I'm 19 and I've had it since I was about 12/13 and it have severely impacted on my life. I have a very understanding boyfriend and I'm lucky to have him but do any of you find that you're scared you disappoint the people around you because you have limitations on what you do? How are you doing education wise? I was kicked out of school age 14 because they refused to believe chronic fatigue syndrome was a real illness and because it was the top school in my city they thought I was bringing down their attendance records. I have other questions to ask but I just wanted to discuss it with other people my age without the whole focus being totally on questions liek "what symptoms do you have?" A lot of younger cfs sufferer discussion groups end up like that -_-
i'm an oldie (compared to 20), and just wanted to say that it's particularly cruel to have m.e. when young - it's isolating enough as it is, and even more so when youre young. so good on you for being able to stay connected. it does help to be able to share amongst ourselves - on days that we're well enough to do so.
good to see you on the forum
Hey! I haven't logged in in awhile, but when I saw your post I immediately logged in to talk. I'm 17 and have probably had CFS since about 13, but I was officially diagnosed a little over a year ago.
And to answer your question about if I'm scared I disappoint people: YES. All the time. I've only attended public school in the more "sketchy" areas you could say, so I've never been kicked out (I am so sorry that happened to you though!) But I'm really involved in the drama department and when I can't make it to school I feel like I'm letting them down. Or when my parents ask me to do chores and I just... can't. I want to be so much more of a help to them, but because of CFS I can't. :( We try our best though, and that's all that matters.
That's wonderful that you have such an understanding boyfriend! A few times I've gotten really close to a guy, but then I push him away because I think he won't understand what I go through.
I could go on for hours about my fears towards disappointing people, (I'm sure you could too!) but I always try my best. And that's all we can do.
If you ever want to chat, I'll be here! :)
I'm another oldie, but have had it ALL my life, like you. Yes, I felt horrendous guilt. I was also diagnosed with Major Depressive Disorder at 13. In my case, the school district paid for tutors to be sent to my home.
I have enormous sympathy for you - the most important thing I want to say is HAVE YOUR THYROID CHECKED - INSIST ON IT.
Even if your TSH is normal, insist on full battery of tests. If your TSH is "normal" but around 3? ...find an endocrinologist. (hallmarks - loss of or thin outer eyebrows. Dry skin. Depression. Chapped peeling lips. Painful periods)
Lupus can also mimic CFS and hide.
FIGHT that guilt!!!! YOU know what you can do and what you can't. Can you imagine someone with MS having to apologize for it? Feel like they're letting people down? BS.
If I could go back and say anything to myself at your age, it's that guilt helps NOTHING and it HURTS you - you are putting stress on yourself that you do NOT deserve ~ and stress makes CFS symptoms flourish. Don't apologize. Say thank you when someone helps you, like your boyfriend, but don't tack, "I'm sorry" onto it. You have nothing to be sorry for.
...and you not only have nothing to feel guilty for, you are probably FAR STRONGER than the average teen - because you have to fight to do things others take for granted.
This I HATE TO SAY, but if you can walk, at all, go for it. If you cant, try light weight lifting while sitting. The ONLY thing that ever helped me when I was young was exercise - and I know full well how horrendous and misunderstanding that sounds, but if it can help, so be it. BUT scrap that if you've already tried it.
Good luck to you & my sincere best wishes,
Hey, I'm 19 too and ive had this for 4 years now. They said it was the pneumonia that's triggered it. It is very isolating so it is nice to hear you have an understanding boyfriend. I'm lucky enough to have one too who has been with me for half of the time I've had this. I never got kicked out of school, but I slept in all my exams and that was before i was diagnosed so I didn't have a clue what to think. It's a confusing condition. Never had my thyroid tested though. I find myself apologizing a lot especially to my boyfriend. Do you ever, if anyone you don't know questions you, just put it down to laziness? I do because i find it easier to explain that this and so many people are skeptical as to its existence. It's not an easy thing to deal qith but my mum has always been behind me 100% too. I am finding it hard at the moment because i need a job. It'll help as it will get me back into a routine. But full time.work is a no go. I got fired from an old job due this. Anyway, I hope you get better soon and youre not on your own :). Chin up
im 18 comming up 19 and have had this for 4 years. i too have an understanding boyfirend and friends but there are still times when i just think no matter how hard they try they still dont get it. we often joke about my abnrmal sleep but i do struggle when they invite me to things that i just physically cant do its very isolating. they also dont seem to understand that most docters i have seen cant even understand this disease never mid cure it. n trying to explain myself all the time is so exhausting i too just brush it off as laziness when not in the mood to talk. with school although they didnt kick me out i struggled with managing to get any GCSE's and ive had one very understanding college that helped me get a good grade but as for work im finding it impossible to even think of so financial srain is awful. so yes i feel your pain and am in the exact same boat.
I just turned 22 and I believe I have CFS in combination with fibro. I had a nasty bout of mono last year that set it off, but I hear you, being this young and feeling so tired and sick all the time is really frustrating. i also suffer from pmdd, depression, anxiety, and a whole slew of other symptoms. So being ready to graduate college but feeling like i'm ready to go into a nursing home is awful. i fall asleep at 830 every night, never sleep well, feel like i'm hobbling, and my family and friends try to understand but no one really does. I had to drop one of my classes this semester because I am just too overwhlemed and sick. i used to go to the gym frequently but now ive lost all energy. i'm glad to know I'm not alone, and its difficult knowing this will affect my future. does anyone here also have fibromyalgia too?
I TOTALLY related to you when you mentioned feeling like you're ready to go into a nursing home... one of the things that I hate the most is the feeling that I've aged so much compared to my friends. I'm trying to make myself go for a walk at least once a day but it's just so difficult! Getting up for CLASS is hard, and to think that I need to go the gym afterwards make me feel sick (literally and figuratively ;) )
And yes. Knowing that this will affect your entire life is hard to take in, but i've wanted to be an actress on the stage for as long as I can remember, and I'm going to work as hard as I can to make that happen (even if reality is telling me it's not possible). I hate being cliche, but hold onto your dreams, and don't let a disease get you down! :)
I hope all is going okay for you, and it's nice to know I'm not the only young person with CFS and fibro.
Hi, I'm 20 and I've had Fibro/CFS for 6 years. I have major depression and anxiety since I was 3, and a traumatic event triggered the Fibro/CFS. I am really struggling with my classes, I get burnout syndrome each semester and I barely pass. I'm on a lot of meds and tried a lot of therapies, but still struggling. Now I've developed POTS from the Fibro/CFS. I hate when people don't take me seriously, especially my own family & friends. I technically have accommodations at school for attendance, late work, and extra time on tests. Idk where I'd be without that. People keep telling me I need to stop focusing on my illness but it consumes my life!
Thank you for being so positive. I am finding it so hard at the moment living with everyone's expectations of me. I have always been a hard worker and done everything to achieve, and I achieved my 1st class degree in July and went on to do a post grad at the drama school of my dreams and then in November I got viral pneumonia, had to drop out because i could barely walk let alone keep up with the immense demands and have been living with post viral symptoms ever since. I have had to move back home and really am struggling to stay positive when everyone around me is pushing me to do things that I know I am not able to do any more, and then when I dont succeed or even attempt because I haven't got the strength, I feel like everyone around me is disappointed which only adds to the crushing devastation and disappointment that I feel within myself. Woah this comment was not meant to turn into such a sob story, but I wanted to say how nice your optimism was.
I had my thyroid checked and it came back at a level 4.9 and by british standards it has to be like 5.2 or something to get medicine (because it then makes all your other prescriptions free so they don't want to fund it) but I am SURE that since my virus my thyroid has been underactive; i am suffering all the same symptoms i watched my mum suffer with for years before she was finally given levothyroxine and she is like a different person now. I tried to ask the doctor for more tests but because I am only 21 he didn't take me seriously and gave me some prozac "because it helps with symptoms of ME" (although it turned me into a zombie so i stopped taking it.)
How did you persuade your doctor to do more tests?
I'm ancient now (33) but I was 17 when I got a nasty case of mono that went undiagnosed for a while because my only symptoms were labyrinthitis and exhaustion. Dr finally diagnosed it thru blood tests for everything under the sun (6 vials worth) I had a really high viral load but glands didnt go up until halfway thru time off at home. I worked too long while sick, was flat on my back in bed for 3 months then went back to work to early and developed post viral CFS. Unfortunatly I ended up on Disability long term because of it, friends etc gradually disappeared because I was either too sick or too broke to do anything with them, going to university was impossible due to brain fog, plus all the same problems everyone above has mentioned. I have found that a multi vitamin with extra b vitamins, rhodiola, CoQ10 150mg, ginkgo, kelp extract, vitamin E, yoga or pilates + light weight lifting+ walking on a regular basis, a low gi high protien and organic vege diet, has helped to the point where i have been able to start a uni prep course after years of not being able to do ANYTHING. I wish I'd discovered all this a decade ago. BTW dr put me on low dose antidepressant because its supposed to help with fibromyalgia symptoms, which it did a bit, but it took me from normal psychiactrically ( lol not sure thats an actual word) to completely suicidal, which is a rather problematic side effect. Not fun. Theres a lot more info around now then when I was first diagnosed. Gives CFS sufferers a greater chance of early recovery.
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