Chronic Fatigue Syndrome/M.E. Society

Hi everyone,

Having real problems at the moment. I'm so tired and I'm freezing cold all the time. My headaches are at their worst and I've got nothing to stop the pain. My legs have become very stiff and painful and can go completely numb from the knees down. I am also severely underweight, I had an appointment this and my BMI is only like 16.9, I need to try and get it up but I've got no appetite.

Hi everyone,

Having real problems at the moment. I'm so tired and I'm freezing cold all the time. My headaches are at their worst and I've got nothing to stop the pain. My legs have become very stiff and painful and can go completely numb from the knees down. I am also severely underweight, I had an appointment this and my BMI is only like 16.9, I need to try and get it up but I've got no appetite.

I would because being in Kent there doesn't appear to be many societies and meet ups, they seem to be more in Sussex according to the M.E newsletters I get.
Be nice to see what has actually helped people to cope better or even get over it as such.

Have you tried (neurological / neuromuscular physio)?

x
just started to try going gluten and dairy free, as I've read some fairly positive feedback online about dietary changes. Hope others here are keeping well, as I'm slowly realising there's so much to keep on top of to try and get everything at least slightly in balance...!

Thanks for your advice - I have since been through a couple of consultations with a neurologist at the National Neurology Hospital for my fasiculations. I've had an EMG and a few other tests to rule out any more sinister neurological conditions. They have diagnosed my muscle twitches as Benign Fasiculation Syndrome - seems to be a catch all term for ongoing muscle fasiculations not linked to more serious degenerative neurological issues.

From what I have read online, there seems to be lots of crossover between those having issues with this condition, often starting with a viral/stress trigger, and chronic fatigue symptoms. After several more appointments with my GP, I've finally been referred for an assessment CFS/ME Service at Barts Hospital for my fatigue - just wondering if anyone else has experience of the Barts programme, or has been through the assessment with them?

I've also recently completed a CBT course for my anxiety problems which have come with all of this, and just started to try going gluten and dairy free, as I've read some fairly positive feedback online about dietary changes. Hope others here are keeping well, as I'm slowly realising there's so much to keep on top of to try and get everything at least slightly in balance...!

Hey

I've had CFS for around 20 months now but I've been working with a homeopath for the past couple months which I think is helping but it's obviously not a quick fix. I got accepted into uni today to do a foundation year (to avoid the strain of going straight into the main course) and I was wondering if I'm an idiot for even considering getting a part time job?

I already know that nights out are going to be a rare thing for me because staying up past midnight guarantees that my auto-immune skin thing will flare up but I'm definitely going to join the snowsports club. I love snowboarding and haven't been able to since getting diagnosed which is **** buuuuuut I'm hoping the discounts from being a member will make it easier for me to just go and not feel guilty about stopping and taking breaks (because of the money waste).

What I'm thinking though is that even though the foundation year will be easier than a normal first year, do you guys think that getting a job on top of the snowboarding will be too much? I'm just worried about costs :/ I've got my DSA interview next week but I'm only going to ask for transport money (taxis) for the days where I wouldn't be able to go to lectures etc. without one because of an energy low. My parents earn too much for me to get anything except a loan but I don't exactly want to be taking more money from them than I do already (they've insisted on paying my fees,~£3k cause I'm Welsh, but they also pay £30 monthly for my homeopath and have said they'll pay my phone contract ~£10-15 a month). We've been in the process of moving house since February though and I know that's a massive drain on money for them so again, I don't want to be taking any more.

Have any of you managed to cope with a job as well? Should I just forget it? Thoughts?

Go you!! Seems you are on track and know what your limits are and going for what you want. Maybe do something part time for the short term and see how you feel. I wish I was where you are. But I keep having setbacks Good luck and best of luck.

Thanks Yeah I still get setbacks every now and then which is annoying but expected from what I've seen and heard from other people. I just don't want to screw myself over by doing too much. I might try a job but make sure the employer knows about my CFS/ME and hopefully they'll understand if I can't cope but idk I'll see how it goes I guess x

I had to quit my job as they couldn't work round my diagnosis and now that I've diagnosed with fibro and HyperMobilty syndrome I need to more careful on what I do with my life and work balance

Yeah my main concern is keeping life/work/uni balanced without making myself ill but I'll definitely keep it in mind, thanks x

Be sure to keep everyone informed and get the right support. Surround yourself with understanding people and join a few social groups that reflect your wants and needs always have here as a back up!

Will do, I made the mistake of trying to keep it quiet but I'm taking uni as a fresh start with new people. How many negative experiences did you have with telling people? I'm thinking I should probably tell my flatmates as soon as we move in so they understand I'll have odd/varying socialising habits and not to take offence buuut I'm nervous that some of them might be idiots/immature about it. Thanks! x

I think it would be a good idea to tell your flatmates so they can understand. I never told anyone I was ill so they all thought I was some sort of anti social weirdo. When people actually realised I was unwell they were a bit more understanding.