Chronic Fatigue Syndrome/M.E. Society

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.

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

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

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. 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.

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.

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
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.

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
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.

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.