3. Symptoms

As well as severe physical and mental exhaustion, people with ME suffer with a wide range of other debilitating symptoms.

Hello! Now, let’s have a look at what are the symptoms of ME?

Severe Fatigue

People with ME suffer with fatigue that is extreme, debilitating, and long-term. This is both physical and mental exhaustion, and it’s far more than just normal tiredness. This exhaustion can’t be properly relieved by resting or sleeping. For it to be “called” ME, the fatigue must have lasted more than a few weeks, but has not been life-long - the person should previously have been healthy and active - and the fatigue can’t be explained by other things, such as by diagnosing other illnesses.

With ‘physical fatigue’, we’re talking about exhaustion, weakness, dizziness and feeling faint, or feeling really ill, like you’ve got flu - after any physical exertion, which, both in how severe it is, and in how long it lasts, is completely out of proportion to the amount of activity. So, someone with pretty bad ME could be flat on their back after just walking for 5 minutes, and it could seriously take them one or two whole days to recover.

Mental fatigue means your concentration is seriously impaired, most of the time, and after just the shortest amount of activity. Short-term memory is often bad (usually because your concentration is too poor to take things in, and not actually because the memory itself is affected). Cognitive (or thought process) problems and confusion, are also common - like not being able to think of people’s names, or words you want to say; your attention span is a lot shorter than it should be - you might realise that you’ve read one page of a book several times and still not taken in a single word! - and having a feeling of being ‘spaced out’ or ‘not with it’. It is often described as ‘brain fog’.

Together, it means your stamina - both physical and mental - is severely reduced - both in terms of running out of energy far too quickly, and then recovering very slowly. Sometimes it takes days to get over doing something small that anyone who’s well wouldn’t think twice about.

Hypersensitivity and Dysautonomia

Another important symptom that almost everyone with ME seems to have, is being extremely hypersensitive - overreacting physically to pain and sometimes even to touch, to temperature and weather, smells, noise and light (so-called ‘sensory overload’). Allergies, food intolerances and not being able to cope with alcohol, or with the side effects of medicines, are common too. Then there’s coming down with every virus or bug that’s going around, as well as heightened emotional and psychological sensitivity, including to stress, which all just adds to the problems.

People with ME also very often have problems with autonomic regulation, or “dysautonomia” - that means the body isn’t able to control properly things like blood pressure and body water levels, and blood sugar levels, which can lead to feeling faint, as well as difficulty regulating body temperature - getting cold in the summer and hot in the winter, or not being able to keep your hands and feet and head warm, or sweating at night.

It’s like the body’s thermostat for everything (or the brain’s ‘volume knob’) has gone wrong, causing the brain and whole body to overreact to every input or stimulus, whether from inside the body itself or from outside.

Other Symptoms

As well as the defining symptom of severe exhaustion (the low stamina and the slow recovery from fatigue), and over-sensitivity and dysautonomia, ME also includes a range of other symptoms. Someone with ME will probably also have several of these symptoms, but not necessarily all of them, - either continuously, or from time to time:

- Bad headaches or migraines, which don’t usually improve much with painkillers. At my worst, I had constant headaches that really were 10 out of 10 on the pain scale, they couldn’t have been any worse - and at times I literally couldn’t take my head off the pillow - even when I had to struggle to walk to the toilet, I had to carry my pillow and keep it pressed to my head!

- Stiffness around the neck - feeling sore, or it could be really difficult to turn your head, even to turn and talk to someone. I’ve noticed that almost everyone I’ve ever spoken to with ME has this, but they hardly ever think to mention it as a main symptom - just personally, I think that this reflects what’s actually at the root of ME - something like an inflammation in the brain or spine around the neck area.

- Dizziness - sometimes related to the neck stiffness, and sometimes feeling like travel sickness, and nausea;

- Pain in the muscles and bad cramps;

- Muscle weakness and muscle twitching (sometimes including the eyes and blurred vision) - the muscles have a problem making energy, and walking a few steps could make the body react as if it’s just run a half marathon;

- Problems with sleeping - sleeping most of the time (especially early on in the illness), disturbed sleep patterns, and not feeling better after sleeping - in fact, people with ME often feel even worse in the mornings, after they’ve been sleeping;

- Problems with balance and clumsiness, dizziness or faintness when standing up, or so-called “orthostatic intolerance”, as well as heart palpitations or a racing pulse (tachycardia), - and people with ME can experience fainting, or seizures, or even actually be paralysed for a time;

- A chronic longterm, or recurrent repeating sore throat, swollen lymph nodes or glands (in the neck or under the arms), blocked sinuses, ulcers, and keeping on coming down with infections;

- Flu-like malaise (feeling generally ill, or even feeling “toxic” or “poisoned”)

- Mood swings and feeling over-emotional or crying a lot (emotional lability), feeling easily irritated, and frustrated; anxiety, and feeling depressed - both physically because of changes in the brain and the body, and also as a result of having to live with the effects of an illness as bad as ME;

- Joint pain (but without swelling)

- Numbness, or tingling in the arms and hands; and

- Irritable Bowel Syndrome (IBS) symptoms, like constipation or diarrhoea, bloating, aching, nausea, sickness, changes in appetite, and possible food allergies or intolerances.

If you’ve got through listening to that whole list of symptoms, well done! Now imagine having to live with them - for months or maybe years. That really is a genuine list of symptoms that people with ME can have, so as you can see, it is a complex illness. It also has a lot of different names - or there a lot of similar conditions that might be related, or might not be! More about that next time!