The Axial Spondyloarthritis Podcast
Health & Fitness
Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. How is everybody doing? This week's topic, as you saw from the title is about sleep, and some tips to help hopefully get a better night's sleep. But before that, let's take care of a couple of housekeeping things. Head over to the show's Instagram page at instagram.com/as_podcast. Just remember @as_podcast, head over there, like the page, send me a message that you're on there, comment on some of the posts, and watch, I'm gonna have some new pictures coming up of my service dog in training Bandit. He's growing; he's just turned 10 months old. He's really making vast strides in the training that we're doing. So it's really great. Sometimes I think he's training me sometimes I think I'm training him. Either way, it's been a fantastic journey that the two of us have embarked upon. Also go to the website spondypodcast.com and sign up for the newsletter. It's been amazing. I've seen just a huge huge increase in sign-ups in the last three, four weeks and it's really cool to see all those notifications coming across. So go to spondypodcast.com and sign up for the newsletter, you'll get a prompt when you go on to the website. And lastly, the big news is a download came in for the show from the 101st country that the show has been listened in and that was Madagascar. So there's like 195 countries or so in the world and this show has been accessed in like 101 of them. To me that's amazing. Over 50% of the countries available somebody has access to the show just mind blowing. When I sat down and first recorded this and thought nobody's really going to listen, you know, why would anybody who I didn't even really know, anybody with Ankylosing Spondylitis to listen. So I can't thank all of you, the listeners, enough, the support, the messages, the encouragement that I get on a weekly basis is just fantastic. Feel free to drop me an email at any time. You can reach me at Jayson@spondypodcast.com, love getting them I'll respond to you as quickly as I can.
So with that, let's get into today's episode. The topic I want to talk about is sleep. For many of you I see it a come across all the different Facebook forum groups. What's the best mattress, what pillows should I be using; I would kill to have some sleep even just an hour. Sleep is an amazingly challenging thing to try to get on a normal schedule when you have Ankylosing Spondylitis. I'm living proof of that. The daily fatigue that I deal with is amazing. I tell everybody that I can sit down in my office chair and be asleep and a few minutes I can put on something that I'm trying to read or study up on and I'll just fall asleep because I don't generally get a solid night's sleep like many of you. So part of my issue is sleep apnea, I have a really bad and I don't always wear my mask or if I get up from my bed and go out and sleep in the recliner. There's no cpap machine out there. I'm fixing that; I have a person that is getting a new cpap machine. So they're giving me their older one, I’m going to adjust it up so that I'll have a cpap machine in the bedroom and a cpap machine in the living room. Hopefully that'll really help out and make a difference in the sleep. So in this week's episode, I found an article in healthline.com. I'll have a link to it in the show notes. It says eight tips for a better night's sleep when you have Ankylosing Spondylitis. And again, I use the term Ankylosing Spondylitis and I should really be using Axial Spondyloarthritis because these tips are whether you have non-radiographic or Ankylosing Spondylitis, they're applicable across the board. So I should get better in my own mind of using the term axial spondyloarthritis. But again, with that said, let's look at these eight tips that they talk about. Now the author she starts off by saying “you need sleep to rejuvenate your body and feel energized”, which anybody with ankylosing spondylitis can say, of course, you know that fatigue is the worst part between 35 and 90% of people. That's a huge basis. There's a link to the study in the article, people with AS complain of poor sleep, it's tough to stay asleep at night when your body hurts, which is so true. My hips, my back, my neck, my shoulders, you all understand that completely. We all have that spot or spots that just can get so sore when you're sleeping. The more severe your diseases, the less likely you are to get the rest you need and the less you sleep, the worse your pain and stiffness could become. So don't settle for disrupted sleep. The author says, see your rheumatologist and primary care doctor for advice on how to manage sleep issues. That's so true. Your doctor may in many cases, at least in the States; I don't know how it is in other countries. It may be similar but if you're having a lot of issues sleeping and you have Ankylosing Spondylitis, your doctor may send you for a sleep study. If they do, don't put it off. Go do it. One night we asleep in the hospital, it's not really a big deal. It's more of a, it's a hassle, but it's not a big deal. There's no pain involved, there's no anything, they just put all those electrodes all over you to monitor your sleep. The last time I had one done, they said, we want to let you sleep, you know, a couple hours monitor it. And then we'll put a mask on to get a couple hours of monitoring with a mask. So I had fallen asleep. And it wasn't more than they were waking me up and I said, has it been to three hours already? And they're like, no, it's been like 15 minutes your apnea is so bad, we just want to put the mask right on you and so that's how bad mine was. And part of it's because I'm so overweight, I need to lose 35-40 pounds. And I think that would help a lot with the apnea.
Number One, control your pain with effective treatments. Well, yeah, that makes sense. The less pain you're in, the easier it will be for you to sleep, make sure the best treatment to slow your disease and manage your progression. With that said, as the author states, a lot of people will try to treat it with NSAIDs. You know, there's a lot of people that are fighting the biologic, they don't want to take it they're afraid. There's a lot of misinformation on the biologic, older information or they read information applicable to rheumatoid arthritis and just automatically apply that to Ankylosing Spondylitis and that's not really always the case. There are some issues that biologics can cause in rheumatoid arthritis. That as far as the study showed don't carry over to Ankylosing Spondylitis. So just be aware that the more you can control the inflammation, whether it be a combination of biologics diet, exercise, all those controls can help you then get a better night's sleep and like all things, if the drug you've been taking isn't controlling your pain, see the rheumatologist see your primary care physician and see what they can do to help you get the more effective sleep that you need.
Number Two, sleep on a firm mattress. I almost hated to say that because that's gonna cause like a firestorm of I don't want a firm mattress I use this I use that all of that scrape if you found the mattress that you get the best night's sleep on use it I happen to use a somewhat firmer mattress that works best for me. I know some people like the foamy ones, some people like to sleep number ones, whatever works best for you use that if it's allowing you to get a better night's sleep use it if you have a mattress that is not working for you. Mattresses are funny you find a store that will let you try one for 30 days, 45 days and you can exchange it for something different. But just make sure that in that process, they have a number of different mattresses to choose from. If they only carry one type of mattress and you commit to using it for 30 - 45 days you don't like it, they don't take it back then you're kind of stuck and mattresses aren't cheap.
Number Three, exercise if you can before bed, maybe you take a brisk walk you know get your muscles and joints moving and get the blood flowing and that can help to put you in a more restful state when you go to sleep. It is you know getting everything working and you're not just going in from some sedated state watching TV to lay down where your body is already starting to shut down. It's going to shut down in a few hours and wake you up with a bunch of pain. The author states exercise improves the quality and quantity of your sleep it will help you get more of the deep and restorative slumber your body needs to heal. You'll also fall asleep faster if you get in a good workout that day. So it doesn't have to necessarily be right before you go to sleep. It could be something earlier in the day that gets you know it gets the blood pumping and get you work and get you active. I've got to try and get better at that I walk the dog so that is some exercise that I really don't count in any given day. But I've gone to I got a Fitbit and that I'll have a link to the one I got in the show notes that I think it's the Fitbit HR and it tracks my steps, my heart rate everything like that. If you have an Apple Watch, I think you can do the same thing. Something that will track what you're doing set a goal I set 3000 steps a day is my goal and that to me if I needed 3000 or more, that's exercise to get me up and moving.
Number Four, take a warm bath warm water is soothing to sore joints as we all know so hot shower a warm bath a 20 minute bath before bed will loosen up your joints and relieve pain so you can sleep more soundly I don't like baths I don't take them but I will take a hot shower if I'm real sore if the weather like there's a storm front coming through for I go to bed I might just jump in the shower for 15-20 minutes some hot water to kind of just loosen everything up.
Number Five, use a thin pillow you know this is another one that everybody's going to kind of have their own ideas. I don't use a thin pillow I use a medium sized pillow that helps me because I've got a lot of neck fusing going on. So a thin pillow would mean my neck would be in an angle that I don't like and I also don't use a really thick pillow because then my neck would angle up the other way. So it's taken some time but I found these medium pillows at of all places Walmart i think is where I pick it up. I've got the identification stuff downstairs but I think it's Walmart and if you have a local store like that look for they usually have some really thick pillows and really thin pillows for that medium one that might work better, for you as well. And also, the one thing I do is I replace my pillows quite often I get maybe you better if you buy a more expensive pillow and you don't have to replace as often, I don't know, I went with the cheaper ones, I replaced my pillow probably every six months, every eight months, somewhere right in there.
Number Six, straighten up. Well, this is a lot like when you're standing or sitting, try not to slouch, when you sleep, try to straighten up, as the author says, try to sleep with your spine straight, you can lie flat on your back or on your stomach. Now, I can't lie in either one of those positions because I have some damage to a hip. And it doesn't allow that hip to straighten up. So there's no lying on my back or lying on my stomach. But I have found that I can lay on my side, either my right or left side, I'm good to go. Some people you sleep on your back your stomach, that's great. Again, it's personal opinion, do what's best for you.
Number Seven, set up your bedroom for sleep. This can be done by, as the author says “create an optimal sleeping conditions before you slide under the sheets”. Maybe it's setting the thermostat at 68 degrees because you like a cooler or 72 or 74. Because you like it warmer, maybe it's putting a fan on blows wind on you, could be a type of sheet that you use that you find real comfortable all of that plays into whatever makes the bedroom most comfortable for us. I had one listener, tell me how they got one of those big body pillows and they will use that to prop either their right or left leg up at any given time during the night so that they're kind of stretching their hip and it helps them do maintain more of a straight posture when they're sleeping. So there are all sorts of ideas, options and things that you can use to set your bedroom up, pull the shades down, if you have them that way the sun won't come in and wake you up. If you are like to sleep late, you know. And the big thing is keep the cell phones, keep a TV keep all that out of the bedroom, if you're a light sleeper. If I get into a deep sleep, I sleep and there's nothing that'll wake me up until I'm ready to wake up. So if I have the phone next to me, or the TV, I even turned the TV on and fell asleep and not even realized I left it on all night. So again, everybody's different. But if you have a distraction, get it out of the room, anything that distracts you get it gone. If you need to go to one of the stores, or Amazon or wherever and buy those shades that blackout your window so that you don't have any sun coming in great. Whatever helps you create that room where you know that when you go to sleep, you're just going to sleep. I think that's great.
Finally, Number Eight, get snoring checked out what we talked about earlier, if you're snoring, if you have a partner, and they're telling you that you are snoring, it's driving them nuts, they're waking you up, go ahead and get a sleep study done, your primary care doctor will order up the requirements. Again, I apologize that I don't know how this works in other countries. So when I reference how it works, I'm usually referencing just the United States. So again, I apologize to my foreign listeners, contact whoever is your primary care doctor, talk with them about getting a sleep study done. Storing is a sign of obstructive sleep apnea. That's a condition as the author states that can cause you to stop breathing for brief periods during the night, people with AS are more likely to have sleep apnea. And those with sleep apnea tend to have more damage to their spine. Well, that makes sense. I got fused spine, you know, I've had hips replaced as is fairly bad in that lower spine that is fused. So I'm overweight. And it all adds up to sleep apnea, which in real severe cases can kill you. So each time you stop breathing, your brain wakes you up to get you to start breathing again. As a result, you never feel like you're fully rested during the day. That's where that fatigue comes in to talk about. So again, if your partner or loved ones as you snore, and you've woken yourself up mid stores, see your doctor for an evaluation, the doctors have a lot of way to treat the apnea. And one of them is called like I said earlier, a cpap machine that's a fantastic machine, I put that little there's variety of masks, I have one that just goes over my nose and it pushes air into my lungs all night long so that I keep a standard straight breathing period. It's amazing when I wear it and then I go look at my Fitbit, you know information for sleep for that night. It's such a much much smoother sleep cycle that I go through. So basically the takeaway for this is that if you're living with AS and experiencing poor sleep, talk to your doctor, there might be some symptoms that you have that lead the doctor to say you have a new medications needed a medications needed or some type of issue like a cpap machine, so you get a better night's sleep, that sleep will let you be more rested will let your body be more healthy because it can try to work and heal itself and you know, just it can rest the parts of your body that are constantly under stress all day long from the AS and just life in general.
So, you know, I know this is really a short episode. I hope you get some good takeaways. I hope some of them can help you even if one helps you to get a better night's sleep. That's fantastic. I really appreciate everybody. You're the best listeners that I have. It's absolutely amazing everything you do and if you'd like to support the show, go down to the show notes. Go to buy me a coffee.com slash as podcast and you can support the show by making a single donation, making a long-term donation. It's entirely up to you, but all of it is so appreciated. Thank you and everybody have a wonderful week.
Healthline Article – 8 Tips for Better Sleep With Ankylosing Spondylitis - https://www.healthline.com/health/ankylosing-spondylitis/better-night-sleep
Support the show at Buy Me A Coffee - https://www.buymeacoffee.com/aspodcast
Fit Bit HR - https://amzn.to/3d7oJxL
Body Pillow - https://amzn.to/2Slfal0
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