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Chronic Fatigue Syndrome/M.E. Society

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Original post by chelseadagg3r
Hi! :hugs:

The whole testing phase can be irritating, but it's worth it just to be told what is/is not wrong imo. I know what you mean about the pain! After a long day at college, I struggle to hold my head up in the car on the way home because my neck is so messed up. I have quite bad memory and cognitive issues as well, insomnia, headaches, malaise and everything as well. It's weird how many things can be linked to it! Don't worry about all the tests. I had every test under the sun, and it was all just formalities. I hope everything goes well!


Sorry to hear you have CFS :frown: :hugs: Its annoying how so many people think its made up or its just a bad case of laziness :facepalm:
I'll keep you posted on the test results :smile: part of me worries its something more serious like cancer or something because its hard to believe so much pain and exhaustion can come from CFS, it feels like it must be something 100 times more sinister but the doctor assures me the exhaustion I'm experiencing is textbook CFS and not something worse so I'll just need to take their word for it :tongue:
Original post by Spock's Socks
Sorry to hear you have CFS :frown: :hugs: Its annoying how so many people think its made up or its just a bad case of laziness :facepalm:
I'll keep you posted on the test results :smile: part of me worries its something more serious like cancer or something because its hard to believe so much pain and exhaustion can come from CFS, it feels like it must be something 100 times more sinister but the doctor assures me the exhaustion I'm experiencing is textbook CFS and not something worse so I'll just need to take their word for it :tongue:


I know what you mean! It was hard to accept at first that it was just one thing wrong, and not something bigger

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Currently waiting for an ambulance lol. I've been on close watch since Monday for asthma and some kind of chest infection or a blood clot. I've been on plenty of steroids since then, a nebuliser, and an inhaler but I stopped breathing on Tuesday night. I recovered a bit, so I just went back to my doctor as planned, but I just got really bad again. I had to call 111 because I can hardly breathe and my fever is through the roof. I feel worse than when my sats were low as well, so that's probably not a good sign. I really hope I don't have to go into hospital, but it's looking more and more likely. It's gonna take a while to get over this one, I can tell already. I'm not even worried about all this and being sick, just how bad my CFS and FM is going to be because of it

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hey guys, I'm not sure how active this thread is.

I had Glandular Fever at the end of August 2015, and was diagnosed with Post Viral Fatigue and told it would go away within a year and if it was still bad after a year only then would doctors be concerned. It ruined my A2 year and I'm now redoing it at college which I hate, has longer hours and tires me out ridiculously. I've been there for 3/4 weeks, already had 1 week off due to fatigue and can't manage a full week as monday and tuesday I'm in 9-5 and my only break is 1 hour for lunch. Similarly, wednesday is 11-5 with an hour for lunch, thursday 9-5 with a gap between 11 and 2 and friday I'm in 9-11.

I've had bloods done so many times, and nothing is wrong and they're all perfect. Changed doctors, and a year on all that's happened is bloods have been done and I've been told now side effects of my ADD meds has to be ruled out.

I get so tired I sometimes don't know where I am, my legs some days feel like they're lead and I struggle to get out of bed. I get incredibly bad migraines that can last for 2-3 days, joint pain and lower back pain I never used to get, tasks that used to be easy seem to take ages now. When I'm good, I just feel like I tire quicker, or I'm running on about 5 hours sleep even if I've had 8-9 hours. When I'm bad, it's like I get no energy or rest from sleep at all, and when it's really bad, I get a migraine so bad painkillers don't work, and it actually is so painful it stops me sleeping. I've always been migraine prone, but now they're much worse. I also before had a sensitive stomach/possible IBS which now is 10x worse to the point I can't even eat cheese and onion crisps and seem to be lactose intolerant. I'm always too warm or too cold, and even when I'm too warm, my feet and often my fingers, are freezing and my feet turn blue. My feet can be so cold even thick socks and sitting with them under a duvet won't help.

I am mentally 100%, apart from brain fog, forgetting basic terms/words, forgetting sentences and feeling like I'm unable to understand words/spell things/remember words for things even if I know what they are. It's more common when I'm really tired, or inbetween, and it's the inbetween days that are a problem at school. My ADD meds don't seem to make this worse or better, but drs won't do any further tests until med side effects are ruled out, and my consultant psychiatrist is awful and doesn't believe in adult ADD so my fear is he will just take me off my ADD meds which is one of the worst things that could happen as my concentration and focus, as well as energy levels, seems to fall without them.
Original post by chelseadagg3r
Currently waiting for an ambulance lol. I've been on close watch since Monday for asthma and some kind of chest infection or a blood clot. I've been on plenty of steroids since then, a nebuliser, and an inhaler but I stopped breathing on Tuesday night. I recovered a bit, so I just went back to my doctor as planned, but I just got really bad again. I had to call 111 because I can hardly breathe and my fever is through the roof. I feel worse than when my sats were low as well, so that's probably not a good sign. I really hope I don't have to go into hospital, but it's looking more and more likely. It's gonna take a while to get over this one, I can tell already. I'm not even worried about all this and being sick, just how bad my CFS and FM is going to be because of it

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Oh no :frown: hope its nothing serious like a blood clot and you recover quickly. Take care :hugs:
Original post by Spock's Socks
Oh no :frown: hope its nothing serious like a blood clot and you recover quickly. Take care :hugs:


Definitely not a blood clot, thankfully. They were worried about that earlier in the week. Just a nasty infection, and my second asthma attack of the week. I just can't be alone or anything but I should be okay from now. Thanks! :hugs:
I think I'm going down hill again. This would be the first major 'relapse' in quite a while. I've been going fairly steady since the last one in 2015. I only managed to stay up for a few hours yesterday, and I'm completely exhausted from a couple of hours out the house yesterday. My mum isn't well so I'm making my own food tonight, and even getting something out of the freezer has left me in agony. It's looking like I won't manage an 8 hour college day tomorrow, but I can't afford more time off. I think all the stress of everything at the moment and being so ill recently has triggered it :sigh: :frown:
Original post by chelseadagg3r
I think I'm going down hill again. This would be the first major 'relapse' in quite a while. I've been going fairly steady since the last one in 2015. I only managed to stay up for a few hours yesterday, and I'm completely exhausted from a couple of hours out the house yesterday. My mum isn't well so I'm making my own food tonight, and even getting something out of the freezer has left me in agony. It's looking like I won't manage an 8 hour college day tomorrow, but I can't afford more time off. I think all the stress of everything at the moment and being so ill recently has triggered it :sigh: :frown:


:hugs: look after yourself as well as you can, you've been under a huge amount of stress and things recently on top of going back to college so not surprised it's happened, that's no help though I know. Far easier said than done but don't push yourself more than you absolutely have to, we both know how that ends and what happens afterwards! Really hope you feel a bit better soon :frown:
Original post by furryface12
:hugs: look after yourself as well as you can, you've been under a huge amount of stress and things recently on top of going back to college so not surprised it's happened, that's no help though I know. Far easier said than done but don't push yourself more than you absolutely have to, we both know how that ends and what happens afterwards! Really hope you feel a bit better soon :frown:


Thank you :hugs: I guess, I was just hoping I would get lucky this time :laugh: Thinking about it, I would rather a few days off over the next few weeks so I don't end up housebound for months again. College won't see it that way, but after telling them everything last week I don't think they'll question a couple of days off too much. Me too :laugh: Hope you're not doing too bad :hugs:
Original post by chelseadagg3r
Thank you :hugs: I guess, I was just hoping I would get lucky this time :laugh: Thinking about it, I would rather a few days off over the next few weeks so I don't end up housebound for months again. College won't see it that way, but after telling them everything last week I don't think they'll question a couple of days off too much. Me too :laugh: Hope you're not doing too bad :hugs:


Yeah, been there so many times too but oh well. We'll do it one day! But yeah, exactly- you can only do your best, and anyone would struggle with what you've coped with recently. Yeah, exactly! Thanks, struggling a bit but got nothing on for a bit after tomorrow so just aiming for that really :redface:
Original post by furryface12
Yeah, been there so many times too but oh well. We'll do it one day! But yeah, exactly- you can only do your best, and anyone would struggle with what you've coped with recently. Yeah, exactly! Thanks, struggling a bit but got nothing on for a bit after tomorrow so just aiming for that really :redface:


One day! Took today off, I'm still in a lot of pain. I think they understand. At least I only have a half day tomorrow. Sorry to hear you're struggling, but at least you have some time to rest which sounds good :smile:
So angry. Caught a cold from college again. This is the fourth since September that I caught from someone there, and the fifth in total. I have a mouth full of ulcers, I woke up with blue lips and fingers because I wasn't getting enough oxygen, and this is only the first day. Chances are it'll get worse, and I'll likely end up with complications. I've asked college so many times to encourage students not to go in when they're ill but they don't care. My doctor writes in a letter that I'm more susceptible to viral infections than most, and they ignore it. I'm at my wits end. I've already ended up in hospital because of a cold I caught from college, and having emergency treatment at the doctors twice. I have asthma and can't even roll over in bed without getting breathless when I get this ill. It's like they don't even care at all. I can only do so much to protect myself from viruses and they just couldn't care less. I know it's only a cold but even a cold with no complications leaves me exhausted for weeks. Chances are there'll be complications anyway, so I could be out for ages. I really don't want to end up in another ambulance thanks to a cold. I was very close to having an episode (poss. seizure) the other day at the cinema. My body can't take any more of this right now. I have these episodes when I've pushed too much, and they take a while to recover from. I was thinking of asking the principle to install more antibac dispensers around college, but it's incredibly unlikely she would agree and even if she did they probably wouldn't be installed this year anyway. It took them months to replace a broken water dispenser that hundreds of students had asked for. Really losing the will to carry on
Original post by chelseadagg3r
So angry. Caught a cold from college again. This is the fourth since September that I caught from someone there, and the fifth in total. I have a mouth full of ulcers, I woke up with blue lips and fingers because I wasn't getting enough oxygen, and this is only the first day. Chances are it'll get worse, and I'll likely end up with complications. I've asked college so many times to encourage students not to go in when they're ill but they don't care. My doctor writes in a letter that I'm more susceptible to viral infections than most, and they ignore it. I'm at my wits end. I've already ended up in hospital because of a cold I caught from college, and having emergency treatment at the doctors twice. I have asthma and can't even roll over in bed without getting breathless when I get this ill. It's like they don't even care at all. I can only do so much to protect myself from viruses and they just couldn't care less. I know it's only a cold but even a cold with no complications leaves me exhausted for weeks. Chances are there'll be complications anyway, so I could be out for ages. I really don't want to end up in another ambulance thanks to a cold. I was very close to having an episode (poss. seizure) the other day at the cinema. My body can't take any more of this right now. I have these episodes when I've pushed too much, and they take a while to recover from. I was thinking of asking the principle to install more antibac dispensers around college, but it's incredibly unlikely she would agree and even if she did they probably wouldn't be installed this year anyway. It took them months to replace a broken water dispenser that hundreds of students had asked for. Really losing the will to carry on

Late reply and a half but this sort of stuff drives me mad. Particularly when it goes against everything they've always said to prospective students etc and argh. My school was the same and think a lot of places probably are but people just don't understand what an affect stuff like that can have. Anyway, rant over- hope you're feeling a bit better now!


On a vaguely related note, how are people with colds/viruses/whatever in general? Some people with CFS seem to get anything and everything going but it's not too bad, whereas others (including me) don't get things very often- sometimes if anything less than 'normal' people- but really badly when they do. Certainly for me I can go ages without a cold or anything even when those around me do but if I do am really ill for a long time, usually with complications and sometimes hospital and stuff. Bit of a random question but I'm curious, it's odd!
Original post by furryface12
Late reply and a half but this sort of stuff drives me mad. Particularly when it goes against everything they've always said to prospective students etc and argh. My school was the same and think a lot of places probably are but people just don't understand what an affect stuff like that can have. Anyway, rant over- hope you're feeling a bit better now!


On a vaguely related note, how are people with colds/viruses/whatever in general? Some people with CFS seem to get anything and everything going but it's not too bad, whereas others (including me) don't get things very often- sometimes if anything less than 'normal' people- but really badly when they do. Certainly for me I can go ages without a cold or anything even when those around me do but if I do am really ill for a long time, usually with complications and sometimes hospital and stuff. Bit of a random question but I'm curious, it's odd!


Yeah, exactly. My whole class ended up ill, and this week there's been hardly anyone in apparently. Feeling a bit better, still exhausted and it's spread to my chest again, but I can breathe most of the time now :laugh:

I tend to catch anything and everything going round, and also get it really badly. I have to be really careful, especially during winter when flu is going around or when I'm around kids who have been with their snotty classmates :laugh: I've ended up in hospital for stupid colds, even in an ambulance, and have had to have midnight drs appointments countless times because I've ended up with complications from something stupid. It's rare I get a cold and it doesn't turn into a chest infection nowadays. I've had so many this year it's unbelievable. They saw I had a weak immune system years ago though, so it's something I've had to deal with for a long time. I've always been one to catch everything but it's been getting worse and worse over time. I get throat infections a lot, and laryngitis a lot actually. I get a lot of colds, chest infections, etc. The only things that don't tend to last seemingly forever and have a lot of complications with is stomach bugs. I still get them a lot, and have they last a few days longer, but I've never had complications from them. Anything towards my chest is just a nightmare. I've stayed off from college before because the whole class have been quite ill and they kept coming in with it.

I find with colds though I just get really weird. Does anyone else find this? I find myself talking to myself, things that aren't there, and just acting really odd. I phoned up college on the first or second day of this cold and demanded a meeting with the principle because she needs to 'stop this madness'. I guess it's just the fever, but I've had higher fevers with other things but have never been like this. Every time I get a cold though, it happens. Has done for years :dontknow:
Original post by furryface12
Late reply and a half but this sort of stuff drives me mad. Particularly when it goes against everything they've always said to prospective students etc and argh. My school was the same and think a lot of places probably are but people just don't understand what an affect stuff like that can have. Anyway, rant over- hope you're feeling a bit better now!


On a vaguely related note, how are people with colds/viruses/whatever in general? Some people with CFS seem to get anything and everything going but it's not too bad, whereas others (including me) don't get things very often- sometimes if anything less than 'normal' people- but really badly when they do. Certainly for me I can go ages without a cold or anything even when those around me do but if I do am really ill for a long time, usually with complications and sometimes hospital and stuff. Bit of a random question but I'm curious, it's odd!


I get every cold that goes round - and really badly, it makes me cfs symptoms worse too

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Nearing the end of my college year. So proud of myself that I've managed through the year, even if my attendance is abysmal. Last time I tried college, I'd completely stopped going in by now and had resigned myself to failing. I was hardly doing anything at all because I was so ill and exhausted from pushing myself too hard through the first few months. Very very proud of myself
Original post by chelseadagg3r
Nearing the end of my college year. So proud of myself that I've managed through the year, even if my attendance is abysmal. Last time I tried college, I'd completely stopped going in by now and had resigned myself to failing. I was hardly doing anything at all because I was so ill and exhausted from pushing myself too hard through the first few months. Very very proud of myself


Well done! What is your attendance? I seem to be doing okay (AAC) with a 65% attendance
Original post by fxlloutboyy
Well done! What is your attendance? I seem to be doing okay (AAC) with a 65% attendance


Well done to you! It was 50 something% a couple of months ago, and has gotten worse since. I would say maybe 40-50%. It's not great obviously, but my attendance in my first year of college before I took the year out was about 15-20%, and my attendance in my last year of school was about 25-30% so it's an improvement for sure
Original post by chelseadagg3r
Well done to you! It was 50 something% a couple of months ago, and has gotten worse since. I would say maybe 40-50%. It's not great obviously, but my attendance in my first year of college before I took the year out was about 15-20%, and my attendance in my last year of school was about 25-30% so it's an improvement for sure


I'm on a part time time so it probably works out the same - are you doing a levels?

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Original post by fxlloutboyy
I'm on a part time time so it probably works out the same - are you doing a levels?

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I'm doing a BTEC. A-levels were out of the question because I couldn't do 5 days a week :laugh: I'm timetabled for about 15 hours per week over 3 days. What's your timetable like?

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