The Department of Health officially recognises ME/CFS to be a “debilitating and distressing condition”, classifying it as “a neurological condition of unknown origin”.
However it’s a combination of the unknown cause of the illness along with its symptoms which can be easily related to other conditions, that make it poorly understood by many health care practitioners. Some of which are still sceptical about the seriousness of the illness. This lack of knowledge in many cases will lead to a lengthy diagnosis which can be frustrating for the patient. That patient was me.
I was very lucky to have had a fantastic GP over the last few years, who has supported me throughout. But because CFS is a fairly complex condition, as I have come to truly understand through my research, I understand why it’s taken so many years for me to get to here.
As a long standing sufferer of what I am lead to currently believe is CFS, I wanted to really look into what it was all about. I have spent a lengthy amount of time researching the clinical data with the view to hopefully give anyone who may be suffering a clearer understanding of the issue.
CFS has no definitive cause, and as a result has no definitive cure. Recovery is all about understand your triggers and using management strategies to deal with your specific symptoms.
Cause and Key Symptoms of CFS
The cause is still relatively unknown, however there is belief that the following may be contributory factors:
▶ Virus – especially following Glandular Fever
▶ Hormonal imbalance
▶ Weakened immune system
Symptoms of people who suffer CFS vary significantly, but the research indicates 7 key symptoms:
1. Post Exertional Malaise – is the core symptom of CFS, in which a profound and disabling fatigue occurs following episodes of lengthened mental and/or physical activity. This fatigue can come on later that day, the following day or even later and last for up to a couple of weeks in severe cases.
2. Exercise induced muscle fatigue
3. Cognitive dysfunction – involves issues with short term memory, concentration and attention span
4. Pain – often muscular but can be rheumatic or neuropathic
5. Sleep disturbances - waking up feeling unrefreshed on a regular basis, as though you haven’t slept
6. On going Flu like malaise – regular sore throats , tender lymph glands and issues with temp control
7. Autonomic symptoms – such as light-headedness, feeling faint and spatial disorientation
Many people who know me will probably think its strange that I suffer with this considering how much exercise I love to do, and yes exercise can quite often be challenging or worsen my symptoms at times. However over the years the energising and uplifting effects I gained from it outweighed the negatives. The research encourages finding a balance between exercise and rest. In the early stages its advised to build up slowly but its down to each individual to find a balance point between enough and too much. This may take some time but once you start to realise you can exercise but be mindful of your symptoms, it starts to become easier
This certainly to me is a tricky subject. I have tried a lot of things but yet still struggle with a constant sleep wake cycle leaving me feeling unrefreshed. However there are lots of options which people have found successful. Avoid caffeine up to 6 hours before bed. Avoid a heavy meal just before sleep, but it’s encouraged to have a small amount of carbohydrates due to the release of serotonin, or dairy such as a milky drink due to it containing Tryptophan, a natural sleep inducer. Avoid sleeping in the afternoon, for people in general napping is now seen as advantageous but for those with CFS it can make sleeping later much harder. A period of rest or relaxation is encouraged instead. Sleep hygiene is a big topic at the moment, this refers to keeping the bedroom lighting, temperature and environment that which will encourage relaxation, try and remove all technology and avoid for the last hour before bed. Also aim to get into a routine for going to sleep and waking up to get your body’s natural rhythm in better sync. Having a bath has also shown to helps the body temperature rise and then fall, to also induce sleep.
Cognitive Behavioural Therapy
This is used to help people manage their symptoms such as fatigue, pain, depression or sleep. I have recently been offered this in order to manage my sleep as a means of getting on top of it to avoid the medicated route, so I have not yet experienced this directly. I have however experience counselling that I did a few years back, to cope with a stage of depression and anxiety and this absolutely changed my life, so would recommend it to anyone unsure of where to go next.
Orthostatic Intolerance (dizziness/being light headed)
Keep hydrated, avoid too much salt, avoid overheated rooms, move regularly to help with circulation
Diet and Nutrition
Maintain a balanced diet with complex carbohydrates, and small but regular meals to help stabilise blood sugar. Vitamin D has been shown to be beneficial through winter months and for pregnant women. This can be sourced from oily fish, fortified breakfast cereals or supplements if required. Regular fluid intake is also important because all the cells in our body require water to function, without it energy, digestion, concentration and so on get affected
Please note I am not a doctor, I am just someone who has experienced the journey and spent time desperate to find a solution. I am hoping that some of my work looking into my own difficulties may help others suffering too. Most of my research has come thanks to a document produced by the ME Association.If you want to find out more information head to their website.