Struggling to get the right diagnosis

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Hi I'm 24 and I believe I have had cfs since around the age of 11 but I've seen so many gp's over the years and not one of them believe's its a real condition I've been treated like I'm crazy and a waste of time they finally diagnosed with fibromyalgia because I kept going back at the age of 22 and even though they're similar I don't believe I have it they have refused to refure me to a specialist and I don't know what else I can do to get the right diognosis has anyone else been through anything similar and manged to get the right diognosis eventually who could give me some advice please

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  • Posted

    I have been feeling ill and becoming sick fairly easy over the past 3 years. It wasn't until the last 1 year that my symptoms became very prominent and I noticed that they would either go away, or come back.  I'm now 23 years of age. 

    Three weeks ago I was so sick, I was battling with some sort of infection so I thought and it wouldn't go away, I wouldn't eat or drink and I ended up in the Emergency department dehydrated, bed ridden and lethargic. It wasn't until the hospital did all the tests they could do until they diagnosed me with Chronic Fatigue Syndrome... 

    I'm sure you want answers, and I did too. But even being diagnosed with it, I'm still looking for answers and don't wish to believe that I hate it. Because It feels like I can't make it better. 

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  • Posted

    It's sad to hear that you fell ill so young. There's a lot of problems with the way that the UK approaches CFS, and it's possible that you might even be better off with an inappropriate diagnosis of fibromyalgia. Have you read anything about the UK's PACE trial? In the New York Times there was 'Getting It Wrong on Chronic Fatigue Syndrome', while The Independent recently had 'Time for Unrest: Why patients with ME are demanding justice?'. Understanding some of the issues in this area might help you understand the way that you are treated. Best wishes.

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  • Posted

    Hey Chloe. I am also from the UK and had a similar experience. I became ill when I was 12 and was diagnosed with Fibromyalgia at 21 and was finally sent to a specialist the following year and diagnosed with CFS as well. The reason my GP sent me to a specialist is because he'd finally had enough of me continuing to return with different symptoms after the diagnosis of Fibromyalgia.

    While I know how frustrating it is. The diagnosis isn't the be all and end all though. From my experience the treatments for CFS and Fibromyalgia in the UK aren't any different nor is the long-term care. As Fidd explained there have been several reports, most noticably the PACE report, that have not helped the situation in the UK and our medical authority has (to my understanding) received several proverbial kicks from WHO to actually investigate anything and recognise it as a physiological condition.

    All I can suggest to you is that as symptoms present themselves take them to the GP. It's time consuming and you may become despondent at times. Get yourself a descent support network that you can vent to and other than when you have to try to focus on what you can do rather than what's going wrong so that you can keep your mood as high as possible.

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