a condition like Lupus can cause some pretty crippling fatigue, so it can be hard to discern what is Lupus and what is Narcolepsy. We do have a sister site dedicated to sleep disorders, including Narcolepsy, which you are welcome to check out -- https://narcolepsy.sleep-disorders.net/. I will say that Narcolepsy kind of defies classification, but it is broadly considered to be in the family of autoimmune conditions. And once a person is diagnosed with one autoimmune condition (like Lupus), they are at an increased risk of developing another autoimmune condition. You can read a bit about that here -- https://narcolepsy.sleep-disorders.net/autoimmune-disease. Again, figuring out if you are experiencing Lupus related fatigue or Narcolepsyy could be a challege.
Best, Erin, Team Member.
I recently have been diagnosed with both! I am trying to find a connection myself. I basically have episodes, my husband can tell they are coming on just by my facial expression. I get so tired that I physically can not stay awake. I can kind of tell when it is going to happen as well. I can be talking and then all of a sudden say things that don't make sense. I have also started to see things as I am dreaming but also awake. There are times when I have fallen asleep standing up or its kind of like sleep walking.
Best of luck to you.Hi
, thanks so much for responding to this forum with your own experience with Lupus and Narcolepsy. While I'm sorry to hear that you understand this frustration, it's always helpful to hear from others who understand. I'm not sure if you saw the link that my coworker, Erin, shared in the above comment, but we do have a sister site dedicated to Narcolepsy, https://lupus.net/living/diet-changes. Have you been able to find anything that helps manage some of the symptoms of Narcolepsy? Wishing you a gentle day! -- Warmly, Christine (Team Member)
