Chronic Fatigue Syndrome (CFS) can also be referred to as ME, which stands for myalgic encephalomyelitis, however there is wide debate over the correct term to use so many people refer to the condition as CFS/ME.
CFS/ME is a long-term illness which has a wide range of symptoms, however the most commonly found symptom is extreme tiredness. Although CFS/ME can affect anyone, it more commonly affects females with the condition developing between her mid-20s and mid-40s.
Symptoms of CFS/ME
The symptoms of CFS/ME are often very similar to symptoms of other illnesses, so it is important that if symptoms persist, you should make an appointment you’re your GP. Although the mains symptoms of CFS/ME are usually extreme tiredness and general feelings of being unwell, other symptoms a person can experience include:
- Dizziness or sickness
- Sleep problems
- Flu-like symptoms
- Sore throat or sore glands that aren’t swollen
- Muscle or joint pain
- Irregular heartbeat
- Poor concentration and memory
Symptoms, and the severity of them, can vary from one day to the next, and often vary within a day.
Causes of CFS/ME
The exact cause of CFS/ME is unknown, however there are a number of suggestions, including:
- Viral infections, such as glandular fever
- Bacterial infections, such as pneumonia
- Problems with the immune system
- Hormone imbalance
- Mental health problems, such as stress, depression and emotional trauma
- Your genes – CFS/ME seems to be more common in some families
Diagnosing CFS/ME is based on the symptoms you’re experiencing and by ruling out any other conditions that could be causing your symptoms; there isn’t a specific test for the condition. To rule out other conditions, your GP will ask about the symptoms you’re experiencing and your medical history; they may also suggest you have blood and urine tests.
A diagnosis of CFS/ME may be considered if you don’t get better as quickly as expected, as many of the symptoms of CFS/ME are similar to those of many other common illnesses that would usually get better on their own.
There are a number of treatments for CFS/ME, and the treatment you receive will be dependent on how CFS/ME is affecting you. Whichever treatment you receive, the aim will be to relieve the symptoms you experience. However, not all treatments are effective for everyone, and those treatments which have helped reduce particular symptoms in some people have been proven to be ineffective for others. The majority of people agree that adequate rest when symptoms appear to be more apparent encourages the most improvement.
Treatments can include:
- Cognitive behavioural therapy (CBT)
- A structured exercise programme called graded exercise therapy (GET)
- Medication to control pain, nausea and sleeping problems
Over time, the majority of people with CFS/ME will notice a reduction in symptoms, if not being entirely symptom-free, although some people do not make a full recovery. You may also notice that there are times when your symptoms worsen and improve, dependent on factors such as lifestyle, age and current day-to-day activities.
Living with CFS/ME
The symptoms of CFS/ME can make day-to-day activities hard, due to the extreme tiredness and other physical symptoms that you may experience, therefore living with CFS/ME can be challenging and difficult at times. Not only can you be affected physically, but your mental and emotional wellbeing can also be directly affected, which in turn can have a negative effect on your self-esteem.
Some people find it useful to talk to other people living with CFS/ME, and understanding more about the condition can be helpful; the links on this page will provide more information about CFS/ME.Visit The ME Association – “What is ME/CFS?” Visit the NHS website – “What is Chronic Fatigue Syndrome?”
Seeing as I wasn’t a city banker, driving a VW golf whilst talking on a mobile phone the size and weight of a brick, I really couldn’t relate to the term ‘yuppie flu’.
Thankfully, that term isn’t used anymore and we know it today as Chronic Fatigue Syndrome or M.E, which is quite a mouthful, so CFS/M.E is the abbreviation commonly used. For those of us curious about the meaning of the term M.E, here’s the technical bit. M.E stands for myalgic encephalomyelitis, which is derived from the following – the word myalgic means muscle pain or tenderness (‘my’ is a shortened form of ‘myo’, which means muscle, ‘Algic’ is the adjective form of ‘algia’, which means pain). The word encephalomyelitis means inflammation of the central nervous system, that is, the brain and spinal cord (‘encephalo’ refers to the brain, ‘myel’ means spinal cord and ‘medula oblongata’. ‘Itis’ means inflammation). Ok, now we’ve got that out of the way, I’d like to tell you my story.
I was born in 1977 and was first diagnosed in 1995 after 3 years of symptoms. These symptoms began in the summer of 1992 and manifested following a very stressful time, namely the death of my beloved Nanna in the March and my mock exams in the May.
At first, especially because of my symptoms and my age, in 1992 my GP diagnosed me with glandular fever. After a few months had gone by he doubted that diagnosis and carried out the test, which was to look for Epstein-Barr, which is the virus that causes glandular fever. The test was negative, so he concluded it must have cleared and that I now had developed post-viral fatigue syndrome (PVFS). I continued to struggle into my first job as an Office Junior in a solicitor’s office. They had 2 offices at opposite ends of the town and my main task was to walk between the two with the internal mail. This was exhausting for me because of my symptoms. The other Office Junior at the other branch was sacked, so I took on double the workload. I was often isolated in a back room, the post room which was not good for a social person like me. This deterioration in health led to spending the whole summer bed ridden; I remember it well because I missed the whole of Wimbledon (which I love to watch every year). I did have a portable TV in my room but couldn’t stay awake for long.
To give you an idea of the kind of person I am, I’d like to tell you a few things about myself. I’m a perfectionist, if I make one mistake on a piece of paper, I can’t just cross it out, I have to start over again – even if the mistake is the last word on the page. I have often been described as having O.C.D (so what if I have an A-Z CD collection, square up my ruler/pen/notebook and categorise tinned food!).
I have been interested in and very good at sports, right from junior school. I was the captain of the netball team and that was repeated at senior school, in fact I captained every girls’ team and was the first and only girl to be allowed on the football team. The P.E quote in my Record of Achievement states that I was an excellent sportswoman and always gave 110%, which I was and still am extremely proud of.
There’s a reason I’m telling you this, it’s because I want to emphasise the devastation I have felt, and very much still feel, at not being physically able to participate competitively in high intensity sports, such as squash, football and netball. Sport was always an outlet for my aggression, without it I have internalised so much anger. I manage to train now and again with a local netball team but man, do I suffer afterwards. By the next session, I still haven’t recovered from the last. I often get injured and spend weeks out at a time. The next day, I can hardly move and ache literally from head to toe, even my fingers hurt.
Specifically, I get joint pain, stiffness, swelling, redness and heat. I have the pressure point indicators for Fibromyalgia (FM), therefore I have a diagnosis of that too. There’s debate that as CFS/ME and FM crossover so much and there is commonly a co-existence, that maybe they are the same thing. Research is still very much needed, especially as there are no diagnostic tests for CFS/ME. Blood tests are done routinely to rule out other illnesses, it’s a process of elimination. If I never have another blood test, it will be too soon! I felt like a pin cushion and guinea pig in those early days. It’s hard to describe the frustration and disappointment every time those results came back negative. I longed for them to show hypothyroidism, lupus, Lyme disease or a virus – anything I could use an explanation. There are times I thought I was going mad. The term psychosomatic is something I have heard over the years. With my limited understanding I used to think that meant I was a hypochondriac and that my brain was somehow inventing things. Later, I came to understand that it meant my mental health was affecting my physical health, that there was a knock-on effect. I have mixed feelings on this to be honest with you. There are times I feel that they are linked – following counselling, therapy and DBT I have thought that my physical symptoms have improved. Yet, other days I can feel on top of the world and still be in pain or exhausted. So, it’s very difficult to give a definitive answer. Maybe I would say that the mental wellness has improved the CFS/ME in an overall sense and reduced the intensity of symptoms, i.e. long-term. But on a day-to-day basis it fluctuates. What I’m trying to say is working on my mental wellbeing has helped but by no means has it ‘cured’ the physical side.
Other ways it has impacted me include inability to concentrate for long periods. I have loved to read since learning to read at 4 years of age, before starting school. Now I struggle to read 5-10 pages at a time, so novels sit around a long time. Sometimes, I don’t even go back to them because I lose interest, never really ‘getting into a book’, which I find really annoying. This extends to being able to study, write and listen. Some days I feel like my brain just isn’t working in a cognitive sense, many call it ‘brain fog’.
The ‘fatigue’ part doesn’t even describe the level of exhaustion I can feel. You’ve probably heard sufferers say ‘it’s like walking through treacle’, I’ve always used the analogy, ‘like wading through wet cement’. When people flippantly say “Yeah, I get tired too” I want to say to them, “you have NO idea what tired is”. There are times when I have walked to the summit of Cat Bells, Helvellyn and even the highest, Scafell Pike. Yet, there are times I’ve set off down the path and turned back after 100m. That’s how polar opposite I can feel. Naturally, that is so confusing and frustrating (notice there’s a lot of frustration going on), I ask myself, “why can I do it one time and not another?”, as it doesn’t make sense to me or the people around me.
The fatigue is so central, that people may overlook the other effects, which include; clumsiness, poor memory, IBS (irritable bowel syndrome), bladder problems, insomnia, over-sleeping, unrefreshing sleep, night sweats, sensitivity to noise and smells, swollen/sore glands, swollen/tender lymph nodes, nausea, headaches, susceptibility to infections/flu/viruses, poor circulation, poor temperature regulation, depression, mood swings, painful periods, dizziness, balance problems, carpal tunnel syndrome, pins and needles/numbness/tingling, GORD/acid reflux/ indigestion, skin allergies. This isn’t just a list of symptoms; this is a list of my symptoms. At least 10 of these that are co-existent, it’s like your whole system is dysfunctional. I would like to say that I’ve gone from having symptoms constantly to having periods of relapse, these might last for several months, conversely so can the relapses. When I relapse now, I do the best I can manage each day and keep in mind that it will pass.
I am sorry if I have painted a bleak picture, but rather I have tried to paint a realistic, honest one. Learn and work with your limitations, beginning with acceptance. Self-care and management are vital. There is hope. I have learned (and am still learning) to have realistic expectations and don’t put too much pressure on yourself. Be kind to yourself.
Finally, there are some credible sites I have found very useful, here are the links: