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Getting a diagnosis for CFS (post EBV / Glandular fever)

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Old 01-17-2013, 08:23 AM   #1
Join Date: Jan 2013
Location: Amsterdam, the Netherlands
Posts: 6
pumpkinx HB User
Getting a diagnosis for CFS (post EBV / Glandular fever)

Hi everyone,

Not really sure where to start, but I'm desperately seeking some kind of step forward in beating my chronic tiredness. I would really like to have an official diagnosis, as I feel this can help me move forwards with my life. Mainly just to feel like I am not crazy and imagining this problem!! So far, I have been repeatedly to doctors who just tell me I'm depressed and refer me to a psychologist. They don't believe the chronic tiredness can come from anywhere else. Well, of course I feel depressed - I'm too tired to live any kind of life!! It's an endless cycle, but I know that depression is not causing me these problems.

I'd love to hear from people who went through this process and made some progress, from getting a diagnosis to what 'treatments' they tried out and what worked for them.

So, a little about my situation: I've had chronic tiredness for about 5 years. It started while I was studying, a time when I was working very hard on multiple projects. At the beginning I thought I was just burnt out, and was told the same by a doctor. He did blood tests anyway (vitamins etc) and everything looked fine.

Since then my tiredness came on and off in bouts lasting for months, then vanishing for months. Because it was never continuous, I didn't pursue the help or treatments I should have. The moments when I felt a little better, I just wanted to get on with my life and forget I even had any problems, and I always thought it wouldn't come back again.

I often got bad headaches, saw dots in my eyes, and for about 1.5 years I had flu-symptoms every single morning and evening (sore throat, swollen glands in throat, blocked nose, etc). These symptoms would disappear during the day and were never ever related to actual flu.

Well, for the past years my tiredness got increasingly worse, partially because I moved to another country where I'm deeply unhappy / in the wrong environment, subjected to extreme stress, and generally am not living a healthy life. At the moment I have tiredness consistently. I can do some things, but not too much. For example if I want to visit the shops, I can never stay long, as being around people in a busy place with lots of walking makes me dizzy and tired. Being around friends is exhausting and I have started to avoid it. If I do too much on one day, I can be tired the next day(s) too. I cannot walk far, stand up for more than 30 mins, etc. I have zero concentration, an extremely bad memory, and brain fog almost constantly. Quite a difference from the person I used to be; actively walking, running, and getting top marks in all of my studies.

So, I'm now very determined to get to the bottom of all these problems once and for all. Recently I went back to the doctor, and had bloods checked again for thyroid, vitamins/minerals, and dormant diseases. Everything was fine, but I made one key discovery (that the dr thought nothing of): I once had Epstein Barr virus (EBV).

Back in 2005 I was taken to hospital after collapsing with a severe, but unknown, viral illness. I now know that this was EBV, which apparently lies dormant in my blood forever. I know that there is a link between EBV / Glandular fever and chronic tiredness, and I'm convinced this is part of the puzzle that is slowly getting pieced together.

In order to make progress, I really do want a diagnosis and to see a specialist in chronic tiredness (there's a hospital in the country where I now live, Holland, where there is one). But in order to do so, I need to get a doctor to take me seriously. What successes have other people had in terms of getting a diagnosis and what steps did you take to help manage the symptoms of tiredness? Also, has anyone else got a personal link with EBV or Glandular Fever?

Thanks in advance

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Old 01-18-2013, 01:05 AM   #2
Join Date: Jan 2013
Location: Amsterdam, the Netherlands
Posts: 6
pumpkinx HB User
Re: Getting a diagnosis for CFS (post EBV / Glandular fever)

Just wanted to add to my post: I'm 25, female, don't drink or smoke (at all), and I have a good diet. I get enough sleep (9 - 12 hours). I don't work anymore, but I was a self-employed graphic designer, so I was just working from home anyway. I get no financial help but am supported by my husband.

I've read a couple of other people's posts and a few times, various blood tests were mentioned. I'd also be interested to know what blood checks I could and should demand from the doctor in terms of blood viruses. I am definitely considering Lyme as I have spent summers in a high risk area and got 40+ tick bites (but never any rash). Thank you

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diagnoisis, epstein barr (ebv), glandular fever

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