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12 ME/CFS Symptoms I Experience That Aren't Talked About as Much

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There are a few obvious symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (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 I experience 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 people during day-to-day life, even if they are on a “good day.”

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.

2. Sensitivity to Light/Sound

For some reason ME/CFS can affect my 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.

3. 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.

4. 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, some people with ME/CFS may have a bigger tendency to get anxious and have panic attacks.

5. 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.

6. IBS

This is short for irritable bowel syndrome – I’m not going to elaborate for obvious reasons!

7. 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.

8. Swollen Glands

Now this one I always thought was from glandular fever but I’ve found out it is actually a symptom of my 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!

9. 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 I do mindfulness in between.

10. 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.

11. Insomnia

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

12. Alcohol Intolerance

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 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 people with ME/CFS to understand their illness a little bit more and if you have this illness yourself, I would love to hear from you. Remember to like and share if you found this helpful.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

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Thinkstock photo by Stockbyte

Originally published: April 25, 2017
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