Lesser known symptoms of CFS/ME
Blog,  Chronic Illness

CFS/ME symptoms that aren’t as well known

Being diagnosed with CFS/ME has been a huge learning curve – even nearly four years on. 

There are so many symptoms that come with the illness, it’s more than just all encompassing tiredness and exhaustion. Being tired causes problems of its own, which is why Chronic Fatigue can be such a destructive disorder.

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CFS/ME Symptoms

Symptoms of CFS/ME you may or may not know about.

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 ill. It just didn’t seem normal.

She informed me that there was actually nothing wrong with me, and this was just a side effect from being so exhausted. Apparently, 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. 

I typically have at least a headache for part of the day. Some days it’s a migraine by the time I get home from work. I’m pretty used to them now, but it doesn’t make the migraines any less painful. As I have them often I try not to take painkillers unless I need to, and I have to make sure I am drinking enough water and not too much caffeine – that causes headaches in itself. 

I don’t really know what life is like without headaches, but you do get used to it really and I don’t notice them very much now.

Dizziness.

This is one I’ve only recently discovered myself. 

After a particularly busy weekend I noticed in work that I was getting head rushes and dizziness when I moved my head. It was a really stressful week, 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’s so 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 quite often, even when I’m standing still.

I’m sure other people get it more frequently than I do, and if you’re one of them I am truly sorry. 

Tiredness does more than just make you slower, it affects your brain and body in so many ways that you (or I) could never expect. 

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. 

For me, 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. 

It can get quite uncomfortable when sleeping too, and I find I have to move around often to not put too much pressure on any joints – particularly my hips and knees. Not ideal when you are already tired all the time!

Brain Fog.

I’m not really a stupid person. Or at least I like to think I’m not. But now, sometimes I am so tired that I can’t think of the name of something, or can’t put words together properly.

At my worst, I’ve been so tired that I’ve forgotten how to use cutlery properly – it was embarrassing. And it’s not an isolated problem. Some days in work I have no idea what is going on. 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. 

I know that I am not the only one who experiences this, and it makes me feel so awful when it happens. My brain just doesn’t work quickly enough, I forget things, my mind becomes blank. 

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

Colds.

I constantly have a cold. My immune system is so bad that I pick up every single one that goes around. 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’. 

Cold’s are awful, especially for someone who is already exhausted. 

Sensory sensitivity.

ME/CFS can affect each of our senses in a different way. Personally my eyesight is affected – I have insane sensitivity to sunlight, and even just daylight. 

The best way to explain it is like when you wake up in the middle of the night and it takes a while for your eyes to adjust to the brightness. I often need to wear my sunglasses when I’m outside because it’s so bright. And it’s really painful. 

Sight is just one of the problems, I know there are others who are very sensitive to other things, such as sounds and taste and smell. It really depends on who you are and how your illness affects you. For me it’s just a sensitivity to light, but there are other people who have sensitivity to other things (and some who are sensitive to ALL of them). 

Mental Health Blog Philippa Claire

CFS/ME is exhausting. But it’s so much more than just tiredness (well, exhaustion). It affects us in so many ways, some painful, some just plain annoying. 

It also affects us on different levels. There are people with CFS/ME who are bed bound, without the energy to even get up. Then there are people like me who are struggling each day but are able to function enough to work and live an almost normal life. 

If you think I’ve missed anything from this list 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).

13 Comments

  • Heather

    I had no idea how debilitating Chronic Fatigue is. I always thought it was just being tired. I feel for anyone who has to go through this. thanks for sharing!

    • Philippa Claire

      It’s a very misunderstood condidtion, and there is so much more to it than a lot of people think (including me, and I suffer from it!). I’m glad it has shed some light.

    • Philippa Claire

      I didn’t either until I started to experience them. I often forget such simple things – like when I shower I forget if I’ve put in my shampoo already or not and sometimes have to re-shampoo my hair to make sure!

        • Philippa Claire

          Chronic fatigue is a very interesting illness (although it just feels crap when you’re experiencing it yourself). I think a lot of the other symptoms are just side effects from the extreme exhaustion we experience, tiredness causing a lot of problems.

  • Jaya Avendel

    I love getting a look into the littler-known aspects of all things! There is nothing like learning something new, and looking at something old with new eyes. Fatigue has many side effects that are often attributed to other things, wrongly so. Thank you for sharing the knowledge!

    • Philippa Claire

      You’re welcome – thank you for taking the time to read it! It’s good to know the things I am writing are helping other people understand the condition more.

    • Philippa Claire

      I didn’t really fully understand it until I started experiencing it fully myself. I had no idea how anyone could be bed bound by tiredness, but it is so destructive. I’m very fortunate to be able to live a relaitvely normal life, but not everyone is that lucky!

  • Lisa Foscue

    I was diagnosed with CFS after my hysterectomy in 2012. In the beginning I would have symptoms of chronic fatigue, breathlessness alot of flulike symptoms. Now 9 years later I’m experiencing alot more. I’ve been able to pinpoint over the years what triggers are responsible for my chronic fatigue, stress being the number one culprit. I am doing my own research on ME/CFS to find answers and have come across inflammation as being a cause for the condition. I would appreciate any feed back you or your followers have if any.
    Thanks, Lisa.

    • Philippa Claire

      I’m sorry to hear you’re a fellow sufferer, but I love that you’ve been able to notice patterns in terms of symptoms as CFS is so upredictable!
      I know a lot of people who have developed it following a viral infection, which is why a lot of people who have had COVID19 have developed CFS-like symptoms, post-viral fatigue being a common one.
      I actually have no idea what caused mine as it seemed to develop over time with no obvious moment of change. But I’m sure there must be something I’m missing.
      Thanks so much for this really helpful and informative comment, it is great to hear the perspective of another sufferer.

      Philippa Claire xo

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