It is almost 3 am and I am wide awake. A constant symptom of Rheumatoid Arthritis is pain. Sometimes, the pain is bad but I take medications to restrict it. I hurt every second of every day but I suffer from a dull ache and not a sharp stab.
I am used to chronic pain and since I am, shouldn’t I be used to any type of it? No, it’s the complete opposite! I am not used to punctuated burst of pains. I feel agony when my tooth/jaw hurts and as a result, I turn grumpy, depressed and restless (hello insomnia!).
I am in a really foul mood. The weather is cloudy and rainy (but warm! — my favorite) so I am decorating for Fall. I love this time of year but I can’t enjoy it! Cue an even worse mood. A simple conversation or thought triggers my depression but this terrible, horrible, no good, very bad day is not brought on by any of the usual culprits. It’s the severe irritation in my gums.
It’s a vicious cycle, isn’t it? My tooth aches, so I can’t sleep since the pressure from my pillow creates an intense surge of discomfort. I don’t rest so I flare up which adds a separate sort of pain into the mix. Pain makes me feel sad and isolated. Sleep deprivation makes me fatigued and stressed so I clench my jaw making that pain worse.
RA is so…strange. And, not for the reasons above. I say ‘strange’ because of all the extra things, the extra occurrences I never considered or prepared for! But how can I prepare for a toothache? If I didn’t have an autoimmune, would it feel more or less painful? Would it matter?
Why is it whenever I think about circles I immediately jump to the 1985 song “You Spin Me Round (Like a Record)”?
Storytime: My first encounter with this song was actually a vacuum commercial that aired during I Love Lucy re-runs!
What has me thinking about circles? This endless loop of fatigue and insomnia. How are those related? If I am so exhausted shouldn’t I sleep more soundly at night? If only life was that easy! I tend to suffer more insomnia the more flared I am.
Whenever I switched medications I suffered from bouts of insomnia. I would flare up during the periods when the old biologic wore off and the new one had yet to kick in. I became less physically active and found it more difficult to fall asleep at night. I eliminated the more physical activities like climbing, or shopping in actual stores. Errand were spread out over days and I spent most of my time laying down and resting. I was just too flared (from pain or fatigue) to keep them in my daily routine.
When I was in a good place with my medications (especially while on the Orencia) I was more active, happier, “healthier” and as a result, slept better. I climbed, I shopped, I lived! As a result, my sleep hygiene was fantastic.
If you read my recent post detailing my “progress” on Actemra, this month, you will remember as the medication wore off, so did my energy levels. I was uncharacteristically tired, run down and list-less (like the I Love Lucy reference?)
All I wanted to do during the day was take naps. I wanted to lay down on my bed and stay there. By the evening, I was so exhausted I wanted to go to bed early and I fell asleep quickly. Until a few minutes later when I was just as awake as though it was morning. Cue the insomnia. If I was so exhausted shouldn’t I sleep better??
I spent a long time thinking about this (as seconds blinked by and minutes turned into hours) and I realized this made perfect sense.
When my medications work I have energy. I work, I climb, I go out with friends, I play with my dog, and I chase my cats. I am happier, healthier, and more active.
Research shows that the less the body “exercises”, both physically and mentally, the less likely it will obtain a good night’s rest. Activity stimulates the body and tires it. When your brain and body feel fatigued, it is easier for them to fall into the natural sleep cycle and stay there.
The lack of response to the new Actemra infusion means I am less physically active. Okay, so, work your brain, Monica! This makes me sound somewhat like a moron, doesn’t it? Don’t get me wrong, I read, I love reading; I do my Sudoku, I secretly love crosswords, I blog, I color, I paint my nails, I craft…but that only takes me so far. These activities do not tire my body.
You know when you’re so physically exhausted you lay down and pass out? You’re asleep the minute your head hits the pillow. Your body slows down the internal processes and you recharge.
I am not getting that. My body is at rest all day. I generally sit or recline while I do all of the above activities. As far as my body knows I am already recharging. When I get to bedtime my body does not think I need anymore rest so I toss and turn most of the night.
What a blasted cycle, huh?
And, because this music video is hilarious…I give you the 80’s hit:
Two weeks ago, I wrote a post on my continued insomnia. This is still a huge problem but some things have changed.
I, still, for the life of me, cannot fall asleep! If I am really desperate I will pop a couple of Benadryls to make me groggy but I really wish to start sleeping on my own. Once asleep, I sleep soundly through the night. I just cannot fall asleep until 3 or 4 in the morning!
There were a few days I could not stay asleep because of the pain I was in. Whichever way I slept, the pressure on my joints kept me awake. I can no longer sleep on my right side because of the massive pain in my hip.
Unfortunately, this is the only side I can fall asleep on. It is painful on my left side and on my stomach, but it more bearable.
I keep records of my medications and what time I take them and noticed I was taking my pain meds early in the evening.
I lowered my dinner dose and added Tramadol before bed. This really helped! Even though it does not help me fall asleep, it ensures I stay asleep.
Now, I just need to shut off my brain a little better so I can drift peacefully off to sleep.
When I stopped the Ambien three weeks ago I took Tylenol PM to ease back into normal sleep.
When I stopped the Tylenol PM I slept on my own. I fell asleep well but I woke up regularly during the night.
Over the last week, the tables turned. I no longer fell asleep quickly but, excluding occasional pet disturbances, I slept well. The hours wasted away and so did my chances at a full night’s slumber.
I tried Lavender Epsom Salt baths, they calmed me down but didn’t lull me to sleep. I tried sleep sprays. I tried chamomile-infused hand creams. Nothing worked.
1:15 AM
I turn off half my lights one hour before I lay down. I lower the brightness and volume on my computer. I brush my teeth and complete my evening skincare routine half an hour before I lay down. I turn off my laptop and I read until I feel drowsy.
Drowsy but awake.
1:20 AM
I carry my stress in my jaw and clench it without realizing. I only notice when it feels sore. Years ago, I ground my teeth and tightened my jaw and neck. After years of practice, I broke the habit.
It is back.
I wake up in the middle of the night sore. I clench my jaw in my sleep? On top of not falling asleep, I am also not getting a good night’s rest.
I did not realize I was “stressed”. If I were to write down everything in my day I do not think I would come up with anything “stressful”. Things are going well right now, mundane, but well. Maybe that’s it? I don’t do mundane. I get bored quickly and look for a change!
Even as I write this post, I clench my jaw. I do not realize I am doing it so I cannot stop it. Even when I am aware and actively relax the muscles they bounce right back. This was a huge problem for me when I was a kid because it resulted in pain and other dental issues but I do not remember how to break this habit.
1:30 AM
I tried deep meditation and yoga before bed but all the bad thoughts I suppress, surface. I’ve tried laying there and hoping sleep comes to me. It turns into me checking the clock every hour and thinking “if I fall asleep now, I have X hours left to sleep…”
1:45 AM
Medications do not work neither do natural remedies like warm milk. I am hesitant to re-start Ambien because I experience weird side-effects with it (next day grogginess is not one, surprisingly!)
2:00 AM
What do you think: Is there something I have not tried that might help? Do you have any good stress-relievers you swear by?
The most annoying part about living with rheumatoid arthritis is dealing with medication side-effects. This is the reason I am writing a post at 2am when I have to be awake for work at 7.
Prednisone is a life-saver. It takes down inflammation in my joints quickly and is the “quick-fix” of all my medications. What I mean by that is I can easily increase the dosage to aid me through a flare.
The problem with that is it has the worst side-effects.
I rarely go over 12mg of prednisone. I get awful insomnia, bad anxiety and sometimes I just want to drive my car into oncoming traffic.
I would rather take more Tramadol than prednisone.
Recently, any change in pred causes insomnia. Whether it is 9mg or 10, whether I increase or decrease, it does not matter. I get insomnia.
For months I had difficulty falling asleep. My mind raced with thoughts about RA, nerves about my future, etc.
I finally overcame that. I channel thoughts away from my body. I meditate and allow my mind to blank. My limbs grow heavy and I roll my spine up and down to release any tension. I then lay flat on my back and count down from five as I breathe in and out. I push stray thoughts out of my mind.
I drift to sleep.
I do not stay asleep.
I used to take sleep aids: Ambien, Benadryl, Remeron…but I had more bad side-effects than the good ones.
Each day is different when it comes to how much prednisone I take. I increase a little when I have work or exercise. I lower on the days I stay in and rest.
My doctor wants me on 8mg but on work days there is no way that is enough.
Before the insomnia whenever I changed prednisone doses I would either shed weight or gain it, and I would always get “moon face” or noticeable puffiness in my face.
