November 18, 2015

You might be wondering why on earth I'd write about the symptoms of ME/cfs when everybody knows Chronic Fatigue Syndrome or ME is about always being tired. What most people don't know is that this neurological illness causes dozens of unrelenting symptoms that fluctuate constantly and are quite unpredictable. The very least of these is an unfathomable exhaustion at the slightest exertion!

Fatigue is the least of our worries - let me share with you the list of symptoms that ME patients have to deal with on a daily basis, you might just be surprised at how strong we really are... not at all the lazy, weak, not-trying-hard-enough people that the general population thinks we are! We are warriors fighting constant battles within our own bodies every minute of every day.


Main Symptoms of ME/cfs

Below is a list of symptoms that appear on the ME Support website. They were taken from a survey where patients were asked what their symptoms were and appear in order of frequency, the most common symptoms closer to the top.

Keeping in mind that each person is different and our symptoms fluctuate constantly, I thought I'd keep track annually of how my symptoms might change over time, so here's my first year in symptoms. Keep in mind that all symptoms are made worse by physical, mental or emotional exertion and stress.

ME/CFS Symptoms I Have Daily

These are symptoms I have daily, they come and go throughout the day, can be quite random or all at once (like after a shower or hoovering).

  • Muscle weakness after any exertion, lasting for days.
  • Muscle pain (mainly back of shoulders, upper arms and thighs.)
  • Sensations of pins and needles or numbness.
  • Loss of concentration.
  • Muscle twitching.
  • Difficulty with speech (using the incorrect word or not being able to think of a word.)
  • Poor circulation (cold hands and feet.)
  • Memory impairment.
  • Extreme sensitivity to sound.
  • Sleep disturbances.
  • Difficulty in standing for any length of time.
  • Joint pains.
  • Balance problems.
  • Difficulty walking.
  • Poor temperature control.
  • Poor co-ordination (clumsiness.)
  • Skin is sensitive to touch.
  • Great thirst.
  • Creepy crawly sensation all over.
  • Numbness.
  • Heavy limbs upon waking.
  • Unrefreshing sleep.
  • Weak and gritty (noisy) joints.
  • Visual disturbances (like seeing something out the corner of your eye, but there's nothing there).

Additional Symptoms I Get During Flares

These are some add-ons which might appear during flares (like if I go out or have too many visitors in a short space of time or do more than one chore in a day, flares, or payback as I call it, can last for days after the trigger activities) as well as intensity or severity of all other symptoms will increase during flares.

  • Blurry vision.
  • Headache.
  • Abnormal sweating with an unusual smell.
  • Breathing difficulty.
  • Palpitations and/or racing heartbeat.
  • Vivid dreams or nightmares.
  • Disorientation.
  • Nausea.
  • Chest pains.
  • Constipation or Diarrhea.
  • Recurrent sore throat.
  • Enlarged or painful lymph glands.
  • Altered sense of taste and/or smell.
  • Panic Attacks.
  • Pallor.

Some Common Symptoms I Don't Get Regularly

  • Tinnitus (ringing in ears.)
  • Emotional instability (crying easily or rapid mood change.)
  • Depression.
  • Poor bladder control.
  • Spontaneous bruising and skin rashes.

I don't suffer from depression or emotional instability and that can only be by God's grace and His peace that passes understanding.

I also don't regularly have tinnitus either. I had it once during a very bad spell about a month into my illness.

My bladder function seems unchanged and I bruise much more easily now, but I wouldn't say spontaneously.

Gratitude & Faith

Praise God for His peace and strength that gets me through each day smiling and praising Him! (even if I'm stuck in bed)

I see how this illness is affecting others who don't know the Lord and I can honestly say that I'd be falling apart if it weren't for our awesome God!!

A long list of symptoms, title reads: the many symptoms of ME/cfs. Dozens of fluctuating symptoms.

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What About You?

  • Do you have any symptoms not listed here?
  • How have your symptoms changed over the years?
  • What would you say is your worst symptom?
    • Currently my worst symptom is probably the constant pain.
A list of symptoms of Myalgic Encephalomyelitis

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Note: a version of this was first published on Facebook or Instagram. Although this website was created quite a bit later, I wanted to have my whole chronic illness story in one place, so I have transferred it here and backdated it.

Thank you for stopping by. Hugs, Char xx

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