Professor James Galloway: Fatigue and Mismatch Between Symptoms and Tests

Transcript 

Professor James Galloway, Professor of Rheumatology at King’s College London

Hello, my name is James Galloway. I’m a professor of rheumatology at King’s College London, and I’m going to talk to you today a little bit about symptomatology in sarcoidosis and why some people often feel worse than their tests may be saying.

I think this is one of the challenges for many diseases, but particularly for sarcoidosis. It is a condition that doesn’t show up on tests in the way that other things may do. Scans can look stable, lab results may be normal. Blood tests like the C-reactive protein (CRP), so often a biomarker we use to measure disease, if you’ve got an infection, the CRP goes high. Surely in sarcoid, if you’ve got inflammation, the CRP goes up, and yet it doesn’t.

The CRP may be normal, but you, as a person living with sarcoid, feel exhausted. And what does this mean? Does this mean my doctor doesn’t believe me? If the blood tests don’t show anything, do they trust that I’m ill?

And sometimes in clinic we have this phenomenon whereby the clinician appears to just skate past it. You tell the clinician, “I’m exhausted, I’m tired,” and they nod and they carry on, they ask you other questions, and you think, “Hold on a minute… have they just not paid attention to my symptom, my fatigue, my brain fog, those symptoms?”

So I want to take a minute just to say that clinicians often skip past fatigue as a symptom, and that’s not because they don’t care about it, and it isn’t because they don’t value it as a symptom. But there are some important things to share with you about clinical diagnostics and fatigue, and that is that fatigue is genuinely an unhelpful symptom as a diagnostician. And I’ll tell you why.

It’s because if I’m thinking, “What’s wrong with the person?” and they say, “I’ve got chest pain,” you think, “Okay, well, chest pain could come from the heart or the lungs.” Or, “I’ve got abdominal pain down in my lower abdomen,” you say, “Oh, well, it could be from the appendix or from an ovary.” You think about the sorts of things that can cause those symptoms.

But if someone comes to me and says, “I have fatigue,” that gives me no insight into where the problem is, because we see fatigue with almost all medical conditions we deal with in medicine. You know, if you have chronic lung disease, you’ll have fatigue. If you have chronic inflammation in the brain, you get fatigue. If you have cardiac disease, you get fatigue. If you have an infection, you become fatigued. If you have a cancer, you become fatigued. And the list goes on and on. Almost everything we see, we see fatigue. And of course, if you are stressed, you get fatigue.

So the reason clinicians sometimes gloss over the description of fatigue isn’t that they don’t care about it, not that it’s not an important condition, but that as a diagnostic tool, it doesn’t often give direction.

And there’s another complication. Fatigue does not track very well with disease activity. And we’ve seen this for many conditions of the immune system. When people come with conditions of the immune system, and this is true for Crohn’s disease, this is true for autoimmune arthritis, this is true for sarcoid – people will come with fatigue and other symptoms of the disease. We treat the disease with immunotherapy drugs to control the inflammation, and that bit gets better. We see control of inflammation in the lungs or in Crohn’s disease, the bowels get better, but the fatigue can persist.

And that’s really important to acknowledge that persistent fatigue is complex, and it is not just a matter of immunosuppression for fatigue. Giving more drugs, switching from methotrexate to something else, doesn’t necessarily improve the fatigue.

What should we do though when we see someone who describes fatigue? There are some really important things.

The first thing is, if it hasn’t been checked first, I would always go looking for other things that drive fatigue. Medication, steroids, for example, in the short term can help suppress inflammation and the fatigue may improve initially, but actually long-term steroids also have been shown to disturb sleep and cause fatigue. So, there’s a real paradox there.

In acute sarcoid they suppress inflammation and fatigue may get some improvement initially, but, then again, worse again as a side effect.

Methotrexate as well, it’s a drug I love, but I know that can also cause disturbance in sleep and can cause brain fog.

But then also, there are things like just simply having been ill for an extended period causes deconditioning, and that can drive fatigue. And recovering from deconditioning is a slow, steady process of exercise and recovery.

Low mood causes fatigue. Some other conditions not related to the sarcoid, like anaemia or having a thyroid gland that’s underactive, can cause fatigue. And of course, sleep patterns cause fatigue. People who stay up late, get up early, if you have fewer hours of sleep, you’ll be more fatigued. So being busy with work, those things cause fatigue as well.

And often fatigue is multifactorial. So, my work-up for fatigue is to think about that in a more holistic way, rather than just simply saying, “Is this a marker of the sarcoid?” If someone says, “I’m tired,” does this mean I need to increase sarcoid medication? Because that is often not the answer. Paradoxically, it may actually mean that we should be reducing the sarcoid medication.

What helps? What are the evidence-based interventions for symptoms like fatigue?

Well, there is actually good evidence about things that can help, but it’s important to be fair that there isn’t a single pill that switches off fatigue in sarcoid. It’s more about moving the needle rather than an on-off switch.

The three things that probably have the real evidence base around fatigue are pacing, sleep hygiene, and exercise.

If you have a diagnosis of something like sarcoid and you might have been someone who used to do the parkrun on a weekend, and you could get to the shops in the morning before you do that, and then you feed a family of five at lunch, and then you can socialise with friends in the evening, and then also do your work that’s left over from the week at the end of the day, and think nothing of it. And then you’ve got your Monday to Friday nine-to-five or whatever hours… and you just carry on through. You get a condition and you know you have to slow down and stop, and then you get treatment, and the temptation is just to go back to where you were at the start without pacing yourself and building up gradually. And that is often where people come unstuck – they try and return to things they used to do too quickly.

As you’re recovering, you do need to pace yourself and gradually return to things, recognizing that you can’t do what you used to do. And if you want to return to that, it is a slow, steady process. Otherwise, you get the boom-and-bust phenomenon.

Sleep is really important, and I want to take a minute to say sleep hygiene shouldn’t be underestimated. If you wanted to do some research around this, I’d really encourage you to just look on the internet: “sleep hygiene.” What does this mean? When you read about it, it is really interesting.

There’s some really obvious bits: food just before bed is bad. Coffee after lunch is bad for sleep. Watching the news and looking at the things that are going on in the world just before you go to bed isn’t good. Things that are going to make you ruminate in the night aren’t good. Drinking a lot of fluid just before bed is pretty much guaranteed to get you up in the night to pass urine.

So there’s lots of things about sleep patterns that we can do that improve quality of sleep. But there’s also some really good research, and there’s quite a few online protocols, that can give you tips on how to do this.

If you want to improve sleep, the first thing to do is monitor your sleep and say, “How many hours of sleep are you getting?” There are various watches and devices that can track sleep for you. But then when you want to try and improve sleep, the next step is often to reduce the amount of time you sleep, paradoxically, so go to bed slightly later, get up slightly earlier. Shorten sleep, which will make you even more tired, which can then be a step towards then improving sleep quality.

I would encourage you to go and read, because there’s some really good evidence around sleep hygiene, and that sleep hygiene can really improve symptoms of fatigue.

And the third thing, and this again can feel paradoxical, is the idea of exercise. Exercise is one of the most consistent interventions that are shown to improve fatigue. But it’s not about saying, “Right, I’m going to run ten kilometres.” It’s about gentle and regular pieces of exercise. That may be that every day you commit to doing twenty minutes of stretching and exercises on a mat at home. It may be joining a class where you start very gently and build up. It may be formally taking part in some physio and some rehabilitation. But exercise as an intervention for fatigue is well established.

Although we’re all individuals and not everything works for everyone, from my reading of the evidence and the literature and having talked to many people, engaging in exercise is a really important part of the healing and recovery process, particularly with regard to symptoms of fatigue.

I should take a moment just to say one thing to be cautious about though. The world is awash with advertising, and in particular advertising for supplements. This is a sort of fictional supplement! Just giving you the idea that supplements are often out there and marketed as this one supplement is going to do everything – it’s going to make your hair grow back, it’s going to give you strength, increase your intelligence, you will look 20 years younger, look at those photos of people with hair regrowth and aging reversing and you’ll become more patient and tolerant of your children and loved ones and you will be less stressed when you go to the supermarket and can’t find what you need etc etc. Supplements are often advertised to sell the world, but I would just re-emphasize there is not a simple fix.

In general, I would be cautious about spending lots of money on things that are being commercially marketed. Do your research. Make sure you work out the provenance of information you’re reading. Where’s it coming from? Is this someone who is making money out of doing this?

Remember, if you come to NHS services, the NHS clinicians are not making money from people. They are paid a salary, but actually they will give you honest and more trusting advice than what is out there. If you have symptoms that are hard to treat these are exactly the type of symptoms that people who are selling and marketing things that may be don’t work will do.

The other bit of public health messaging, of course, is if you have sarcoid, I’m always cautious about supplements that contain calcium or vitamin D because those supplements in particular can make sarcoidosis worse.

So the key headline here is there is not a quick fix for the symptoms of sarcoid. There are things we will monitor, things like inflammation, CT appearances, lung function – we can see those improve. With other symptoms like fatigue, sleep, brain fog, those are taking time to improve. And it’s important that you think about sarcoid as a whole picture. Sarcoidosis activity is only just one part of it. There’s other factors: lifestyle, the medications, mental health, sleep and wellbeing, all of which need consideration. And often it is something that’s going to take time.

Don’t suffer in silence. Make sure your team know about these symptoms. Don’t feel ignored if they don’t appear interested. Remember their frame of reference, if they’re thinking about the inflammation and CT appearances and lung function maybe going in the right direction, so they’re not ignoring the fatigue – it’s just it’s not part of the same puzzle.