Hi I'm I'm 14 and for two months now I have been suffering extreme tiredness, tests, blood test, scans have been done and they all come back negative. I also have other symptoms pins and needles in arms and legs, joint pain in leg and knees, constant dim headache and bad headaches, nausea and feeling faint, I started back atschool this week but couldn't do it, I can't concentrate, or think and socialising is so hard, the school is sorting out half days for me. I'm sleeping around 16 hours a day. sometimes i just find it hard to eat caus it's so tiring. I just need someone to talk to who understands. I'm still waiting to get diagonesed with m.e. Sorry for going on hope someone can help so u don't feel alone
Thankyou
Megan
Written by
Louise678
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I know how you feel, and people think your mad when you say you are too exhausted to eat. I hope you get your results soon, it took me years of nagging my GP to get referred. Sorry I can't offer anything more positive.
I feel like I'm moaning and going on, all I need is a diagnosis and go on for their, I'm just really scared for how long this could go on for, how long have you had m.e for and is their anything that has helped you? I have a really supportive family but just need some who really understand what im going through
I have had Mary. E for 26 years, been diagnosed for 11, and I am sure my then GP, only sent me for testing because she got fed up with my complaining and moan about how I feel. Unfortunately I react to a lot of medication, so I am not on a permanent routine of meds, my now GP just deals with symptoms as and when needed. I have been using crutches for years, but this week my GP has agreed I need to look into getting a wheelchair. Also I have got to a stage where I have closed myself off to all but a few select friends and family. I rely heavily on my carer for everyday simple tasks. I am sorry, I know this is not what you want to hear. I pray that you can find some help and releaf, I was fine up until my mid 30's, so I can't fully understand where you are coming from with regards to age. I hope your friends can be supportive as at your age you need your peers around you. I am pleased your school seems understanding and supportive. Please feel free to ask questions or have a moan, or even if you feel very low, get in touch with me or the group, please don't suffer alone, we are here to support you in any way we can.
I'm sorry to hear about how long you have had it for, have you seen a specialist? my friends don't fully understand and I think they think
I'm just moaning. I know I haven't had it for long but I'm getting frustrated because I used to do so much like athletics and martial arts and go out with friends, I'm going to the doctors again in two weeks and hopefully they will be able to say what's up with me. I feel like doctors don't have an understanding. Hopefully you will be able to get a wheel chair then you may be able to get out a bit and I'm sure it will help you a lot more.
I've seen an expert Dr W Weir, (google him) and his advice was as follows:
1) Gluten and Dairy free diet, (helped with the pain a lot).
2) Vit D supplement as people with ME are low in Vit D, (you'll get it as part of a multi vit).
3) Meditation twice a day to cope with the anxiety and low mood.
4) Pacing know what levels you can function at and use the energy wisely:
Now I post that thinking this should be discussed with G.P. if M.E. is diagnosed. There are other conditions that have similar symptoms so it is important for your Dr to rule out other things through various tests.
Thanks I keep these in my mind, I've been taking a tonic called metatone but it has had not helped at all, I should be get a referral next time I go to the doctor. I have had a lot of conditions ruled out and they have done scans, blood test which came back negative. I look the doctor up on google
Hi. Sorry to hear how ill you are feeling. I first came down with ME when I was 15 after getting the mumps (no vaccinations back then). I remember how I struggled to keep up with friends and nobody understood what was happening to me. I did recover somewhat but not completely. The best advice I can give you is to listen to your body. If it needs 16 hours of sleep right now then thats what it needs. Don't push yourself to do things and that will give your body the chance to recover. It's very frustrating, I know, and can get depressing but giving in now will pay dividends in the future.
We're getting in touch with a me specialist in a theew weeks. It's difficult at the moment with friends because they don't fully understand, but I'm trying to keep up but just can't which is frustrating, two weeks ago u was sleeping around 22 hours a day just waking up for food. I've been getting more symptoms as the weeks have gone by. How long did it take you to recover? What helps you treatment wise? Thankyou for all the support guys I really appreciate it!
Hi Megan, I had an acute episode that was put down to a 'viral' illness about 10+ years ago. I would go to bed at 9pm, (normally it would have been 3/4 am) and slept til 9am. I would go downstairs lie down and sleep most of the day away, get up get a bite to eat and go to bed.
That went on for about 2 & 1/2 months with a gradual improvement followed by another 2/3 weeks of sustained improvement.
This time it hasn't been as acute but form start to finish I ma 2 years in!!
I hadn't popped in to say that just wanted to see how you were getting on.
I'm literally sleeping the clock round were going to the me clinic next week and hopefully they can help me out and tell me what going on. I also have all the Above symptoms that I mentioned but I've also stared to get nerve pain down my arms and into fingers. I've started to listen to audio books which has helped with my mood as my mind is focusing on something else, I haven't seen any improvement yet but somedays I have bit more energy that other days. Thanks you for your support it's really helped that I've been able to talk to people who understand.
So glad to hear you have a specialist appointment lined up. Recovery varies from person to person. You have to learn to take each day as it comes and accept it. So easy to say but very very hard to do. The instinct is to fight it and push yourself on. With some illnesses and disabilities this is a good approach but with ME it's disastrous. Learning to pace yourself will be key to your recovery. That means never doing as much as you can because that will always be too much! I am sure the specialist will help you to get to grips with the pacing lark. There is a charity that specifically supports young people with ME, here's a link ayme.org.uk/
Can you tell me if you had an acute onset of your symptoms following an infection/bug, or did these symptoms just gradually start coming on? Also, the age you are, have you started your periods yet and if so, how are they?
When you say you're "waiting to get a diagnosis of M.E," do you mean that that's the diagnosis you're expecting to receive after browsing the Internet researching your symptoms, or do you mean you're waiting to hear back from your GP/other doctor?
The reason I ask is that there are many other conditions that have similar symptoms to M.E, but M.E is a very specific neurological and immune disease and only 13% - 40% of patients given that diagnosis actually really do have it, so you need to be sure that this is what you have. There are a lot of misdiagnoses of 'CFS'/M.E when you could, in actual fact, have something else that is entirely treatable. Also, at your age, 14, it is natural to have 'growing pains' in your joints/limbs, to need a lot of sleep (most people with M.E have little/and poor sleep), to feel 'tired;' it's a normal process of puberty/hormones going wild. Thyroid hormones can also cause a whole host of symptoms and I recommend joining the Thyroid UK community on here so you can learn more about reference ranges etc and getting copies of all your results from your GP so you and your parents can see things for yourselves. Also, iron deficiency anaemia is common in girls your age - you need a full iron panel including ferritin (shows your storage levels) and also check for coeliac disease too.
I hope for your sake that it's something other than M.E. that is treatable, but you need to know for sure. Let us know when you find out.
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