jo90077 years ago

Hey Megan, I'm so sorry to read about how unwell you've been feeling.

I got my diagnosis around 4 years ago after over 10 years of symptoms and tests with no answers.

Half days seem like a good place to start so you can bank your energy a bit and a diagnosis will hopefully help your school understand how to support you with your education.

I think it's great you've reached out to the community, it's really useful to find some people who really 'get it'. Hang in there.

Jo

Louise678 in reply to jo90077 years ago

Hi jo

Thanks it's getting quite frustrating for me as I'm ussally really enhetic and sporty and alway on the go and doing stuff with friends. Has they been any treatment that has helped you? My parents think it's m.e so we're trying to get a diagnoses. Hopefully the half days will be good and really help. What have been your experiences with m.e? My parents try to understand but I've Been taking my anger out on them. Thanks

Megan

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jo9007 in reply to Louise6787 years ago

Hi Megan, i can relate to what your saying, mine hit after glandular fever in my early twenties. Stopped me working for a number of years.

My doctor told me to take exercise, good nutrition, lots of natural whole foods and bank energy. That means being choosey about activities. We just can't do everything. I found I had a number of food intolerances which were affecting digestion and immune response.

Exercise wise that wasn't easy, fatigue is a battle and body gets sore but it definitely helped. Physically and emotionally and psychologically - I used to be super fit and healthy..I didn't recognise that myself after a few years with m.e but building exercise back into life was a big turning point. Started off with wallking around the block and built from there and it was some days 1 forward and 2 back. If I got a cold it was back to square 1 but I am a determined stubborn sort.

I will say it's very important to wait for your diagnosis and work with doctor specifically for where you are at with your illness. It sounds very acute for yourself at the moment and for some people with m.e exercise seems to make their symptoms significantly worse so try and be as patient as you can while you wait on results. Hopefully you'll have access to a specialist who can steer you in right direction.

I take things 1 day at a time. Sometimes I feel okish, other days rough, some days more energy, some days I struggle all day at work then have to come home and go to bed. My weekends are usually kept light so I can recover. It's a journey and as you get to understand the condition you will find out what works for you and your body.

I can totally understand you feeling angry. Just try to remember mom and dad will be very worried and desperate to help you so keep sharing your thoughts and experiences with them.

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MEnotME7 years ago

Hi Megan

I'm so sorry to hear that you are feeling so poorly, and glad your health is being investigated.

It's tough at your age, to deal with all this at such a crucial time in your education, but if I can suggest a couple of things that may help in the meantime....your diet is crucial, in terms of your health, your memory and your education, which is your future.

I have M.E, and all the revolting symptoms that accompany it.

I cut out all junk food, particularly sugar.

It is lethal stuff, in terms of your mental function such as concentration, memory and thinking, your liver and your weight, not to mention the lack of energy etc. It's crucial that you eat as natural a diet as possible, and cut out processed foods. That's going to be hard for you, when your mates are snacking and eating whatever they want, but your future depends on it.

Also, if you can drink as much water as you can, to eliminate the bad stuff from your body, and to keep it hydrated...dehydration is responsible, often, for many of the symptoms that you describe....is needed by the brain, and makes up 90% of our bodies so needs to be replenished often.

I hope this is taken as friendly advice, not a lecture, as I'm truly concerned about you, with your whole life ahead of you.

I wish I could turn back the clock, and regain my health, but I didn't have the knowledge to do the preventative stuff....so here I am, trying to tackle it now.

I wish you all the best, and hope you get your GP on your side, and get to the bottom of what's making you feel so poorly.

Very best wishes,

Allie

Louise6787 years ago

Hi Allie,

Thankyou for your advice it is much appreciated caus I need anything that can help on the road to recovery.

I have been trying to eat as healthy as I can, but it can be quite hard sometimes as I have no appetite or feel nauseous, my mum is making sureim drinking regularly and I have seen that I have been drinking a lot more than usal, which is probably a good thing. were often going to the doctors and I think they will be referring me to a pedeatrition who can hopefully help.

Thankyou

Megan

Brendanaylor7 years ago

Know how you feel I have me and other health problems enjoy your good days

Brendanaylor7 years ago

Modulan food helps has all you need which you'll need as still growing ask your Dr about it

Louise678 in reply to Brendanaylor7 years ago

Hi thanks for the advice I'll keep it mind, I'm going to see a specialist in a couple of weeks aswell which will hopefully help so more, hope you can get through it glad their are people who out their who also understand

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Brendanaylor in reply to Louise6787 years ago

Two or three days before you go write down how much you slept pain appetite if same everyday or different it does help them see what is happening what your going through

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Louise678 in reply to Brendanaylor7 years ago

Thanks that's a great idea I'll make sure I'll do that with my parents

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Calliepet7 years ago

Hi Megan - I am using my mums account to post this as your story is really similar to mine. I was diagnosed as a young teen to and I know how hard it is to watch life go on around you will you feel so ill.

Half Days as suggested by the other commentors do work, but even half days can be too much, some days I ended up doing one 1/2 hour lesson a day and sleeping in the sickroom. If you can get the school on your side - it might not work but any help they can give will make your life easier.

You don't have to live your life on the same road as other people -

Hormones and ME can be really hard combination to live with - I had really awful PMS and found taking the pill helped sooooo much - but it might not be the same for you.

I don't know whether a positive story will help you but I was in the same place as you are now but at 22 I have just got my degree and am planning to go on holiday (for the first time in 5 years!) with my 3 best friends who support and understand me.

Hang in there! it will be long and hard but you will learn all the little techniques to make your life better and easier.

I wish you all the best

-Jenjen

Louise678 in reply to Calliepet7 years ago

Hi Jen I'm glad to know someone who understands and have been in the same situations. I'm trying out half days, but I don't think I'll manga it. Last week I did one lesson and ended up going in the medical room to sleep. I just feel like I'm missing out on a lot if oppatunitys and I'm normally so active. What kind if methods have used to help you with your m.e? I've been get really frustrated and be taking out in mum and dad recently which isn't what they need. I'm scared of my friends drifting away from me. Also well done for getting your degree! I've always been a high achiever so it worry a me that my education is going to be neglected.

Thankyou for your support and I hope you enjoy your holiday make the most of it!!!

Megan

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jenjen93 in reply to Louise6787 years ago

Hi again - I am the same person as replied before, but I finally got my own account!

3 things helped me the most:

Treating symptoms individually, ie. find something to treat your leg pains rather than try t find something that works for everything. I got that leg/joint pain particularly badly at night explained to my doctor and was prescribed amyltiptalyne (probably not how its spelt!) which really helped.

I wore a bracelet (a piece of elastic threaded with cardboard tags) which represented my periods of activity in the day. After you do a period of activity (anything that takes energy) I tore off a tag. Its a good way to visualise what you can do, moniter if you are doing to much and is also good to show people if people are not being understanding

Audiobooks, podcasts and music. I find that just sleeping can be really hard, my brain just keeps thinking (often negative ) but listening to the radio or an audiobook can be just intersting enough to occupy your mind without keeping you awake. I actually cant get to sleep in silence any more! I have a whole range from podcasts about history when I need something complicated to "chillout" music for when I just need something in the background.

Also remember the world is a really flexible place - I sat a chemistry exam without going to any of the lessons because I did the work at home (my teacher was cross because I got the best marks in the class!)

As to your parents me and my mum (whos account I hijacked) found that overcomunicating worked for us, we just say everything on our minds so we know whats going on, I always want to hide things so she doesn't worry but it has never really worked.

Hope at least some of this helps!

-Jen

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Louise678 in reply to jenjen937 years ago

Hi Jen

Thanks for all these tips I really take them into mind, I've started listening to audio books at night and they really help me drift off because mind is running in circles do much. My mum is big worrier and I know she is worry about so I've been trying to hide things and not tell what hurts and what's going on but I do think that makes it worse. So I'm really going to try be more open! Thankyou so much for the support! The band idea sound really good as i think that will make my friends and teachers understand more about what I'm going through, who came up with that? thanks a lot

Meg

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jenjen93 in reply to Louise6787 years ago

Hi Meg,

Sorry for the late reply, its been a long week!

I can't exactly remember where the bracelet came from I think my Mum adapted the idea so I would actually time things.

One thing I forgot to mention was that when you can get a diagnosis you will be entitled to exam concessions. I find that extra time, separate rooms and rest breaks particularly good for my situation - I actually turned up to my end of year exams with a pillow as I nap on the floor in the corner!

Here's the web address (can't work out how to link it)

ayme.org.uk/documents/10228...

to a document about it from AYME (Action for young people with ME) if you feel up to reading it at some point.

AYME is a good organization and does a magazine 4 times a year for and about young people with ME (pretty much what it says on the tin).

Hope you are doing as well as you can and look after yourself!

Jen

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kaz657 years ago

Hi Louise678,

I'm sorry your feeling so poorly and i do hope you get diagnosed ASAP. Your symptoms are so familiar to my daughter's-she has been suffering with all you have described and has constant sore throat's. We have managed to get referred to a pediatrician who she saw a couple of time's who then has referred my daughter to the CFS clinic which we had our first visit to last week.

The problem is that a lot of the symptom's overlap with other illness's and it's going to be a slow process with test's to be diagnosed with CFS/ME.

At the moment my daughter has had 4 week's off school apart from managing 5 lesson's, it is frustrating but she can feel ok and then suddenly it's like she has walked into a brick wall feeling so tired.

From the reading i have done it seem's you have to pace yourself and i'm trying to make sure she take's thing's slowly because it does not take a lot for energy level's to go down quickly as i'm sure you know.

My daughter was 15 on monday but she wanted to cancel it because she felt so poorly.

I do hope you get some answer's and i'll get my daughter to send you a message-you might have something to talk about and don't worry your not the only one who get's angry-it's just frustration because you can't do all the thing's you used to, my daughter is the same.

Take care

Kaz65 x

Louise678 in reply to kaz657 years ago

HI

It's great to hear their someone my age who suffering I would love to get in contact with your daughter, caus it can get hard feeling alone with the illness. I've had. Many conditions and other illness rules out we're found to an me clinic in two weeks and hopefully we will get something out of it. Getting the diagnosis is the hardest thing because donators don't understand me. How long has your daughter had me for? I've started to try mornings at school this week but it's been really hard and I've had to go in the medical room to sleep I've been off school for quite a while and my mum is scarf if me falling behind not just in my work but socially.

Thanks for getting in touch

Megan

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kaz65 in reply to Louise6787 years ago

Hi!

Im Katie and my mum sent you a message a couple of days ago. It looks like we have quite a lot in common with what we're going through. I feel kind of lonely sometimes too since people either dont believe me or dont understand. ive tried talking to my friends at school about it and theyre just kind of like "oh... ok..." but my friend from primary school who i havent seen in about 2 years told me that she has chronic fatigue too so its nice to talk to people my age about things. I have to go back to a clinic in March for physio where i think theyre going to look at my posture and i also might need to have therapy with them and stuff like that so hopefully they can help. I hope everything goes well for you at the clinic! hopefully you can get some help quickly because i know it can get really hard to deal with. I think i started to feel poorly in about 2013 so its been about 2 years, i have to have a meeting with my head of year and other teachers the day i go back after half-term, its about my attendance so hopefully they understand what i need and what id like to do. id really like to be able to go to school and do however many lessons i can, hopefully the whole day, and if i feel poorly i can get my work and go in a different room, if not id like to take my work home with me. i dont want them to make me have a part time timetable because i really do want to be at school as much as i can. I hope everything goes well for you!

-Katie

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Louise678 in reply to kaz657 years ago

Hi Katie,

I understand my friends don't get it at all they just think oh your tired, or yeh okay you don't feel well. I have found it hard at school in lessons and stuff caus I can't concentrate and feel really I'll so the only opstion really is to go for a few hours, but it's annoying caus I can't see my mates that much. I hope your school understands mine have been really supportive shofar, I hope ya physio goes well and your treatment, I m going to the clinic next week which will hopefully help if ya have anything to talk about feel free. Hope everything goes okay

Meg

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myhealthneeds7 years ago

Hi Megan,

Are you in England or Wales? We run a Support Group in Cardiff and also support people at home.

Miriam

Louise678 in reply to myhealthneeds7 years ago

Hi Miriam

Im in England but I would love to join a support group in my own area in leeds if anyone knows of any?

Meg

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mitty9997 years ago

Gosh what a lot at such a young age. ! My opinion is that as you probably realise that doctors are not going to spend fortunes running around after you , that you must try and learn as much as you can for yourself. In these cockeyed days with politics so interfering with real tangible needs, I think you are looking at taking charge of your own diagnosis. Too many so called specialists are so caught up with all kinds of pressures to follow the so called " treatments that their country pushes upon them for selfish reasons " It is a scandal waiting to explode one day.

I would happily be pleased to pass on loads of information that I have spent years gathering., but I think you should read a very good and honest report from a hard working charity first. In my humble opinion there is nobody better than .............

THE HUMMINGBIRDS` FOUNDATION FOR ME. Look them up on Google and take your time to read what they have spent years finding out by experimentation and research.

You will find it such a relief if you "find yourself there ". There are so many ins and outs, and they explain things so well and with such a mountain of knowledge behind them too. I really believe that once things are clearer in your own mind then you should find yourself, not alone any more and much more able to cope than maybe you are now. . You are not alone , so many are trying to help you.

When I finally read their work, I was stunned. I felt so disregarded and lost before.

Of course you have to have certain tests to rule out other conditions. There is no test for ME, not yet as such. . Often it comes on very quickly and almost bowls you over.

You may find your own family and friends trying to tell you to pull yourself together.

I hope not for your sake. On the site there is a chance to print off many articles which you can print off and pass on. They actually ask you to, giving you freedom to copy their work if you wish.

I wish you well and hope you feel better soon.

My regards to you............MITTY.

Louise678 in reply to mitty9997 years ago

Hi Mitty

My family and I have already been to quite a few doctors and I feel they don't have a clue. I've done a lot of research and read quite a bit. I will look at the website you mentioned it' sounds great and might help friends and education people understand. My family have been really supportive and are trying their best to get the best specialist they can to try to help me. I have been getting quite frustrated latley with them because it some just gets to much and you want to let your frustration out. I've had a lot and a lot of things rules out. I have numerous scans and blood tests but had come back negative. So hopefully I can get some reassurance when I go to the me clinic next week.

Thankyou for your support and help it's much appreciated!

Megan

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mitty9997 years ago

I am so pleased to hear you are getting support from your family. I was not so lucky and was accused of lying and making up an elaborate story in order to get income support from the government. Be careful not to follow any medical staff who suggest you do exercise to improve your recovery, it has been shown on numerous occaisons to greatly worsen the pains and other symptoms. I have found that Qenzme q 10 is very good to increase energy, as is Carnitine and B 12.

I hope the Hummingbird site will expand your understanding and provide extra knowledge for you.

Regards.........MITTY.

Georgieporge7 years ago

I am 14 and i was diagnosed with CFS and many more illnesses when i was 6 months old. I did have half days for about a year but because im now doin my GCSE's i cant. It really is hard and nobody understands how you truly feel unless you actually have these medical conditions

Louise6787 years ago

Hi I'm also doing my GCSES I've just started half days but it is still quite hard to concentrate in lessons and have the energy to socialise with friends. How long did it take you to get a diagnosis of ME and have you seen any specialists? I've got an oppotment to see the neurologist in a couple of weeks and we're going from their. Hope ya okapi

Meg

KinnyBunny5 years ago

Hi Megan

I'm going through the exact same thing as you, I'm 13 and got a diagnosis about half a year ago after 5 years of tests. I've found that being able to talk to people that understand has really helped and making sure that school also understands. Have you tried getting an appointment with a cfs consoulant? It's been really helpful for me to be able to talk it over properly with someone who understands. I have been trying to just pace my days out so I'm using little bits of energy each day instead of using it all at once. If you want to talk or anything, just let me know as I know how hard it is

Maisie

ChristianCT5 years ago

Conditions like CFS and ME are very difficult to diagnose and not all patients show the same symptoms, to the extent that unfortunately even some doctors keep doubting whether one is putting on a show or not.

I think these conditions occur when an individual is subjected to both physical and emotional situations and hits that person when he/she happens to be at a low ebb.

But first things first :

1) You need to rest to help your mind and body to prepare to fight back. don't be in too much of a hurry because it takes time.

2) You need to eat well. Avoid sugary stuff and cafeine drinks.

I found Ubiquinil Q10 taken at breakfast with food) very helpful, also with Ginko Biloba (taken at lunch time with food) and Siberian Ginseng at about 6pm (without food).

3) Recovery starts with exercise. Start very slow, even walking just for a few minutes. The important thing is to be able to build up very slowly. It's like building your body from scratch all over again. Never overdo it but keep a daily routine that you are able to commit to, and up the level very gradually.

4) If there are any emotional/psychological issues, take them with a philosophical pinch of salt: try to sort the easier issues one at a time, and don't fret too much with the bigger issues. You need to protect yourself against them, in order to reduce your anxiety levels to a manageable level.

Once you slowly get back to "normal", then you will be able to face them one at a time.

sil15645 years ago

Hello i can only go on my son with the same symptoms and was diagnosed with candida albicans .....feeding this disease in your body with processed foods drinks full of sugar ....sweets ...icecream the yeast starts to thrive and takes over the body and organs slowing you down ...please do your own research on the subject and a spit test can easily confirm this illness .....google as much to satisfy your symptoms ...... changing my sons diet and taking kid-lac apple powder full of good bacteria ......bought online and found it a usefull web site finchley clinic my son is now 14 and doing well this turn of events started when he was 11 years old hope this helps on your journey to wellbeing kind regards Sylvia

Cmhsmhcsh19765 years ago

Hi Megan, I’m 13 and have been recently diagnosed with CFS/ ME and have many other deficiencies to go with it now as well as liver disease. I’ve been struggling for over 18 months and had so many tests done but only recently been diagnosed. School are really good and help me a lot now. They tried me with half days to start with but I still struggled and was so exhausted and so sick that my Consultant and head teacher ended up doing a referral and as of September I will be tutored at home 3 times a week until I am well enough to go back to school. I know how hard it is and still struggle daily so I get how you feel and you can message

me whenever you like. You are not on your own.

Shannah

SusanDW5 years ago

Hi sweetheart. I'm 50 and been diagnosed for about 6 months. It is very difficult to live with especially for one as young as you. If you can get referred to the cfs/me clinic they are the best people to help you, especially in group session as there are lots of people suffering as you are, plus nurses and doctors who specialise in this. I found it invaluable, especially to realise you're not on your own, there are people you can talk to face to face going through what you are, and medical staff to help you. All I will say is there is no quick fix but I wish you all the very best of live and luck xx

KatyMaxwell5 years ago

Hi

I had bad chronic fatigue after having glandular fever when I was around 10 years old and it gradually got worse. I had pain in all my joints and passed out a few times and felt faint.

I'm 15 now and though my fatigue generally has subsided, I'm still having a lot of pain and sometimes fatigue but this is mainly muscular fatigue. I'm a very active person so I am trying to keep going through this. I still haven't fully recovered from whatever happened after the glandular fever but I know how it felt so I'm here for those who need to talk since I understand what they are going through.

Katy