I thought it was called Yuppie Flu?

[schizodoor 10]

I was diagnosed this morning with chronic fatigue syndrome/M.E. To be completely straight with you I've always considered myself quite lazy and envied the motivation those around me seem to have that I don't. My blood pressure's always been quite low and I've suffered with joint pain and fatigue for many years.

 

At christmas I fell ill with two different viruses one after another and just never recovered; I was starting to think it was just part of getting old but the doctors kept calling me in because of my blood test results, my white count is up, my temperature has been above normal for 8 months, my ankles and wrist and fingers hurt, my skin is over sensitive, I'm exhausted almost ALL the time, I ache all over, my bowels are no longer my own, one flight of stairs puts me on my back for hours. I was so shocked today when the doc told me.

 

Where do I go from here? I'm a single mum of two in the middle of a degree course (that I'm failing due to being so ill for most of this year). I really don't think I can continue with my course is this is a long term illness. Does anyone have advice of how to manage this so I can continue or should I just give in now? What support is there out there? Should I just drink ten gallons of coffee per day and get a speed habit!!!

 

Thanks for listening

[HeadingNorth 11]

http://www.sheffieldmegroup.co.uk/

 

They will doubtless be much better placed to help than we are, and certainly better placed than I am - I know nothing about the illness.

[schizodoor 10]

Thank you HeadingNorth That's really helpful!

[Plain Talker 11]

Coffee may not be the wisest option, if you suffer from sleep disturbances which can be a common plague of those with ME.

 

The best thing to do is to listen to what your body is telling you, and rest if you need to do so. There's no point in "draining your batteries" so hard, with an activity, if you end up spendong a week in bed recovering!

[arachnophobe 10]

Ok, first of all do NOT do the coffee and amphetamines route! If you don't stop, or at least slow down, your body will stop you, and you will end up making yourself much much worse. Rest and pace yourself as much as possible.

 

I was diagnosed with ME/ CFS just over a year ago, having battled with recurring infections for many years. I went from being really playing sports and being really active (between illnesses), to being virtually housebound, because I wasn't diagnosed as early as I should have been, and thought I could push on through the fatigue.

 

There is an ME/ CFS centre in Sheffield called Fairlawns which your GP can refer you to, but I think it is quite a long wait to be seen. I will dig out some links to websites which give advice on managing and treating it. The one HeadingNorth posted is a good 'un.

 

I found this website http://www.foggyfriends.org/forum/index.php, really useful, you have to register to use the forum but it is a great souce of help, support and potential treatments.

 

I have been getting private treatment for the last couple of months to clear up a couple of long-term bacterial infections, unfortunately the NHS provision for ME/ CFS patients is very limited. I have been feeling almost normal since and although it's early days, am hopeful. I'm even tentatively planning to get back to the gym next month, building up bit by bit, health permitting obviously. I am very optimistic about the future.

 

A lot of people (some GPs included!) still think it is a psychological condition. There is mounting evidence to disprove this, and many ME/ CFS patients have chronic viral, bacterial or parasitic infections which are NOT picked up by routine NHS tests. Please ignore anyone who tells you to do some exercise! Until you are feeling better it's probably the worst thing you can do.

 

As far as your degree course goes, explain the situation to your tutors- most are understanding when someone is ill, plus it will explain why you have been failing! Obviously it is up to you and your own judgement, and the severity of your symptoms, but I'd definitely consider deferring until you feel well enough to continue. Your health is the most important thing.

 

Prognosis varies- some people have severe symptoms for many years, some people make complete recoveries (more likely if the condition is picked up early), others continue to have mild symptoms, but manage them to the point of having a near-normal life.

 

Sorry for the long post! Feel free to PM me any time.

[schizodoor 10]

Well I asked the doctor today if he could give me stimulants to keep me awake while I'm working at Uni or with the kids and he said NO I understand they wouldn't work long-term anyway I guess I'm still fighting the diagnosis! It's just so frustrating needing to do things and falling asleep either during or after! usually during to be honest!

 

He gave me some information but basically left me too it and I feel a bit lost and like I'm flogging a dead horse! The more I look around the net the more info I'm finding, and while on the one hand it's quite reassuring on the other it's starting to make me feel a little gloomy about the future.

 

Thanks PlainTalker and arachnophobe I'm bookmarking those links so I can have a good read a little later. The doctor didn't mention any referral and he did say something about new research about fighting through the pain with exercise but I can find NO reference to anything like that on the web just slowly building up? Is this new research or misguided rubbish?

Edited August 21, 2009 by schizodoor

[arachnophobe 10]

Well I asked the doctor today if he could give me stimulants to keep me awake while I'm working at Uni or with the kids and he said NO I understand they wouldn't work long-term anyway I guess I'm still fighting the diagnosis! It's just so frustrating needing to do things and falling asleep either during or after! usually during to be honest!

 

He gave me some information but basically left me too it and I feel a bit lost and like I'm flogging a dead horse! The more I look around the net the more info I'm finding, and while on the one hand it's quite reassuring on the other it's starting to make me feel a little gloomy about the future.

 

 

I think being diagnosed with any potentially serious illness means completely re-evaluating what you can reasonably expect yourself to do, at least for the time being. It's easy to kid yourself you're alright because you don't necessarily look ill. It took me a while to really accept that I actually was ill and mustn't keep pushing myself (that goes for physical and mental activities). Easier said than done though when that is what you've been doing for years.

 

I would definitely recommend the Foggy Friends website I gave a link for- there is loads of support and advice on there, it's been invaluable.

 

Unfortunately there is very little in terms of treatment or support available on the NHS.

 

ETA: Just seen the note about fighting through the pain with exercise- everything I've read from ME/ CFS specialists warns against it- in my own experience, it made me much, much worse. Even Graded Exercise Therapy (GET), which involves gradually adding small amounts of exercise, has had mixed results, presumably because the underlying causes aren't being treated.

Edited August 21, 2009 by arachnophobe

[kel83 10]

You should go and speak to your tutor or someone similar at university. It's different, but I had glandular fever when I was doing my A Levels and all of my teachers were very understanding. They might be able to suggest some ways that the uni can help you.

[schizodoor 10]

I'm really thinking I should quit or at least defer for a while but I DON'T WANT TO!!!! LOL *insert childish tantrum here*

 

I feel if I give up I really will have NOTHING to get out bed for in the mornings! I'm definitely going to register with foggy friends, they've already explained my ridiculous memory problems, it seems I've had a mild form of this for quite some time and the virus has exacerbated the whole condition

[Dozy 11]

I'm really thinking I should quit or at least defer for a while but I DON'T WANT TO!!!! LOL *insert childish tantrum here*

 

I feel if I give up I really will have NOTHING to get out bed for in the mornings! I'm definitely going to register with foggy friends, they've already explained my ridiculous memory problems, it seems I've had a mild form of this for quite some time and the virus has exacerbated the whole condition

 

Of course you don't want to defer your education - but it sounds like it's a case of having to.

 

Years ago, I had a friend who had ME. It was back in the days when it was called yuppie flu and he basically got beggar all help from his doctor, who thought he was faking it. I couldn't believe the difference in him - he went from somebody who's idea of a nice holiday was flying to half way down Italy and then cycling back over the Alps - to a person who could hardly stand up.

 

He did recover, but it took a couple of years and he just had to accept that he needed to take it easy, no matter how annoying it was.

[schizodoor 10]

It's going to take some dealing with but it looks like I'm just going to have to; you guys have given me a chance to air it and 'spit out mi dummy' a bit! I'll have words with my tutor and re-visit the Doctors for a referral and some more accurate advice. I'm in the middle of re-sits at the moment and it's absolutely wiping me out!!

[Plain Talker 11]

It's going to take some dealing with but it looks like I'm just going to have to; you guys have given me a chance to air it and 'spit out mi dummy' a bit! I'll have words with my tutor and re-visit the Doctors for a referral and some more accurate advice. I'm in the middle of re-sits at the moment and it's absolutely wiping me out!!

 

I don't know how far you are into your course, but if you really, really want to continue your studies, have you thought about switching to part-time, and/or doing the rest of your degree through distance-learning (the O-U for example?)