Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. My name is Jayson Sacco and I want to welcome you to another episode where we're going to talk about something that affects all of us to various degrees, fatigue.
What is fatigue and how to potentially fight it? So how do you know if you're dealing with fatigue or if you just plain tired? Well, as I was searching around, I saw this great article from a website called creakyjoints.com and as I read through it, it made me think of some things that I've seen posted on the various Facebook forums. Everybody talked about this fatigue kind of had to stop and think was that person maybe tired or is it fatigue? What brings about fatigue? And one person even said, you know, “Fatigue is just like it's taking all of my energy” and so I thought that was kind of interesting.
In reading this article, it talked about what is fatigue versus being tired. Fatigue is a symptom you need to pay attention to because there's a red flag for so many underlying diseases. It's often the driving symptom that leads patients to come in and eventually get diagnosed, says Ellie Cohen rheumatologist in New Jersey. Medically speaking. You know, fatigue is characterized by feeling of weakness and chronic lack of energy. I can certainly relate to this. A number of years ago, I had moved and I had boxes to unpack in my new home and just the thought of, you know, when I got home from work, sit on the couch for a minute to collect my thoughts and just the thought of trying to unpack a box, exhausted me before I even lifted a hand to do anything. I'd fall asleep right there sitting on the couch. Yeah, I had worked eight, nine hours that day. But my job wasn't that taxing. So I was a little concerned. I couldn't figure it out. Talked to my doctor. For me. It became an issue with testosterone. Mine was extremely low. And when you top that low testosterone off with taking about 3600 milligrams of gabapentin a day. I just couldn't function properly. So we adjusted and I went on an injectable testosterone, I switched up some of my medications and how I took them and that helped immensely. But for all of us it's going to be different is either going to be medication, disease, or some combination of the two. So there's really like five questions you can think about when you're looking at is it tiredness or fatigue and those are :
1. Do you wake up tired even after a full night's sleep?
2. Do you find it difficult to muster energy for activities you enjoy or you know are normally excited about?
3. Do you skip important daily activities? You know, like showering or do you take a day off work because you're just too exhausted to even think about them
4. Do you sleep, you know more than seven, eight hours at a night and still wake up tired.
5. has the exhausted lasted you more than a week.
If those are how your feeling and any given day, you know what you really want to talk to your doctor about that because it's probably fatigue and not just simply, you know, you need a couple extra hours of sleep, because even extra sleep isn't going to help you pull out of that fatigue. So, when we look at this, we say, well, what can cause fatigue and chronic illness?
Number one is pain. You know, if I'm in pain, and my body has to continuously process how to deal with that pain, then there really isn't a lot of energy for other things. So having to then take energy off to think about cooking or communicating with other people or any of that just is something that can't even mentally comprehend, or even want to deal with and what can cause the pain is inflammation. If you're having a lot of inflammation, even a flare that can really, like I said, jumpstart the pain, which can then jumpstart the fatigue. So if you're dealing with chronic inflammation from AS, it's not under control, you're probably going to experience more pain and hence more fatigue. So again, they kind of build off of each other. And if you can get that inflammation under control, you may lessen that pain and thereby have less fatigue to deal with. You may have multiple health problems on top of as you could have fibro, or any other number of different conditions, autoimmune diseases that could, you know, one you layer those on top of each other, it's just going to be too much for the body and want to put the body into kind of a shutdown mode deal with the fatigue, the pain, the inflammation.
So, again, these items are all items that you're going to want to really talk to your doctor about. And then lastly, we all know medication side effects can lead to potentially increased fatigue. You know, biologics can cause fatigue. One of the main things that we used to treat as being biologics and can turn around and cause more fatigue, which we thought we were getting rid of by taking the biologics to reduce the inflammation to reduce the pain to fix the fatigue, so it can be a vicious circle. Again, I'm not a doctor, this is not medical advice. I'm not telling you not to take your biologic or to look for a different one. But these are all things that you want to be able to comfortably talk to your doctor about.
So how do we really cope with this fatigue that we all experience? Well, I'm going to go through these next 20 items, and they're kind of broken down into sections based upon each particular topic.
So change your medication regime:
Number One, consider injections instead of pills. You know, the same drug, doctor may tell you that if you take it in a pill form versus an injection form, it may cause extra fatigue or additional fatigue that you wouldn't experience with an injection medication. It might not be available as injection like Gabapentin wasn't, but there are some that there may be that option for you. In this article, Dr. Cohen mentions Methotrexate; she says that with the pills, you may have to take more of the medication to get a therapeutic dose, because it has to pass through your gastrointestinal tract. Whereas if you take an inner muscular injection, you can also use less medication as it goes directly to your bloodstream. I'll have a link to those common questions about methotrexate in the show notes. And you can look that up and talk to your doctor about any medications you're taking if injections are an option.
Number Two, schedule injections for weekends. If you have biologic that you take that you experience fatigue from it, if you can schedule it for a Friday or a Saturday, that gives you two to three days to try and recuperate from it. So that's certainly something that you want to talk to your doctor About see if they can set you up for a Friday or even Saturday dosage of your medication.
Number Three, split up doses. You know, another potential way to handle the medication related fatigue is to actually split your doses and takes them at different times in the day. I do that with my Gabapentin. Now, instead of taking just a big dose all at once the beginning of the day, I take some in the morning and some of the evening and I experienced less of the brain fog and issues with that.
Number Four; ask about timing medication around morning versus evening. In some cases, your medication if it's known to cause any type of fatigue or tiredness, talk to your doctor about whether you could take that medication in the evening right before you go to bed. If you're having trouble sleeping that might help with some of that and you get the benefit of it. So, again, talk to your doctor about that. Your pharmacist can tell you which medications cause any type of fatigue or tiredness and then you can write that down and take that and discuss it with your doctor.
Next, under protect your mental health:
Number Five, you know, see a psychologist or therapist, you know if you're feeling that the fatigue is causing additional issues in your life, whether it be depression or anything where you think talking to a third party might help, go for it! With a psychiatrist, you may be prescribed additional medication, while with a therapist, probably not, unless they lead you back to talk to something to your doctor about. But either one of those there's no shame in going out and talking to somebody about dealing with your mental health issues if they're present.
Number Six, use the Spoon Theory when talking to loved ones. Now I have to admit that this was new to me and you know, so I started looking at basic premises that you have a spoonful of energy available for each task need to get done each day. Every time you do something you move a spoon. People with chronic illness start each day with fewer smaller spoons than healthy people and everyday tasks require more spoons when you have a chronic illness than when you don't. So you can run out of spoons much faster than a healthy person, i.e., your energy much more quickly than those around you. So if you have a spouse, family member, whoever that is more of a visual thinker, that Spoon Theory might help.
Number Seven, don't overdo it on the good days. This is one that gets me a lot. On the days when our illnesses are bad we all know to kind of take it easy and gentle and hope for the next good day down the road. But on those days when we feel good, those days when we feel quote unquote healthy. Those are the days when we go at it as hard as anybody with a chronic illness can we try to power through everything we do things like we remember it before AS. Push, push, push, push, push, and what happens? We go to bed and that next morning, we wake up and feel like we've been run over by a tank. And that can last 1,2,3,5 days, however many it is, but it's overdoing it on those good days, that really gets me. I know I've read from some of the other ones that other folks that get you as well.
Number Eight, know your limits and be firm with others about what your limits are. That can come down to if your family members asked you to help with moving something, you might not be able to do that anymore. So if you have lupus or AS or any type of chronic illness and folks are asked you to come out after work, come out on the weekends, go go go. You might be able to do one of those items and not be in so much pain the next few days that it makes sense, but you have to know what that limit is and you have to stick to it and then once you stick to it, you have to be firm with your friends. If they start to give you, you know, friends or family if they start to give you a hard time about why you're not participating, why you're not coming along whatever it is, if to be very protective of your health.
Number Nine, try CBD. I see a lot of questions on that and we may have to do some whole episodes just on CBD. Some people have great relief from it, some have okay experiences, and some have none. I really think it's a function of the product you're taking and how consistently you're taking it. One particular person said, “Honestly, CBD has made the biggest difference in treating my fibromyalgia, more than any prescription meds I've tried. I'm still tired, but I feel less of that crushing exhaustion.” So that's a great response to CBD. But again, not everybody has that. So make sure to read the labels and try it. See what happens. Take it for a couple weeks, three weeks, four weeks, whatever you want. Try a whole bottle and after that's done, if you don't have any type of really good response to it, you can stop.
Number 10, Take probiotics. This is one that I'm still a little torn on. I know that there's a lot of research that looks at the gut health in relation to how we've all developed AS. If you take probiotics, does that help your gut biome? Possibly? Are you taking the right one? Are you taking one that's got a bunch of sugar and fillers in it that really isn't helping you? I don't know. There's so many of them that you really got to watch what you're taking. And then maybe instead of taking a probiotic pill, you just eat things like yogurt, sauerkraut, Kimchi, or Kiefer. Try any of those that are available many grocery stores and see you might have better results with that than actually taking a probiotic pill.
Number 11. Boost your vitamin D intake. This is something that I've looked at I'm actually having my vitamin D intake increased, and I have had it done for, oh gosh, six, seven years. I'm on 50,000 iu’s once a week. So that is to help get my vitamin D levels up. You want to talk to your doctor, he or she is going to be able to tell you, yeah, vitamin D supplement could be good for you or will do a prescription strength vitamin D to really get you a large dose of it. Again, talk to your doctor, he or she's going to be the one to tell you what's the best avenue for you to approach that.
Number 12. Try Melatonin. Again. Melatonin is a hormone that helps regulate sleep/wake cycles. There's some research that suggests Melatonin supplements can help with insomnia, and other sleep issues. So you can try it. Talk to your doctor about it before you decide to go down that route. Just to make sure it doesn't affect anything of the other medications you might be on. But again, it's available over the counter at both drugstores so you can easily pick up a bottle of Melatonin and try it out after discussion with your doctor.
Live a healthy lifestyle:
Number 13, Exercise every day. This is a hard one, this goes back really to the don't overdo it on the days you feel good. Exercise is really tricky for those of us that have pain and fatigue. I have my days when I want to exercise my days when I don't want to exercise and I know on some of those days when I don't want to exercise. I don't. It could be pain, stiffness, soreness, whatever. But then there's other days when I feel pretty good and I decide to go out and I just have to make sure I don't overdo it at the gym. You want to make sure that you don't overdo it to like create any additional joint pain so that you're not stuck on the couch for a few days like an excess pain, but there is a benefit to exercise for people with as the movement you do helps to keep the mobility in your body and your joints. So I'd encourage you to do as much or as little exercise every day as you can.
Number 14, Practice good sleep hygiene. If you're not sleeping well, it's going to mean you're probably feeling some fatigue. So like all of us with autoimmune or inflammatory diseases have to work even harder to get good rest. So make sure the quality of sleep is a top priority. You know, there are articles and articles and articles written on sleep studies, but some of the things you can do remove the TV from your bedroom, remove your electronics from your bedroom as far as phones, anything that could be buzzing might wake you up. And then if you snore, like I did, get a sleep study done, and you may need a CPAP machine. I know on the nights that I don't wear my CPAP machine or don't wear it long enough. I wake up feeling like I had a terrible night's sleep tossed turned and when I can keep it on for most if not all the night, then I feel really well when I wake up the next morning.
Number 15, Keep a blanket and pillow in your office. Well, I don't work outside the home anymore. I do this podcast now, so I’ve got a pillow and blanket right downstairs on my bed. You, depending on your boss may or may not be able to bring a pillow into work. That's one of those that if you have a very liberal office where you've got just great employee benefit options, you may have areas where you can take a nap. If you don't, you know, you're just going to kind of have to deal with that as you can.
Number 16, ditch the soda. Soda has been the killer for me I am having a virtually impossible time giving it up. I know it's a mind over matter. But my mind sure is not getting over on this matter. And caffeine may pop you up in the short term, but it can contribute to chronic fatigue in the long run. Artificial sweeteners and diet drinks may disrupt the balance of your gut bacteria as well and play a role in fatigue. It's best to stick to filtered water herbal teas and other natural drinks, you know, if you're thirsty, if you need a little sweetness, maybe add a little bit of honey into some water or tea. It's some benefits from eating honey as well. So that's one that I'm just I'm still trying to fight that battle on that.
Number 17, ask about flexible work arrangements. Some jobs, they may allow you to work three, four hours in the morning, three, four hours in the afternoon with a two three hour break in between. That's not really common, but they may be out there. So see if you can come up with any type of flexible work arrangement with your boss, they may or may not be open to it, but it never hurts to ask.
Number 18 eat an anti inflammatory diet. You know, inflammation is the underlying problem of as that is the issue that we deal with is the inflammation the damage that it causes, along with many types of arthritis. You can help to control that inflammation by what you eat. If you can reduce or eliminate processed foods, sugary sweets, salty snacks, fast food, you know all that stuff that tastes good, but it's terrible for you. Eat more fruits, vegetables, beans, clean proteins, read more about the anti inflammatory food nutritionist wants you to eat, they'll be a link in the show notes to that.
Number 19 take advantage of shopping technology. These days there are many things you don't have to leave your house for now. It's going to be dependent upon area. I live in a very small town where the closest real grocery stores 20 miles away, so there is no delivery service. But there is curbside pickup if I don't want to go into the store. Yes, I'm going to pay a fee for that, but I can order my groceries and pick them up at the curbside so that I don't have to go and actually wander through the store. When I lived in San Antonio. It was fantastic because you could actually even have your groceries delivered Buy some of the major chains there. So that really could keep your house bound if you are so inclined. So take advantage of that. Even some local, you know areas where you live, some smaller markets may do delivery if you're in a larger city, and you don't want to shop at some of the larger chain stores, but you'd rather shop local markets, they may have delivery service. And finally,
Number 20, take breaks from your phone. What I mean by that, well, technology can be a catch 22 when it comes to resting. You know if you're watching Netflix or you're playing a game on your phone or surfing the web might feel like a good way to wind down but it's not really rest and depending on what you're looking at, you may get even more anxious. So take a break from your phone, set it down, especially at night when you go to bed. It's been reviewed and research that the blue light emitted from phones, tablets and laptop screens can mess with your sleep, which is why I said to leave a lot of the bedroom. Usually about a Good hour, so half an hour before bed, eliminate that stuff so that your brain can actually start to really settle down.
Overall, those are 20 items that you can look at you some use all of them for helping to cope with fatigue. I hope it works, and I wish you the best in this ongoing fight we all deal with called Ankylosing Spondylitis.