In this video I’m sharing my experience of what fatigue feels like and also some of my strategies for coping with it.
What is fatigue?
The type of fatigue I'm talking about today is the fatigue experience as a symptom of autoimmune arthritis and chronic joint pain. When you're in constant pain, it can be really difficult to do things in the normal pace that you would do them, and it can take twice as much energy to do simple things. Now, if your pain is caused by autoimmune arthritis, on top of that, you have the added burden of lots of inflammation going on in your system, which makes sure body feel tired. So, it's a bit more than just feeling a bit worn out for having a busy day or maybe just not getting a good night’s sleep.
The way I like to describe fatigue people is to compare it to going down with the flu.
I've often found that when I'm starting to get symptoms of the flu, before those symptoms really kick in, I will feel all the energy drain out of me. I'll almost just want to go and just lie down somewhere and just not talk to anyone. Well, that is what autoimmune fatigue feels like.
Now, when you are having with flu and you start to feel that kind of fatigue, your body is doing something useful. It's telling you to go and rest so that your body can fight off a virus.
When you're feeling that kind of fatigue with autoimmune arthritis, your body is not doing something that is quite so useful. The immune system’s misfiring and is becoming overactive and rather than attacking a virus, it's attacking the body's joints and tissues. So that feeling of fatigue and needing to rest isn't quite so helpful. In fact, it's something that can lurk around for quite a long time, and it can really impact a lot of areas of your life. It can make it difficult socially, it can make it difficult to work, and it can make it difficult to keep enjoying the things that you enjoy doing.
It's the most challenging symptom for many
So, it's not surprising that when we ask autoimmune arthritis patients, what's their most challenging symptom, they often say fatigue. I regularly ask people in our online community, Women With Rheumatoid Disease, and every time they vote fatigue.
And that's the same for me. Fatigue is my most challenging symptom. That might sound surprising because you might assume that pain is a worse symptom, but fatigue is just harder to deal with because it's more disruptive as it affects everything I do.
So, what can we do about fatigue?
I wish I could tell you there was some magic way to cope with fatigue, some amazing solution that just sorts it all out. Unfortunately, there's not – or at least not that I know.
The way I cope with fatigue is by doing lots of small things which tend to fall into three categories:
- Conserving and managing my energy
- Boosting my energy
- Accepting fatigue as part of my life and adapting to it
When I put all those things together, I do find it's possible to live a relatively normal life with ongoing fatigue, but I still have to work hard to keep doing all these things. So, let’s have a look at some of the things I keep doing to cope with it.
1. Checking medication – If I run into a bout an unexpectedly severe fatigue, or if my RA starts flaring and I suddenly start to get that serious fatigue symptom, I will look at my medication because that's sometimes a sign that the meds I'm on are working as well as they should. So, that’s the first thing. I'll question whether the meds are working, and I might also have a chat with my rheumatologist, because it might be a case of just changing the dose a little bit.
And then the flip side of that if the meds are causing the fatigue or exacerbating it. There are some medications I've taken that mess with my sleep or that make me feel quite dozy, and that is really important if you are on such meds that you address that as soon as you can.
2. Vitamin intake – So, assuming that all the meds are where they should be, the other important thing is making sure that you are not deficient in any vitamins or minerals. The three that really stand out, are vitamin D, vitamin B12 and other B vitamins, and iron. If you are depleted in any of those, you are going to experience a drop in energy. I like to take a multivitamin supplement every morning and then I combine that with a smoothie. That combination gives me a really good start to the day.
3. Exercising – The other element I combine to the start of my day is some exercise. Now, I want to be clear, it is very difficult to exercise and cook meals from scratch when you have fatigue and also joint pain.
While I strongly advocate for doing exercise and maintaining a healthy diet, I do want to acknowledge that it can be difficult. It's certainly something I find difficult. It's taken me a while to find something that really works well for me, and that is exercising at the start of my day for 10 minutes.
By exercising, I can strengthen the muscles around my joints, so that means that I'm spending less energy when I'm dealing with rheumatoid pain. But it also gives me a bit of an endorphin boost to start the day.
If I have a good day, those 10 minutes will be quite lively. If I'm having a bad day, it might be just as simple as doing some chair yoga. Whatever it is, I'd just like to build that little bit of movement in every day, and I have found that since I started doing that, I've been much less likely to need to nap in the afternoon.
4. Having a nap – When you are dealing with fatigue, it can be extremely tempting to take naps during the day. It's something I definitely do. However, it's not necessarily something you can do very easily. If you’re at work, there's not usually a great opportunity to take a nap.
What I used to do when I worked in an office, is I would find myself in a situation where I just felt absolutely desperate to lie down and when that happened, I didn't have much choice.
What I found that worked is that I would get up and get a glass of water because being hydrated helps to keep you alert, and then I would just try and get outside the building just to get a bit of air and light. That would usually perked me up to get me through the rest of the day.
If I am at home and I need a nap, I will try to let my body rest, but I try to keep it a fairly short amount of time and limit it to half an hour. That's because longer naps really mess up my sleep patterns afterwards, so I actually set an alarm, so I’ll just nap for about half an hour.
What I've tended to find with that is that I've got quite good at just napping for 20 minutes and then I actually feel quite refreshed. There are studies that show, in fact, that shorter naps are more beneficial for you when you nap for longer periods at times, you're more likely to wake up groggy. So, I try not to nap too much, but there are just times when you need to do that.
5. Allowing yourself to rest when you need to – I used to ignore my body when it was telling me to rest. For a long time, I would try to push on through, especially when I was working. I would use tools to do that, that probably weren't my best choices. I used to drink a lot of coffee during the day, I would also rely on sugary snacks for a bit of a sugar boost, and then if I had to do something in the evening and I was really feeling it, I would use alcohol to help me keep awake and alert.
Now, the problem with using those things is that they work great in the short term, might be able to get you through a particular day or evening, but over a long period of time, they just make the fatigue much worse. That's because you get an energy in a chaotic up-and-down way, and also because they’re really disruptive to sleep. What I found much better is if I need to rest, I'll find a way to rest. Even if it's just sitting in a chair for 10 minutes, I try and do that.
If it's not possible, I will try and get some water, have a little time outside, and if I really need a little snack, I’ll eat peanuts or something like that.
Now, what I'm talking about here is really moving from not accepting fatigue as being a part my life and accepting it and adapting to it. That’s something that took me a very long time and I found very, very difficult to do. I still found it very difficult to do, in fact, but making that shift in mindset has helped immensely.
+1. The power of saying no – What I do now is I look at every day and assume I'm going to have a difficult day with a fatigue, and then if I have a good day, that's great. I've got extra time.
The way I do that is I've got very good at saying no to things. I am very ruthless when it comes to prioritizing what I do, and that can be difficult because it means saying no to lots of things I'd like to do. It has meant cutting down my social life significantly. It has meant recognizing that I really only get one burst of energy in a day, so I have to choose where I spend it. Do I spend it on a social event? Do I spend it on work? Do I spend it on doing around the house? Those can be some really tough decisions, but by stepping back and realizing that by making those decisions, I am actually going to give myself a better chance to have a reasonable amount of energy on the long term.
The Spoon theory
If you are part of the chronic pain community, you've probably heard the term ‘spoonie’ or ‘managing spoons’ or ‘running out of spoons’.
The Spoon Theory is a really useful concept to talk about managing units of energy during the day. When people talk about spans, what they're talking about is the idea that you start the day with a given number of spoons, and every time you use up a chunk of energy, you lose a spoon. Your goal is to keep as many spoons until the end of the day and try not to run out of spoons by lunch time. I found that a very helpful way to start thinking about managing my energy and being able to prioritize and say no to things. And part of not running out of spoons is thinking carefully about a lot of the small things I do every day. A really good example of this is that I used to wear shirts that had buttons on, and it's really hard for me to do up buttons. I've got some damage in my fingers and It's hard me to grip things. So, every morning, I would have this experience where I’d get really frustrated, and it would take me 15 minutes to get my shirt on. By making a simple change of moving just to tops I can just pull on, I don't have to do that anymore. So, where I used to spend a spoon doing up a shirt, now I don't at all. I have that energy left and then I can use it for other things that I want to do and that I enjoy.
Similarly, if you're looking for something that can save you some spoons, I recommend dry shampoo. If you're looking for more tips and tricks like that, there are so many out there. I strongly recommend checking out a lady called Cheryl Crow, she runs a community called Arthritis Life, and she makes those great videos around some of these life hacks and tips.
You are not alone
I know different people have different things that work for them. I've not really talked much about diet here because I've not found it as significant for my fatigue, but I do know other people have had great results from dietary changes.
And that brings me to my final point.
You are not alone. There are many, many people who deal with fatigue related to chronic joint pain, and I would strongly recommend that you join an online community if you've not already done so.
Unfortunately, fatigue is not well understood generally, so it can be frustrating when you're trying to tell friends and family who you're dealing with. you can find a lot of support and also a lot of good ideas and tips in chronic pain communities. What works one person doesn't always work for another, but in my experience, that is the best way to get some of these ideas.