Have you ever felt tired? Of course you have, but usually after a good night sleep or two you feel rested and refreshed right? Well people who have Chronic Fatigue Syndrome, also known as ME/CFS experience no such relief; they wake up every morning feeling like they have run a marathon in their sleep.
The fatigue in extreme ME/CFS cases requires patients to be hospitalised and tube fed however in most cases the sufferer is either bed bound or house bound and tasks such as having a shower are a huge effort. In less severe cases the patient may be able to do light tasks around the home and maybe even go groceries shopping.
Tiredness and fatigue are only part of a larger collection of symptoms including headaches, nausea, orthostatic intolerance, food sensitivities, digestive disturbances, multiple chemical sensitivity, light and sound sensitivity and sinus problems to name a few. As you can imagine, life can be extremely challenging for those with ME/CFS! One of the hardest aspects of having the disease is that some people with it look normal and healthy, it is known as an “invisible illness” where the person is feeling terrible and struggling with life but because they don’t have any visible symptoms like a rash etc, they are often misunderstood and hear harsh comments that they are just “lazy”.
Whilst there are many different symptoms the signature symptom for people with chronic fatigue syndrome is the push crash cycle. The push crash cycle is where a patient may feel slightly better so they increse activity because it feels ok at the time, unfortunately they pay for this and they pay hard, this slight increase in activity may leave the patient bedbound for days or even weeks later, this is known as post exertion malaise. Because of this push crash cycle, many ME/CFS patients develop anxiety and stress around movement because they fear that moving around will only make them worse and this is one of the cruellest aspects of the condition.
The medical profession are a little bamboozled by ME/CFS because they have no form of specific test to diagnose it; there is no blood test, urine test or scan to confirm it yet. It is however recognised by the medical fraternity as a “neurological disorder” which provides comfort to patients as most doctors now understand that it is not a psychological disorder or “all in the patients head”.
There is no test for the disease and there is also no cure which is a very hard pill to swallow for those patients with the condition. The prognosis for chronic fatigue syndrome patients varies a lot, some patients may suffer for six months whilst others unfortunately never recover and a few get progressively worse over time. It appears that recovery favours those who are younger and also those who get diagnosed early and treatment early. Overall up to 80% of people recover however this does not usually mean that they have a full recovery to their pre ME/CFS state and whilst they can still perform a daily routine, they have to be more conscious of not over doing things and ensure they approach life taking things easier on their body.
Chronic Fatigue Syndrome is a confusing and extremely challenging life changing experience and the key to navigating your way out of it is accepting that life has changed for now and your number one priority is your health. Recovery stories all share a common theme where patients say that they “relaxed their way back to good health”. Taking the stress out of your life, finding a ME/CFS friendly doctor and pacing your activity accordingly are paramount to recovery.