Greetings from a Tired Girl!
It occurred to me recently that I haven't exactly explained what ME/CFS is and the variable effects it can have on a person's life. If you've been reading my blog for a while you'll know that I became unwell with a severe case of glandular fever last summer and was subsequently hospitalised. Whilst I am nowhere near where I was a year ago, my body never fully recovered from the ordeal and after seeing my GP regularly since then, and a specialist more recently, I have now been diagnosed with ME/CFS. But what exactly is that and how does it effect me and the millions of others worldwide, and why do we know so little about it?
Before I jump into it, I should tell you that ME/CFS is on a sort of scale. So the things that one person experiences will be entirely different to those that another person, with the same diagnosis, experiences. I will be covering the various symptoms of ME, but these are not clear-cut. The difficulty is that ME can present like many other chronic illnesses, and a lack of markers to test for means that often people are misdiagnosed or receive multiple diagnoses, as doctors are unable to differentiate between these illnesses with the current research available.
Causes
ME stands for myalgic encephalomyelitis, hence why it's often referred to as chronic fatigue syndrome (or ME/CFS) - much easier to say. ME/CFS is only newly recognised as a "real" illness, and as such the research into it is all relatively new. As a result, we don't exactly know what causes it. Often it is diagnosed after a prolonged illness, typically a virus such as Epstein-Barr Virus (the virus that causes glandular fever). But here's the kicker! Lots of people get glandular fever, but not all of those people get ME. "So what determines whether a person will get ME?" I hear you ask.
Well... we don't know. Not the answer you were looking for, I'm sure. It certainly wasn't the answer I was searching for when I first started looking into ME/CFS. It seemed to me that it was just my luck to be one of the few who develops ME, an entirely random selection process.
That isn't entirely true, though.
The thing about medical research is that it takes a long time to find a causal link between people who develop illnesses. Take Alzheimer's disease, for instance. We have known about Alzheimer's disease as the most common form of dementia for a long while now, and we have thrown billions of pounds at the research. Yet still, in the year 2020, we haven't found the root cause. That doesn't mean that Alzheimer's develops randomly, it just means we haven't found the link yet.
Similarly, ME (an entirely different neurological disease, but a mystery encased by the same organ) must have a cause, we just haven't found it yet. So for now, it just seems random. Some people catch a cold, the flu, glandular fever, or something else entirely and make a full recovery, and others of us do not.
There are a couple of theories, one being that people who develop ME/CFS after a virus have immune systems that are wired slightly differently. Instead of fighting the virus just enough, the body fights so hard that it essentially exhausts itself. Stress is also considered an enemy of ME/CFS and may be a contributing factor to who develops ME. There might also be a genetic link, meaning that if your parents/siblings have ME, you might be more likely to develop it also. However, if there is a genetic link we are yet to find the gene causing the development of CFS. Personally, nobody in my immediate family has been diagnosed with ME/CFS, so if the illness is hereditary, my parents may have been asymptomatic carriers of the gene.
If you want to find out more (and read some of the science) the CDC website is a good place to start!
Symptoms
As I said, the symptoms vary from person to person, so I'm going to try to give the best overview I can of the main symptoms. This is by no means an exhaustive list!
Fatigue
It's in the name "chronic fatigue syndrome" so this one's pretty obvious but it is pretty much the only symptom that you can guarantee every person with the diagnosis will have. Fatigue is not like tiredness or exhaustion after a long day. Fatigue feels a bit like swimming upstream. But constantly. Every minute of the day. Even when you're not moving. Just blinking. Fatigue. All the time. Really.
Muscle or joint pain
This is another common one, and yet most people don't know that it's a symptom at all. That's mainly because people with chronic pain learn to live with it. For the vast majority of us, chronic pain is not treated with prescription medication, or anything at all. The chance of becoming addicted to painkillers tends to trump getting any kind of relief for most doctors, so it's rare that we're prescribed anything to help out. So we literally just walk around in pain all the time, usually with a smile on our faces, and you are none-the-wiser.
Headaches
The kind you wake up with in the morning for no good reason and can't get rid of for days on end. No amount of Neurofen will kick it. The worst.
Sleep problems
You'd think, just to balance out the fatigue, we'd at least be able to sleep a lot. But you'd be wrong. Many people with ME/CFS suffer with insomnia and/or sleep apnoea (a condition where your breathing stops and starts whilst you sleep). Yes, you heard that right. The people who are plagued with constant exhaustion can't sleep. There is no justice.
Flu-like symptoms (AKA feeling hungover without having a drop of alcohol)
You know when you wake up after a night out drinking with your friends, your mouth is dry, you can barely open your eyes and your legs no longer feel like legs, but it's all worth it because you had a great night? Yeah I wake up like that without the good memories from the night before. I wake up like that after making myself a cup of tea and being in bed by 9pm the night before.
Nausea
This is self explanatory. I have absolutely no explanation for this at all. It has nothing to do with what I eat, or a stomach ache. There are no warning signs.
Problems thinking, remembering and concentrating
We've all done that thing where you walk into a room and forget what you're there for, but have you ever gotten halfway through a sentence and forgotten the ending? Have you ever looked at a fork and not been able to name it? Have you ever forgotten the word 'walk' or 'train'? Watching me try to mime getting on a train because I couldn't remember the word for "the thing that's on the tracks and chugs" is not something you'd quickly forget... but I would! We call it brain fog because it makes us feel a little less stupid if you give it a name.
Sore throat/glands
I've tonsillitis quite a lot for a 20 year old (even before this) so now when I wake up with a sore throat I have to decide whether this is just my life now or whether I have an actual infection. It's not a fun game.
Dizziness and heart palpitations
For about the last five years I've had a low blood pressure, which means I faint kind of a lot. So what's a little more dizziness added to the mix?
Severity of symptoms
The severity of ME/CFS varies from person to person, with some people able to live a next-to-normal life, with no noticeable changes to their daily activities. All the way to the people who spend the majority of their time bed bound.
I would say I fall somewhere in the middle. I have "flares" (a name used to describe periods of times where symptoms worsen) which leave me in bed/on the sofa for a few days (maybe a week or two if it's particularly bad) but generally I can go out and do normal things. Just not too much in one go, and nothing that requires a huge amount of physical strength.
Diagnosis
You've probably guessed by now but there is no one test for ME/CFS. This is because we are yet to discover a marker for CFS that we can test for in blood, urine or cerebrospinal fluid (CSF - basically brain juice). Instead a doctor is given guidelines to help diagnose ME, and often (or at least for me) you have to see an ME/CFS specialist to confirm your diagnosis.
When diagnosing you with ME, a doctor must be sure that you do not have another condition causing your symptoms. In order to do this, they will test you for things like anaemia and thyroid conditions. Due to them having to rule out other conditions before an official diagnosis can be given, it usually takes quite some time. For me, it was about 9 months before I could be referred to a specialist, and a further 3 months before I had the appointment. So although it was pretty much determined that I had ME, it took approximately a year to be officially diagnosed.
The guidelines for diagnosing ME/CFS are:
Extreme, unexplained tiredness that lasts a long time (usually over 4 months before it can be considered chronic), or keeps coming back.
Extreme tiredness that stops you from doing things you used to.
Extreme tiredness that gets worse after activity and exercise.
You must also display some of the following symptoms:
Problems sleeping
Muscle or joint pain
Headaches
Sore throat/glands
Cognitive problems
Dizziness/nausea
Flu-like symptoms
Fast/irregular heartbeats (palpitations)
Treatment
Unfortunately, there is no cure for ME/CFS currenlty. There is also no medication to relieve the majority of the symptoms (at least not medications that can be recommended for use on a daily basis). Instead, most people with a diagnosis of ME work to manage their symptoms with the help of cognitive behavioural therapy (CBT) and graded exercise therapy (GET).
Prognosis
This is different for everyone. Most people with ME/CFS experience "flares" where they feel much worse, and then improve. This usually then plateaus and the person remains at limited functionality.
Some people do get worse, sometimes severely so. Recovering is possible though, despite how rare it is for a person to make a full recovery. It seems the younger you are when diagnosed with ME the more likely it is that you'll recover.
So now you finally know what the heck I'm talking about when I say ME/CFS!
For more information visit the NHS website https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
Virtual hugs,
Charlotte. X
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