Im a 16 year old male and i have been diagnosed with CFS
over the past year or so have been feeling sleepy in the middle of the day for no reason.
Recently saw the doctor and he said i had CFS and he made me get a blood test taken, so i did and he said their was no signs of a viral diseas like glandgela feaver. So from this my parents now think i dont have CFS and they had a little speech to me like "Your just lazy and you eat to much junk food in the middle of the day and thats why you want to go to sleep". of corse you dont know me but i can tell you i am a very slim person i am just as lazy / not lazy as any one else and my diet is perfectly fine. I do strongly think i have CFS because
*I get sleepy and often fall asleep in the middle of the day even when i get 8 hours + of sleep.
*i can get bad head aches when i wake up.
*After doing exersize for an hour or so i can hardly walk my muscles and joints hurt so bad.
*I am very sleepy so i go to sleep for 2 hours and wake up more sleepy then when i went to bed.
*i find it hard to concerntrate and often read somthing and cant remember what i just read.
If you think i have chronic fatigue or dont please write in my post, And if any one knows any ways to help people like your parents understand please help me!
You could have CFS or something else.....you are 16 years old have should have plenty of energy and having pains in your muscles etc (although you may still be growing) can be an indication of other things. Just because you don't have Glandulare fever it doesn't mean you don't have CFS they are related only because some people that have had glandular fever go on to devlop CFS but you can get CFS even though you have never had glandular fever. There are many blood tests that you shoudl get checked:
Adrenal levels (ie cortisol)
get you blood pressure taken
CRP levels and ESR levels show inflammation in the body
TSH and FT4 levels (thyroid)
Blood sugar levels
Compliement protein levels (IGG IGM IGE)
Also get a food intolerance test done if you can a blood test one as others can be unreliable.
Start with tying to get your dr to check some of these out as usually some of these and if nothing shows up then I would try and get a good dr who understand CFS and can check you for unhealthy bacterias overgrowing in your gut and a dr who is willing to treat you with antibiotics if they find these bacterias or parasites. I can't remember where you said you were living but there are a couple of good dr's in the USA and in Belgium that can be helpful...I am from the UK and decided to travel abroad for the help....If this is not feesable I would definately try and find a CFS specialist who is open to food intolerances and bacterias/parasites etc causing CFS
Have you been bitten by anything recently? have you been abroad recently as sometimes you can pick up things that can cause CFS
Look online for info about CFS to show your parents...also look up M.E as that is a similar thing (I think it may even be the same thing)
I have had CFS for 12 years and it is very hard for relatives to understand how you feel....being tired all the time is horrible to live with and can seem like an excuse for opting out which is why it is important to explain how you feel to them and show them what the typical symptoms of CFS are etc...
The thing is i cant go and see a specialist because they dont think i have it. i live in Sydney Australia and have already seen a Dr and had a blood test and most of those things tested. The Dr thinks i have it but because the Dr was so breif doing my tests and having no viral or signs from the blood tests my parents think he doesnt know what he is talking about and that they have made up their mind that i dont have CFS. I can understand that the Dr has come to a quick conclusion with no evidence as i have read that half the time there is no tests that can be done to prove that you have CFS.
I am stuck and having my parents think i dont have CFS and me having four or more symptoms over the past 6 months leads me to the conclusion.
I don't envy your situation....although it took my family ages to believe me as my Dr's kept saying they couldn't find anything. Eventually though it became more recognised and they found inflammatory bacteria in my stomach etc All I can offer you advice wise is not to wait for your dr's and parents to believe you. You should spend your energy and focus yourself on aiming to get better. That means changing your diet (even if you don't have a bad diet) try to add beneficial foods into your diet...take plenty of rest, go and see a complimentary therapist i.e nutritionist, reflexologist, homeopathic dr...somone who believes you and can empathise and at least try and help you. My reflexologist who is fantastic (make sure you find a proper qualified practioner) she has helped me so much and understands what a struggle it is. Speak to others like you are doing and know that you are not alone there are so many people going through this too.
Thanks for your help.
I seem to be going around in circles as i get tiered and cant focus on my work
and as im 16 and im doing my final two years of school and it is very hard to do all the work when it takes twice as long because i cant concerntrate and then my parents having a go at me because of it and then i tell them its because of CFS and they dont belive me. Expetialy when the teachers complain that i fall asleep in class.
You just need to try and find ways to help yourself.......even if you can't make it into colleg, tyr and make sure you do all the work and study even if it is from your bed! As I mentioned try and find practioner of alternatived medicine that can support you......you will get through this...CFS seems to go through good and bad phases. Depression can also make you tired, I am not saying that you are denfinately depressed as I am not a dr but I know they have meds for that sort of thing that might help. (if it is deprression and not CFS) Have you been o the depression notice board?
HI ALEX Sorry to read about your situation. It's really bad luck to get a chronic disease when you are so yong. And bad luck again to have parents who are unhelpful.
I have been depressed most of my life and developed CFS at age 39. After 5 years I was disabled and had to give up practicing law. Then I worked part-time. The last couple years could only work 2 hours a day.
Here is a little experiemnt you can try. I have been doing this for several weeks, and it has helped me. Warning: it sounds crazy.
Turn your tv set to a channel that is not broadcasting a program and watch the static, the flickering black and white. You can turn off the sound. Do this for about 2 min., twice a day. It helped me right away w/ the depression and energy. After 3 weeks I started sleeping better.
I still have the brain fog w/o any improvment. I think I am about 30% better.
The theory is that the set emits something called theta waves which help to "reset" the brain. Can't lose much by trying it.
Thanks for your help, i dont belive i have depresion i just can get depresed when this kind of thing happens and obviously beeing 16 and focusing on school. i have no income to see a specialist, but i will try and get my parents to cooperate =)
as for the TV i will try that theory and get back you in a few days about that one.
you are in australia, you have a good resource at
ahfm.org, i believe this is in adelaide...
other things that are treatable or should i say curable should be ruled out
like others suggested, hypothyroid, esp. lyme (tick bite).
i hope you don't have it, good luck.
Hi, I seen your distress letter. I had chronic fatique syndrome for probably about the last 20 some years. Thats scarey! But true! Didnt know what it was untill about 10 years ago. Doctors most of them dont acknowledge it at all. I had doctors tell me I am not doing enough excercise so I pushed myself to do more working two jobs and all. It about killed me. I am not lazy either like you. It is a real horrible thing to have I wake up with headaches all the time. I eventually had to retire from my job early couldnt even work any more too much fatique I must sleep every day at least two to three hours a day every day. Its real and alot of people have this.!!! Sinus trouble and bad sore throats all the time too. I can sleep 12 hours straight wake up for two hours and I am severly exhausted all over again. Then I Have to lay back down and sleep a couple hours again. It ruled my life for the last 20 years. Its just horrible and doesnt get any better. Hope you have better luck finding help. I havent found any cures or medicines to date. THE DOCTORS i WENT TO SPECIALISTS TELLS ME i HAVE FIBROMYALGIA ALONG WITH CFS YOU MOST LIKELY HAVE THAT TOO ITS VERY PAINFUL JOINTS ANKLE PAIN ELBOW AND KNEE AND HIP PAIN ON AND OFF ON AND OFF . Bye for now. Cathy..
I'm sorry to hear you are feeling like this - I too developed ME/ CFS when I was 16. I, in fact, didn't get diagnosed properly until I was 18 so I fully sympathise when you say you don't feel heard by your parents and those close to you when you try to communicate your illness. This is very frustrating because CFS is a hidden illness and to be told you are lazy when you are infact very ill is awful. Apart from the fact CFS is now proven to clinically exist and is not simply a wave of mass hysteria, the only advice I can offer you is to research your condition thoroughly. Knowledge is the key to recovery and making those around you listen. A book which i think you might relate to is a by a guy called Alex Howard, titled "Why ME? My journey from ME (CFS) to health and happiness". He too developed the condition when he was 16 and, like you, his parents weren't very receptive to his illness. I have found his story to be tremendously comforting to me in some of the darkest days of my illness.
Another factor worth bearing in mind is that it is a common trait of people with ME/CFS to have problems with communicating their emotions. There are even therapies available to specifically help people with CFS to do this - the best one I have come across to do this is Reverse Therapy founded by a guy called John Eaton. I don't know if these books are readily available to you in Aus but you can get them on Amazon.com over here in the UK.
I hope this is of help. Good luck and may you recover soon!