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Warm face, dizziness, tiredness, tinnitus, etc.
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Warm face, dizziness, tiredness, tinnitus, etc.

Hi everybody,

I have kind of already asked my question on the rare diseases/undiagnosed forum. It can be read here:

Thanks again to PlateletGal who answered my question and invited me to join this forum. I have not been diagnosed with anything but according to her, it sounds like I may have CFS. I still have to ask my doctor some specific things, i.e. thyroid and diagnosing for CFS. When I have done so, I will get back and hope that somebody can give me some tips.

I have been reading through some posts and guys, I really feel for you all, and I can also relate. Even though I am young, (male, 27 years), at 18 I got glandular fever caused by the Epstein Barr virus and for about two years produced CFS like symptoms as well. I was also at a stage (for a very long period) where I wondered when I would have the courage to stand up and take a shower, or go to the kitchen, etc. Fortunately for me, I was still staying with my parents, and I had a lot of support, so I realise I am one of the lucky ones. I was extremely tired, had chest pains, but above all my legs were terribly sore, even so that I couldn't sleep properly. You couldn't even pinch a bit of muscle without me screaming out in agony. I underwent many different tests (some pretty horrible) for more than a year, but they couldn't find anything. Finally, I was diagnosed with Epstein Barr, but apparently, I didnt' have it anymore! The symptoms (sore legs, etc.) were still there, but very gradually fading away. After about two years, I could live a normal life again. I even went to the gym, played sports, finished my studies, etc.

But about three years ago, I got a very heavy flu, and then the symptoms came back, although not as heavy as before. This lasted for about 1-2 months and went away again. This happened again about 1,5 years ago. Around that time (about 2,5 years ago) I started working full time, and because of the radical different lifestyle I neglected my health and fitness. My blood pressure levels increased, I got more tired, my weight increased, and basically I started to experience the symptoms described in the link above. I tried to get more exercise but I just couldn't muster the strength anymore to do that regularly enough to make a difference. The symptoms grew worse very slowly, but I am still one of the lucky ones, because I can still wake up, dress, eat and go to work. On some days I feel pretty tired and have some pain, but I can live a relatively normal life. Even so, this is bugging me because I am still young and obviously this isn't normal. But I am definitely very happy and privileged that it's not nearly what it was back in 1999.

In any case, when I have more time, I will came back here and tell you people what worked for me and how I coped, ten years ago, both physically and emotionally. I am very glad that there is a forum like this where people in the same boat can share their experiences and feel that they are not alone. Because you are definitely not alone! Best of luck, everybody. Until we speak again!

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Justin, most of us here can relate to the achiness and fatigue you describe even if it isn't CFS or FMS. It is not easy to have to accept the fact that we no longer are able to do the things we used to do and have limited energy causing us to have to modify activity and even adjust our lifestyle. A huge part of  any success we are able to acheive is usually by accepting this fact and learning how to adapt. Attitude is equally important. I always say that we need to focus on what we are able to do, not the things we no longer can do.

Look forward to you sharing some of your coping skills and hoping the days and years ahead are less painful ones for you.
Hi Caroline, everybody. I hope you're having a nice Easter weekend so far. I have some new info on my condition that I would like to share, and I hope that maybe somebody can shed some more light on it.

I have a chronic ear infection that I suspect is at least partly related to the tinnitus I'm experiencing (since my tinnitus gets worse when my infection gets worse). However, this is slightly beside the point. I went to the doctor because of this, and got some new drops to try out. I then also asked him to print out the results of all the blood tests I have undergone so far. This is quite a lot (about 30 or so) and I won't put all of them here (except if they prove to be relevant after a comment), so I'll just write those results down that are relevant according to the doctor and which pertains to the questions that PlateletGal asked me.

Testosterone: 13 (on subsequent tests 12 and 12) --> I understand that it's not too low, however it lies in the bottom range of accepted counts. Apparently, not a big deal, but I would just like to be sure.

Alanine Aminotransferase (ALT) --> This one could be relevant. Apparently, this one has stayed high most of the time: 70, 96 and 96. Doctor says this has something to do with liver function, and that higher counts can explain feelings of tiredness. I would like to know if anybody knows more about this - what does a high count mean, reasons why it could be high, etc. One reason it cannot be is because of alcohol abuse - I never used alcohol on a frequent basis and in the last couple of years in fact it affects me negatively so I only drink on very rare occasions.

There were some other tests that showed slightly abnormal counts but my doctors says they can be attributed to natural fluctuations. If anybody is interested I could put them here. Unfortunately the names and abbreviations are in Dutch but maybe one can deduce the meaning, eg. maybe the abbreviations are used as is in English. They are:

- LDL cholesterol
- HDL cholesterol
- triglyceriden (probably has a similar English term for this?)
- M.C.H.C.
- M.C.V.

PlateletGal asked me if they tested for thyroid problems, and now I can answer you: yes they have, and apprently there aren't any problems.

I now also asked my doctor if they can test for CFS and he asked me that usually, the ALT test (mentioned above) can be an indicator of that. But apparently, my counts aren't too high to be that much concerned. If you are reading this, have you been diagnosed by CFS, and if so, how was it done? Do you know something that my GP doesn't?

I would like to add here that I often experience not so much tiredness, than rather subtle muscle pains that get worse when I try to exercise. This is not normal muscle pain because of exercise, I can only describe this as similar to when you have a fever and are forced to walk somewhere, make up your bed, or whatever. I have an unconfirmed suspicion that it is caused by, or at least aggravated by, my lifestyle, which involves sitting in front of a computer for most of the day, and relatively little exercise. I also think that my lymph nodes are swollen concurrently, which may explain the quasi-flu-like symptoms (also, I have a lot of headaches, although mostly they are very slight). This is difficult to say for me, but masturbation for some reason definitely aggravates this, not only this but also all my other symptoms (such as warm face and tiredness). So therefore I try to stay away from doing this as much as possible. I am also trying to diminish my computer time but this is difficult.

Thanks for your consideration. I promised in my first post that I would share with you some of my coping skills that, basically, I was forced to acquire when I was suffering from glandular fever. However I may disappoint you with my own contribution, since, at least at the beginning, I really didn't cope very well. I was alone for most of the time (with only my family around) and I became very depressed. I did, however, find an outlet that somehow made me survive the darkest times. It's a bit silly, really, but I discovered a free musical computer program from a PC magazine (and later a follow-up of that program) I was buying which allows you to compile musical mixes on your computer from pre-existing samples that you can drag and drop on your desktop. Since I have musical talent and was physically unable to play piano at the time, I immediately latched unto that and eventually made more than 2,5 hours of rave, techno, and even hip-hop, drum&bass etc. Especially the rave tracks were very dark but somehow I felt like living those dark moments more fully, I was almost wallowing in it. But in a way I was also proud of my achievements since I created something which was pretty good in my opinion and I thought some people may have found it worthwhile. Of course I realise that it wasn't all mine since the samples were not created by me to begin with.

But OK, that was one of my main outlets of frustration. I guess this is about the same kind as teenagers do when they get dumped or something and then they just throw themselves into metal music or something. A bit of escapism.

I had other forms of escapism as well, such as computer games. Yes and of course this didn't solve my problems, far from it, but it made it more liveable, for a while. This is the thing, escapism can be dangerous because it is so addicting, but it definitely is a coping mechanism.

Of course, I would have been a lot worse off weren't it for the support of my parents and my brother. I'm a bit sad to say that most of my friends didn't make an effort to call or visit me, and no one did it on a regular basis. Maybe that's just human nature - I have peace with it now.

I am also very used to sitting inside and doing squat just because I'm used to it and it's comfortable. To get outside and do and see things, even if somebody just takes you with a car to the beach or park or whatever and just chill there for a while, this makes a bigger difference than you might think.

When I think back to those times the biggest regret I had is that I didn't try to reach out to people more. I was just alone in my little dark corner. I continually tell myself to try and be more socially active. This is of course sometimes difficult (and I realise probably way more difficult for most of you reading here) but really try to make the effort. This forum is already a great start, but I think personal contact with people in your own neighbourhood is definitely better.

Some random ideas: Join a chess club, or bridge, or something. If you live in an apartment with an entertainment room or something go there and engage in some small talk with your neighbours. If you're religious, get involved with some church/mosque/synagogue/etc community work or a small group. Just do something. I however am the last person to tell you what to do in this regard - this is one of my weaknessess that I try to improve.

Philosophically, there's a whole lot that I can share as well. But everybody has his/her own opinions and beliefs. Go with what you're comfortable with. For me, I have found it very stimulating to read and learn beyond my traditional beliefs and interact with people that believe differently from what I do. This also resulted in some conflict, but I feel that I have grown as a person because of this, and have more peace with the fact that other people do not believe as I do.

I can probably say a lot more about coping but I am still young and can probably learn more from some of you than what you can learn from me. So I'll be keeping an eye out for any new posts, and I wish you all a more healthy time ahead, and I thank you all for sharing as well.


Hi Justin,

I just wrote to the first forum where your posted your question but I am writing here again as it seems you moved to this forum.

I am experiencing exactly the same symtptoms as you since a couple months ago. In addition, in my most recent blod tests the tryglicerids count is increasing sharply.

Doctors have not been able to give me an specific answer so far. Did you get any clues about the diagnosis?

Thank you very much.

Hi Santiago,

I replied to you in the other forum. By the way, not that I would know much about it, but you probably do:

Hoping you get answers and results soon!


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