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Person with mouth wide open laying on pillow with swirl coming out of their nose representing a loud snore.

The Sleep Test

As I had written earlier, one of my doctors was worried that I may have sleeping problems. To be honest, over the years a few doctors had mentioned sleep apnea as a concern. When I started seeing a new dentist a year and a half ago, they asked me at my first exam if I had had a sleep test because I have a small mouth, which lends itself to the condition.

Were my sleep problems related to RA?

After procrastinating long enough, I was convinced that I needed to check this issue out. First, there was the history of snoring. But probably the icing on the proverbial cake was my constant feeling of fatigue. It was hard to think my fatigue was anything but severe rheumatoid arthritis. But I had to consider the possibility that bad sleep quality could also be contributing.

My doctor first recommended I sleep a few nights and run an app called “Snore Lab” as a pre-test. The “Epic” level snoring score from the app convinced me that I need to take more measures to get to the bottom of this sleep dilemma.

Setting up the sleep study

I called up a local sleep lab after doing some online research about nearby options. While it is possible to do the testing in the lab onsite, I was happy to have an option where we (actually my husband) picked up some equipment to do the sleep study at home.

Benefits of a home sleep study

The home sleep study was good for me, as I was worried about being comfortable in a strange place and also having the accessibility I require for my physical disabilities (wheelchair). The equipment meant that I could sleep in my own bed, which to me would be more realistic conditions for my nightly rest.

Using the equipment & waiting for the results

The gadgets came with a booklet on how to hook them up. I don’t know if there’s much variety, but mine involved a band that went around my chest and an oxometer on my finger. The equipment would track my oxygen levels and how much I was waking.

The next morning, we turned off the gadgets and dropped it back off at the lab. They would download the data and send a report on the results to my doctor for review and next steps.

Results of the sleep study

Sleep apnea diagnosis

The report on my home sleep test came in quicker than expected, but with clear indications that I have severe obstructive sleep apnea. Basically, I was waking up a lot because my breathing was obstructed and not realizing how much my sleep was being impacted.

For me, I’m guessing the condition is partly genetic (both my parents have been diagnosed) and partly my small mouth and airways, which is also a result of my juvenile RA. Since I also think my small nose passages may be an issue, I’ve also decided to see an ear, nose, and throat (ENT) specialist to see if any treatment for these issues would help.

Treatment for obstructive sleep apnea

The good news about obstructive sleep apnea is that there is treatment. The bad news is that the most acceptable treatment for today means wearing a machine (CPAP) that is trying to help you breathe when you stop. I really didn’t want to have to do this, but I am giving it a try.

Balancing a new diagnosis with lifelong RA

Perhaps it sounds silly, but I have so much already to worry about with lifelong RA. I have lots of medications, therapy, appointments, wheelchairs (and wheelchair maintenance), plus—you know, having a life! I just was resisting so hard the “adding of one more thing.” But I suppose lack of rest and heart damage are things that are bad enough to be concerned.

Trying treatment & other helpful methods

So, I am trying the machine and will shortly see an ENT doctor. I also did some research and read that over time mouth and throat exercises can help with breathing at night, so added this to my daily regime. What the heck, it can’t hurt, right?!

I’m not sure that I’m expecting a lot, but it would sure be nice to feel less tired.

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

  • SFSwami
    4 months ago

    I recently underwent the same sleep study test and received a diagnosis of mild sleep apnea. My pulmonologist (I also have Interstitial Lung Disease, probably linked to my RA and Sjogren’s) offered 3 options to address the apnea: CPAP, dentally designed mouthpiece, or . . . a sock or tennis ball inserted in my pajama top! Yup, you read that correctly. The doctor suggested sewing a pocket onto the back of my pajama top, but I found an easier fix: a snug camisole with a shelf bra, which holds a tennis ball between the shelf liner and the back of the cami. Keeps me on my side, has reduced my apnea and outrageous snoring, and is about as simple as possible. Granted, my apnea is considered a mild case, but this could be a great tool for those considering dental intervention or CPAP. I discovered this technique also worked for me when I simply inserted the ball inside the back of a sweatshirt. It stayed in place fairly well, and helped prevent me from sleeping on my back. Just wanted to share this information with the RA community so more of us can sleep well with minimal intervention or restrictive equipment.

  • Kelly Mack moderator author
    4 months ago

    Hi SFSwami, this is a great tip! I’d seen this suggestion during my online research. Thanks so much for sharing! This idea is really helpful for back sleepers. Since I already sleep on my side, it wouldn’t help me but that’s OK–just glad it helps you! Best, Kelly (RheumatoidArthritis.net Team)

  • susan.nasuti
    5 months ago

    I also have RA (although not as severe as yours) and sleep apnea, as well as insulin-dependent diabetes, restless leg syndrome, and lymphedema, so I know what it is to have so many things to remember that I have to set alarms on my phone to make sure I don’t forget something. My CPAP is just about my best friend. Without it, I don’t sleep. Flat out don’t sleep. If the mask bothers you, ask if you can try nasal pillows. Each kit comes with three sizes of “pillows” I have fairly small nostrils, and the medium works for me, so there is still the small option left for you. If you can get yourself to use it – and this may take several weeks, you won’t believe how different you feel. Good luck!

  • Kelly Mack moderator author
    4 months ago

    Thanks so much for the tips susan.nasuti! I discovered that the pillows were uncomfortable for me, but the mask is working and helping me to sleep better! It’s not the solution I expected but glad that it works! Sorry to hear about your health challenges. I also find that have alarms on my phones helps to manage my various health reminders. Technology can work! Hope you are hanging in there. Best, Kelly (RheumatoidArthritis.net Team)

  • Frazzled
    5 months ago

    Being diagnosed with severe obstructive sleep apnea (my AHI was 54.7 per hour) was one of the fist things I did to see what we could do to resolve my constant fatigue. I use my CPAP every night religiously, even taking it with me whenever I travel, but I do not feel rested or refreshed after a full night’s sleep – even up to 9-10 hours. I have “intractable insomnia”, as my PCP diagnosed many, many years ago, and I am on quite a few meds for getting to and staying asleep. I am also using the nasal pillow, which I find very comfortable, but it doesn’t resolve any of the crushing fatigue I have every day.

    But I have to work, so I struggle through it, and am completely exhausted when I get home after a busy day. I have to limit my after-work activities since I am just so tired. Even taking small rests during the day when I work from home have little impact on feeling rested. RA certainly has something to do with this since a Pulmonologist recently reviewed my CPAP numbers and said everything should be fine.

    I hope you have better results, but my fatigue never got better, but I will continue using my CPAP because I really dislike elbows in my side when I snore.

  • Kelly Mack moderator author
    5 months ago

    Thanks for sharing your experience, Frazzled. This sounds very familiar. I’m so sorry that you also have these deep fatigue struggles. Hang in there. Best, Kelly (RheumatoidArthritis.net Team)

  • Kelly Dabel moderator
    5 months ago

    Thank you for sharing your story and experience. Sorry to hear that your fatigue has continued despite your best efforts. Wishing you some relief ahead. We appreciate you sharing and being part of our community. Best, Kelly, Rheumatoidarthritis.net Team Member

  • Amanda Kohl
    5 months ago

    I’ve had trouble sleeping for a couple years now, probably since my RA has gotten progressively worse. I can go 2-3 nights without falling asleep and when I do manage to go to sleep I wake frequently. I think this adds to the vicious cycle of pain>fatigue>anxiety>insomnia which exacerbated all the co-morbidities that go hand in hand with RA. Uuugghhh!!! So I asked for a sleep study to see if we could try to break the perpetual cycle. When The pulmonologist came in for my consult, after reading my chart and notes from my PCP and Rheumy, he exclaimed that I was certainly “a hot mess” but he liked a challenge! So after a sleep study, unfortunately I had to do it at the lab, I was put on Ambien and started on a C-PAP. My sleep apnea is borderline but I was able to achieve deeper sleep while wearing the machine. Incidentally, their monitors also read the brain waves that process pain during sleep and those numbers were quite out of range (well, duh!!!). So my C-PAP was delivered last week. I chose the nasal pillows which are surprisingly comfortable! I have an app on my phone which runs diagnostics each night so I can see if I have a good seal and how long I wore the mask (I wish it monitored how many how’s of sleep I actually achieved!!). My problem with it all is that after I fall asleep, thanks to Ambien, the comfortable nasal pillows and Autoramp on the machine, the pressure is so high that it actually wakes me from a deep sleep after a 2-3 hours. Then I can’t go back to sleep. Apparently my body thinks a couple hours of good sleep is better than what it was used to! Anyway, I see the pulmonologist for follow up in a few days and hopefully he can make adjustments to the machine so that I can continue to sleep a few more hours! Thanks for another relatable, helpful article!! Mighty-Night, sleep well!

  • Kelly Mack moderator author
    5 months ago

    Glad this article helps Amanda! Hang in there with your own sleep journey. In case it helps, I tried the nasal pillows first and the blowing kept waking me up. I switched to a face mask and find that much better. But I think it’s different for everyone! Hopefully the pulmonologist can help figure out the best solution for you. Best, Kelly (RheumatoidArthritis.net Team)

  • David Advent moderator
    5 months ago

    Hi Amanda, I’m so glad this article resonated with you and your experiences with RA. I’ve also experienced sleep troubles with RA… it’s one of the most troubling aspects of the disease. I’m thankful that you’re on the path to treatment for getting a better night’s sleep. Please know that we are here to support you, and thank you for being a member of this community! -David (RheumatoidArthritis.net Team Member)

  • Lawrence 'rick' Phillips moderator
    5 months ago

    Oh I love my sleep apnea machine. I snored out of my sleep apnea machine, a few years ago and I asked the doctor to fudge the numbers so I could keep it. Falling asleep is so much easier with it. I hope you have the same love affair with your machine. Now, If I can just figure out how to stay asleep.

  • Kelly Mack moderator author
    5 months ago

    🙂 Thanks Rick! Your encouragement helps! -Kelly

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