Coming to Terms with Chronic Fatigue Syndrome

“I’m telling you that you definitely fit the diagnostic criteria for CFS“, that really wasn’t what I was expecting to hear last week.

That’s because 7 years earlier I had a similar conversation telling me I definitely didn’t have CFS/ME. (Note: Chronic Fatigue Syndrome & Myalgic Encephalopathy can be used interchangeably.)

I left the hospital confused, I know I should believe the consultant over the psychologist from 7 years earlier, but both where CFS specialists. And after 7 years of telling myself it’s not CFS it’s hard to accept the opposing opinion.

Nobody Knows What Chronic Fatigue Syndrome is!

That’s the problem with CFS, it boils down to an opinion on whether or not you fit the criteria. There is no test and no real understanding of the illness. The more I digested this Consultants opinion, the more things I’d tried to fight became obvious symptoms of Chronic Fatigue Syndrome.

Then I started to get frustrated – Had this conversation happened all those years earlier, I might have beat this by now. The Doctor seemed confident that with Graded Exercise Therapy and lifestyle changes I could beat this in 2 – 3 years.

Two to three years seems like a long time, my life is in tatters. I have some how spun plates for a decade, they are beginning to hit the ground and now I have another 2 -3 years before I can even hope for a possible recovery!

I went to the shops after a couple of days milling around, wondering who was right. There is no harm in trying to make some changes myself. I bought Co Enzyme Q10 and L Carnitine after hastily reading some articles that attested to there usefulness in treating the illness. I took them, kind of hoping for an instant fix yet in the back of my mind knowing if that was the case they’d prescribe them as a quick fix!

Fast forward a week or so, not much has changed. I check the post daily to see if the Doctor has written to me. He tested my blood to rule out lupus. But I watch ‘House M.D.’ and know it’s never lupus!

I’m also waiting for an appointment referring me to his graded exercise treatment (GET) programme. Normally if it’s something simple I can do myself, I’m straight online trying to do it myself. But this time I feel like I just need  to wait, I need to understand what GET is before I jump in.

I’ve read hundreds of blog posts and Reddit entries on CFS/ME but there is so much conflicting information, It’s hard to know what to do! I’ve never been patient and in reality all I need right now is patience!

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11 Comments on Coming to Terms with Chronic Fatigue Syndrome

  1. This feels familiar… I’ve had several shorter bouts of post-viral fatigue over my life, then last year a crash into CFS (well, by elimination of everything else). It was disguised as B12-deficiency initially, but having read up about CFS since, one of the things it can cause is malabsorption, so….I guess CFS came first. Anyway. I haven’t seen the specialist yet, and I’m loathe to start altering my diet massively. I’ve done my own version of graded activity, which means I can now work full-time, albeit mostly from home. I am so impatient, I find it so hard not to fight it. I just want to be better and some days it’s hard to have faith that I will be. Bloody illness. Damn it and its mysterious causes! Oh, I don’t read too much online other than the odd scientific paper about, because there’s so much noise and its so individual to each person…

    • I went to a group session recently at a hospital in Liverpool. It was a little bit frustrating really – but I think that is the nature of the illness. The basic summary of it is that the NHS and NICE guidelines recommend pacing, graded exercise therapy and Cognitive behavioural therapy. However then I see very credible organisations say GET can make people worse! Who do you believe?!

      I guess treating an illness that no one definitively understands is a difficult task!

      Have you tried any plant based diets or alternative therapies?

      • I’m waiting to hopefully be referred to the local NHS support group, and I’m expecting exactly what you got at yours. I’m veggie anyway, and I’m loathe to start tinkering with my diet without medical supervision. I’ve been having acupuncture, which I’d tentatively say has helped a little, although it’s hard to know when there is no real rhyme or reason to how I feel each day. The GET issue is a good one – I want to do more, but if your body just flatly isn’t producing enough energy then there is no resource for exercise and naturally you will feel worse! Which supports the mitochondrial argument. I’m hoping I’ll be offered the low-dose anti-depressants (shudder. Though if they were called Smarties I’d eat them right up) as other people I know found them massively helpful.

        • I’ve grown to be very negative when it comes to medical supervision but that’s down to bad experience! I’m considering trying an all plant based diet – but when your having a bad day having a quick sandwich or ordering the pizza can be the only thing you have the energy to do!!
          I’m not sure I like the idea of needles in my back! Sure I’d be happy putting them in someone else’s but not mine!!
          I didn’t now low does anti depressants was an option, makes you wonder how blurred the lines become between depression and CFS.

          • Some people do swear by a vegan diet for all sorts of things. Not sure I’ve got the discipline. Other people like clean eating, without anything processed. I’ve gone for the “move in with parents” option so my mum cooks nice healthy dinners. I still eat biscuits though!
            The anti-depressants are used to treat a range of disorders, not just depression. Like Viagra wasn’t invented for what it is known for! I’m not holding out massive hopes for the medical support, but I’ll try what they recommend unless it patently doesn’t work!

          • Now I’m intrigued – What was Viagra invented for?
            The biggest problem with veganism is that cheese is just to delicious!

          • I take it you mean alcohol? Yeah, I try to avoid drink or I end up with a 3 day hangover. The first day is always spent in bed barely able to move! Do you struggle?

          • that’s something I haven’t tried or been on the receiving end of either! Haha!
            Yeah, I mean alcohol. Glad it’s not just me. It knocks me out now. More than half a glass and I am really sleepy. It really annoys me!!

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