Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

[Katy]

Has anyone suffered from this or has known anybody who has suffered with it? I've recently been diagnosed with a mild to moderate form of it and the doctors say there's no actual treatment.

Any advice or self help techniques would be much appreciated.

Thanks

[James.]

My girlfriend's sister had it when she was younger, I'll speak to her and ask for any advice she has.

EDIT: she did recover from it though so there is hope..!

[Hitesh]

What is it exactly? Is it where you constantly feel tired and can't physically do anything??

I knew someone at my Sixth Form who had something like that and he really suffered for quite a while but somehow turned it around and given time he made a recovery. Not sure if its the same thing though!

I'm sure you will be fine Katy!

[Monk]

A good friend of mine has had it severely for about 8 years. It has taken her a long time to get to the stage where she can cope with going on holiday. From what she's told me in the past the key things to control it are:

-Diet - avoiding sugar and caffeine as the 'low's they give are amplified by the ME

-Knowing your energy limits and don't go over the top

Good luck with it - there are specialists you can see. I'd reccommend trying reflexology or alternative therapy as to be honest doctors don't really believe in ME.

[Darkzzz_]

Has anyone suffered from this or has known anybody who has suffered with it? I've recently been diagnosed with a mild to moderate form of it and the doctors say there's no actual treatment.

Any advice or self help techniques would be much appreciated.

Thanks

Sorry to hear that Katy. I know what it is like to suffer from exhaustion, mentally, if that is one of your symptoms.

I am sure you will find a lot of info on the web to help you out, I did for mine.

[Katy]

Thanks guys. I spoke to one of my lecturers about it and his brother had suffered from it for 30 years!!! It's just getting me down a bit at the moment.

Reflexology sounds interesting. Any info you can get James would be brilliant. I've looked on the various sites but they aren't really telling me anything. My Doctor says I need to rest up and 'bank' energy for events and stuff but I'm really finding out what my limits are at the moment.

It's the aching joints and appetite loss that's the most annoying.

[Wycombe Fox]

Sorry to hear you're down with this Katy.

Don't know a great deal about it but I should think these do http://www.meassociation.org.uk/

All the best.

[Dr The Singh]

Thanks guys. I spoke to one of my lecturers about it and his brother had suffered from it for 30 years!!! It's just getting me down a bit at the moment.

Reflexology sounds interesting. Any info you can get James would be brilliant. I've looked on the various sites but they aren't really telling me anything. My Doctor says I need to rest up and 'bank' energy for events and stuff but I'm really finding out what my limits are at the moment.

It's the aching joints and appetite loss that's the most annoying.

There's a place not too far from grantham, it's actually near lincoln who a friend of mine goes to!! If you want the details let me know!!

All the best me dear!!!

[Corky]

All the best Katy, I hope you're okay

[morris1234]

hope youre feeling ok katy. i think this one of those conditions people assume is physcosymatic?! so you will get some people (if they know what it is) that will think youre putting it on but conditions like this have been proved not to be.

anyway i presume the fact that there is no straight forward "cure" or treatment is getting you down the most? but dont let it, in fact this could mean it changes from person to person, where as ohers have had it for ages doesnt mean you will, i think the more work you put into it no matter how small, will help you get better. so reflexology is a good idea.

theres no point in saying 'dont get down about it' because we all wish it was that easy but i did know 2 people who had this (they were twins) and they both ended up playing against my sunday league team 2 years ago and we still lost lol

good luck katy. (oh and i wouldnt recommend, if you havent already seen it, ricky gervais fame because he takes the piss out of it )

[Flynny]

My old college used to have a physio in one morning a week that you could nip and see whenever if the P.E department thought you needed to. I went once with a niggly achilles and chatted to her for a bit, turned out she'd had this so bad that she'd literally had to be confined to a wheelchair at times.

When I asked her how she'd overcome it she got a bit defensive at first and then said she'd been referred to someone in London who'd taught her how to do some sort of verbal self-programming thing (can't remember what this is called - I've heard of it before) and that had done the business for her. Must be something in it if it got her from a wheelchair to up and about.

[morris1234]

My old college used to have a physio in one morning a week that you could nip and see whenever if the P.E department thought you needed to. I went once with a niggly achilles and chatted to her for a bit, turned out she'd had this so bad that she'd literally had to be confined to a wheelchair at times.

When I asked her how she'd overcome it she got a bit defensive at first and then said she'd been referred to someone in London who'd taught her how to do some sort of verbal self-programming thing (can't remember what this is called - I've heard of it before) and that had done the business for her. Must be something in it if it got her from a wheelchair to up and about.

[Trav Le Bleu]

My girlfriend's sister had it when she was younger, I'll speak to her and ask for any advice she has.

EDIT: she did recover from it though so there is hope..!

Are you saying that she was lethargic, found it difficult to get out of bed in the morning, apathetic... as a teenager?

[morris1234]

Are you saying that she was lethargic, found it difficult to get out of bed in the morning, apathetic... as a teenager?

hahaha harsh...........but funny.

the worst thing anybody can do when they are worried they have a conditon or something is look on the internet (now now ! ) this can make you so paranoid and just make you worse so try to avoid it. believe me ive done it before when i had to have mole removed, fuss over nothing, ok this is different but you get my point.

[Jon the Hat]

Has anyone suffered from this or has known anybody who has suffered with it? I've recently been diagnosed with a mild to moderate form of it and the doctors say there's no actual treatment.

Any advice or self help techniques would be much appreciated.

Thanks

Hi Katy, sorry to hear this. My Ex girlfriend had ME, diagnosed when she was early teens. She missed a lot of school and college, and had a lot of trouble finding a doctor to take her seriously. Things have improved on that front, but I would say it is essential that you are treated by someone who has no doubts. Someone going through the motions is not going to help you a lot.

In terms of treatment, my Ex did an excercise with her diet which cut out just about everything, then gradually re-introduced foods to see what made her worse. She ended up reducing sugar to a minimum (and in fact took tablets after meals to help destroy sugar in her stomach). and cutting out Yeast completely. These were the two key foods which caused her problems, but it can vary person to person I think. With those changes she gradually got back to normal to the point where she could work in retail managment - which we all know is pretty demanding energy wise.

You need to change mindset from "excercise increases stamina" because that will will not work right now. Focus on the important things and invest your energy in those. Things will improve, as hard as it may be to get your head round that at the moment.

Good luck.

[Jon the Hat]

Are you saying that she was lethargic, found it difficult to get out of bed in the morning, apathetic... as a teenager?

I once read something which described having ME as feeling like you have the worst flu of your life and are trying to run through treacle. Every day. So not really like being a teenager.

[Katy]

Thanks everyone, this is all cracking stuff.

Flynneh, that sounds really interesting. I think my doctor mentioned something about cognitive therapy as well which is along the same lines I think.

Oh and I will avoid watching the Ricky Gervais thing, if only because I think he's a total cockend

[Katy]

Hi Katy, sorry to hear this. My Ex girlfriend had ME, diagnosed when she was early teens. She missed a lot of school and college, and had a lot of trouble finding a doctor to take her seriously. Things have improved on that front, but I would say it is essential that you are treated by someone who has no doubts. Someone going through the motions is not going to help you a lot.

In terms of treatment, my Ex did an excercise with her diet which cut out just about everything, then gradually re-introduced foods to see what made her worse. She ended up reducing sugar to a minimum (and in fact took tablets after meals to help destroy sugar in her stomach). and cutting out Yeast completely. These were the two key foods which caused her problems, but it can vary person to person I think. With those changes she gradually got back to normal to the point where she could work in retail managment - which we all know is pretty demanding energy wise.

You need to change mindset from "excercise increases stamina" because that will will not work right now. Focus on the important things and invest your energy in those. Things will improve, as hard as it may be to get your head round that at the moment.

Good luck.

Ahh thanks, I actually have a very limited appetite at the moment so I'm just eating what I want when I can (unusual position to be in) It has resulted in a hefty weight loss in a short amount of time which probably doesn't help energy wise. I'm just doing very basic things at the moment but even that's a chore most days. I'm just waiting on my Doctor to come up with a plan of 'action' at the moment. At least she is taking it seriously, as , like you say some Doctors don't even recognise it as a condition although I believe it is getting better across the board.

[Trav Le Bleu]

I once read something which described having ME as feeling like you have the worst flu of your life and are trying to run through treacle. Every day. So not really like being a teenager.

Yes, I know. And some people have a tiny sniffle and go around saying "oooooh, I've got the flu, woe is me, I'm dying!" whilst others get the flu and soldier on regardless (before ending up in hospital - since that's likely to happen if you ignore the symptoms of proper influenza.)

You also get some people who laugh in the face of adversity and others that are sooo serious that they could lick their own tonsils through their anus.

I wasn't making a judgement call, I was making a joke.

[Finnegan]

I used to have two friends with ME, both from different circles it was odd.

Both were fairly private and fairly quiet about it so I don't have much to contribute other than my friend Pat was house-bound through a lot of his latter teens but seemed to get better and better and eventually he even went off to Uni and seems to be living pretty unrestricted.

So, like others have said, it might not be treatable but people do seem to improve?

[General Smuts]

I believe a lady on my old paper round had ME. She used to smoke a butt load of medicinal weed though and i got a lovely christmas tip

Either way Katy. Stay away from Red Bull and get well soon.

Hugs and Kisses

Smuts

-x-

[Guest Bilo]

All the best Katy.

It seems there are a lot of people with knowledge of this, so follow it and you'll be fine!

[Guest]

A mate of mine missed a year of school because of ME. She came back, did really well in her A levels, went to Uni and had an almost normal student life!! I believe the trick is to learn to know your body, and to listen to the warning signs and heed them. A rest may be inconvenient, but it's better than being out of action for even longer when you had the chance to prevent it!!

[Zingari]

another name for it is idleitis

http://www.urbandictionary.com/define.php?term=idleitis

i am only joking

[ozleicester]

I have a friend who also had it during the teens, and has been stated in the thread earlier they have managed to overcome it and maintain a normal life.

Good Luck with it Katy