12 Lesser Known Symptoms of ME/CFS!

There are a few obvious symptoms of ME/CFS which are often talked about, including fatigue, muscle and joint pain and brain fog but in this post I am going to discuss the symptoms of the illness that aren’t talked about as much! Brain fog can actually be split into separate symptoms anyway and it can be difficult to understand so I have laid out a few examples below. I think it is so important for people to be aware of these symptoms as well as the main ones, as these can affect sufferers during day-to-day life, even if they are on a ‘good day’.

Anyway, the reason for the post is to talk about the lesser known symptoms so get started!

12 Lesser Known Symptoms of ME_CFS!.png

  1. Short Term Memory Loss

This is the first example of brain fog and it can vary; sometimes it can be as simple as ‘what did I come into this room for?’ or ‘wait, what was I talking about?’ but other times I can’t remember what I had for tea the night before, or even for breakfast that morning! This symptom is really just a nuisance to be perfectly honest!

  1. Sensitivity to Light/Sound

For some reason ME/CFS can affect your sight and hearing. I noticed this when I was on holiday in France just before my diagnosis and the sun would really get to me, more than normal and I found myself having to use sunglasses on mildly sunny days… in England! Sound also gives me some killer headaches if I’m not careful, especially listening to music with headphones which is something that never bothered me!

  1. Lack of Temperature Control

This one I also noticed when I was in France, as it was boiling hot and sometimes I would be shivering because I was so cold… and in the winter I can be sweating from being too hot when everyone else is freezing cold! This isn’t all the time but it happens enough for me to notice it!

  1. Anxiety / Panic Attacks

I’m not going to go into too much detail as this is quite personal and I don’t feel ready to share my experiences with panic attacks yet… I would like to write about them one day, but now is not the time! Basically people with ME/CFS have a bigger tendency to get anxious and have panic attacks!

  1. Dizziness

This one is fairly self-explanatory! Sometimes getting out of bed is a struggle, especially standing up because I get so dizzy I have to sit straight back down again! These usually happen when I’m heading towards a relapse.

  1. IBS

This is short for Irritable Bowel Syndrome – I’m not going to elaborate for obvious reasons!

  1. Sudden Headaches

Going back to the noise sensitivity – I can get headaches, suddenly! They can be very unpleasant and can does not help at all with the brain fog!

  1. Swollen Glands

Now this one I always thought was from the Glandular Fever but I’ve found out it is actually a symptom of ME/CFS! It usually happens when I’m about to have a flare-up and my neck can get quite swollen and sore, as well as other areas where the glands are. It can get very uncomfortable and sore and if my neck is hurting, it tends to affect my shoulders, back and can cause headaches as well. It isn’t great!

  1. Poor Concentration

This ties in with brain fog, as does the symptom below. I find I can’t concentrate on one thing for too long before I start getting headaches/fatigue etc. so I try and limit doing work to 45 minutes and have a 15-minute break before starting again – this technique works really well if you do Mindfulness in-between!

  1. Difficulty Finding Words

You know when you have a word you want to use on the tip of your tongue but you just can’t find it? Yeah, it’s that. But it happens ALL THE TIME. I’m being serious – sometimes it is the simplest of words, or a word you have literally just used and then suddenly you can’t find it! The other thing that can happen is muddling my sentences up so I can be talking and it just comes out in gobbledegook!

  1. Insomnia

Naturally if you’re having a ‘bad day’ and you’re resting all day, your body doesn’t recognise that it needs to sleep through the night so you can be awake for hours! It has actually been really bad recently as every night I was awake until 2, sometimes 3 in the morning and then I would be waking up at 7/8 and would only have a maximum of 6 hours’ sleep, if that!

  1. Alcohol Intolerance

This one I am going to talk about separately but basically ME/CFS can cause you to become intolerant to certain foods/drinks and alcohol can be one of them. I got to the point where I had to swear off all alcohol for a few months and then slowly introduce it back in. However, I can go through phases where I can’t drink again so I just have to monitor it and see which types affect me more than others! Sometimes I can only drink wine, and sometimes it is wine that makes me ill!


Here’s a few questions for you to think about:

How do these symptoms affect you, if at all?

Can you add any new ones to my list?

Have you found anything that helps any of these symptoms?

HOPEFULLY this has helped any family or friends of sufferers to understand their illness a little bit more and if you suffer this illness yourself, I would love to hear from you! Remember to like and share if you found this helpful!


*These points are simply from personal experience and may vary from person to person. If you have any concerns these symptoms and your health, you should consult with a Doctor*

 

 

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11 thoughts on “12 Lesser Known Symptoms of ME/CFS!

  1. Lots of the less obvious symptoms seem to be to do with the autonomic nervous system and that controls bodily processes not under conscious control, so there’s a lot that can go wrong! It appears as if the Sympathetic Nervous System (fight or flight) is over sensitive (over vigilant to noise, sight, smell, high heartrate etc). However a study into a drug that would correct that made pwme feel worse, which is curious. It may be more that the Parasympathetic Nervous System (rest and digest) is under regulated so it doesn’t switch on when appropriate, sort of leaving SNS ‘on’ by default. Some of the wackier sounding ME treatments are attempting to correct this. IMHO there is a value in finding something that helps rest and digest state but it’s individual preferences rather than there being one true protocol. Eg meditation, slow video game, tai chi, Pinterest, herbal tea etc etc

    If you have a lot of dizziness standing it’s worth checking for POTS/ hypotension, these are often missed for a long time if you already have ME diagnosis.

    I’d like to add in the symptom of Acquired Dyslexia. Pwme get unusual reading problems which are quite distinctive and could be part of diagnosis. There’s a page on the ME Research UK website about it. I don’t have the link to hand.

    Liked by 2 people

  2. This is spot on. I have every one of these symptoms along with all the pain that comes with it. The one I think I hate the most is the difficulty finding words and I slur my words sometimes. It’s very aggravating, to say the least. I also have a very, very long list of diagnoses and many more symptoms. The short term memory loss really drives me nuts, too. My kids are always saying that I already asked that 12 times, and I ask them to just please tell me again, and I’m sure I’ll ask another 12 times…….frustrating. Another great, informative post, especially for those who have recently just been diagnosed. Take care. Peace out! 🙂

    Like

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