Can CFS get worse ?

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I've had CFS for about three years now but just lately I've got so very exhausted, worse than normal, which is bad enough. But the specialist I saw said It does not get worse!!! Anyone got worse??

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  • Posted

    Some specialist!! Of course it goes through fluctuations. It was far worse for me last year due to added stress and endocrine problems all stemming from a brain haem 12 years ago. Did the "specialist" recommend further tests? If not then why not? You could have any underlying cause. At the present time I'm receiving homeopathy for my extreme variations of cfs. Her name is Mary Goldsmith and she specialises in cfs. I prefer to believe in it myself as I find it just takes the edge off my symptoms but is obviously not a cure. I'll keep searching for one though. 

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  • Posted

    Mine varies dramatically.. at times im bed ridden and can hardly do anything... then it improves over 18 months and i can live a restricted but semi normal life. Relapses are usually caused via virus of some kind or long period of stress, but to be honest any ilness can trigger a relapse, but that does not mean you will stay that way.
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    • Posted

      Littleme,

      Have you observed relapses to have personally occurred after a virus? If so can you recall what virus this was?

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    • Posted

      Hi i have had CFS for 29 years and its always relapsed after a virus of some kind. My CFS was caused by Glandular Fever/Mono which i contracted at the age of 20, it did not make me too ill at the time , but within 10 days i ended up in hospital on a heart ward with all sorts of weird issues .  It has since come to light that this was the start of a condition called Hyper Pots. Pots in general is very Common with CFS.. my CFS chronic symptoms did not come on overnight . They gradually got worse over the years.  By the time i had my second child at the age of 24 ny CFS had become chronic.   Because my initial issues where caused by the Glandular fever virus it makes you susceptible to relapse after any viral infection. This happens because when your resistance is low due to a virus, it gives the glandular fever virus the chance to reactivate and cause another crash.  I seem to go years in between the chronic relapses... and have minor relapses in between .  i have read loads on CFS and Pots and both have similar issues and triggers. Depending on what caused your initial CFS will depend on how a relapse will occur. If it was caused by an accident/ stressful operation etc then stress of any kind will likely be your trigger. Same as if your issues where caused by a virus of some kind.. that that will be a trigger .  Flu seems to be the worse offender for many people and is why flu jabs should not be given to CFS patients at any time. Our immune systems do not work normally so we are more prone to all the issues that most people get over in no time.

      With me the Flu has always been my trigger... but also prolonged periods of stress plays a huge part in how and when i will relapse. The 2 together will cause a relapse every time. I have had 5 major relapses in 28 years.  All have left me pretty bed bound and at best housebound and struggling to function with basic day to day living.

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  • Posted

    what tosh,, know so called  genuine specialist would or should ever say that,,, 😡😡 i have had it for 15 years now and its been like a roller coaster, with massive ups & downs, so yes it does get worse & worse & worse,, but it does also get better if and when you are luky enuff,, do not take that fools opinion and get further tests etc done...& good luk..

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  • Posted

    Indeed it ebbs and flows, even goes and comes. I spent a full y months or a bit longer symptom free from first week of August til a bit after Valentine's day when it returned. I was in the same state as I have been during its "visitations" until sometime in March. Since then I have been just one stage up from being bedridden.

    I have had CVS since Aug/Sept 2007.

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  • Posted

    Thank you all very much for your replies. Yes started after a nasty virus. I'm not bedridden but have been unable to go out, because of the exhaustion and pain. Wishing you all a better day, week, month with your health. :-) :-)

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