Length of illness?

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Hi. I'm just curious to hear everyone's individual experiences with CFS/ME/Fibro. How long does the condition/ tend to be present? I know it massively varies from person to person. I ask because i have been faced with a new manager at work who clearly believes the condition is all in my head but she has also said she has done her own research and believes the condition/s can be cured very quickly? I;ve battled with my CFS/ME for nearly 10 years now so if there is some magical cure out there as my manager seems to think, i'd like to know about it! Thanks all smile

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  • Posted

    Hi, I don't know where in the world you are but there is no magic cure for CFS. There are things which have helped some people - to the point where they have been cured, in some cases - but equally, many people have had it for many years, tried everything and got nowhere. If there was a magic cure, there wouldn't still be ongoing research into it! Attitudes like your manager's do annoy me - God help her if she ever gets it. There is no "1 size fits all" cure for CFS. If only!

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  • Posted

    I don't believe there's any magical cure, however, there are some programs out there on the internet that claim you can be healed from CFS within as little as 6 months if you do the program. I believe that can be true, but I think it depends on a lot of factors. CFS has so many personal variables.  I'm 3 years into my latest recovery but my history shows that I probably had CFS all of my life and didn't know it. I never could work full time and whenever I became exhausted and unable to continue working my part time job I would quite, take about 3-6 months off until I recovered, and then I'd look for something else part time that was less demanding. I didn't get diagnosed until 3 years ago. My current recovery is taking longer than usual maybe because I have more factors involved. I'm older - 61, I worked too long at a job that wasn't right for me, I had a car accident and then caught a staph infection on my spine at the hospital, then lost my home and moved in with my parents. And menopause has really thrown a kink in everything!! So, recovery (while I still believe is possible) is taking longer this time. I've never had Fibro but I have hypoglycemia, and IBS. Some people also have POTS. So, you know, there's so many different "flavors" of CFS. And to top it off, it can take years just to figure what DOESN'T work because we so intuitively try to exercise more or ignore our bodies or try some kind of stimulant and we need to crash over and over again before we learn what works for us and what doesn't. It can be a long road and unless someone has it, they don't really know what it's like. Trying to "convince" people can be draining too. Take care of yourself the best you can.

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  • Posted

    So much ignorance out there about ME/CFS, it's staggering. And much of it is on the part of the medical profession, so it's not surprising that a lay person is uninformed. With someone like this, I think it's best to print out information from a reputable source. As you've said, the length of ME/CFS varies massively from person to person, as does the degree of illness. This is such a horrible illness to live with. You deserve to be treated better at work.

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  • Posted

    I have had it going on 22 yrs and get worse not better. And aside from the ME and fibromyalgia , recently had a hole in retina due to pvd. Posterior vitreous detachment. And currently have shingles . Everything is so much harder to deal with when constantly unwell and drained to start with isn't it x

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    • Posted

      Sorry to hear this Jackie. Mine wasn't the macular. Another part of retina. I had laser which has formed good scar tissue. A friend had exactly the same at same time. She also has ME. X

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  • Posted

    Hi Sarah, I did beat ME off once after a three year battle but, 5years ago it came back and is not under control now, so a total of 12 years so far... Also your manager needs to look at recent research results finding that there are mitochondrial changes and metabolic changes which indicate Mitochondrial damage. Also Research showing inflammation markers being present in people with ME which suggests a reaction to an infection type process. There isn't a clear indicator showing what the illness is caused by. the Epstein barr virus group seems to be a major contender.  Your manager needs to do some more research.... sadly and very much to all our regrets she is very wrong.

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  • Posted

    Hi Sarah-loui ,, Im still in recovery after 3yrs, but i have progressed ,its just very slow,, my mums had it 12yrs unfortunately, I was very fit and the grief nearly killed me ,,and i constantly crashed ,, the general person has know idea how bad it can be ,i didnt even understand when my mum was in the early stages,and im sure many think we are just lazy lol, if only ,,so life goes on and one learns to know it better and have so much gratitude for little things! Thats great you are working, really wonderful, send your manager love every chance you get ,and DO whatever YOU need to to cope! <3 Guava

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  • Posted

    There are varying degrees of ME too. Every case is individual like anything else. A quick recovery within months is usually more due to not being ME to start with. Specific symptoms have to have been present for at least six months before the disease is even considered.
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  • Posted

    Just read your post again Sarah. Your manager sounds an arrogant idiot. Sorry , but she has no idea. And reckoning she has 'researched' it and believes it can be cured quickly just serves to confirm it. Take no notice of her x

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  • Posted

    Thanks all for your wise words and advice. I think i need a new job entirely as its only getting worse with my new boss sad
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  • Posted

    I know what you're saying. I've had to leave many jobs. Most of the jobs I left, except for one that worked really well for me, because I was too exhausted to continue one more day. It's not a good way to leave. If you can avoid that I think it would be easier on your body.

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