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Mar 112015

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How to Deal with a Diagnosis of CFS

I will be forever grateful to the doctor who actually diagnosed my condition and got to the bottom of what was happening during such a confusing time for both my family and myself. When he gave us his opinion, something inside me clicked. Having initially thought it was leukaemia (probably due to low white blood cell count), he then examined the bloods again and altered his decision.

I think if you can find a doctor who is sympathetic towards CFS/ME, let alone diagnoses it, you’re doing very well. Every doctor I’ve met since then, whether for CFS-related things or not, with the exception of one, has dismissed my condition and immediately demanded that I had more blood tests. I made the mistake of having more tests a few years ago, even though I knew for a fact my bloods would be absolutely fine. Cue my doctor telling me that I’d probably get over it in a week or so, and me feeling just as confused, tired and down as when I’d first been diagnosed.

Don’t get me wrong, I know there are some amazing doctors and specialists out there who are experts in their field and work incredibly hard to help hundreds of people recover. I’m not here to badmouth the medical profession. I lived in a tiny village in England, so my access to these people was limited. I therefore had to do something about my condition myself.

At the time of writing, there is no test for CFS. Basically, the doctors have to rule out everything before coming to that conclusion…and I mean, everything. I had ECGs, brain scans, chest x-rays, you name it. Nothing, nada, zilch. It was quite a scary time for everyone, but I think I was so tired from being dragged from appointment to appointment that I could barely even think about what was happening. The diagnosis didn’t really alter what was happening in my everyday life, and because there was no treatment as such, everything just went back to the way if was. My parents didn’t really know what to do, so just tried to make me eat and get me out and about. I was prescribed anti-depressants and sleeping tablets, but held on to the prescription for months and never used it. Something kept telling me that this wasn’t the answer for me. My Dad persuaded me to go on the anti-depressants- I lasted a month, felt the same, so came off them.

The truth about being diagnosed with CFS is that even though you now have a label and something that you can attribute your symptoms to, you still feel stuck. The key is trying different things, which unfortunately, takes quite a while. I think it took me about 3 years to really get a handle on thing. You can ask another doctor for a second opinion, you can treat symptoms individually (ie. headaches) and visit the doctor this way, you can explore alternative therapies, you can read books or you can alter your diet.

I hope in this blog I will be able to show you some things that have worked for me. I have decided however to add a disclaimer to the website, because even though these methods worked for me, they may not work for you. For example, I’ve always been vegetarian (since the age of 6- it caused quite a stir at primary school!, so meat does not play a part in my diet. However, you might need this for your recovery, and you should be open to including certain things in your diet.

I have every faith in your healing and your body’s ability to heal. It is up to you to know it and believe it.


Katie xx

For more on doctors and CFS diagnosis, click here.

For more on how healthy eating is only part of the battle(!), click here.

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