I have only had CFS for around 9 months but am already at my wits end. It was bought on by Glandular Fever and although the flu symptoms have diminished (although they do return every 3 weeks when I inevitably get whatever cold is going round). I am 16 and doing full time A levels at college, 5 days per week. I am also trying desperately to get a part time job to support myself. Prior to having CFS I had so much energy, I got so much work done in a flash and was always exercising, walking, running, playing sport etc. (My passion is horse riding). I also write a lot, and was working on a novel. Since being diagnosed with CFS, The amount of time and effort used up for me to perform the simplest of tasks is insufferable to me. I have suffered with depression for three years but it was always aided by productivity, wether it be writing my novel, writing an essay, cleaning out my pets' cages, drawing, painting, etc. Now I can do physically nothing. Has anyone else's life been ruined like this? I go to sleep at 8pm and wake at 7:00 am, feeling absoloutely shattered. No amount of sleep refreshes me. My head feels as though it is going to implode, like a pressure build up that causes me to cry a lot out of sheer frustration. The writing content I could produce in an hour to a brilliant standard now takes me days and days. Words are blurred on the page and I can't focus on them. At college I fall asleep in lessons and have to take time out to walk in the fresh air in order to wake myself up. I'm also always hungry, but food (although it improves my mood) gives me no energy whatsoever. I've gained about 6 lbs which doesn't seem much, and still means that I am a slim, healthy weight but to me it is really demoralising. I get exhausted after the smallest of exertions and am so busy with tasks to do, yet can only do a maximum of two things a day. All I want to do is sleep yet sleep doesn't help. My muscles always feel as though they are scrunching up and the worst part is that no-one takes a teenager with CFS seriously. My teachers think I stay up all night on games, they couldn't be more wrong. Even whilst writing this at only 10:37 am my eyelids feel like lead and I want to cry and sleep. Is anyone else feeling this way? I just want my old life back. Has anyone tried antidepressants to assist CFS? I used to take 2.5mg of Fluoxetine daily and I would be happy to do so again if I thought it might even give me the slightest bit of energy or lift the fog in my head. Has anyone had success with any other things? x
At my wits end with CFS: I have only... - Myalgic Encephalo...
At my wits end with CFS
Hi SherilynWileman. I understand how you feel - I went from doing a diploma, working full time, teaching music and a few other hobbies to...sitting around dozing all the time.
It has been a hard adjustment for a man in his 40's God knows how much more difficult you would find it!
I have spoken with the top Dr on ME in the UK and the advice he gave that helped was:
1) Gluten free diet, (watch out for barley sneaked into just about everything!).
2) Dairy free diet, (watch out for milk powder sneaked into everything).
3) Omega 3 oils.
4) Get Vit D checked as it is low in ME sufferers and needs to be addressed if low, (can cause low mood low energy).
5) Pace yourself - conserve energy for the most important things.
6) Meditation twice a day - helps with the anxiety and low mood while giving good rest.
7) Rest properly - watching TV or surfing the net is not rest - you must lie down and do NOTHING! (which admittedly can be quite hard to do).
That should have you noticing a difference in a couple of days. it's not going to cure you but it can help quite a bit.
Take care and know there is some exciting research going on that may produce good results in the near future.
great advice. I have had m.e 24 years and through research found all of those work great. Transdermal magnesium or epsom salt baths or just footbaths are excellent.
Raffs, who is that expert. I was lucky to be diagnos by m.e expert in 1992.
he was a peadiatrician who found children with it and then helped out adults.
Thing i have noticed that whenever a doc etc gets m.e symptoms they always then go on a crusade to find a cure !! Which helps all of us.
It was Dr William Weir, based in Harley St, London, but I saw him in Belfast:
Thank you so much for sharing that info and for the interesting link. Ive been wondering about going gluten free (im already dairy free).
Hi Sherilyn.
I'm sorry to hear you are having such a bad time. Being a usually active person and then having CFS is incredibly frustrating, and it is extremely difficult to make anyone understand how you are feeling.
Instead of fighting it, for the moment, you need to accept it and try and slow down. I highly recommend learning meditation and/or self hypnosis (there are some good apps around). You have to start listening to your body and taking more rest, and when you do feel that you can do something, do LESS than you think you can.
The weight thing is difficult. I never used to have problem with weight as I was very active, but after I got CFS in my 40s, I suddenly started putting on weight because I stopped exercising. So it's something you have to adjust to. Eat healthily - it can help improve you energy levels anyway, and eat a bit less than you are used to. But it's not a good idea to completely give up exercise. Do a little bit every day, but only what you can manage, and take rest afterwards.
I would suggest joining the ME Association. They send out a monthly magazine - which you could perhaps show to your teachers.
I know how you feel about wanting your old life. But it's important that we look forward instead of back. You need to adjust to your new life. It may be temporary - and you can - and will - feel better in time if you work with your condition instead of against it.
Whatever you do, don't stop writing! I am also a novelist. It takes longer to write these days, but I have self-published two books in the last few years, and am working on more.
All the best
Ros
ME/CFS is really nasty I have known many people who suffer like you. It is going to require real guts to do what you want to do with your life, at the moment the only solution is to manage the disease. Different people have found different ways of doing that so I wish you well in the quest you are about to embark on. I would however advise you to join the ME society and also to write to your MP may help this is how you find him/her parliament.uk/mps-lords...
He will have a facebook page and as Cameron is keen all MP's take an interest in a medical condition you can find out what his interest is from his/her facebook page quite easily a bit of research and you can taylor my e-mail and send it to your MP..
mine read as follows:
"I know of your interest in Dementia and your support for on-going research in the causes. It is a disease which now in its various forms is well recognised but the causes are little known and when discovered sometimes surprising as for example the relationship between stomach bacteria and Parkinson’s disease.
As you know there are an estimated 850,000 sufferers of dementia in the UK, and indeed it is great to see that the disease is being recognised and addressed more widely by better management and research.
There is another disease like dementia which receives similar treatment and has similarly been ignored and disdained by the medical profession.
That disease is known by a number of names ME, CFS, and combined ME/CFS being the most commonly used. It is estimated that about 250,000 people in the UK suffer from this disease, though some estimates put it nearer one million. The cost to the UK economy of this disease, because many sufferers are usually of an above average IQ and in the 30-50’s, has been estimated at £250,000,000 per annum, simple maths would put this on the low side…
It is however great news for sufferers that in the US this disease is at last receiving official attention.
This video will give you an update of what is happening in the mainstream US health service
regards,
name + address.
Quote: "Has anyone else's life been ruined like this?"
Is that a trick question?! Google Whitney Dafoe, Lynn Gilderdale, Sophia Mirza, Emily Collingridge and Karina Hansen, just to name a few. They're just the ones who've been publicised; there are a further approx. 60,000 people in the UK alone (including me) who are very severely affected with this disease, languishing on their deathbeds, left to rot by the so-called 'health' professionals. The best thing you can do, after looking up how bad this disease can get and becoming more informed of its political history, is to STOP pushing yourself to carry on/do more, in order to prevent your condition from WORSENING. You cannot fight this illness by trying to carry on with daily life as it was before you were I'll, you'll just run yourself into the ground. As bad as you feel right now, believe me when I tell you that it can get a BILLION times worse, and the best thing you can do is take precautions NOW to ensure that you don't deteriorate to the point that you are bedridden and require a wheelchair.
Invisible illness, mini 'CFS' documentary - youtu.be/9_HwOUiImvw
Forgotton Plague trailer - youtu.be/VsQcmKT3zSo
cortjohnson.org/forums/thre...
I also highly recommend you join ME Action - meaction.net, and take a look at hfme.org.
Big (((hug)))
I got ME when I . Was 17. Back then. There was. No diagnosis. Just was told I was sick in head. And to keep pushing. Whatever you do do. Not keep pushing.
I managed to get. A levels (v poor grade) and a degree. And managed to work a few years part time after that... But various things have. Happened recently and I am now housebound
I really. Feel for you. .. I a, so glad you.nwere diagnosed early . Now you can try. To repair and hopefully one. Day you can be almost better. I managed to get back to 70 percent fitness at one point (I like you was sporty and always on the go) but keeping pushing myself I think has damaged me.
Big big (((hugs))) I know exactly how you feel it is so horrible when it strikes so young and it always seems like vibrant people always on the go it hits. Never hits lazy couch potatoes it seems who would love to spend all day in bed 😣
I hope this makes sense. Not too well just now
Big (((hug))) again
♥️♥️♥️
CFS Clinics, Gluten, Thyroid
CFS & pregnancy/ labour
Warning signs that you are over doing it with CFS
Interesting article on ME/CFS
Two important studies link ME/CFS to changes in the gut microbiome