Long Term Glandular Fever

Symptoms

Here's a list of the type of thing we GF/CFS/ME sufferers well, suffer.

  Doctors seem to often get the wrong idea about this illness, I dunno, maybe they should just listen to their patients more, (and believe what they say). They suggest things like: "Maybe your ulcers are caused by biting your lips", (it's difficult to bite your uvula). Then they say: "Go out and exercise to gradually build up your strength", (when any exercise is a killer - my advice to sufferers is to just concentrate what power you have on actually 'living' what remains of your life rather than squander it in this way). Doctors start to get way off target when they start to postulate the causes of the illness. I don't know why but they never listen to what you have to say on the subject!

  To me it really is very simple. I suffer the symptoms of an active viral infection, which my body fights on a cycle of about a month and a half. My body stops fighting the disease too early and after a week of feeling relatively better, the cycle starts all over. Its like a needle getting stuck in the same old groove. The result of this is that I have now had the symptoms of Glandular Fever: (sore throat, tonsillitis, painful muscles and flu-like fatigue) for more than 15 years.

  The Ulcers are a secondary issue but are remarkably large, long-lived, deep and painfull, (imagine red-hot needles). They come whenever I have exerted myself (ie tried to live a normal life). If I continue to fight the illness in this way, the ulcers spread to the back of my throat where they get infected, and the ones on my lips get deep enough to bleed: caking my mouth with blood by night.

  Sleep seems to be a key issue. With 12 hours sleep I can heal myself, with 10 I can stay the same and with 8-9 I start to decline over a period of days. Anything less will start off fevers. My sleeping pattern is also completely knackered, partly due to the fact that my head requires less sleep than my body, resulting in either or pushing my body too hard, or insomnia.

  The fevers I get are as if my body's temperature controls have broken, they come in waves of sweat and can be painful but are definitely debilitating. If you ignore the fever for too long, or on any and all physical exertion you get the muscular pain. You do not want to get to this stage, it can be a killer. If you can imagine getting to the stage where you would gladly cut all your muscles from your body, or the stage where you are rolling around crying with pain because every muscle in your body is screaming out, then you know that exercise is counter productive...

  Mentally, while I have suffered greatly in the past from the 'fog' which descends over your brain when you are going through a bad patch, in more recent months, I have been lucky enough to regain powers that I thought might have been lost forever. I have also found that I am now able to perform simple mental tasks amid the worst parts of the cycle. It is ironic then to think that this very web site, is what I choose to work on at these times, and the fact that it has 200 pages is not necessarily a good thing, because it underlines (for me at least), just how much time my brain has been incapacitated in this way.

  In terms of mental outlook, I am fortunate in possessing a resilient and positive attitude which is only affected when pain reaches too high a level to be concealed. In terms of stress levels, I have a drive to achieve despite my illness, and have found that I have had to learn to control this desire to fight my condition, since without exception every time I have expressed it, it has made me extremely ill. I have decided therefore that, GF/CFS is not something that you can fight against. A cure?

  There are many vicious circles with the illness, one of the 'best' is the sleeping problem outlined above. You go to bed early to help your body recover. The next night you can't sleep because your mind is awake, and in the end you end up with little sleep and fevers/pain the next day. (I would probably recommend some sort of sedative to attempt to control this aspect of the problem, because it cannot be underestimated just how important sleep, and bed rest is with this condition). Another vicious circle is action/inaction. Inactivity leads to recovery, but also leads to stagnation, lethargy, depression and lack of fitness. Exercise on the other hand leads straight to hell.

  The best way to describe my good times are I feel like I am 40 years older.

  The best way to describe my bad times? Well, I wrote a very depressing poem about it.

  For a clearer list of defined symptoms take a look at this Myalgic Enchephalomyelitis The previous link is external to this site.

The previous link is external to this site.

page at cfs-news.org.

A page from James David Chapman's website. Located at: http://www.users.globalnet.co.uk/~jchap/ Site mirrored here at: http://www.j.chap.btinternet.co.uk
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