CFS stands for
Chronic Fatigue Syndrome
CFS is also known by some as ME (myalgic encephalomyelitis). It is a pretty varied condition that affects everyone who has it slightly differently. It has some common symptoms but even those seem to hit different individuals more strongly or be less of an issue.
The most common symptom (unsurprisingly) is the fatigue which results in people feeling extremely tired and generally unwell. Other symptoms can include (but aren’t limited to):
- Sleep problems
- Muscle or joint pain
- A sore throat or sore glands that are not swollen
- Problems thinking, remembering or concentrating
- Flu-like symptoms
- Feeling dizzy or sick
- Fast or irregular heartbeats (heart palpitations)
No test for cfs
CFS is a real bugger to diagnose as there is no test to confirm you have it. The only way to get a diagnosis is to quite literally rule out every other problem that could be causing any and all of your symptoms. Many of the more common issues that have similar symptoms tend to improve in their own time. Therefore, when your symptoms continue longer term and no other diagnosis can be found you can usually be referred to a specialist and they review your case, the tests and finally say “yeah, guess you qualify as having CFS then.”
CFS does not have
Yes, you read that right. There is no cure for CFS. In fact, there are no treatments for CFS itself. Instead the individual symptoms are addressed and treated accordingly depending on the issues they cause for the individual.
Common treatments for CFS include:
- Cognitive behavioural therapy (CBT).
- A structured exercise programme called graded exercise therapy (GET).
- This is viewed by many as a controversial treatment and many doctors and patients doubt the positive effect as exercise is known to exacerbate most symptoms. However currently it still remains recommended as a treatment by the NICE and therefore the NHS.
- Medicine to control pain, nausea and sleeping problems.
We dont currently know
What causes CFS
Currently CFS isn’t understood enough to know what actually causes it. However there are a variety of theories on triggers and factors that make you more likely to develop it:
- Viral infections, such as glandular fever.
- Bacterial infections, such as pneumonia.
- Problems with the immune system.
- A hormone imbalance.
- Mental health problems, such as stress and emotional trauma.
- Your genes – CFS/ME seems to be more common in some families.
My specialist advised me that his department and colleagues currently think that CFS occurs when the body believes it has a virus or illness to fight but there is nothing there. The flags that the body sends to tell itself you are no longer ill don’t get flown and so the body remains in “fight an illness” mode. This makes a lot of sense to me personally as the large majority of symptoms people experience with CFS are symptoms your body creates to more effectively kill infections.
For example, when we get ill with the flu, we often end up with a fever, headaches, muscle/joint pains etc. None of these symptoms are really caused by the virus, they are the body’s defense mechanism to make your body a hostile place for the virus so that you can kill it and get better.
My own CFS was triggered when I was 17 by glandular fever and has been with me ever since. For many years it was very manageable and something I never bothered to get diagnosed. Unfortunately a variety of stresses in a short space of time at the start of 2018 caused it to get much worse and I have been learning to adjust my behaviour to its limitations ever since.
My most common
My major symptoms are:
- The all encompassing fatigue
- Chronic headaches
- Brain fog
- An inability to properly regulate my body temperature
- Unexpectedly painful muscles/joints for no reason
However like most folks who have it I experience most of the wide array of CFS symptoms to some degree. Some come and go at random with no warning.
The fatigue is
not normal tiredness
The thing that most folks dont understand until they see someone with CFS hit a fatigue wall is that the exhaustion you get isnt just normal tiredness. The tiredness you experience after a week of bad sleep? That’s our every day. Thats how we wake up feeling on a good day. We learn to push through it and it becomes our normal. The fatigue is a completely different beast. It’s not just brain tiredness and an excess of melatonin. It’s your entire body. Every limb feels like a block of iron. Every movement requires conscious effort to force your body to follow through. Even the simplest tasks require energy. On a truely bad day I might have to choose between saving energy to make food or washing my hair because I quite literally will not be able to get my body to complete both tasks. If you’ve ever had really bad flu, I want you to think about the point where it was at its worst and you would struggle to get to the edge of the bed to get that glass of water because every movement was a marathon and so exhausting. That’s what CFS fatigue feels like.
brain fog just makes you feel
so damn stupid
The brain fog is very hard to describe but I’ll do my best. I know I’m an intelligent individual but when the brain fog hits it’s like watching my brain process information through a clouded window. I know I should be able to put two and two together but the easy path I always used before is gone and I’m stumbling in the dark. I struggle to hold a conversation because I cant process the information I’m being told as fast as its being spoken and concentrating on the current words means I cant also concentrate on remembering what they said before those words. I’ll then try to reply and get half way through a sentence and realise not only can I not properly recall what they said but in pausing to find the word I wanted I’ve forgotten what I was saying too. My friends are very good about prompting me to continue talking. They’ll repeat the last few words I said and give a quick summary of what we were saying. Sometimes I dont even realise I’ve stopped talking. I just stop mid sentence and I’m like a computer that’s blue screened or run out of RAM. I’m not even aware that I’m stuck in a frozen loop because I cant process any of the information to work it out.
When the brain fog is bad I’ve had quick ten minute supermarket trips take me an hour or two because I have to very slowly potter through my thoughts to work out what is in the trolley, what I needed, what I therefore still need to get and then work out where in the supermarket it lives. I’ve been playing board games with friends and had brain fog creep up part way through and just sat there trying to remember how to do some simple maths to work out what move to make but I cant retain enough numbers from my cards to add them together. The only metaphor I can think of right now is it’s the difference between an adult just picking up a knife and fork and eating their food is how my brain does thoughts normally and a toddler just learning to use a knife and fork and frankly they forget they were even eating because that crayon is a much nicer colour and maybe it would fit up my nostril and can someone else please cut this chicken up because I’m holding the knife upside down and I just flicked an entire forkful of peas at the wall.
Its just a headache but
it never goes away
The headaches arent complicated. It’s a headache. But, mine at least, is a bloody bad headache. The headaches (up until everything got worse and I got signed off work two years ago) are the only reason I ever used to call in sick. I’m pretty good at ignoring it most of the time now because I’m used to it. Even at it’s best its probably a 5/10 constant pain. Never goes. Average day it’s closer to 6.5. On a really bad day it’s an 8 and that’s the point at which I stop trying to function and take pain killers and wait it out. The only things more painful than my headaches when bad is the time I dislocated my elbow and the lumbar puncture I had when they were trying to diagnose the headaches. On top of the chronic tension headache I also get migraines which are super duper fun. No idea if they are caused by CFS or a seperate “fun” adventure and I’ll likely never know.
We like to refer to me as
My temperature regulation is one not everyone with CFS experiences and definitely not to the degree I seem to. Whilst my core stays warm almost always I require a lot more warmth than anyone else I know to keep my limbs and extremities warm. I cool down within a minute or so no matter how much I was over heating. I take blankets to most of my friends houses because normal room temperature is too cold for me when sat still. (For reference in my car I generally need to have the AC set to like 24 and I’ll still often have the heated seat on, though on a truly hot summer day I might lower it to 22 and turn off the seat.) Sitting still my body temperature plummets in my legs/arms and I’ve had many occasions where my feet or hands are quite literally colder than the room temperature (no it makes no sense to me either. I dont know how).
You have to learn how to
The most frustrating part about CFS is the symptoms can be triggered or made worse for a few days by overdoing it, but your body often takes 24 hours to realise you did so. Therefore, even on a good day you have to be careful to behave like it’s an average day so that you don’t then give yourself a week of bad days. This is known as pacing, ensuring that you learn your average limits and stick to them to not exacerbate your symptoms.
This makes exercise particularly difficult. When I was diagnosed the clinic specialists ran a two session course for people newly diagnosed to explain the condition and its symptoms, but also to help us with coping mechanisms and how to best self manage. One of the key things that caught my attention was doctors talking about going on walks and they are describing people gradually building up from managing a 5 minute walk to maybe, 6 months down the line, getting their body to the point of being able to do 10 minutes walk a day without negative consequences. Exercise is indescribably draining compared to how it used to be.
Everything I do I have to plan in advance; things like:
- What will I do if a fatigue wall hits when I’m out? How will I get home?
- What chore do I prioritise?
- Do I want clean clothes or clean me?
- Do I want nice food but a dirty kitchen?
I have to consider my temperature issues before leaving the house and make sure I’ve got the layers to stay warm… which means carrying more stuff which means the trip out is then more tiring, so do I instead risk getting cold and making myself feel more ill that way?
Since everyone who has CFS has different symptoms no two individuals are likely to have the same experience, the same exact issues or identical coping mechanisms. We all find our own little quirks and best ways to deal with the symptoms so while the broader picture may be similar, others would not describe their experience of CFS in the same way as me.
Remember that some
illnesses are invisible
There is no right or wrong answer to this. Always bear in mind that just because someone doesn’t look ill doesn’t mean they are healthy. Plenty of people experience chronic pain, fatigue or any other number of debilitating issues but appear completely fine at first glance. These hidden issues are known as an invisible illness and can be just as much of a disability as a missing limb or any other more visible problem.
We know our body and our limits and many of us have spent a lot of time learning everything we can: chances are we have done far more research on our health than you. We have tried all of the obvious common sense ideas and sorry, but we are not interested in healing crystals or alternative medicine. However, if you see a genuine research article, please link it, we might have missed it and it’s always interesting seeing progress because a lot of invisible conditions are massively under-researched and poorly understood.
If we have to cancel on events, don’t take it personally: we wanted to come as much as you wanted us to join you. Please don’t stop inviting us just because we so often have to say no. We really still want to be included and we will find a way to participate whenever our health allows it.