I woke up this morning with a lot of things that needed to be done. By 2 p.m., only one thing had been checked off the list and I was sound asleep. The old me — the one before lupus came into my life — would never have stopped for a nap in the middle of the afternoon. But the new me needs a nap almost every day.
It’s hard to get things done when your energy only lasts a couple of hours. You don’t really understand fatigue until you have to rest after taking a shower and getting dressed. And I always overestimate how much I can get done. My brain still thinks it’s 20 years old and ready to conquer the world.
I mentioned this to my doctor. She said that chronic fatigue syndrome (CFS) often accompanies lupus and fibromyalgia. She didn’t come right out and say that I have it, just that it is common in people with my diseases. I’m not adding it to my growing list of diagnoses until she makes it official.
Symptoms of CFS include:
- Loss of memory or concentration.
- Sore throat.
- Enlarged lymph nodes in your neck or armpits.
- Unexplained muscle or joint pain.
- Unrefreshing sleep.
- Extreme exhaustion lasting more than 24 hours after physical or mental exercise.
I can check off every single one of these, although the sore throat and enlarged lymph nodes threw me for a loop. I have them, but I thought they were because of an infection. And my muscle and joint pain isn’t really unexplained: It comes with lupus and fibromyalgia.
That’s the trouble with having so many different problems. You never know if an issue is a symptom of one of your diseases, or something new that wasn’t on your radar.
The Centers for Disease Control says there is no cure or treatment for CFS. You have to learn to manage the symptoms. That’s hard to do when you can sleep for eight hours and not feel refreshed. I can’t remember the last time I woke up and felt like I’d had a good night’s sleep.
I have written before about my very supportive husband. He is always urging me to rest and not overdo it. He treats me better than I treat myself! I still think I should be able to work all day and cook a big meal every night. When I can’t do it all, I call myself lazy.
I need to work on accepting my limitations. It has been four years since I was diagnosed and I need to be more forgiving of myself. I need to show myself a little grace and compassion. Calling myself names isn’t going to change anything. It will just make me feel more guilty about things I cannot control.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.