ME/CFS (ME: commonly known as Chronic Fatigue Syndrome)

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I've lived with my illness for the past 5yrs. For me it was post viral as is the most common.

It is a neurological illness that shares some cross-over symptoms with Parkinson's disease and MS.

It is still little known despite there being around 250,000 sufferers in the UK alone. The first case having been diagnosed during the 1930s but significantly, by 1955 the Royal London Hospital was forced to close when up to a third of staff suffered so badly they could not work or, return to work after their initial illness/virus.

There is little research done by government and some in the medical profession - particularly among mental health professionals, deem it to be 'all in the mind' - a 'non-illness'.

NB: The World Health Organisation, recognises ME/CFS as the neurological disease it is and so does the UK Government.

ME is diagnosed as being mild (may still be able to work etc), moderate (unlikely to sustain regular work) and severe which is dire. One is most probably house bound and quite possibly bed bound, and requires personal care.

I was forced to retire from my teaching career at 55 and am now just 60. ME, is a largely, invisible and most debilitating illness.

I have only recently, come to terms with my 'new' life, what I lost and all those who have over time, drifted away ...

Saying NO so often to people who you care about is hard. But when those people fail every which way to have any real measure of understanding - that is also, quite devastating. And one can easily become isolated and worse, invisible. Sufferers of ME can look perfectly well and OK and this is a huge part of the problem - for me.

My quest now, is simply to put my enforced, 'Isolation' out there! I am still reasonably active day to day despite my many limitations and would love to speak to, or meet anyone out there who, can manage to maintain a positive outlook despite whatever it is they suffer with.

I don't wish to sit and moan about my fate. I want to live my life!

That said, I am a compassionate and empathetic character - a good talker - and listener.

I love the Arts, music, radio and some TV, film etc, social history, crime drama, foreign language films. I do family research, and travel research. I like to keep the 'little grey cells' busy - or they die!

Obviously, I am very limited on certain days but I always do what I can.

HELLO!

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  • Posted

    HELLO

    I SUFFERED FOR 5 years but feeling much better now

    i went on a strict diet of no sugar, yeast, dairy and eggs for 4 month. I take 2 types of probiotics every day and tumeric supplements.I no longer need to sleep in the afternoons

    In my case it was clearly to many antibiotics that had coursed the ME.

    Hope this can help

    Best wishes

    Bettina

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  • Posted

    Hi Jo,

    I have lost so many friends due to this condition. At first, when I declined their invites to go out, pop round for a cuppa etc they were sympathetic and hoped I'd "get well soon".........5 years later (Feb 2014 for me, age 51) I don't get invites anymore or visitors, apart from my children and their families. I feel that people think I'm a fake!

    I miss my old life, desperately. I miss having the energy to socialise, to go for walks on the beach, even to clean the house, put a wash load on....never thought I'd be saying that!!

    I'm never depressed but I do get fed up, a lot, I have a little cry some days, mainly out of frustration.

    I need my old life back.

    Sarah

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    • Posted

      Hello, Sarah.

      Thank you for replying to my post.

      It's not at all easy or straight forward to deal with ME: well in truth, for me personally, it's more about dealing with others than the ME. It made me smile when you said, that people had said to you, 'Hope you feel better soon.' If I had a pound . . . 😉) The other saying is, 'Oh you're looking well!.' 'Are you feeling better?'

      I say, Thank you, through gritted teeth and then, '... Better than what?'

      I'm sorry to hear that you feel so 'down' about your situation. It's truly disappointing and deeply frustrating when people cannot take the time to understand - or research what is wrong with their friend. Ignorance and fear often go hand in hand I think. People can see in you their own mortality and how fragile it is. That is their fear. Unless they are actually too shallow to feel the fear 😉

      Do I take it that like me, you live alone? Where in the country are you? Did you have a career or job you enjoyed and have had to give up?

      You say your children visit you: do they live close by and how old are they?

      Best Wishes to You

      Jo

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    • Posted

      Hi Jo,

      I live with my incredible supportive and ever patient husband in the West Country.

      I own a craft shop that I ran on my own for over 20 years until I got ME/CFS at which point my eldest daughter who is 30, became a partner and practically runs it on her own now. I help when I am able which of late has been not at all.

      My other children are 28, 26 and 24 (perfectly spaced 😁) and live in Scotland, Brighton (at university) and Ireland. They are wonderful and understanding, they've seen their Mum go from energetic and full of life to what I am now.

      As for friends I think they are bored of my invisible illness, after all Shirley saw me at the Dentist last Friday and I "look well, so are you better then Sarah?" Oh dear one has to laugh doesn't one.

      Do you have children Jo? Where are you based?

      Sarah

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    • Posted

      Hello, Sarah. Thanks for getting back to me, and for sharing 😉)

      It was really lovely to hear your 'story', and where you are with family etc - so many! Offspring aside, I'm not too dissimilar:

      I'm in W. Yorkshire near Hebden Bridge - a Crafters' paradise or so I'm told 😉) It's full of old hippies, modern hippies (??) and Liberal/feral sorts hmmm ... It's a wee bit cliquey. But inclusive in other areas. I know it is a good enough place to have this frustrating illness: I sometimes imagine myself wearing an invisibility cloak - I wish! At least I can enjoy my coffee by the river, and people watch 😉)

      My one and only son, James, 25, remains at University in Newcastle, taking his Masters in Illistration/Animation: he's the 'Arty' one, while these days, I express my creativity through food - when I have energy (I'm a Veggie, but now, I do occasionally eat oily fish when my body demands it. We must take our pleasures where we can find them!I

      I was at the Dentist too, last week. It is something I dread. My adrenaline shoots into over-drive: the young Dentist, was all for stopping my filling mid-treatment. I just get the most awful tremor. The Dentist asked me if I had fits? It does subside again over a couple of hours and leaves me with the pain - but hey ho. I have been thought to be drunk on occasion - which isn't so amusing 😮)

      I am enjoying the sunshine here ...

      Jo

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    • Posted

      Hi.. Sir ,5 year ago doctor did my EPS to reduce my heart beat. Now from 5 year i have heart sinking problem. I cannot do exercise. When i do rest after walk my heart feel difficultly to become its normal place. Many cardiologist check me and said my heart is ok.

      Do i have CFS. I dont know. Doctors said i have anxiety. Many time post here and people became anoyed by me. From last 3 month i am in hospital emergency in after very two days. My life is ruined. My age is 38. Alot of money i have been spend on doctors fees and medicine. Psychologists have been checked me . I took psycho medicine but no improvement. Day by day i m going down. What i do. I m post my post to every body of you. Hope hear good from you. Best wishes for all of you.

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    • Posted

      Hi.. Sir ,5 year ago doctor did my EPS to reduce my heart beat. Now from 5 year i have heart sinking problem. I cannot do exercise. When i do rest after walk my heart feel difficultly to become its normal place. Many cardiologist check me and said my heart is ok.

      Do i have CFS. I dont know. Doctors said i have anxiety. Many time post here and people became anoyed by me. From last 3 month i am in hospital emergency in after very two days. My life is ruined. My age is 38. Alot of money i have been spend on doctors fees and medicine. Psychologists have been checked me . I took psycho medicine but no improvement. Day by day i m going down. What i do. I m post my post to every body of you. Hope hear good from you. Best wishes for all of you.

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  • Posted

    Same post viral fatigue started about 6 years now to be honest i thought it was over had done so well i n my recovery lots of ups and downs ,relapsed virus again but im confident i will recover i am more informed this time i stopped straight away its all about learning for me whatever the virus is its there and i will be more aware of the warning signs which i disregarded .

    The disrespect for this condition continues unfortunatley friends family neighbours doctors list goes on but i am proud how hard i battled you really have to switch off from the people and remain positive

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    • Posted

      Hello.

      Thanks for posting a reply.

      I'm really pleased to hear that you have had so much positivity around your illness despite the obvious knocks and na sayers.

      You are absolutely right. Positivity is the key!

      Keep bollocking on as we say in Yorkshire!

      Don't let the buggers grind ya down!

      Stay strong - and well.

      Jo

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    • Posted

      Hi jo just thought i would point out that meditation helped me when nothing else did also i did see a physio who performed the perrin teqnique now all i can say for me it helped me but at the start it flared up my symptoms with my m e my nervous system was just completley whacked out and i think it just calmed things down but please be aware this doesnt help everyone and its no quick fix cure i still do the tecnique

      myself but i really cant say how much it helped as it took 4 years for me to get back to i would say 80 percent better maybw it was just time and i rested a lot

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    • Posted

      Hi Russ, Ta for the heads up. However, 'Ditto', with any type of Physio - no go for me. I have tried - EVERYTHING:

      Yoga & Pilates (always dipped in and out) but during my first 3yrs ME - 'denial' years ... thinking I was still OK as per. Oh NO.

      Physio - various - resounding NO. Unless you have other, previous infirmities such as neck, shoulder problems etc then may well help to keep supple but NO.

      Sacro-Cranial Oesteopathy - YES.

      Like you, it, wiped me out at first but with a bit of tweaking ... Home visits ... I was feeling a tad stronger over all and slept better, although have to say, I benefit from respectful, human contact. It helps me psychologically, providing I 'connect' with the Therapist - vitally important. Mutual respect and philosophy etc.

      Meditation is KEY in whatever form it takes and I'm glad it helped you. We ought to practice it in school from the 'get-go' (some are now). It is proven to help correct 'behavioural issues' and is especially helpful at soothing, the modern disease of 'stress and anxiety' among our young - oh blimey!

      In the West, we treat tend to treat an illnesses and not the symptoms, so we are not hollistically syncd so to speak. Language ... meditation, would be an excellent first step to correct this.

      Oh! I also like to listen to a particular guy on youtube who gives a Qigong 4mins video for beginners: (a series of slow movements to aid breathing, balance and centre down through meditation and focus). I do not always have the energy to complete all 4 or 5 moves, but if I do 2 or 3 regularly enough I feel so much stronger and confident that I'm not - going to fall over in Lidl!! 😉)

      I am lucky I can still read - only in bed. It keeps me sane! As does some radio/music, and my various research projects online.

      But gosh, I miss walking so o o much. I do get to stroll most days, up the canal where I live and that helps with mental health - and the all important - SLEEP.

      Speaking of sleep, I have recently discovered that just 1 Histamine tab at bedtime promotes decent hours, and also, I now take 10% CBD Oil in a more general sense - a few drops under my tongue around 8pm after I have eaten. I also take this when I have a journey to make, supplies to gather or Dentist etc. It's this or vodka!!! 😉)

      So thanks for sharing. I really appreciate it. It is just awesome to know there are 'others' out there, thinking and feeling similar to myself 😉)

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    • Posted

      hi jo yes them denial years are well gone for me some of the things i tried to get better are just crazy its quite mild for me now as this only because of me being more informed and for me its simply rest but more than just physical rest mental rest is crucial ,my mind set before m e was to push push at everything thats why i got it 100 percent i went back training after a viral infection then had more and more untill it floored me its so important to not give up i here you about the walking theres was times i thought i would never get well but you can and i was walking the hills again and i will again but no my limitations this time .

      the physio i mentioned isnt physio in exercises its a massage that stimulates the nervous system and lypmphatic it also includes sacro cranial therapy ray perrin its worth looking at his work anyway hope you get better never give up jo

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    • Posted

      melatonin for sleep for me forgot to mention i may try cbd oil but find amatryptyline helps with pain and sleep

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    • Posted

      Yes, Russ, I understand. However, for me, anti-depressants in any form are a no-no . . . I don't suffer clinical depression or anxiety. And I steer clear of 'chemical drugs' generally. I understand low doses may help with nerve pain etc. Glad it works for you though 😉) RE: drugs, I can now enjoy a glass of red wine at weekends - occasionally so . . . 😉)

      I use ibuprofen gel on specific areas - with me it's angina type chest pain - it floors me. Too much typing will bring it on! I can't text to0 often or at length; Got rid of my tablet; Pick up a paper even. I lose my voice too.

      The CBD oil I feel, helps with anti-inflammatory to an extent, although mine is very low 10% - it messes with my head otherwise.

      Enjoy your day.

      Lovely chatting with you 😉)

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