Chronic Fatigue Syndrome/M.E. Society

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Quiet _One86
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#381
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#381
(Original post by DollyMaii.x)
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.
Have you had the docs refer you to any specialists, and have you look at Fibromyalgia! I have had this confirmed to be the case when my joints and pains were coming from there, and getting stiff and painful.
Try to eat something, even if its just a piece of fruit and keep hydrated and this should help to keep the cals up even if its just from fruit sugars.
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TSRuserrr9
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#382
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#382
(Original post by DollyMaii.x)
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.

Im the same!!!CONSTANTLY freezing unless i wrap up extra warm (on a hot day like today)...the leg pains are awful but even if it hurts,just take some iburufon and try do some mild physical activities.

With me ,i find that the more i push myself,the harder it physically feels and iv started to get pains around my waist ; however the mental aspect of it makes me feel fantastic !I get a sense of satisfaction that iv overcome the pain (when really all i did was find a distraction,to help me sort of 'ignore ' the pains and extreme exhaustion)
Also,i dont know if anybody else feels like this ;but when it gets to the point where i physically cannot do anything -it gets me reaaaally stressed out-so i use prayer as a source of relaxation and 'time to rest'...
im really struggling at the moment though as iv not let myself rest recently and have been trying to do many things.

tbqh i DONT want to rest the thought of not being able to do the maaaaany things iv planned this summer is uber depressing..has anyone got any advice i.e in terms of over counter drugs?
my treatment doesnt start until late august and my GP and homeopath are slightly rubbish 😒
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DollyMaii.x
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#383
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#383
Thanks everyone, the Ipad isn't letting me quote for some reason :/

Quiet One- I see a specialist consultant and nurse at the moment, I have also been seen by physio, occupational therapy and psychology. I am waiting to be seen by a headache specialist too but I don't know when that will be.
I have looked at fibromyalgia, my pain is quite severe at times but I am wondering if this is just from the weight loss.

TsR Userr- I toy physical activity but it makes me feel so weak and dizzy. I can manage to get around the house and can take a gentle walk for like 10 minutes or so but that's it. I heard that the codeine nurofen is supposed to work well but I think it can only be taken for three days.

Im im worried they will put me in hospital if I lose anymore weight, my weight percentage has already put me in the malnourished category and it doesn't seem to be going up :/
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Quiet _One86
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#384
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#384
(Original post by charla)
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.
Hey there, I believe there's a few in Kent, whereabouts are you? Check this link, see if it helps:
http://www.meassociation.org.uk/2009/09/kent/
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Anonymous #5
#385
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#385
I have been diagnosed today with possible Fibro and JHMS, and so I guess I have to get used to a whole new way of dealing with my ME, as the two are very closely linked, will be going for tests and such like to see how best to treat or ease the symptoms and pains. Hope you can get sorted soon and that the weight issue gets resolved and eased [http://www.thestudentroom.co.uk/member.php?u=1242489].
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Quiet _One86
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#386
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#386
I have been diagnosed today with possible Fibro and JHMS, and so I guess I have to get used to a whole new way of dealing with my ME, as the two are very closely linked, will be going for tests and such like to see how best to treat or ease the symptoms and pains. Hope you can get sorted soon and that the weight issue gets resolved and eased [http://www.thestudentroom.co.uk/member.php?u=1242489].
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sufjan
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#387
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#387
(Original post by Foo.mp3)
Have you tried (neurological / neuromuscular physio)?
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...!
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Quiet _One86
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#388
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#388
(Original post by sufjan)
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...!
Well done you getting all the right treatment and followups with specialists, I have seen a rheumatologist, neurologist and CFS specialists. For me they are testing me for Fibromyalgia, and JHS (joint hyper-mobility syndrome)..I am going for a whole body scan with a dye tomorrow, and had bloods and routine tests to check for normality before doing other tests.

As well as that for myself I have also gone dairy and gluten free, which has helped a little with digestive uncomfortable reactions and sensitivity. I am hoping that also keeping a food diary very useful. I have found Sainsburys #1 for finding the alternative foods if you're looking for good stocks of cutting out these two. I rate their brownies, if you like having a chocolate fix.

Thanks for the detailed reply to this board, and good luck with everything.
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DollyMaii.x
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#389
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#389
(Original post by sufjan)
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...!
hello there

is that the national neurology hospital in London? I have been referred there for my headaches and I am waiting for an appointment, how did you find it?

I don't go to Barts hospital but I use there programme at my specialist in London. Like another poster said it is mainly there GET trial and CBT but I found their GET booklet quite useful.

I am in so much pain at the moment, my headaches are terrible and give me blurred vision and nausea. I get stabbing pains and numbness in my legs too which is not pleasant. I am continuing to lose weight for no reason at all and just seem to be getting more and more ill. I'm supposed to be starting Uni in September but at the moment I really don't feel up to it
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asellus
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#390
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#390
My brother had CFS that was awful - it was because of psychological reasons. He still can't resolve and no one treatment is helpfull(((
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flyyoufools
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#391
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#391
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?
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Quiet _One86
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#392
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#392
(Original post by flyyoufools)
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.
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flyyoufools
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#393
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#393
(Original post by Quiet _One86)
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
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Quiet _One86
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#394
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#394
(Original post by flyyoufools)
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.


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flyyoufools
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#395
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#395
(Original post by Quiet _One86)
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
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Quiet _One86
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#396
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#396
(Original post by flyyoufools)
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!


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DollyMaii.x
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#397
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#397
Hi everyone

Haven't posted on here for a while. I'm really not very well I don't think, my headaches are terrible, I've got blurred vision with them. I have stabbing pains in my legs and then they just go completely numb. I've lost a lot of weight, my bmi is only around 16.3. I've been to the doctor and she prescribed me pregabalin but like all other medications I've tried so far I don't think it will work. My blood pressure has dropped I think this is probably to do with the weight but she didn't seem that bothered. My consultant is away now so I can't tell her either.

Im worried because I'm starting Uni in September (staying at home) and I really need to get better so I feel up to it. I worry about missing days for appointments, does anyone else have this problem? Do you get someone else to get missed work or information for you?
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flyyoufools
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#398
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(Original post by Quiet _One86)
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
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DollyMaii.x
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#399
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(Original post by flyyoufools)
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.
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flyyoufools
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(Original post by DollyMaii.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.
I will do just that working up to it will probably be worse than the actual doing it >.< I'm hoping they'll be understanding but I've had negative/ignorant reactions from some people already at school which put me off telling other people but it indirectly wrecked a lot of things for me so I've learnt from it x
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