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a few questions about cfs

Posted , 5 users are following.

thebighomie
thebighomie

Hello,

I have a few questions (well, I actually have thousands of questions running through my mind at any given time, as CFS is such an infuiartingly confusing diagnosis to receive), that I would like to address here.

Firstly, a symptom of mine - I seem to go a few days feeling OK, just tired and fragile etc.. but then if I overdo it, or sometimes even if I haven't overdone it, I get a very strange, hard to describe feeling in my head. It kind of feels as though i'm dizzy, but I have no major trouble standing upright. My face seems to feel hot. My head feels quite full. It's very disconserting, and i'm always anxious that it will get worse. This strange feeling doesn't go away if I lie down or anything, and usually sticks around a few days. Has anyone else experienced this? and if so- is there anything that can be done about it?

It makes university very hard, as well as socialising, because I don't feel like doing anything but sitting still and trying to not aggravate my head any more than it is.

Second thing- I have a mild CFS diagnosis. The primary problem is fatigue causing a drastic reduction in my activities. HOwever, I never have any problems with aches and pains, or anything associated with fibro. Obviosuly this is a positive in the short run, because it means I do not have to experience these pains, but is it a positive thing in the long run? Does fewer, and milder symptoms correlate with a quicker and more complete recovery?? I am a (previously) fit and healthy 20 year old male.

Thanks for your time,

and I hope YOU are feeling ok today

0 likes, 3 replies

3 Replies

  • jackie00198
    jackie00198 thebighomie

    Posted

    Hi there--

    So sorry you're experiencing ME/CFS. Regarding the feeling in your head, I sometimes feel a "fullness" in my head, like it's full of cotton or something. It's very hard to describe. I don't worry about it. I just know it's part of the wonderful world of CFS. This illness can cause so many symptoms, it would be very hard to chase down every single one. My specialist says this illness resides in the tissue of the brain. That's why there's so many possible neurological symptoms (dizziness, etc.), like what you describe. You also ask about your prognosis. Since you're so young, I think your chances of a good recovery are pretty good. Also, you're very very lucky to have a mild case. I know it's very hard to accept being ill on any level, but trust me on this. Given that you got ME/CFS, you're lucky that it's mild. So how to maximize your chances of a recovery? Get plenty of rest, pace yourself, and don't push yourself. Before I got this illness, I'd know that I could increase my stamina by gradually doing more and more. I've found that strategy made me much worse after I got ME/CFS. Also, live a healthy lifestyle. Especially, avoid alcohol, sugar, and caffeine. They can worsen symptoms. Finally, destress as best you can. Stress can really worsen symptoms. So do whatever it takes to relax:  listen to music, do deep breathing, meditate, do yoga, whatever works for you. Do your best not to worry about what may or may not happen. This is totally nonproductive and only leads to anxiety and stress. Good luck to you!

  • wknight
    wknight thebighomie

    Posted

    I can relate to what you are describing and if you only have a mild diagnosis then chances of , I won't say recovery, but getting to a place where you feel so much better is a distinct possibility. I rode 30 miles on my bike a few weeks ago, something a few years ago I would never have dreamed of.

    How did I get there, by pacing. For years I didn't take it seriously and I would boom and bust like you. Then I used cycling as a way of pacing myself and forcing myself to tale rests. if you are at Uni disappear to your room for 30 mins and do ABSOLUTELY NOTHING .

    My advice is find the level of activity where you don't relapse. Once you know that then you can slowly build up from there, Gradually my body learned to cope with the extra demands. I still don't always feel great and its annoying when I say I can't do things and refuse to go out with people. Initially I told no one but I then told a few close friends why I might cancel and they were very supportive and actively encourage me to go rest so I can join them with other activities.

     

  • tina58520
    tina58520 thebighomie

    Posted

    Hello,

    I am really sorry to hear you have this horrible condition.  However, I agree that you are young and may be well enogh to overcome it.  However, without being very negative, some people who have been diagnosed have been told if they have it for over 2 years then it stays.  You are in the mild stage.  I was in the mild stage in 2008 when I was diagnosed and in my early forties.  I managed to work part time up until 2013 when I had a major relapse which now sees me housebound and bedridden some days.  It has also affected my mobilty and I use a crutch and at worse wheelchair.  I am unable to walk very far. 

    The pain can be excrutiating so be thankful that you do not experience this.  I fully believe stress brought me where I am today and my advice would be listen to the people on this site who suffer in all very different ways.  Be prepared for ups and downs, but you must get rid of stress, be healthy (which may come hard for a student, I have a daughter a Uni too), and plenty of rest. 

    Please visit the Action for M.E. site where you can learn lots more and find lots of help and advice.

    I wish you all the very best, and good health.

    Tx

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