My CFS/ME diagnosis story

I first started getting sick in May 2014. I thought it was IBS, some new food intolerance or something like that. But it didn’t let up, so I went to see my GP. I’d learnt from my coeliac disease experience that pretending I was ok when I wasn’t was a really bad idea. And I’d also learnt not to let doctors palm me off!

I was going through a really stressful time at work, there were big restructures underway and people were losing their jobs everywhere. I was on a secondment which I’d lost my passion for, but dreaded the prospect of going back to my substantive post. That environment was seriously bad for my mental health!

The doctors tried to tell me that maybe it was IBS brought on by the stress. That’s not unusual after all. But months later nothing had changed. I was exhausted from lack of sleep (I was up half the night in the bathroom most nights – TMI, sorry!!).

Then I discovered the right probiotics for me, and oregano oil capsules which apparently work a bit like a natural antibiotic. Within a couple of weeks my digestive health was sorted.

But the exhaustion wasn’t. Everything hurt all the time, I had constant headaches, being in the office with all the background noise and bright lights wasn’t helping. I was getting really confused by the simplest tasks and was going to bed pretty much as soon as I got in from work. My work was suffering too, it all just felt too overwhelming.

I got referred to a gastroenterologist to start with, so had all those lovely tests (!!) which all came back normal. So they were happy it wasn’t any form of inflammatory bowel disease causing my problems. Told me it was IBS and to avoid stress.

Then I had a positive blood test come back for anti-nuclear antibodies. There’s lupus in my family, so that was the next suspect and meant a referral to rheumatology this time. And more tests, all of which came back normal.

By this time everyone was talking about CFS, and I wasn’t well enough to work anymore and struggled to leave the house very much because my body was having none of it. When I did, I ended up feeling so much worse for days afterwards.

Eventually I saw the local CFS consultant, who was probably the least sympathetic of all the doctors I’ve seen. She didn’t do smiling or being friendly, which didn’t exactly put me at ease in her presence! After 18months of unknowns, negative tests and very real symptoms I got my official diagnosis of CFS/ME. At first I was relieved – I was glad we knew what it was. Less glad that it was a condition with so little known about it, and no real cures.

There’s so much advice out there, and just as much disagreement too, it’s impossible to know where to start. I was willing to try pretty much anything and decided I’d listen to all the advice, try things, and just see what worked for me. Very quickly I realised I was one of the lucky ones, my bad days were better than a lot of people’s good days – don’t get me wrong, I still felt terrible, felt sorry for myself sometimes, but I learnt that this horrible illness really can ruin people’s lives, and those people seem to be forgotten. I found the CFS/ME twitter community and some amazing, inspiring people with a wide variety of conditions, and learnt more from them than I did most of my doctors. I’ll always be grateful for those people and the support they gave me when I was at my worst. And now I’m back working again, I get to do the same for our fatigue network – one of several employee disability networks, focussed solely on supporting people with conditions where fatigue is a major issue. But that’s a story for another blog post another day!