Hi guys, so I'm getting really desperate. As I write this, I feel too tired and weak to even sit up. I have piles of homework on my desk that I physically cannot do because I feel like I can't keep my eyes open. I'm only 16 and I'm practically disabled because of severe fatigue that cannot be explained. I have a mother who doesn't seem to believe that chronic fatigue syndrome is real. I've seen doctors and certain basic stuff has been ruled out, like anemia and thyroid disease, but my doctors, while super caring, won't do much more. I've been offered sleeping pills, but I'm terrified to take prescriptions for the fear that they will only make everything worse. I'm supposed to get a sleep study done within the next month. I haven't been properly diagnosed with CFS, but I know that's what my diagnosis should be. I wasn't always like this. I mean, I've always had a degree of disabling fatigue, but it's never been this extreme. It's like this has developed slowly over the years, a virus growing within me insidiously, and now it's full-blown with symptoms. I don't wanna live like this. School is impossible but my parents won't let me stay home. I feel like I have no help or support from my parents or doctors. I can't read because all the information goes into my head and then goes right out, I can't remember what happened yesterday. I'm never gonna be able to finish high school, let alone go to college or ever get some sort of job. I don't know where to turn, I can't talk to my mom without getting into a fight. Maybe this is just a flare up. Before the school year began, I became extremely fatigued like this for about 2 weeks and then it improved a little and became more manageable. For a few weeks, I seemed alright and now, for a week so far I'm bedridden again with no identifiable potential trigger. In the midst of feeling like you're dying, what can you do? Is there anything that will make this better? I do notice that if I take a super hot shower, my energy improves slightly for like 20 minutes afterwards. But even then, the heat doesn't really help. Also sometimes it doesn't feel like my body is fatigued, just my mind, head, and eyes. Most of the most troubling symptoms is my "tired eyes." They feel wet and freezing cold and this makes me constantly feel like I need to close them and sleep for 20 years. I'm pretty pale and always freezing to the touch according to other people, but I don't have an iron deficiency or anemia. The constant tension headache that I have is also hard to deal with, I have to take up to 7 Tylenol a day to keep the head pain under control. All of this is happening and neither my parents nor doctors believe it is this severe even though I've been bedridden all weekend. And to be honest, I oftentimes feel like dying would be better than this, something I'm sure a lot of severe ME patients can relate to. I don't know what to do. Why is my fatigue this bad? I genuinely feel like I don't get any sleep even though I get at least 7 hours a night. Please someone say something hopeful or encouraging because I feel buried fifty feet under the earth watching everyone else my age be happy.
Oh Emma reading that was heart breaking. I think we have all felt at the end of our tether at some point and I know I have sat and cried with frustration, tiredness and everything in-between many times.
Not being believed must be the most awful of feelings but EVERYONE on this site knows and feels your pain because we all have it too. Some of us are lucky to be believed and many are not. It's the invisible illness thing 😞.
I don't have the answer for you but wanted you to know there are people here listening, believing and caring sweetheart.
Sometimes it just helps to have a rant about it to complete strangers.
XX 😸
I agree, it is really relieving to rant and talk to people who understand, even if your illness physically doesn't feel any different.
Thanks for the support and for replying so quickly, I need all the support I can get right now. 
My Homecoming dance is tonight and I feel too sick to go, so I'm trying to decide whether to go for a little while or not.
May I ask what your experience with CFS is? How bad are your symptoms, how long have you had them, did they ever improve, etc?
Oh my gosh my heart is going out to you and you are not alone in this !
So have you had a mono or Epstein Barr test ?
If not you must ask or even demand one ! Go to the emergency if you have to .
I have been to several different drs and only got the diagnosis after 5 months of this a ton of blood tests saying I was perfectly healthy.
You MUST not worry about your schoolwork right now stress is not good for this illness. Also part of this illness is the major brain fog . I’m so clumsy forgetful ... depressed.
I cannot believe your parents aren’t taking you seriously ? Do they know how much you are suffering ?
This is by far the WORST thing I have EVER been through do not discount what you are feeling as it’s real you are not imagining this!
It’s not like you are just ‘a bit tired’ your body won’t go your mind is cloudy and it’s completely debilitating .
And yes you sleep but wake up and the nightmare starts all over again . Unable to get out of bed ... and just waiting all day to go to bed.
You are however young enough that you can get over this quickly with REST !!! So if you do the right thing ... eat well ( no junk ) plenty of water and plenty of rest . If you need to get time off school ... so be it you can always catch up when you are well. You must be your own advocate right now . Hang in there and let us know how things go .
I know that I have been tested for mono in the past but not recently. I haven't been to my doctor for a few months becasue I'm not supposed to go back until I get a sleep study done, I'm pretty sure my mom is going to call on Monday for me to go back sooner though. But it doesn't seem to matter becasue doctors won't take me seriously and my mom believes everything the doctor says so when my doctor is like "Well the blood test says she's fine" then my parents believe I'm fine, becasue the doctors know everything, right? *rolls eyes and cries *. Next time I see my doctor, I'll ask about mono and Epstein Barr and Lyme and a whole list of stuff I don't think I've been tested for. Two weeks ago I felt...fine! Like I'm always dealing with extreme tiredness but for the past week, I've been like that times ten. I remember two weekends go, I attended a college prep meeting and went shopping for a Homecoming dress and even went out to eat. I felt like crap but I didn't feel like this. These flare ups used to come about 3-4 times a year and now, all of a sudden, they seem to be coming all of the time. I have a 504 plan at school and I'm allowed more time to turn assignments in and my teachers know about my fatigue, although I'm sure they have no clue how bad i is. I'm currently considering being homeschooled if this doesn't improve at all in a few times. Two weeks ago, I was fine, so maybe two weeks from now, I'll be okay?? Maybe?? I'm not sure, but I'm trying to hold onto hope. Thanks for the support Lori xoxo
And as for my parents, my mother is very supportive but she doesn't understand how it could be this bad. I've been to more doctors in my 16 years then she's been to her whole life. And yet, I've gotten zero help. This is why she's frustrated. It also doesn't help how I have a history of being a hypochondriac and having severe depression when it comes to being believed 
Hi Emma,
I'm guessing you're in the US ? I think that the protocol there is to ask for a referral to infectious diseases for a Cfs/Me diagnosis as it were?
There's a girl with ME at my daughters school in the UK who was allowed to study at home. My other daughter has a friend with ME who had it all her life and is able to manage it with resting and pacing and managed college. I think you need to make sure you don't overdo things when you do have energy. It's the same information we all have to try to abide by with this condition.
Insist on asking for the referral to infectious diseases and for more support from school. You need to get as much support as you can.
I completed a gcse maths course a couple of years ago and it took resting and taking it easy to manage to get to the exam. I've wondered how I managed it but, think it was partly also due to my feeling that it didn't matter if I didn't manage it, I was just seeing how far I could get. I also managed another course and again thought I will see how far I can get. It was just a couple of hours a week but I felt very poorly at that time. Again I managed it but, with extra rest etc.
I'm having what I call an in house weekend. I don't go out and try to do less and rest more. I'm a mum of 4 and my youngest daughter who is nearly 16, has special educational needs so, I have an awareness of how much a UK school can bend to accommodate children who need more support. She's on a part time timetable due to her getting overwhelmed. She's still due to take 6 exams as she wants to still do them. I know about the girl with ME because the school told me about the student due to me having cfs/me. I don't know if they're doing exams.
I truly hope you get some help with this.
Beverley
I was diagnosed with CFS. I had all those symptoms. I was later diagnosed with celiac. They share an awful lot of symptoms and both kind of start out the same. I'm still struggling with food intolerances but removing the common ones have played a big part in me feeling a little better. Have you had a complete mineral and vitamin panel done?
Mine started out of the blue in 2014. No viruses etc beforehand although I had quite a bit of emotional trauma at that time.
Initially I was tired but couldn't sleep it off. Then tiredness turned to full on fatigue, it was so bad that washing my hair in the shower would take ages as just having my arms up was exhausting. Various visits to the Dr who said I was just depressed!!! and blood tests that came back normal took me to another Dr whom I broke down in front of. He referred me to a neurologist who within ten minutes of talking to me said I had CFS.
I have better days where I get up, dressed and can manage a half hour walk and days when getting out of bed to use the toilet is exhausting.
It's frustrating and I miss my former healthy self but try to remain positive that it'll disappear as quickly as it arrived.
But I do have down days, where I cry and rant and generally hate my life.
The neurologist told me to pace myself. Do something for an hour then rest for an hour etc and don't beat yourself up on the days you do nothing.
Go out to your homecoming dance tonight. You don't have to stay long, you don't have to dance, just enjoy the social side of it and go home when your body says it's had enough, don't feel pressured into staying out later. Xx
Gosh 4 children and one with special needs ... I take my hat off to you I don’t know how you do it !! And completing 2 courses???
I don’t get moving until 2pm and literally just make it to buy food and back home . Maybe a short walk if I’m feeling adventurous .
I’m having a terrible day but now a pretty good evening so much so I could have gone out tonight .... but thanks for reminding me that although we feel good ... we shouldn’t push it .
It’s such a weird illness I cannot figure it out it makes no sense at all ... and for me I need to I understand things 😩
I’ll NEVER forget this time EVER it’s the weirdest most ill I’ve ever felt .
I have found if I’m not completely debilitated by the fatigue that I can manage to go out ... I know the good nights are infrequent so if I do feel more awake and need to go out .... I make sure I am home by 9pm . So go and see your friends it may do you good !
My new saying is ‘gotta go’ . Maybe not the funnest person to go out with but my friends understand now .
You are so young you will get over this quickly ... rest as much as you can eat healthy and loads of water !
My dr told me to see a shrink ! That all my blood work was healthy . I said ‘I’m not here because I feel well!’ So I went to another ‘nice’ dr got the blood test and yes it’s mono Epstein Barr cfs.... blah blah .
I’m surprised that they haven’t tested you ? My sister in law is a teacher and she said one year so many students had it .
Hi Lori,
Thankyou. I think I try to abide by the "keep calm and carry on " don't always get there though!
My pattern currently is bed at midnight ish, wake a couple of times for the loo and sometimes wait for sleep to return, and up about 7. Not because I want/need to but because of the school run. I'm also dozing off a couple of times in the day. I've been having feroglobin recently to see if that helps and it does but isn't a cure. I'm currently having an in house weekend where I do less and rest more as I need to right now as feel I've done too much recently.
Re: the courses. Both were in an evening and at that point in my life,I was able to rest alot in the day which helped but, again not a cure for symptoms! I feel it was much harder than I'd anticipated but, was glad I did it. I wanted to be a teacher before all this and needed maths so, decided to try see how far I could get. Sometimes we have to try to find out and I felt quite ill with it but was determined. I made sure my tutors knew from the offset that I was seeing how far I could get and that there was a chance I may not complete the course and they were cool with that. Sometimes my head wasn't engaged with it and I wondered if was such a good idea but, this was something for me and the struggle "seemed" worth it.
It is such a weird condition you're right! And symptoms shift and change in what seems random ways to me. Little things can throw things out of sync and I really wish I could manage a better time table so I could rest and pace more usefully at times.
Beverley
Having a blood test for EBV is a start. I tested positive and never knew that apparently I had it in my younger years. When it flares up, it will knock you down. That's when they lean toward CFS/ME.
Also, the sleep study is imperative. It will determine if you have sleep apnea. The doctors will jump up and down thinking they've cured you, once you're positive for sleep apnea. Well, let them have their eureka moment, lol.
The symptoms for CFS, EBV and Sleep Apnea are pretty much identical. Knocking one off the list will help. As will a diagnosis, so you can better understand what is happening to you.
Are you on any medications? If so, Google those side effects.
For me, I educated myself on the 3 above. Google was my best friend. Learned to Pace myself, learned to listen to my body, didn't beat myself up on the days that I could barely walk to the bedroom door. I eventually stopped taking all the prescriptions that added to fatigue. I now sleep a CPAP machine. I also changed eating habits. Since I stopped the meds that had to be taken before or with a meal, I now juice in the mornings. Because I stopped so much at the same time, I can't pinpoint if it was a certain meditation or a certain food or if EBV wasn't flaring. But, in a few months, I felt maybe 50 percent better. Whatever made the improvement, I'll take it!!
My heart goes out to you, even more so to be going through this at such a young age. Please keep us posted.
Hi Jeremy, thanks for your input. I have been tested for celiac, I have had quite a lot of colonoscopies and endoscopies over the years and I've had biopsies that show no intestinal inflammation and blood tests are negative. I have cut out gluten anyway however. No difference in fatigue, but's definitely helped my IBS. And I'm honestly not sure about all the blood work I've had done anymore, I know my vitamin D levels are super low and they don't seem to rise even though I'm taking massive amounts of precipitation Vitamin D. I know I'm had B vitamins checked and some other stuff but I'm not exactly sure
I'm glad you are feeling better though <3
I feel. It seems to my doctors that I'm just a "normally tired teen", when in reality I can't even function to go to school because I'm fatigued. That is not normal. I already see 2 shrinks anyway. I have severe clinical depression and panic attacks, all from WORRYING ABOUT THE HEALTH ISSUES IN THE FIRST PLACE. The fatigue and illness came first before the depression, but my doctors always assume it's becasue of my depression. For my sleep study, my primary care literally wrote "Insomnia due to mental disorders." I don't have insomnia, I fall asleep fine, it's just that I'm fatigued and feel like I don't sleep at all when I've slept for 10 hours. And second of all, it's not from my "mental disorders." I have these "mental disorders" in the first place becasue of my health and from the doctors not understanding me. Ugh lol. I pray that I become heard soon. It's difficult to find a new doctor becasue my insurance doesn't cover most of them and I kinda live in the middle of nowhere
Yes, I'm from the US, where health care is kinda a mess. I have no idea what the protocol is. I can barely make my doctor take me seriously so that I can find out.
I don't think I'll be able to study from home, my state has strict attendance laws and if I want to work from home, I'm probably going to have to be homeschooled or work with an online school program.
I'm glad to hear that your daughter's friend was able to do college. That makes me very hopeful. Did she do her courses online or was she able to actually attend a university?
Next time I see my doctor, I plan to discuss a whole lot with her and put my foot down and say "ENOUGH HELP ME." I plan to email all of my teachers from school and explain what's going on in a more detailed way so that they can understand what's happening to me. I'm allowed more time to hang in assignments, but sometimes it's still not enough. Problem is, they need letters from doctors in order to provide me with extra support and getting letters from doctors is sometimes impossible when none of them take you seriously. It's great that you have been able to complete those courses, I'm so proud! I know how hard it is to get work done when you feel so poorly. Always remember to listen to your body and only do what you can. I have a hard time doing that, but I'm trying to be better about it. My heart goes out to you and your children.
One day at a time <3
I was tested for mono all the time when I was little. Due to fatigue. Like I said in my original post, it's almost like a virus slowly grew inside of me until now, where the virus has fully settled and I have mild/severe CFS. I think it could be a genetic thing becasue the fatigue started when I was only around eight or nine. I couldn't play in the schoolyard like the other kids becasue I was "tired and weak." No one is my family is like thi though, so I was no clue why I'm fatigued. I've additionally harmed by body in the past with anorexia and eating disorders. My hormones are out of whack too, I haven't had a real period in 3 years from my eating disorder, which I've recovered from and am actually overweight now. I've been to doctors about it, but all they can do is give me birth control, which makes me have bad chronic vomiting
My illness is a puzzle that I am hoping to fit together, with or without the help of doctors.
I still think a sleep study is a good idea just to be sure it's not sleep apnea. If it is, at least I have some sort of idea of what's going on with me and know possible treatments.
No, I am not on any meds, besides vitamins, mainly vitamin D, My body does not do well with meds. I always get really bad side effects and it sucks lol.
I'm so glad you've gotten better!!!!! I hope I can too!! I eat pretty healthy and try to do small amounts of activity but it doesn't help. In fact, if I take a 10 minute walk sometimes, I feel like I need to be in bed for another few days. Which isn't useful becasue I really need to lose weight becasue I have PCOS, among other hormonal stuff that losing weight would help, but it's not really possible with this sort of fatigue. It's hard to pace yourself too with school because you have to abide by their schedule, not your own. Waking up at 6 am is killing me. Probably not going to school very much this week, if at all.
Chronic fatigue is very strange. I have no idea what caused mine but I'm sure it was a variety of triggers that built over time and since it started so young, I have to wonder if genes played a role. I've been thinking of seeing a neurologist, but I'm scared of being prescribed meds.
Homecoming was a disaster, for more reasons than the fatigue lol. I barely danced and I was too tired to stand so I just kinda sat alone and chilled. I'm glad I went though even though I didn't stay the full time.
I think diet plays a big part in healing I have cut out dairy and although I always ate healthy they say a diet full of fruits and vegetables is the best ... this is really all I ate anyway so go figure .
But cutting out the milk and eggs hopefully I will see a change .
This illness also disturbs your sleep I wake up several times during the night and often even though tired wake up too early . I used to be a relaxed person who could sleep until 10.30 boy how I miss those days 😫
Now I wake up wired but tired ...
I know once I got my blood test confirming Epstein Barr mono cfs I can now be taken seriously and referred to the right doctors !
I take them to every appointment so once you get a proper diagnosis you can start calling the shots !
Not saying they can cure you as there is no real cure apart from diet rest etc .
But at least they aren’t looking at you like you’re crazy as once it’s on paper they take you seriously plus have sympathy for you .,