Sleep: How to Get It With RA

My sleep has been disrupted lately, mostly due to a new a RA pain I have been having in my left foot. It affects the joints right under my big and pinky toes, but also tends to spread to the middle of my foot as well. What this new RA foot pain feels like The best way I can describe this pain is a combination of a dull, aching throb and stiffness in the joints; there’s not really any burning or tingling (i.e., no nerve pain, which makes it more likely that this is joint-related), just a consistent dull ache. It has gotten to the point that getting up in the middle of the night necessitates shuffling around my apartment (rather than walking “normally”). It continually wakes me up in the middle of the night. A cycle of pain, sleep issues, and fatigue One of the most irritating parts of finding a new RA pain — or even having an RA flare — is that it furthers the cycle between new pain, sleep troubles, and fatigue. Although I’ve talked about this cyclic pattern before in a previous article, I think it’s important to talk about again, particularly as this is now the second time that I’ve experienced the effects of this sleep disruption. Dreading that RA fatigue When I experience a new pain (like in my left foot), I don’t sleep well; when I don’t sleep well, I feel more fatigued; when I feel more fatigued, I try and sleep more, which… you get the picture. Making matters worse is the fact that fatigue is one of the most formidable symptoms of RA! When you are not sleeping well in addition to having RA, you are going to feel more fatigued than normal, which can lead to all sorts of other problems. It is clear then that new pains, sleep, and fatigue are intricately connected in having RA. Finding relief So, what have I been doing to mitigate this new pain? 1. Taking ibuprofen. It is not ideal to consistently take NSAIDs but they have helped me manage this particular pain. 2. Trying not to get frustrated at this pain. While it is annoying, being frustrated and angry just makes me more fatigued than I already am. This necessitates me reframing my thoughts on the pain. Instead of getting mad about how much sleep I am losing, I try to think about: “What can I do right now with this time that I have, now that I’m not sleeping?” If it is just that I need mental clarity, then I do not do anything. If I want to do something with that time, I will read a book or watch a documentary. Shifting the conversation in my head from a tone of frustration with this pain and having RA to one of what I need at this moment to feel comfortable and in control is crucial for mitigating any new pain that I’m feeling. 3. Accepting that this is painful right now. It hurts, and I do not like it. No one would; but, because I am able to recognize and vocalize the pain I am having, I know that I am in touch with my body and what it is feeling. Just another part of RA And I know I am not alone in experiencing new RA pains. As individuals with RA, we are preparing for any new pain or ailment that this illness throws our way. I am wondering: have you been having any new RA-related pains lately? If so, what have your experiences been and how have you managed them? [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"] I still remember the good old days when I could sleep anywhere, any time, and extremely deeply. In a previous article, I shared the story about the time my college roommate found me fast asleep in my under bed storage. In this article, I will share the story about the time I fell asleep in the middle of the floor of my house. My biggest issue now is staying asleep I had just gotten home from school and my dad decided he wanted to eat out for dinner. While I waited for him to change, I played with my dog on the floor. We must have been wrestling or playing tug of war because my dad found us fast asleep in some sort of weird knot. Apparently, I had fallen asleep on to the top of my head and my arm was stuck under Saachi, our Bullmastiff. Thankfully, I can still fall asleep pretty quickly, even if not in the position. The biggest issue for me now is staying asleep. Even with sleeping pills, I wake up multiple times during the night. Embracing my sleepless nights I love sleep. I’ve written multiple articles on my love for sleep, my lack of it, and how much I rely on naps. I like sleeping and I love a full night’s rest. But, as with so many things about my rheumatoid arthritis, I got annoyed that I wasn’t sleeping, I wasn’t sleeping well, and I had to spend precious daylight hours napping. It was not productive and made me feel worse. I had to change so, just like I embraced the nap, I also embraced my sleepless nights. Let me explain. [native] Nighttime exercises I am going to wake up during the night. I am going to wake up multiple times during the night. Instead of fighting it, I might as well use those wakeful moments to my advantage. During the day, I have to stay active and mobile. Otherwise, my joints seize up and I become stiff and painful. The same applies to bedtime. On the VERY rare night, I sleep through, I may feel rested when I wake up but I also feel more painful. Simple stretches while I'm up I need to move at night but I am certainly not setting my alarm every hour to walk around my room. I just use those times I am already waking up to do simple stretches like snow angels with my arms and legs, stretch my neck my bringing my head to my ears, and bring my knees up to my chest. Then, I roll over and go back to bed. Gentle exercises help to loosen joints I am lucky that I can still fall asleep quickly after waking up (except during flares), and my biggest tip for that is just not to get out of bed completely. If I "wake up," I might as well start my day. If I find that I can’t doze back off, I read until my eyes become unfocused and I quickly go with the flow. For me personally, I wake up because I am feeling stiff and painful. Doing a few exercises, like the ones above, loosen my joints and relax my body so I can go back to sleep. My joints are less stiff when I wake up Yes, it’s not good that I am waking up that much, but it’s going to happen so I might as well make that productive time. I now wake up more rested and energetic because I don’t feel like the tin man! [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"] 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. [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"]

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A New RA Foot Pain and Sleep Troubles

Night Exercises

How Are Other People Managing Sleep Problems with RA?

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Sleep, RA, and Acceptance

Embrace the Nap

The Sleep Test

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Pain and Sleep - a Two-Way Street

The Sleep Machine