Patient perspective series: My experience of chronic fatigue syndrome – Diagnosis

Jonathan Davis

HAVING read a lot of other peoples’ experiences it seems clear that most of us have very different experiences in getting an accurate diagnosis. I think it is important to share our experiences so we don’t feel alienated or alone. Let’s call it as it is; to feel terrible in the face all medical evidence saying that you should be fine is frightening, it is, if not terrifying. I’m sure I am not alone when I say that, at points, I questioned my own sanity. Reading the experiences of others made me realise that I was not a freak or unique in what I was going through and this is why I want to share my experiences.

In March 2016 I went off work with what I thought was just a bad chest infection, within a few days I was hospitalised with chest pains and subsequently diagnosed with pericarditis. This continued for about a year and I made slow progress with the help of my GP who was brilliant. Throughout this time I’d had spells of feeling just awful: severe aches and pains, flu-like symptoms, unbelievable fatigue and a host of other issues. I returned to my GP on each occasion who prescribed different or increased dosages of pain relief. Eventually, the symptoms would subside and I was left with just the underlying chest pain.

I suffered a relapse the following December and was admitted to hospital for 5 days for what was thought to be a cardiac issue. However, I wasn’t seen by a Cardiologist which seemed a bit odd and counterproductive to be honest.

I was discharged to manage whatever was wrong with me with support from my local medical practice. This was far from ideal and I was getting desperate. I took the decision to see a Cardiologist privately who was excellent. He listened to me, gave me a thorough examination and diagnosed me with costochondritis which is infection/inflammation in the cartilage between my ribs and sternum. This condition, though painful, is benign and I was advised to get back to work and resume exercise as soon as I can. I don’t mind telling you I was delighted.

Over the coming weeks and months, I did more and more and built up my fitness to a reasonable level. Work was very supportive and I started back on a phased return in a position that had been held open for me which was really decent of them.

As time went on through those spells of unparalleled fatigue, severe pain and flu-like symptoms increased in frequency and length and after a while, I felt constantly and consistently awful! I could barely manage the drive to work let alone actually achieve anything while I was there. I could not understand how I could sleep for 10 to 12 hours a night and still be utterly exhausted. My GP was absolutely first class and raised M.E. as a possible diagnosis at an early stage. She did innumerable blood tests on me to rule out all manner of illnesses and diseases including an HIV test because of possible exposure to my job. All of the tests were negative or normal which whilst being good news was also deeply frustrating. I remember wishing that I had diabetes or cancer (how bad is that?) so at least I could be treated.

I didn’t give much credence to the possibility of having M.E. at first but as soon as I read the signs and symptoms I knew immediately that was what was wrong. It seemed to fit all of my symptoms and, quite frankly, there was no other explanation.

After a few months, my GP had exhausted all her options so she referred me to a Consultant who I met within a few weeks. He, too, was brilliant. He listened to me as I explained my symptoms and my history, he was patient while I forgot what I was talking about due to this horrible cognitive fog we get and he gave me a physical examination. He concluded that I indeed did have M.E. and offered me support and information by means of websites, social media and books as well as dietary advice to help me live more comfortably.

Although a diagnosis of M.E. is never good I felt such relief that I knew what I was dealing with and that I could get on with rebuilding and adapt my life rather than spend so much energy on wondering what on earth was wrong with me.

I think everyone experiences M.E. differently. Each of the symptoms affects us differently. For me, the fatigue, the pain and the cognitive impairment are the hardest to endure. Resting in pain is impossible, trying to stay active whilst fatigued is almost impossible and keeping myself occupied or distracted is so, so difficult with an attention span of less than a minute. For some reason, maybe others have this too, reading makes me feel lightheaded and nauseous. Anything more than a few sentences makes me feel sea-sick.

I was referred to a physiotherapist for some GET but I am nowhere near that stage yet. I used to do a lot of running, cycling and cross-fit so I know what it feels like when you have bitten off far more than you can chew physically and you hit “the wall”. Now, though, a slow walk a few minutes in length leaves me lightheaded, nauseous, my legs shaking, my hips, chest, head, and hands and feet all aching to the point that I can’t stand it.

I find staying still for a while helps my symptoms but not for too long otherwise I stiffen up. My diet has seen some fairly dramatic changes in the last while which I plan on talking about more later on. Frustration is a big problem for me as it seems to exacerbate my symptoms so I do all I can to stay calm, relaxed, not let misunderstandings or others not comprehending what CFS does to a person get me down.

I simply haven’t got the energy.