Do I really have CFS/ME?

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New Member

Date Joined May 2013
Total Posts : 2
   Posted 5/18/2013 1:18 PM (GMT -6)   
Hi all, I'm a year 12 student at the moment who has been diagnosed with CFS/ME for six months now. The problem is I'm not really sure if I have it. When I was little I used to fake being sick to get off school and now i can't tell whether I'm just faking or if I really AM as bad as I say. I'm tired, a lot, sleeping about 18 hours a day when I don't HAVE to be anywhere else. I ache, I get headaches, my joints crack and seize up. I get fevers easily, used to get stomach aches a lot, and when I do any activity my heart starts POUNDING. This could just be because I've had (I think) CFS for five years and haven't done any physical activity in that time. Also, at school I can't concentrate and when I do work i can feel that my brain isn't 'working' the same, not as slick.

These are all pretty accurate with CFS, but when I need to I know I can get up, go out with friends, run around (literally), go camping, travel overseas, etc. I'll pay for it later with sleeping but I can. Honestly I wouldn't be that bothered by it except for the problems I'm having at school. Because I'm skipping so much school I've fallen way behind, and if this is just a mental thing where I'm just lazy (really I am lazy but THAT lazy?) then this is seriously screwing up my future for no reason, and hurting my mum.

Arrrh, Sorry about the blurting all this out. I just don't know how to get it out. Help please, does this sound like I really have CFS? I'm desperate. Once I KNOW I'll feel better but this doubt is killing me, and I'm hating myself for it.

Veteran Member

Date Joined Jun 2008
Total Posts : 732
   Posted 5/18/2013 8:51 PM (GMT -6)   
Demiaria, welcome to the forum, I am sorry you have this illness, it is a hard one isn't it? When I was first dx'd with CFS I didn't believe it either. I just knew it was something else. But as time went on I came to terms with it. It is a frustrating place to be to not believe your dx.

Lazy! That is a word I applied to myself for a long time. Yes there are times I can do a lot & I will pay for it but there are times I am so down that all I want to do is lay down. Any time I have to do anything my first reaction is "NO" then I have to guage if I have the energy to do it. I have learned to let a lot of things go as I just don't want to expend the energy on them. Is that lazyness? No it isn't that is the nature of the illness. It is to your benefit to realize that you do have an illness & are not lazy, this will help you to let go of the self doubt & the stress that brings. I finally realized that I have had this illness for much longer then I thought & so I have been making decisions based on my energy levels for a long time subconsciously. I think you are the same way.

Come back often & let us know how you are doing. I did want to say that your symptoms do sound like CFS but if you are still not sure, get a second opinion to ease your mind. Take care of yourself. Many soft hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Regular Member

Date Joined Jul 2012
Total Posts : 335
   Posted 5/18/2013 10:58 PM (GMT -6)   
Hi Demaria, you are very welcome here, asking questions is how we help each other and sometimes our doctors find answers. You said year 12 of school, in the UK(?) does that mean you're in college or still in regular school? I am just trying to figure out your age because if you're only 17 or even 19 you're still in puberty, physically, mentally(they have figured out recently that our brain's don't stop growing until our bodies do, DUH)or emotionally and while the symptoms do fit CFS they also fit the extreme parts of puberty. I hope you've seen more than one doctor and had a whole bunch of tests to get to your diagnosis, I know your medical system is totally different than ours, but a family doctor or a pediatrician isn't qualified to treat CFS and it didn't sound to like you were getting any treatment and yes you probably already got the "there is no treatment for CFS" speech but a specialist can treat the symptoms if they admit it exists. I'm not saying you don't have CFS the age and puberty are normal issues that should be factored into your treatment plan and I would ask to see a neurologist for a second opinion and treatment. I hope this was helpful and not confusing, Keep in Touch, you're not the only young person to get this illness and you will find a lot of support here even from older ladies like me :-)
Craniotomy/Meningioma 12/02,Bi-P. 04,SMI 06, Glu./Wh./La. Int.,IBS 06, Mig. w/ps.-seiz. 07,Dev.Sep.Sur. 9/07, 2nd Men./Tu. Gam. Kn. Rad.12/08, Rad. Hyst. 09/09, w/Meno, Fibro. 09, Disab. 09, EBV/CFS? 11, Vom., D + C w/Vertigo 12, C-diff, spas. col., Chr. Fat. Mod. 13, Lots of Meds they ch. often + herbal meds + alternative when I can afford it.

New Member

Date Joined May 2013
Total Posts : 2
   Posted 5/19/2013 11:10 AM (GMT -6)   
Thank you both for replying! After a lot of thinking, I'm relatively sure I do have CFS. The self-doubt just kicks in some times...

I'm in Australia, and 16 in final year of High School (skipped a year, that's why I'm younger). I've had symptoms since I was 11, which is rough.

Really, thank you both for your support.

Regular Member

Date Joined Oct 2011
Total Posts : 54
   Posted 6/1/2013 6:25 PM (GMT -6)   
I am alot older than you, but you sound just like me and I have CFS. I sometimes can do lots of things but I end up paying for it by getting achy or sick or whatever u call this. Its now all in your sound like u have CFS.
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