My Fight to Be Diagnosed With Chronic Fatigue Syndrome

It’s been such a long time since I last posted! I can only apologise. A lot has happened this year including lots of amazing things, but the one negative constant has been my health.

As usual, my health has never been great, and it has not been helped by the pandemic, leading to lots of isolation and anxiety as a chronically ill person over the possibility of catching something that might make me so much worse.

For the last three years, my fatigue has gone from pretty average to absolute hell. This year has been the worst with fatigue and I have visited different doctors over the last 2 years trying to pin down a diagnosis on top of my fibromyalgia.

Fibromyalgia includes fatigue but the main symptom is pain. This used to be me. However, now my fatigue vastly outweighs the pain 99% of the time. I still get pain flare ups but they are often at different times to the fatigue, leading me to believe I have CFS/ME.

Doctors have brushed it off stating that it’s just my fibromyalgia and that there was nothing that could be done to help. I never used to take sick days and now I’ve taken several over a couple of months and am currently discussing options with my employer to work more from home so I take less sick days. It can’t just be my fibromyalgia anymore.

I moved in with my partner in July (so happy) and he’s been wonderful taking care of me and supporting me, doing all the housework and making sure I’m OK. He’s just the best! But I can’t help feel guilty about how much he does and how little I do. I used to be able to do so much more but my health really has deteriorated.

Thanks to moving house I needed to move doctors and I have lucked out finally, after years of rubbish, rude doctors who never took me seriously. My first phone appointment I was diagnosed with Chronic Fatigue Syndrome in 5 minutes after the doctor looked over all my notes.

More recently I’ve asked to be referred to a chronic fatigue clinic which was accepted straight away so I’m awaiting confirmation on dates as there is a 4 month waiting list, but I’m on the list, which is all that matters right now.

I know we are not doctors, but we know our bodies and we know when something isn’t right. Sometimes it just takes one good doctor for things to change.

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