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Chronic Fatigue Syndrome/M.E. Society watch

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    (Original post by Blink.)
    Yep. Sometimes feels like I'm stuck in a bubble so to speak.



    Ah sorry to hear that I went through exactly the same as you, it felt like I'd lost all my friends because of being ill.

    It probably sounds daft lol, but when you say about feeling too poorly to talk, I often literally just switch off mid conversation, like my brain just stops and I can't remember what I was even talking about :o: This is often taken the wrong way as though I'm not listening, and if I don't talk much it come across as moodiness, but I explained everything and it's taken as the 'foggies' lol.

    Best thing to do is just be open about it, and just mention that you're not feeling great and that's why you haven't spoke much, tell them it's nothing personal.

    .
    I know exactly how you feel. i had extremely close mates, who made all sorts of promises. but the second I wasnt there as much as they needed me to be. they lost intrest. bein a bloke was even tougher, guys tend to have an inability to understand other peoples problems unless they had experience them themselves.
    One of my mates, a guy im still in touch with suggested I have a fry up each morning, because to try and get him to understand i said i felt permanently hungover with no night out!!
    thankfully i have a girlfriend who appreciates the strong silent type. so me not me not talking much translates to me being a great listener lol.
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    Aw bless your fry up mate! That's just sweet!
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    (Original post by charla)
    Aw bless your fry up mate! That's just sweet!
    one of the reasons im still in touch with him a big irish lad i played rugby with. he basically runs on guiness and girls lol which was why i was so suprised he gave a toss whether i was ill or not.
    when we chat its kindof established that i dont wanna chat about how im feelin. but thanks to him the lads i go out with evry now and then understand im limited. plus it hilarious being used as part of the " come and sit down wiv us love, my mate feels rough and i need to take care of him" chat up line
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    Has this become the M.E society now officially?
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    (Original post by charla)
    Has this become the M.E society now officially?
    Apparently!

    You should be able to click on this link to join.
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    (Original post by Addnightshade13)
    I know exactly how you feel. i had extremely close mates, who made all sorts of promises. but the second I wasnt there as much as they needed me to be. they lost intrest. bein a bloke was even tougher, guys tend to have an inability to understand other peoples problems unless they had experience them themselves.
    One of my mates, a guy im still in touch with suggested I have a fry up each morning, because to try and get him to understand i said i felt permanently hungover with no night out!!
    thankfully i have a girlfriend who appreciates the strong silent type. so me not me not talking much translates to me being a great listener lol.
    LOL

    Yeah, I don't tend to talk much about how I feel, which comes across to some of my friends as being distant or pushing them away :confused: But it's not, tis just the way I am really lol.

    Oh, I went psych and was put on anti-ds I don't feel that great inside about it al tbh but meh think this is a bit much? And she reckons I've been depressed for about three years from what i said about how I used to be

    But meh, how's everyone? x
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    I had something similar for about 2 years, I say 'similar' as mine was never diagnosed. 2 years with sleeping for 18-20 hours a day most of the time, give or take a few days and constant headaches that no pain medicine would get rid of. Luckily its mostly gone now though
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    (Original post by Blink.)
    LOL

    Yeah, I don't tend to talk much about how I feel, which comes across to some of my friends as being distant or pushing them away :confused: But it's not, tis just the way I am really lol.

    Oh, I went psych and was put on anti-ds I don't feel that great inside about it al tbh but meh think this is a bit much? And she reckons I've been depressed for about three years from what i said about how I used to be

    But meh, how's everyone? x
    Hey
    Im still in one piece.
    Exams knocked me about a bit but im recovering.
    Trying to bludgeon my way through the dreaded DLA forms.

    Ive got a nother general Qu for you guys on the forum...
    been on Dla about 2 years. and i know that loads of chronic illness sufferers are as well.
    i personally find the application a drag but its much needed cash, that a long with a few hours a week tutoring keeps me above water.
    Are any of you guys on Disabled living or Disabled students allowance? and how are you finding it? do you think that the gouvenring body in charge of the benefit understands the limitations of ill people?
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    [QUOTE=Blink.]
    Oh, I went psych and was put on anti-ds I don't feel that great inside about it al tbh but meh think this is a bit much? And she reckons I've been depressed for about three years from what i said about how I used to be

    /QUOTE]

    if u dnt mind me askin midears what exactly have they given you to take
    ( if you want to say you can PM me no need to post!)
    ive been attempting to read a little more into the effect of Anti Ds on M.E sufferers particularly in regard to Hypersensitvity an pain management. gettin v mixed info. but i will post some links up soon.
    personally i didnt take well to the anti Ds. they elevate mood less than they, sortuve flatten everything out.
    you dont feel so bad, but you cant feel too good either !
    apart from your psyche eval did the docs give any other reasons why they prescribed them to you? x
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    (Original post by Addnightshade13)
    f u dnt mind me askin midears what exactly have they given you to take
    Fluoxetine, 20mg.

    (Original post by Addnightshade13)
    ive been attempting to read a little more into the effect of Anti Ds on M.E sufferers particularly in regard to Hypersensitvity an pain management. gettin v mixed info. but i will post some links up soon.
    So far, it's been nausea and headaches. Completley lost my appetite mind, I forget to eat now! But it's not too bad, seems to be settling and I've been on them about a week

    The muscle aches seemed to have dulled a little and my back pains have calmed down a bit, but not majorly. But hey, early days.

    (Original post by Addnightshade13)
    personally i didnt take well to the anti Ds. they elevate mood less than they, sortuve flatten everything out.
    you dont feel so bad, but you cant feel too good either !
    Maybe it was the type/dose. My GP (wasn't supposed to!) put me on Citalopram 10mg and that's how it made me feel, quite numb. But the Fluoxetine's better, I do feel good rather than nothing. Psych reckons that the Citalopram prob wasn't strong enough and so only doing half a job, maybe the same for you?

    She prescribed them mainly because of the Depression, but also because she said they may help with the concentration and memory issues.

    xx
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    How do you deal with the pain, if you don't mind me asking? My day is usually just spent alternating, or combinging, hot water bottles and painkillers but it doesn't give me much relief. I'm not wanting higher doses of painkillers because I've had issues before and it's not wrht the risk in my mind, but sometimes the pain is so awful...
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    Just painkillers and resting up really. I'm a bit :confused: as to how to deal with it properly though, as my pain only seems to ease a little too.

    Soft massages are nice for the muscle pains though :yep:
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    (Original post by Blink.)
    Just painkillers and resting up really. I'm a bit :confused: as to how to deal with it properly though, as my pain only seems to ease a little too.

    Soft massages are nice for the muscle pains though :yep:
    Im glad the meds are working out blink
    im med free...ish at the moment. not going well.
    so used to hobbling around i have walking stick collection!
    but at least im uniquely identifiable at college lol

    how goest everybody. i havent been on in a while.
    been thinking about what im gonna be up to for M.E awareness month... even the simplest things need militaristic planning.
    not many peeps do much in the way of awarness fundraising stuff, but if you are...what are you lovelies thinking of ?
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    This is my first post on this forum. I’ve been diagnosed with M.E./C.F.S. although I don’t think this really counts for much since this is very much dependent on what doctor you see, and I had to see several to get this diagnosis. This makes me wonder sometimes whether I have it. Looking over this forum I certainly recognise the descriptions of brain fog, and my results during university have steadily decreased. I do a Maths degree, and although I can still understand the broad concepts and ideas I find the calculations very difficult. These days I even have some difficultly counting money at the shop.

    However compared to most people on this forum I don’t seem to have anywhere near the same levels of tiredness. I even play 5 a side football with my dad when I come back home for the holidays, although I have nowhere near the level of fitness that I used to have.

    I was just wondering if anyone else on this forum had a similar profile of symptoms to me. Sometimes I feel like a fake when I compare myself to the sufferers I sometimes see on the news.
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    Had my first appointment at the clinic earlier this week (yay!) and feel pretty positive about getting over all of this and getting back to how i was before. However, just wondered has anyone got over it and relapsed since going to uni cos i'm not a bit worried that i'll improve loads and then ruin what i've managed to achieve.
    Hope everyone is feeling alright
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    Hey all

    Been a while cos of school work and whatnot - how's everyone doing?

    Happy Valentines

    (Original post by Addnightshade13)
    Im glad the meds are working out blink
    im med free...ish at the moment. not going well.
    so used to hobbling around i have walking stick collection!
    but at least im uniquely identifiable at college lol
    Cheers

    Ah, well PM me if you ever need a chat, and I hope you feel better soon



    (Original post by jw5433)
    This is my first post on this forum. I’ve been diagnosed with M.E./C.F.S. although I don’t think this really counts for much since this is very much dependent on what doctor you see, and I had to see several to get this diagnosis. This makes me wonder sometimes whether I have it. Looking over this forum I certainly recognise the descriptions of brain fog, and my results during university have steadily decreased. I do a Maths degree, and although I can still understand the broad concepts and ideas I find the calculations very difficult. These days I even have some difficultly counting money at the shop.

    However compared to most people on this forum I don’t seem to have anywhere near the same levels of tiredness. I even play 5 a side football with my dad when I come back home for the holidays, although I have nowhere near the level of fitness that I used to have.

    I was just wondering if anyone else on this forum had a similar profile of symptoms to me. Sometimes I feel like a fake when I compare myself to the sufferers I sometimes see on the news.
    I'm the same with calculations and stuff, just can't work out basic things sometimes!

    There's no reason to feel a fake. CFS is a bit of a spectrum really - some people have it mildly, other people are more severe. It just varys person to person.

    (Original post by charla)
    Had my first appointment at the clinic earlier this week (yay!) and feel pretty positive about getting over all of this and getting back to how i was before. However, just wondered has anyone got over it and relapsed since going to uni cos i'm not a bit worried that i'll improve loads and then ruin what i've managed to achieve.
    Hope everyone is feeling alright
    Best thing to do is get yourself into a routine mentally and physically before you go. I relapsed when I started sixth form, but I've improved again now I've got myself into a proper routine.

    Just a case of adapting I think - staying positive will definatly help


    Woah, essay post lol.

    xxx
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    Just thought I'd see how everyone was doing since it's been a bit quiet for a while.
    Had 3 appointments at my clinic and it's got to the point where we're concentrating on my physical ability rather than mental as it appears I'm able to cope fine with college work and revision. Able to walk a mile without a problem really, felt a bit sleepy today though otherwise hopefully getting somewhere with it, just need a bit more willpower!
    Just hope everyone else is getting somewhere too.
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    (Original post by Blink.)
    Fluoxetine, 20mg.


    So far, it's been nausea and headaches. Completley lost my appetite mind, I forget to eat now! But it's not too bad, seems to be settling and I've been on them about a week

    The muscle aches seemed to have dulled a little and my back pains have calmed down a bit, but not majorly. But hey, early days.
    Hey, old post I know, but I've just found this thread again (should have watched it!) and was wondering if you could tell me how the fluoxetine worked out for you? I was put on it by my GP about a week ago for both ME and depression, and I'm currently experiencing exactly the same things that you mentioned in your post. Did it end up helping much?
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    (Original post by StandingOnAir)
    ...
    Hey

    I'm still on it now - as if it's been a year!
    It's helped a lot for the majority of the time, my concentration's been much better. I've felt better although I've still had relapses, they've calmed down and they're much less often now. The aches are still there, but again not so bad most of the time. I'm on 40mg now, they tend to up it after a while.

    I'm not 100%, but day to day it's gotten easier - I'd give it a try

    P.S - I tried cutting down on the sugar and yeast, and surprisingly, after a couple of weeks it helped too with regards to the energy and fogginess. Cutting out on bread and switching sugar to honey was how I started.

    Ah that's good to hear charla How is everyone getting on now then? Hope you're all good! x
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    (Original post by Blink.)
    Hey

    I'm still on it now - as if it's been a year!
    It's helped a lot for the majority of the time, my concentration's been much better. I've felt better although I've still had relapses, they've calmed down and they're much less often now. The aches are still there, but again not so bad most of the time. I'm on 40mg now, they tend to up it after a while.

    I'm not 100%, but day to day it's gotten easier - I'd give it a try

    P.S - I tried cutting down on the sugar and yeast, and surprisingly, after a couple of weeks it helped too with regards to the energy and fogginess. Cutting out on bread and switching sugar to honey was how I started.

    Ah that's good to hear charla How is everyone getting on now then? Hope you're all good! x
    Hey, it's been fairly good so far. I've started uni and so far been coping, though this term i'm in every day and have two 9am starts which i'm a bit apprehensive about but i've basically been having a normal routine.
    I still got an appointment over easter just as a check up cos the one over christmas got cancelled due to the snow and people not being able to get in but hopefully i'll be able to go to that pretty positive.
    Hope everyone else is doing well.
 
 
 
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