Myalgic Encephalomyelitis symptoms that aren’t as well known

I was diagnosed with myalgic encephalomyelitis (ME/CFS) nearly 10 years ago and there are still symptoms that arise that aren’t expected to this day. Each day is a learning curve with new and wonderful things to deal with (sense the sarcasm).

It’s more than just all encompassing fatigue – in fact this causes many problems of its own. That is why it can be such a destructive disorder, particularly for those on the severe end of the spectrum.

Keep reading to explore some of the more unusual and unexpected symptoms of myalgic encephalomyelitis – and let me know in the comments which one was the most surprising!

Please note this post was originally written in 2019 and edited in 2025.

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Symptoms of myalgic encephalomyelitis you may or may not know about.

Headaches.

One of the first unusual symptoms of Myalgic encephalomyelitis that I experienced was headaches.

I had to visit my doctor a while back to ask if there was something wrong with me, because I had suffered from really bad headaches and migraines every day for over a week. It was so painful, and I was having to go to work even though the light from the sun was making me feel nauseous. It just didn’t seem normal. I was wearing sunglasses in winter!

Actually there was nothing else wrong with me – this was just a side effect from being so exhausted. If your body isn’t getting enough rest it can manifest in things like headaches and other aches and pains that can make daily living difficult. And for someone with ME/CFS, getting enough rest can be really hard so headaches and migraines were inevitable.

I typically have at least one headache a day, varying in severity. About once or twice a month it gets up to migraine territory, needing more serious intervention, and this can take me out of action completely.

While I am pretty used to them now, it doesn’t make the migraines any less painful. As I have them so frequently I try not to take painkillers unless I absolutely have to, and I have to make sure I am drinking enough water as well as avoiding caffeine – these can only make the problem worse.

I can’t say I was expecting to get as many headaches as this when I was diagnosed, and especially not migraines, but at least I am more equipped to deal with them nowadays.

Dizziness.

After one particularly busy weekend I noticed in work that I was getting head rushes and dizziness when I moved my head. The week had already become overly stressful, and not being able to look at my computer properly did not make it any easier!

Dizziness is not a symptom I get often but when it happens it can be really distressing. It causes nausea, so I don’t really want to eat anything, and it makes it quite difficult to get anything done. I also lose my balance frequently, even when I’m standing still. I often find I need to prop myself up on something to avoid this – or sit down if that is at all possible.

When you have Myalgic Encephalomyelitis you can experience varying levels of dizziness. For me, I have mild symptoms, however on the more severe end people can experience fainting/syncope. Alongside this a lot of people diagnosed with ME (and Long Covid) also have a diagnosis of Postural Orthostatic Tachycardia Syndrome (PoTS) where the heart rate increases more than normal when standing up and can lead to more severe episodes of dizziness, lightheadness and fainting.

If you are interested in reading more about PoTS, why not take a look at the PoTS UK Website.

Joint Pain.

I think many people may be aware of the extreme muscle fatigue that we get with M.E., but something that may not be as well known is the joint pain.

The way I personally describe it is that it’s a bit like my joints aren’t lubricated enough so they get stiff and sore easily. If I walk for too long, or do something repetitive for too long, not only do my muscles ache afterwards but my joints get very painful. I feel a bit like a squeaky door.

Unfortunately, this pain can make resting and getting comfortable quite difficult – two things that are really important in managing my symptoms and can be made almost impossible. It has a significant impact on my sleep, which then has an impact on all of my other symptoms.

Perhaps one of the most frustrating parts of this symptom, and pretty much every symptom of Myalgic Encephalomyelitis, is that is occurs without any external signs. There is no redness or signs of inflammation, such as swelling. So no one can even tell it is there, besides those of us struggling with it.

Brain Fog.

I don’t think anything could have prepared me for the things I would do due to the cognitive difficulties, referred to as brain fog, that come along with Myalgic Encephalomyelitis.

At my worst, I’ve been so fatigued that I’ve forgotten how to use cutlery properly. More recently I have confused which pedal was which in the car and pressed accelerate, instead of brake. Some days in work I have no idea what is going on, and things descend into chaos. I have days where I just sit in a daze staring at the TV with no idea what to do with myself. Brain fog is no joke, and it is devastating.

I was once the girl who conducted research into Mindfulness and wrote a detailed dissertation on it, and then went on to get a first in her degree. Now I struggle to string sentences together and forget the names of people I’ve known my whole life. This just isn’t who I was meant to be.

I know that I am not the only one who experiences this, and it isn’t just a symptom of M.E, many chronic illnesses come along with a healthy dose of brain fog. Our brains just don’t work quickly enough, and we forget things, our minds becomming blank. 

You can read more about what life is like with this symptom on my post all about the things I do because of brain fog.

Colds and Hayfever.

Since my diagnosis of Myalgic Encephalomyelitis, I have found that I constantly have a cold. My immune system is so bad that I pick up every single one that goes around – as well as any other illness. I’m often run down, bunged up, I can’t really remember a time when I didn’t have a cold. It’s become a part of my personality now – ‘Phiz the sneezy girl’ – and I never leave the house without tissues and anti-bacterial gel in preparation for sneezing.

I’ve also developed hayfever, and need to take anti-histamines daily to avoid uncontrollable itchy eyes, ears and throat. Having never suffered with hayfever before, this was not a welcome experience, and I would love it to disappear.

For someone who is already exhausted 100% of the time (and that’s on a good day), having a constant cold and hayfever symptoms just makes everything so much worse. Plus colds are pretty gross, I’d very much like a day where I don’t have to worry about snot!

Sensory sensitivity.

Myalgic Encephalomyelitis can effect each of our senses in a different way. Personally my eyesight is affected – I have insane sensitivity to sunlight, and even just daylight. 

The way I like to describe it is to compare it to how your eyes process light when you are hungover. Your eyes feel strained, things are a bit blurry/out of focus, and even just the daylight hurts your head. I often need to wear my sunglasses when I’m outside because it’s too bright for my brain.

Sight is just one of the problems, I know there are others who are very sensitive to other things, such as sounds, taste and smell. It really depends on who you are and how your illness affects you. On the most severe end, there are people who have to wear ear defenders and an eye mask the majority of the time, because any light or sound can cause an extreme worsening of their symptoms.

Luckily (and I use that term very losely) for me it’s just a sensitivity to light, but sensory sensitivity on the whole is a big issue in the Myalgic Encephalomyelitis and Long Covid community.

Myalgic Encephalomyelitis is exhausting. But it’s so much more than just the fatigue. It affects us in so many ways, some painful, some just plain annoying. 

It also impacts us on different levels. There are people who are completey bed bound, without the energy to even get up or go to the bathroom. Then there are people like me who are struggling each day but are able to function enough to work and live a relatively normal life in comparison – although not without difficulty I hasten to add.

Are there any symptoms of Myalgic encephalomyelitis you think I’ve missed? Feel free to comment below so I can add them to my list!

Have you caught up on my most recent post? If not, read all about how loneliness can affect your mental health (and vice versa).