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Chronic Fatigue Syndrome/M.E. Society

Hey!
This thread has become the root thread for the All about M.E society! any one currently suffering with Me. know some one who is, or is just curious to know a little more about M.E and Chronic fatigue. is welcome to join the discussion
ME stands for Myalgic Encephalopathy (My-al-jik En-kefa-lop-athy)

The term Myalgic Encephalopathy indicates the pain in the muscles, neurological problems and general suffering that accompany this illness:

Myalgic: Greek origin meaning muscle :s-smilie:

Encephalo: Greek origin meaning brain :confused:

Pathy: meaning suffering or sickness :eek:

There is no known cause of ME as yet, although in young people it most commonly follows persistent viral infection. It is often referred to as Chronic Fatigue Syndrome (CFS) or Post Viral Fatigue Syndrome (PVFS).
There is no predictable pattern to ME/CFS. The profusion of symptoms can be confusing and alarming and symptoms can fluctuate greatly over short periods of time. with symptoms lasting from 18 months to several years. and in some cases sufferers never reach full recovery and too date there is no known medical 'cure'

Symptoms
Fatigue: Utter exhaustion, often to the point of collapse, totally different from the normal tiredness healthy people experience. Fatigue levels fluctuate over the day and are different from patient to patient. Pallor of the skin may be evident when fatigue is worst. If standing, some patients may need to sit or lie down very quickly wherever they are. Many patients experience post-exertional malaise (the delayed onset of fatigue) after too much activity. Persistent fatigue must be present for a diagnosis to be made but is not always the worst symptom.

Pain: Anywhere in the body but particularly headaches and intense muscle and joint pain, especially in the lower limbs, which is usually difficult to relieve with standard painkillers. hyper sensitivity: skin contact causes intense sensations of Pain .Skin sensations such as skin crawling and pins and needles may be felt.

Cognitive impairment: Poor short- and medium-term memory, mental confusion and mental fatigue; the brain seems to run out of steam. Difficulty concentrating, word-finding and thinking. Inability to plan. These symptoms together are commonly called 'brain fog'.

I have Lived 7 years diagnosed and according to national statistics up to 1 in 2000 young people in the uk have been diagnosed or are in the process of diagnoses. but in 7 years I have never Met a single Person My age with the illness.
is there anybody else out there? :eyeball:

for more info Check out AYME
http://www.ayme.org.uk/article.php?sid=10&id=58

(edited 14 years ago)

Reply 80

pippinx

does anyone else go to see dr perrin? or anyone who uses his treatment programme?

and does anyone else get disability living benefits? i know a few people do at uni but what about just in general? x

Reply 81

StandingOnAir

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 :smile:

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.

Thanks, that's good to know. : )

What made you decide to cut down on sugar and yeast? I've tried going without dairy, meat and wheat at different points, but none of them helped a huge amount - dairy made the biggest difference but I hated living without it, and it didn't make enough of a difference for me to be willing to give it up permanently.

Glad to hear you're doing a bit better, anyway!

Reply 82

Blink.

Cheers

It was my mum's idea haha, she was browsing through some of the M.E. forums and people were saying it helped them, so I give it a try. Lost a few pounds to boot!

Reply 83

fredscarecrow

18

Hey guys, how are people doing?
I've been put on Gabapentin now [100mg a night, but with room to go up to 300mg a night] for the pain - anyone been on this before? I'm glad to be off the amitriptyline because even on 10mg every other night the sedative was too horrible on top of my usual exhaustion. The Gabapentin is making me dizzy =[ but I'm going to give it a while to settle.

Reply 84

Addnightshade13

OP

5

hey havent been, on here for a while,
mid way up out of the mother of all relapses.
Fredscarecrow, if you feel ur up to it stick with the Gabapentin at the 100mg i was on it for a while, and found it really effective once your body has built up a little resistance to it, -ve effects decrease. another med that has been really helpful for neuropathic pain has been pregablin. like Gaba its was developed in the treatment for epilepsy. but it works as a good buildup drug to counter chronic pain.
im thinking of starting an individual thread for treatment info... if i haven't already... cant really remember. but anyway I hope you are all doing well

Reply 85

fredscarecrow

18

Addnightshade13

hey havent been, on here for a while,
mid way up out of the mother of all relapses.
Fredscarecrow, if you feel ur up to it stick with the Gabapentin at the 100mg i was on it for a while, and found it really effective once your body has built up a little resistance to it, -ve effects decrease. another med that has been really helpful for neuropathic pain has been pregablin. like Gaba its was developed in the treatment for epilepsy. but it works as a good buildup drug to counter chronic pain.
im thinking of starting an individual thread for treatment info... if i haven't already... cant really remember. but anyway I hope you are all doing well

At least you're on your way up and out :yep:

Hope you're feeling better soon.
I'm on the Gabapentin still (300mg a night) and really like it. The first two days of upping the dosage are the worst, after that it's fine. I slur my words a bit now though =/ but not too noticably. The doctor says it's not unusual! But I'm so much clearer in the head than on the amitriptyline and the pain really is helped.

Reply 86

Missymonkey

pippinx

does anyone else go to see dr perrin? or anyone who uses his treatment programme?

and does anyone else get disability living benefits? i know a few people do at uni but what about just in general? x

I know a few people who have seen him. They felt bad for 2 weeks after and then their symptoms improved a tad but then went back to how they were. I think it just depends on the person if it works or not. I find massages really help me, and that's sort of what the Perrin technique does

I'm new to TSR so don't know if this is how you do things, but I read a few CFS/ME blogs online & found a few who are written by young people. there's http://cfs-blog.blogspot.com/ and also http://otherdumbquestions.blogspot.com/ that are quite gud.

Reply 87

Mayden

14

Hey guys, I feel a little bit intrusive and I haven't read over the entire forum, but can I ask for all you nice people out there to let me know how you managed to get the diagnosis?

I'm struggling to get a diagnosis for this, my doctor shrugs me off (going back on Thursday!) My councillor is being silly and not replying often enough, telling me to go for MORE blood tests, and my psych guy is just lame. So ANY info would be much appreciated :smile:

Reply 88

username165223

For me, it was basically a case of multiple blood tests and anything else the doctors/hospitals could be bothered to check for and then slowly rule out everything.

Reply 89

Missymonkey

There is no specific 'test' for CFS/ME. I had Glandular Fever and didn't recover from it- I was diagnosed with CFS 2 years after having GF. I had lots of blood tests to rule out anything and then went to an Infectious diseases specialist who diagnosed me. If you're not getting anywhere with your doctor, go see another one and don't be afraid to ask for a referral.

Reply 90

Mayden

14

Missymonkey

There is no specific 'test' for CFS/ME. I had Glandular Fever and didn't recover from it- I was diagnosed with CFS 2 years after having GF. I had lots of blood tests to rule out anything and then went to an Infectious diseases specialist who diagnosed me. If you're not getting anywhere with your doctor, go see another one and don't be afraid to ask for a referral.

Thanks, I'm pretty worn out from being shrugged off from one person to another with them just saying it's depression/anxiety that is making me tired. Yes I understand that makes me tired, but I can't do anything! I'm going to bed after this and I've eaten my yummy tea. I just can't stay awake, I'm exhausted all the time. :frown:

My bloods have been normal, I'm not diabetic, etc. I've had 'the works' done before and everything is fine. Feeling very frustrated about it all at the moment. Going to see my GP on thursday and I might just cry if he shrugs me off again, I'm so worn out by it! I can't recall having anything to 'trigger' it - but I've been getting increasingly more tired, to the point I'm almost dropping out of college, for about 5 years now. &I've had pains, sensitivity to light, headaches, etc. I thought they were all just inconvenient and I'm just unlucky! But hopefully this all works out and I can get a real diagnosis instead of 'Its just life' from my doctor. :mad:

Reply 91

fredscarecrow

18

Mayden

Thanks, I'm pretty worn out from being shrugged off from one person to another with them just saying it's depression/anxiety that is making me tired. Yes I understand that makes me tired, but I can't do anything! I'm going to bed after this and I've eaten my yummy tea. I just can't stay awake, I'm exhausted all the time. :frown:

My bloods have been normal, I'm not diabetic, etc. I've had 'the works' done before and everything is fine. Feeling very frustrated about it all at the moment. Going to see my GP on thursday and I might just cry if he shrugs me off again, I'm so worn out by it! I can't recall having anything to 'trigger' it - but I've been getting increasingly more tired, to the point I'm almost dropping out of college, for about 5 years now. &I've had pains, sensitivity to light, headaches, etc. I thought they were all just inconvenient and I'm just unlucky! But hopefully this all works out and I can get a real diagnosis instead of 'Its just life' from my doctor. :mad:

Honestly, get a new doctor if he doesn't help. It's not life- well, it is for us - but it's not normal. I was told by doctors that it was just because I was a teenager who was slim, and a hospital heart 'expert' said I needed to do yoga.
Finally coming to uni has given me a doctor who actually listens and cares. Not that it's an easy ride from here - we still have to fight with the NHS every step of the way, or so it seems, but i'm on pain meds which makes the world of difference, though we're stuck on the exhaustion which is annoying.
Keep pushing, and don't let them fob you off. Unfortunately we all go through it. =[ Hopefully you don't have ME, but if you don't, it's something else and they need to do more than just blood tests and ECGs.... [imo]
I want a brain scan, but there's no way I'll get one on the NHS and I can't afford private.

Reply 92

Mayden

14

fredscarecrow

Honestly, get a new doctor if he doesn't help. It's not life- well, it is for us - but it's not normal. I was told by doctors that it was just because I was a teenager who was slim, and a hospital heart 'expert' said I needed to do yoga.
Finally coming to uni has given me a doctor who actually listens and cares. Not that it's an easy ride from here - we still have to fight with the NHS every step of the way, or so it seems, but i'm on pain meds which makes the world of difference, though we're stuck on the exhaustion which is annoying.
Keep pushing, and don't let them fob you off. Unfortunately we all go through it. =[ Hopefully you don't have ME, but if you don't, it's something else and they need to do more than just blood tests and ECGs.... [imo]
I want a brain scan, but there's no way I'll get one on the NHS and I can't afford private.

I got referred to a CFS clinic in Bolton... which is two towns away, but only a town away from my college! So not too bad - brilliant actually considering I thought it would be a super long hard battle to get any form of diagnosis/support, like I did for depression. My back pain isn't too bad generally, I'm not crippled by it, it's just an, hm, intense discomfort? Hah. It's the tiredness that really gets to me, I can do nothing, I used to be such an active person. :frown:

Why is it that you want a brain scan? Don't you think you've got ME?

I'm very pleased with the outcome of that doctors appointment, and college have jumped on board with support today too! It's looking it it seems :smile:

.... Now off to bed! :cool:

Reply 93

fredscarecrow

18

Mayden

Why is it that you want a brain scan? Don't you think you've got ME?

I just don't feel like it's been explored enough. I've got all the symptoms, but then joint pain, exhaustion etc can be the cause of a lot of things.
I just feel it's too easy to go 'oh we can't find anything wrong from blood tests etc' it must be ME.

Don't get me wrong, I truly believe in ME and it's sufferers, I just worry that it can be used almost as an excuse...that's not the right word, but I don't personally feel like my doctor has excluded everything :p:

You're meant to have ME when they've excluded everything else. Unless I get brain scans etc etc, I don't feel like we've got to that diagnosis correctly.
I mean, what if I get 20 years down the line thinking I have ME and then finding out I had some kind of benign brain tumor that could have been nipped in the bud, or a swilling under my spine where you can't see it from the skin....
my medical knowledge isn't good, but do you see what I mean? ME is so awful, that I want to know for certain it's what I've got and that it's not something which can be 'cured'. If I found out years down the line thatg I didn't have to suffer like this, I don't think I'd forgive myself or my doctors. Same goes for if it's not ME and it gets worse and past treatment, whereas it could have been treated at this age. I dunno.

Reply 94

username165223

fredscarecrow

I just don't feel like it's been explored enough. I've got all the symptoms, but then joint pain, exhaustion etc can be the cause of a lot of things.
I just feel it's too easy to go 'oh we can't find anything wrong from blood tests etc' it must be ME.

Don't get me wrong, I truly believe in ME and it's sufferers, I just worry that it can be used almost as an excuse...that's not the right word, but I don't personally feel like my doctor has excluded everything :p:

You're meant to have ME when they've excluded everything else. Unless I get brain scans etc etc, I don't feel like we've got to that diagnosis correctly.
I mean, what if I get 20 years down the line thinking I have ME and then finding out I had some kind of benign brain tumor that could have been nipped in the bud, or a swilling under my spine where you can't see it from the skin....
my medical knowledge isn't good, but do you see what I mean? ME is so awful, that I want to know for certain it's what I've got and that it's not something which can be 'cured'. If I found out years down the line thatg I didn't have to suffer like this, I don't think I'd forgive myself or my doctors. Same goes for if it's not ME and it gets worse and past treatment, whereas it could have been treated at this age. I dunno.

That makes a lot of sense to me. I think sometimes you just have to be stubborn with the doctors, yes they are the experts but it is your body and your life and if you feel unsatisfied with what they are saying and they aren't really doing that much, demand more. Since being diagnosed, I've learnt you have to be a bit more selfish and put yourself first a lot more.

Reply 95

Mayden

14

fredscarecrow

I just don't feel like it's been explored enough. I've got all the symptoms, but then joint pain, exhaustion etc can be the cause of a lot of things.
I just feel it's too easy to go 'oh we can't find anything wrong from blood tests etc' it must be ME.

Don't get me wrong, I truly believe in ME and it's sufferers, I just worry that it can be used almost as an excuse...that's not the right word, but I don't personally feel like my doctor has excluded everything :p:

You're meant to have ME when they've excluded everything else. Unless I get brain scans etc etc, I don't feel like we've got to that diagnosis correctly.
I mean, what if I get 20 years down the line thinking I have ME and then finding out I had some kind of benign brain tumor that could have been nipped in the bud, or a swilling under my spine where you can't see it from the skin....
my medical knowledge isn't good, but do you see what I mean? ME is so awful, that I want to know for certain it's what I've got and that it's not something which can be 'cured'. If I found out years down the line thatg I didn't have to suffer like this, I don't think I'd forgive myself or my doctors. Same goes for if it's not ME and it gets worse and past treatment, whereas it could have been treated at this age. I dunno.

Completely understand, it's your life and you don't want to be kicking yourself years down the line for something you 'could' have done. I'm going back to bed now, but if I don't speak to you anytime soon, I wish you luck on getting the scans and whatnot!

Reply 96

billy6718

2

My mum has had it for about 2 years, its hard for me to understand it but it try, things have changed a lot over the last 2 years.

Reply 97

fredscarecrow

18

billy6718

My mum has had it for about 2 years, its hard for me to understand it but it try, things have changed a lot over the last 2 years.

It must be hard. It's strange, when you're suffering from it [or I suppose any other long-term condition] it's hard to imagine how it affects the people around you, but I can't imagine it can be easy.
I feel sorry for everyone else because I have this awful temper. Whenever people are surprised when I snap, I have to remind them that they're prety grumpy if they get woken up early or have a bad night's sleep...imagine being that tired, plus in pain 24 hours a day. That'd make most people pretty snappy I think.

Reply 98

kimichi

I was lucky, my diagnosis was fast tracked because I developed symptoms about 2 years after my Mum had been diagnosed - after having it most her life and not realising anything was wrong. Does anyone else have family with ME?
I agree with the theories of stress triggers and cortisol/adrenaline overproduction in the body. I get a bit annoyed when people say it's only connected to viruses and infections, as that doesn't really link up to my past!

Reply 99

fleur de lis

15

Hi guys,

Just checking in as societies have now evolved into social groups with the update. You can see your group page here: http://www.thestudentroom.co.uk/group.php?groupid=792

Unfortunately neither of your current group leaders are active. Does anyone want to volunteer to be a leader?

Chronic Fatigue Syndrome/M.E. Society

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