Rheumatoid Arthritis

Addressing Fatigue and RA

“Snap out of it.”

“You just need a good night’s sleep.”

“Maybe if you got out of bed, you’d feel better.”

If you have fatigue, chances are you’ve heard one of these or something similar. And if you suffer from fatigue, you know that they aren’t true at all.

Chronic fatigue is more than just being tired. It’s more than needing a cup of coffee or a quick power nap. Chronic fatigue can be debilitating and if you have Rheumatoid Arthritis, there’s a good chance that you deal with it on a regular basis. If you are fortunate enough to not suffer from chronic fatigue, a good way to understand how it feels is to think of the last time you had the flu or a serious illness. You probably remember resting, trying to watch a tv show or read a book and falling asleep a few minutes in. You awoke later to feel the same, still exhausted. The rest you had didn’t provide you with any energy at all.

Before I was diagnosed with Rheumatoid Arthritis a few years ago, I found myself falling asleep while getting my hair done. Sure, getting your hair done can be a bit boring, but definitely not enough to literally put you to sleep. I remember my initial reaction being one of fear. Not fear as to why I was falling asleep but fear that if I jerked awake while getting my hair cut, I could end up with quite a messy situation!

Fast forward a few years- my disease activity has gone up and down and much like the pain in my joints, my fatigue ebbs and flows as well. The difference is, I can medicate my pain- I can put an ice pack on it, take a pill, throw on a compression brace and I will ultimately (hopefully) get some relief. Fatigue on the other hand, isn’t that simple to overcome but here are some strategies that may help you:

Talk to your doctor.

  • This is important. Your doctor needs to know how much fatigue is impacting your life- just like your joint pain or stiffness.
  • Your doctor may also want to rule out any other medical causes for your fatigue so this should be your first to-do.
  • Be sure to explain how your fatigue is different from your feelings of being tired. When I first brought up my fatigue to my rheumatologist, she asked if I was getting enough sleep, if I possibly needed a sleep study. I had to really think about how to explain the difference I was feeling- it wasn’t something that would go away with a nap or 10 hours of sleep. It was a feeling of exhaustion from simply being awake.
  • Be sure to explain how the fatigue makes you feel. For me, it was scary. The fatigue would hit so strongly that I was afraid to drive at times. Make sure your doctor knows this.

Plan your day.

  • Fatigue is disruptive. It’s important to schedule a time to rest during the day. I know that when my daughter and I run errands on Saturday mornings, as much as I want to go to the gym in the afternoon and clean the house, I must lie down after lunch. I have to. Sometimes just knowing that my nap is coming, gives me that extra boost to get through the long Target line.

Communicate.

  • This is hard one, I know. People tend to understand and empathize with pain. If you’re in too much pain to do something, that’s ok, it’s not questioned. But if you say you’re too tired? That’s not always met with the same understanding.
  • Try your best to explain to your family, friends, and coworkers how your fatigue feels, how it impacts you and even how it impacts them. I had to have conversations with my husband like those I had with my doctor. I had to explain how dangerous the fatigue made me feel and how this wasn’t something I could nap away.
  • These conversations will vary with whom you’re speaking with. My kids see being tired as needing sleep and nothing else. Adults in my family have a bit more perspective since they can see my disease as a whole but they still have told me at times to drink a caffeinated drink or go to bed earlier.
  • It’s hard to concentrate or to be in a good mood if you’re struggling to stay awake. Explain that you are a better wife, son, employee, or friend when you get the rest that your body requires. Sometimes when people hear how something impacts them, they are more likely to address the problem.

Most importantly, try your best not to feel guilty (way easier said than done, right?!) and know that you are not alone. You didn’t choose this disease and I guarantee you would give it up in a heartbeat. There are plenty of other patients, just like you, battling with fatigue each day. Make sure you share your story and what has helped you in managing your fatigue. You can also visit Joint Decisions on Facebook to find more information and resources.

 

This post was sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions, however, all thoughts and opinions presented here are my own. All thoughts and opinions presented here are not the thoughts and opinions of Johnson & Johnson and should NOT be taken as medical advice.

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5 comments

  1. Penny Reed

    I have ankylosing spondylitis and cannot believe how this hits the nail on the head!!!!! Thank you for posting this! I so appreciate everything you said and how important it is to tell your rheumatologist this part! You have put everything in perspective! I will be following these posts now! Thank you for the link!!!

  2. Sarah Pasia

    Thank you for suggesting these strategies! You were on point when you mentioned that, “It was a feeling of exhaustion from simply being awake.” I could sleep for a full eight hours and still wake up with muscle pain and feel exhausted. Thanks for reminding me that it’s okay to take a break within the day before powering through the rest. Stay strong. -bsrealtalk.com

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