Help
Posted , 9 users are following.
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.
1 like, 38 replies
Guest emma15009
Posted
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 😸
emma15009 Guest
Posted
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?
Guest emma15009
Posted
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
lori93950 emma15009
Posted
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 !
emma15009 Guest
Posted
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.
Guest emma15009
Posted
Rest, earl grey tea (1 mug a day) plenty of water, hot water bottles, sunshine (when we get it here in the UK) a good book, the radio, a comfy sofa, warm snuggly blankets and cuddles are my meds.......no side effects either xx
jeremy04366 emma15009
Posted
I couldn't get my doctors around here tocheck me for fibro or CFS. It didn't matter how much I pleaded. My diagnosis was ultimately done at the Mayo clinic in which they replied " you should have been diagnosed locally"...I was like yeah I know but I wouldn't be here if that's the case.
lori93950 emma15009
Posted
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 .
emma15009 lori93950
Posted
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
jeremy04366 emma15009
Posted
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?
lori93950 emma15009
Posted
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 .
emma15009 jeremy04366
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
emma15009 lori93950
Posted
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
lori93950 emma15009
Posted
That is a classic symptom of mono no matter how much you sleep it’s nevef enough and you never feel awake
emma15009 lori93950
Posted
There's not much I can do right now but wait until Monday so that my mom can call the doctor's office. I'm creating a list of all the stuff I want to ask my doctor about, including mono and EBV.
Will keep everyone posted!