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figure sitting on far edge of a bed with a bright "hot spot" in between their shoulder blade from a spike that

Sleep, RA, and Acceptance

Out of all the problems I have experienced with RA thus far in my medical journey, this disease’s effects on my sleep are the most potent. From tossing and turning to simply not being able to sleep, I don’t think I’ve had a good night’s rest since being diagnosed with RA. There seems to be this devastating cyclical nature to the connection between RA and fatigue: not only does RA utilize more of your body’s energy (thereby causing you to feel fatigued), but random joint pains and flares prevent you from sleeping which thereby makes you (you guessed it) feel fatigued. Recently, however, I had an experience so bad that it pushed me to call my rheumatologist the next morning and implore him for a prednisone prescription.

How RA pain affects sleep quality

Another new pain?

I rolled over to look at the clock, intrinsically dreading the thought of knowing what time it was. 2:00 AM. Great. I had just gone to bed at midnight and had thought I slept longer than two hours. I was startled awake by this curious and alarming pain growing in my shoulders. Affecting both shoulders, and right in the ball-and-socket joint, an almost burning sensation spread through my shoulders and into my neck.

I was almost immobilized; I couldn’t move my arms above my head, couldn’t put on a T-shirt as I stumbled out of bed, and couldn’t reach up to open the medicine cabinet for my nightly dose of ibuprofen. “What was happening?” I thought to myself. “I’ve never experienced pain in my shoulders before and definitely not as severe as this.” Needless to say, despite my best efforts, I could not fall back asleep. I lay in bed, eyes wide awake, staring through the blackness at the ceiling of my bedroom.

Processing the challenges of life with RA

It’s times like these when my darkest thoughts creep into my brain. As thoughts of “Why has this happened to me?”; “Will I always be in pain like this?”; and “How can I make this form of life sustainable?” enter, almost feeling like they are slowly crawling over my skin, I find myself entering a very negative headspace, a place of hopelessness, of depression, of angst, of just wanting the pain to stop. Throughout life we’re told to always be happy; yet, in times like these, I let myself feel every and all negative thoughts that surface. I let myself feel sad, tired, upset, and frustrated because it helps me re-center, it helps me make sense of what RA is and how it is affecting my body.

Reaching a place of acceptance

Barring any serious self-destructive thoughts, I think it is important for all of us to process how we actually feel and open ourselves up to the realization that there were will be many days (and for those with RA, more so than not) in which we do not feel good, in which we do not feel okay. And that has to be okay. No matter what, I am not only my disease, my disease does not define me: it only shapes my experience of myself and the world around me.

While I might not have the best quality of sleep, experiences like these reify that I have to listen to my body and what it is indicating to me. Through my (lack of) sleep, I’ve come to understand more about this disease and, more importantly, myself and how I perceive the world around me.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • B.Hughes
    5 months ago

    David I can so relate to your story. I have had several times when my shoulders just freeze up and I couldn’t move them at all and the pain was so unbearable I just sat and cried. When I was first diagnosed this was happening weekly and no matter what I did nothing helped. I would go for 2 or 3 days with no sleep and I would just finally pass out from exhaustion. I still now have trouble sleeping. If I’m in pain it’s hard to relax and yes I got to the point I was praying to God to please just end my suffering. I thought how will I ever be able to live like this. I have started on Humira and prednisone and I can’t begin to tell you how much it has helped me. I still have sleep issues but it’s from the prednisone and not from being in pain. I now see hope for being able to function where there was none before. The fatigue and feeling tired also was coming from being anemic . This is now some better since I started on iron pills and B12 shots but I still don’t feel the best yet but I’m taking one day at a time and living the best I can. Thanks for this arrival. Sorry I wrote a book!

  • JsRAJourney
    5 months ago

    My personal new challenge to myself is to practice being grateful for: what sleep that I do get; days when I have a lower level of pain and/or more activity; days & times when I can spend time with my family, friends, & community to the best of my ability; & to enjoy every moment that I will take the focus off of myself, no matter what I’m going through, & focus on really seeing, feeling for, & giving encouragement & service to others & their experiences. The challenge in this final statement for me is to know when to “Accept the things I cannot change, ‘use the’ Courage ‘that I’ have to change the things I can, & ‘use the’ Wisdom ‘that I have & will develop’ to know the difference.”
    Taken from the Serenity Prayer by Reinhold Niebuhr
    In my weakness, I am praying that I will be made strong by God’s Grace, to enjoy my accomplishments in this challenge!

  • suri613
    5 months ago

    I totally empathize with you. Falling asleep is really hard. Everything hurts more when I’m lying down. I take CBD oil which I needed a permit for from the department of health. What also helps me with the quality of sleep once I finally fall asleep is Circadin, a slow release Melatonin. Melatonin is naturally released in the brain and helps sleep. Circadin, unlike the over the counter Melatonin, has the advantage of being slow release to have a longer lasting effect. The CBD oil and Circadin don’t work like magic, but they definitely make a difference. Good luck!

  • tutty
    5 months ago

    Yes David after 35 years of ra and 15 years of hot sweats due to menopause I can totally relate – steroids only cause me more insomnia – it’s a tough road with pain that’s Impossible to describe chin up and soldier on – regards tutty

  • Linjin33
    5 months ago

    I have had issues with sleeping, or not sleeping actually, for years. I’ve started taking a half dose of CBD oil and I am now getting much more sleep.
    I really recommend trying it. There are also ointments you can put on your joints.

  • ann1
    5 months ago

    Great article. So true

  • Diane S
    5 months ago

    “…we do not feel good, in which we do not feel okay. And that has to be okay.”
    I don’t know that I can do this. I’m expected to work – to fulfill my obligation of just having graduated nursing school & find a RN job. I’m immensely terrified. I don’t know that I can do it. I don’t feel good. I never feel good. I’m not okay with it. I need something more that gives me the occasional moment without pain.
    I’m in that “bad headspace” place. I want it all to be over. If it’s over, I won’t have to get a RN job. I’m just too chicken to do anything about it, so I just pray I don’t wake up. Unfortunately, RA only lets me sleep in bursts of minutes. I’m never asleep long enough to die in my sleep! LOL.
    I’m still of the mindset that I don’t feel okay and that’s not okay! It’s bullshit is what it is.

  • pamela.kline
    5 months ago

    Diane (@ib505) – It is very understandable that you are feeling overwhelmed with so much on your plate after your graduation. It is very brave to reach out outline for support. I hope this community can be a place where we help to support each other through the hard days. I also wanted to share the National Suicide Prevention Hotline at 1-800-273-8255 (https://suicidepreventionlifeline.org/) if you need additional support. I am thinking of you! – Pam (RheumatoidArthritis.net Team Member)

  • Jo J
    5 months ago

    Diane, you are not alone! I am so sorry you are feeling so overwhelmed at this time. I’m also an RN and I get the pressures of getting a job, especially as a new grad. I’m concerned for you and hope you can find someone to reach out to in this time of need. Sometimes I have to step back and ask myself, if my patient expressed these concerns, what advice would I give them?

  • mspeg064
    5 months ago

    I feel you on this one David Advent ! I also experience this with RA. This terrible disease. I’m always fatigued.

  • tckrd
    5 months ago

    I have a hard time with that. You are your disease your disease does define who you are what you do and how you do it. It defines your friends and sometimes your spouse’s

  • Diane S
    5 months ago

    Agreed. It defines me enough that it affects my interaction with others. I don’t get asked to do things anymore because my friends know I won’t feel up to it.

  • Pam Norwood
    5 months ago

    Right there with you. Just wish I could feel half as bad as I use to think I felt some days in the past. I refuse to let this disease define who I am.

  • NPEOttawa
    5 months ago

    I hear all that you are saying. Especially about finding out more about myself and how I perceive the world. I have to find a way to be happy again even if I can’t ever get enough sleep and will always now be at the mercy of random pain. Cause it’s my LIFE.! It may be the only one I get. I cannot become my disease.

  • Richard Faust moderator
    5 months ago

    Hi NPEOttawa. Thanks for writing. Finding ways to live the life you want and to be happy can certainly be difficult, but is so important. Thought you might be interested in these couple of articles on happiness with RA: https://rheumatoidarthritis.net/living/happiness-everything/ and https://rheumatoidarthritis.net/living/happy-campers/. Finally, wanted to share this article about research that found that mood can impact perceptions of pain: https://rheumatoidarthritis.net/living/pain-relieving-happiness/. Hoping you continue being you and enjoying life. Best, Richard (RheumatoidArthritis.net Team)

  • Lawrence 'rick' Phillips moderator
    5 months ago

    Oh you are so right. Geese, I wish I could sleep at night. Maybe I will give you a call and we can talk each other down form our sleeplessness.

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