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teen with CFS?


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Old 04-13-2016, 11:32 AM   #1
mono123
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Unhappy teen with CFS?

Hi!
My name is Brad and i am a teen. I have always loved playing football and i used to train 6-7 times a week. Now i don't train at all anymore.
So here is my story:
About 8 months ago i got diagnosed with infectious mononucleosis. I didn't think much of it. I just thought it was a little worse than a normal flu and that i would be back running and playing football in a week or two.
Unfortunately, that wasn't the case.
So when i got diagnosed with mono, i didn't feel very sick. I just had a sore throat and was really tired, just like the regular flu. I was home from school for a week and then went back. After some time i started realising that mono wasn't the regular flu. My symptoms did not want to dissapear and i started getting frustrated. However about after 1.5 months i got back to feeling a 100% again. I started training normally and everything was perfect, i was back to normal again, finally.
I trained for about 3 weeks before i fell down really sick. Now i don't have any idea what i was infected with. I personally believe it was a mono relapse. This time it was bad tho. I basically slept for a week, and stayed home from school for a month. When i decided to get back to school i was feeling like a zombie and just carried on day to day hoping that i was going to get better soon.
Now here we are, 4 months later. Still haven't touched a football and i am getting really depressed. I have gone to several doctors and no one could give me a good explanation to what i have. One doctor told me that i just had something called prolonged mono which soon was going to go away. Another doctor told me i had CFS.
My symptoms are:
- reoccuring sore throat
- Sinus problems
- Fatigue (extreme in the afternoon)
- leg pain
- headaches
- Cold hands and feet

Now i am here for your help, you guys are literally my last hope. No doctor has helped me and i am getting really worried. Going from training 5-6 times a week to not training at all has really made me feel like crap. Is there someone out there that has had or is having similar symptoms or a similar story. I am really desperate for an answer.

Thank you for taking the time to read this, i really appriciate it.

Last edited by Administrator; 06-11-2016 at 11:03 PM.

 
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Old 06-11-2016, 08:45 PM   #2
Hannah9906
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re: teen with CFS?

Hi.

I am also a teen. I don't know who you are, if you've actually even got CFS, or if you will read my reply- but I want to help you. I know what's it like- not knowing.

Over four years of the doctors not being able to diagnose my symptoms and being named a 'strange anomaly' by various consultants finally ended when my illness (I knew nothing about it- only knew I'd become so sad over it that I was SERIOSULY depressed) was named CFS eight months ago.

Anyway, I'll tell you about my story first...

In school, I'd been one of the most intelligent people in my class; I was the high-flier who, though not popular, pretty or athletic, was known for her wit and wisdom. Perfect grades, Perfect attendance, perfect attitude. Now, I struggle to work in class, have a 60% attendence (probably less), fall asleep during school and sometimes when I'm working I forget how to spell my own name.

I also had many friends that I'd often meet up with and play with during school. Needless to say, they stopped being friends with me long ago when I missed over half a school year and came back looking like death incarnate.

Besides this, I was a star water polo player- a girl training with teenage boys and adults! Every training session was like a bootcamp- brutal and exhausting... I loved it all! I cried when I reluctantly made the decision to quit. The team wanted me to play and my parents objected my decision despite my strange illness coming back (not yet diagnosed) but we all know there was no way I could play when one week I had moved down to help with the five year old swimming group and I almost collapsed in the shallow water after doing only a width. I told everyone I'd only be gone for a short while "recovery time, ya know?". That was eight months ago.

You're probably wondering how the doctors cracked the puzzle which is me, right? A group of unathletic girls and I were doing athletics up on the track. We all hated running, and that morning it was really cold for summer (lol I live in the UK) so the air was more difficult to breathe in whilst sprinting. Despite this, I'm a good runner (and remember this is the point where I thought I was healed and healthy many months ago) so I wasn't worried when my teacher said we were being timed to do 400m.

When it's my turn, I start running at a good pace- but I notice I feel really nauseous like I'm gonna be sick. I can't breathe properly,I'm not running fast, my legs are failing, my head hurts and.... 300m in I bend over and start choking. I'm stubborn though as always and I'm nearly there- I can see all my classmates and teachers at the finish line. So I run faster, despite feeling like I'm going into cardiac arrest. As soon as I pass the line, I realise that I failed to hear the time of my run that the teacher called out. I look over and her lips are moving but all I can hear is the rushing of blood in my head, the throbbing of my entire body, my heart beating too loudly and everything's painful. I think I choked out a "Miss, I don't feel well" before I keeled over, vision going black.

I was out for about three seconds and I open to my eyes to feeling like I'm having a heart attack and not being able to breathe. The teachers escorted me back to the changing room where they left me because I thought I was fine, when I promptly fainted again. My mum came to pick me up and she had to carry me to the car to go to the doctors. At the doctors, they were worried so they referred me to a paediatrician who I would later meet. I spent the next week and a half at home, not moving and barely speaking. If I had to sit up, I got out of breath. It took me over ten minutes and multiple crying fits every time I needed to reach the top of the stairs. I still have some weeks where I'm like that now.

September rolled around, bringing with it an amazing paediatrician who turned out to have been my old one from four years ago who I had stopped seeing when everyone thought I was better. He recognised it for what it was immediately because he'd known me several years and with my more profound symptoms I could explain ,ore easily what I was feeling. I was referred to a therapist on a special team that helps young people with CFS at the local hospital. I also received a doctors note, excusing me from all physical education at school and if I ever need out of class becuase it's too much I have a room where I can study or rest on my own in.

I see my therapist every six weeks and she is an angel. Straight away, she helped me. You see, there are some things I have figure out from having CFS: one- it's chronic, so you're in it for the long run which means you gonna need to learn to live with it, two- there's no medical cures to ease it, so you have to learn other methods to not flare your illness up and three- just because you're ill doesn't mean you can't live your life.

Frankly, CFS is a pain and if I could ever get rid of it, I wouldn't even hesitate. But being chronically exhausted and in pain does have negative affects on your body, so you have to learn to work with your fatigue. There's this thing called "boom and bust": it means if you're having a good day, don't go and exert all your energy because you have more that day (if you do you'll feel even worse later), but instead save some for later so you can use it when you really need it. Also, don't hesitate to just stop and take a breather.

Here's some tips that my therapist has really helped me with. (Whether you have CFS or not this is gonna help, so listen up..)

--Always eat breakfast. That sounds stupid, I know, it's so basics and simple but oh boy does it work. I know you might need to get to school or go somewhere and you might be late but you always need to have breakfast. You need that energy and if you deprive yourself of that, you're making your CFS worse.

--Sleeping properly. For a lot of people suffering with CFS, sleeping is a MAJOR issue. For some they can never stop sleeping, others they can't sleep and some have both. The point is, often people with CFS have crap sleeping schedules. Falling asleep during the day, getting to sleep at God knows when. Hell, I'm typing up this response at God knows when because I can only sleep when the sun comes up now. (I'm still working on this part- managing CFS is a slow, gradual process). Anyway, every night go to sleep at say 22:00 and every morning wake up at 6:00. This way you have a proper body clock and you'll feel a bit better.

-- that brings me to my next point: EMOTIONAL MANAGEMENT. That sounds crap and you may not believe me when I say that physical exertion isn't the only thing that can cause a 'flare' ( a bit like when you training caused you to get ill again). Emotions can get you exhausted. Excitement, anger, anxiety, sadness- anything that's strong will drain you completely. Every year at Christmas for example, I come down with a really bad flu and my CFS flares becuase I get excited so my immune system is low. This also applies to getting stressed out or angry- you need to calm down, drink some tea, watch TV or something to help you relax. It is not good to tire yourself out. Another good tip is don't think your not going to get better. Negative thoughts in this case, literally do wreak havoc in your body.

And now, loving life when life has screwed you over...

Don't let chronic fatigue rule your life. You said you were feeling pretty blue about not training right? Then don't stop. Learn how to manage it, know what makes you worse, write down what helps and what doesn't, remember to just stop sometimes. You need to learn your limits before you push yourself too hard. Go out with family and walk for 10 minutes and if you're too tired stop in a cafe. If you can go further, try. But always rest. Don't overdo yourself. Maybe you could go watch training- participate in the bits you can, rest when you want. Have fun! you can't let this bring you down. A month ago, I went away for a week in Spain on a Spanish exchange trip where I had to walk everywhere, do everything, I was constantly tired and excited. It hurt like hell. Sometimes I couldn't breathe when walking around the city. The doctors were so worried I'd overdo myself. And do you know what? I don't regret a second of it. I wanted to do the trip so I did it. I'm paying for it still, but I loved it. You can't hesitate to do the stuff you love, be with the people you love becuase of CFS.

But also, if you don't want to do it becuase you'll get real,y tired and you honestly really really really don't want to do it; don't. You are ill. Don't try to act like you're okay all the time, eventually the mask will crack.

Perhaps most importantly, remember that you're gonna have dark days (I might sound positive, I've spent half my day depressed and crying) but it gets better. You might feel like the whole world is against you, that no one understands how you feel. A bad day, bumping into a rude person, running out of your favourite cereal- it can end up with sleepless nights, endless pain and horrible exhaustion. But eventually there will be a time where you'll get better and you will have learned to manage your CFS. Until that time, keep going. You're doing great and you're stronger than you know.

I hope I've helped. Thanks, Hannah. Xx

{p.s I'll mention some other symptoms that I forgot to mention: headaches, achey joints and muscles, extreme fatigue, bad appetite, dizziness, sore throat, difficulty controlling body temperature, bad concentration, stomach problems, Balance issues, depression, panic attacks, sleeping issues, cold extremities, sensitivity to certain lights, sounds, smells and foods, painful lymph nodes etc.}

If you feel you can relate, just holler.

Last edited by Administrator; 06-11-2016 at 11:05 PM.

 
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Old 06-16-2016, 05:25 AM   #3
mono123
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Re: teen with CFS?

Hi Hannah!
You have absolutely no idea how much i appriciated that message. I can't thank you enough for taking the time to write all of that, thank you.

I am really in the beginning of this process even if it feels like i have been sick forever. I have spent so many hours at doctors and so much money on stupid blood tests, MRI, exertion tests and nothing has been found.
Doctors just don't understand and when doctors tell your family that everything is fine with this kid, my parents really struggle to accept the fact that i am still feeling like crap even though every single doctor says there is nothing wrong with me. It is so annoying and frustrating.
Here is whats weird though:
i have brought up CFS with many doctors but since i am a boy and 15 years old they just don't seem to believe that it is possible, if i am lucky enough to visit a doctor who believes in CFS .
Anyway i actually did this exertion test about a month ago and the weird thing was that i did really well, and all the doctors were surprised.
I did not faint or pass out and i actually did not even feel like crap after. When i was done with the exertion test (which was done on a bike btw) i went out for lunch with my family and then i started feeling like crap, might be because i woke up at 5.30 because the test was so early. Anyway i went home and slept for a while and when i woke up i felt like idid before the test, normal. I did not relapse and i did not struggle any more than i usually struggle the following days.

My CFS (if i have CFS) is really weird. I can feel really good one week and the next week i am crying and feeling depressed because everything hurts. I also have these on/off symptoms. At one point i started getting really tired in the afternoon. The tiredness passed, came back and passed again. Now i have really cold feet and hands all the time which also has been a symptom before and it went away, and now it is back. Then i noticed that i feel much better on days that are sunny than on rainy days, and the symptoms also get better on sunny days. Another thing is that according to many doctors i don't match the CFS diagnosis criteria because i have no neurological symptoms but headaches. And tiredness honestly isn't my biggest symptom. I am way more tired than i am before but i have never fallen asleep in school or anything like that, i do not have trouble keeping myself awake at all.
Anyway sorry for blabbering. i really just wanted to say thanks.
Hope your CFS gets better!
Best wishes, Brad.

Last edited by Administrator; 07-24-2016 at 06:31 AM.

 
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Old 08-17-2016, 01:48 PM   #4
FieldDay
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Re: teen with CFS?

Hi both of you

Apologies for the quick reply but I too have suffered from CFS for almost 11 years now. I'm not telling you that to freak you out but to let you know that a) your doctors/GPs will not be able to help you b) you will need to carry out a lot of your own research and c) you will become very frustrated at times but please DO NOT GIVE UP.

Your doctors will just want to treat the symptoms and will more than likely not get to the root of the problem so you will have to hunt around forums like this to find the right practitioner, possibly somebody alternative.

The big question for you both is have you had much dental work done, especially extractions and/or mercury fillings? If so, there is a great possibility that it could be linked. Please read up about dental cavitations and their link to CFS, especially if you have mercury fillings as this can lead to mercury poisoning especially if you have dental cavitations. (Cavitations are small holes in your jawbone which can occur following tooth extractions and become a nasty breeding ground for all sorts of bacteria. If you have mercury fillings and cavitations, they can become filled with mercury vapour leading to mercury poisoning). I have only recently discovered this about myself and am about to begin a mercury detox programme. I didn't have any cavitations myself (surprisingly) but my mercury levels are very high (I had 6 or 7 mercury fillings replaced with white ones a few years ago but did not detox the mercury vapour properly because of poor lymphatic drainage caused by problems with my teeth following orthodontic work I had done 11 years ago, just before my symptoms began. Please do research these areas if you have had much dental work done. Good luck. Sending you both love and light and hope you find the solution soon xx

 
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cfs. chronic fatigue, fibromyalgia, glandular fever, mononucleosis, sick....please help



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