These days, well if I’m honest, past few months, my brain has been malfunctioning.
Those of you with ME know it as “brain fog” or with fibromyalgia “fibrofog”. For those of you who don’t know what it is for me it’s: –
• Poor memory.
• Difficulty learning new things.
• Poor mental stamina and concentration – difficulty reading a book, following a film story, following a line of argument or discussion/conversation.
• Difficulty finding the right word.
• Thinking one word, but saying another.
• Saying things out loud when you think you’ve just thought it and vice-versa.
• Clumsiness when handling things, just letting go and dropping things.
It’s been creeping up on me, initially such small differences that no one noticed but gradually it got worse until it reached the point when The Dave had a conversation with me about the possibility of dementia being the cause. He had been silently worrying for ages and wanted me to seek medical attention for tests and diagnosis of a cause.
Nervously I visited my GP who was fabulous, she took a full history and asked me my symptoms, duration etc. ~ thankfully I had compiled a list prior to the appointment with Dave. She sent me away with blood forms testing for just about everything under the sun. A couple of weeks later I returned to find other than low vitamin D all my tests were within normal range. My doctor strongly felt I had ME ~ not dementia. So, with this provisional diagnosis she referred me to my local ME clinic for official diagnosis.
My clinic appointment lasted 2 hours, Dave came with me & helped me answer all the questions as my brain became very foggy. I was also given a full physical examination too. I now have an official ME diagnosis NOT dementia ~ phew I think!
Every day I struggle finding words, every day I use the wrong words in conversation without realizing unless it is pointed out to me. I worry about saying something out loud when I shouldn’t ~ it could be very awkward. I find myself several times a day in a room and not remembering why. I can’t read my books because I simply can’t take in what I read, resulting in reading the same thing over and over ~ which as an avid reader & bookworm is hugely frustrating. During conversations I forget what I’m saying mid-sentence which is highly embarrassing. Most of our crockery is chipped because of my clumsiness and the number of glasses reduced too. I burn or cut myself when cooking due to lack of concentration and spill just about everything. To be honest I ought to come with a safety warning these days!
If you aren’t sure what ME is then this is a good explanation from The National ME Centre…
“What is ME?
ME is an illness. ME stands for Myalgic Encephalomyelitis – which is a bit of a mouthful, but basically means muscle (myalgic) and head (encepalitic) symptoms. ME is also known as Post Viral Fatigue Syndrome (PVFS) or Chronic Fatigue Syndrome (CFS), because it often follows on from a viral infection. The disease is known by other names elsewhere in the world; in the US for instance it is called Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS).
What are the symptoms of ME?
As its name suggests, ME mainly affects the muscles and the head; muscle symptoms include severe fatigue on exercise, muscle pain and spasms. It is important to appreciate that the kind of fatigue experienced by many ME sufferers is quite different from the straightforward ‘tiredness’ most normal people have experienced. ME sufferers have likened the fatigue to ‘having their plug pulled out’ or being totally drained of energy. Unlike many other illnesses, exercise may make things worse. Any physical activity – even walking up or down stairs may put some ME sufferers in bed for days or weeks, and even cause a major relapse.
Sometimes you will see ME sufferers apparently able to do quite normal things physically yet complaining of terrible fatigue and muscle problems. What you haven’t seen it the price they pay afterwards for their physical exertion – perhaps days in bed recovering. Some sufferers have learnt how to ‘save up’ energy to enable them to do things, know exactly how much they can do and what price they are likely to have to pay afterwards. It is as though their muscles have a limited energy supply. When this runs out, the muscles stop functioning and need time to recharge.
The head symptoms experienced by ME sufferers include: headaches, dizziness, swimmy feelings and perhaps most difficult of all to handle, loss of concentration and short term memory. ME sufferers will often forget things you have just told them and will find it hard to take in new information especially if it’s complicated. These problems will tend to be worse the more exhausted the sufferer is and mental exertion as well as physical may be exhausting for people with ME.
These are not the only symptoms experienced in ME. Sufferers will often feel ‘ill all over’ and experience many flu like symptoms; nausea, shivering, fever and aching joints. They may feel cold very readily and generally over react to heat and cold. Some unfortunate sufferers may be in constant unremitting pain.
Digestive problems are common’ constipation or diarrhoea, gas bloating and bowel pain.
Depression and emotional problems are often a part of ME but it is important to realize that these are a symptom of the illness and not its cause. Some sufferers are very emotionally volatile and unpredictable, they may get angry or depressed and for no apparent reason, or even cry at the slightest upset. This may be due to the illness affecting the nervous system.”
So why am I having such issues with my brain misbehaving? ME affects every part of you ~ brain and body, as described above ~ but why the dementia like symptoms?
An article in Healthline says “A picture is emerging of CFS as an autoimmune disease that, like MS, has both physical and neurological symptoms. “This work further substantiates the reality of this profound pathology that’s happening in ME/CFS patients.”
I’ve found one explanation that makes sense to me via CFS Health “This is a very common symptom of M.E/CFS and Fibromyalgia. One of the reasons being that because we are a not in homeostasis (healing state) our body is under constant stress, trying its best to function. Quality of sleep is usually diminished; so therefore the body is not in a consistent circadian rhythm sleep. This causes the body and the brain to not completely restore and recover their functions, including memory, cognitive learning and development. As the body begins to become more tired, so does the brain. Disrupted sleep patterns will leave patients in a “daze” for long periods of time. Constant fatigue causes severe tiredness, and the brain shuts off quickly after becoming tired”.
How do I fix this is all I want to know, easier said than done! Basic advice is lots of rest, pacing, stay hydrated, eat properly and exclude any foods which may impact on your health (many ME sufferers also coincidentally have gluten sensitivity), reduce caffeine and alcohol consumption and where possible stressors.
So, if you meet me and I appear distracted and struggle with conversation or don’t quite make sense and I arrive late due to getting lost ~ now you know why, all I can say is please bear with.
Til next time