In June this year I was diagnosed with what is called ME (Myalgic Encephalomyelitis) also referred to as CFS which is more commonly known as Chronic Fatigue Syndrome.
ME/CFS is a serious condition that can cause long-term illness and disability. It causes persistent fatigue and exhaustion that affects everyday life and doesn’t go away with sleep or rest. Currently there is no cure for ME. It’s estimated that around 250,000 people in the UK alone have ME.
It is often triggered by a viral infection that feels like you never got over it. It can follow a period of a lot of stress. Sometimes it is not clear what triggered it.
Some people are able to live a partially normal life but may, for example, only be able to work by taking extensive bedrest afterwards. Many quite severely affected patients might be able to spend a brief period out of the house and can appear perfectly healthy for that short time before their symptoms build and they are forced to rest. The most severely affected patients are confined to bed, unable to care for themselves.
The symptoms of ME can vary from person to person and in severity. Not all people experience the same symptoms and at the same time. ME/CFS is a unique experience to every individual. Some of the symptoms include:
This happens due to the physiological response to action or exercise in someone with ME, we face ‘payback’ or a ‘crash’ after exerting ourselves, and feel utterly terrible following any activity.
This includes muscle weakness, spasms/seizures, muscle twitches, loss of balance, clumsiness (poor muscle co-ordination), shaking/trembling, hypersensitivity to sound and light and alcohol intolerance.
Neurological and cognitive problems
As ME is a complex neurological disease, there’s a whole host of brain and central nervous system problems like ‘brain fog’, word finding difficulties, losing train of thought, dropping things frequently and clumsy balance.
People with ME also experience insomnia, hypersomnia, painsomnia (lack of sleep due to physical pain), non-restorative and unrefreshing sleep, altered sleep/wake patterns, sleep reversal and variations in sleepiness/energy throughout day.
These symptoms include general ill and flu-like symptoms, recurrent sore throats, tender lymph nodes and just being frequently unwell.
Frequent and persistent migraines and headaches, severe weakness in limbs, neuralgia (neuropathic nerve pain), generalised muscular pain, joint pain and heart palpitations.
This relates to anything to do with the nervous and endocrine systems and how they interact. For example: loss of thermostatic stability, poor temperature control, low/high grade fevers, loss of appetite, feeling too hot/cold, sweating, chills, weight changes and cold extremities.
This can include symptoms of dizziness, numbness, unpleasant tingling or prickling, tinnitus, temporary loss of hearing, lightheadedness and fainting/collapsing.
A high percentage of ME/CFS patients also suffer with fibromyalgia. Symptoms of this include; tender ‘trigger’ points, widespread pain throughout body, stabbing, aching and burning pain, bruising along with joint pain and stiffness.
People with ME/CFS often have difficulty with thinking and understanding, trouble finding or saying words, inability to keep track of things, short term memory problems and poor concentration.
For me I have and do experience a lot of these symptoms. Having ME has totally changed my life and stopped me from enjoying and doing the things I love. Although having ME has put my education on hold, separated me from my friends and family I have however made some new amazing and supportive friends and life would quite simply be rubbish without them so for that reason I’m blessed. Im also blessed with my amazing boyfriend who also has ME (around 80% recovered) and his family have been my rock these past few months. I couldn’t have managed without them and I can’t possibly thank them enough.
I am going to be doing another blog post to follow which will explain more about how ME/CFS has and is affecting me just to give you more of an insight into my daily life with ME.
I hope you have learnt something from this post and your awareness of ME is now greater than when you started. Please message me or leave me a comment if you have any questions.
Don’t forget to stay updated with my blog as I start out on this new and exciting adventure in the blogging world.