Pacing & communication

[redelephant]

Hello,

I'm 20 years old and was told I have 'post-viral fatigue' after having undiagnosed glandular fever around one year ago. I went from being someone who went to the gym every day to someone who could barely walk up the stairs. I slept 14-18 hours a day for weeks. My body can no longer physically tolerate alcohol, so I don't drink, and my social life suffered quite badly (being quite involved in the club culture, obviously I couldn't stay out dancing all night anymore...), although I have since made some good friends now who are more understanding of my condition.

My Dr has told me I'll recover eventually, but it has been months and months and although I'm making slight improvements I'm still not really getting over it. He keeps talking about 'pacing yourself'. How do you pace yourself? I honestly have no idea what my limits are: I'm a real 150% effort person, which is probably why it affected me so badly in the first place: I made myself go running every day even though I felt awful. Then over the summer I took a job which involved getting up at 6am and not arriving home until 7pm. I thought I could manage it because it was a desk job, but it really set me back again. Does anyone have any advice on working out what is the right amount of activity to do? I don't exercise any more, but I really miss it. Are there any 'safe' exercises out there? They'd have to be very gentle, as sometimes even walking up the hill into town tires me out.

I also have a problem of getting family to understand just how tired I am, for example: I don't drive, and I need people to give me lifts sometimes, particularly if I have shopping or bags or whatever. But my family aren't the most generous types, and there's usually some sort of sarcastic remark or 'the things I do for you' type of comment, which I find very upsetting. I also feel stranded being dependent on people in this way; in the past I would just walk everywhere myself. What's the best way of talking to people about this condition and enlisting support? I get told just to get over it.

I went back to the Dr recently and he prescribed me SSRIs, because I am quite unhappy and it isn't helping the situation, but I really, really don't want to resort to medication. So I suppose I'm just looking for some general advice on coping with this.

Thanks for reading this long post, look forwards to hearing any comments.

[neil25]

Hi there, i'm in your exact postion im 24 years old and got post viral fatigue last May. I was very active before used to go to the gym at least 3 times a week and had a very busy social life. I had to pretty much stop most of it. I can go out but i don't drink alchohol and have to come back home quite early so it's not much fun. I've been to quite a few doctors but none of them can find anything. I've now been trying homeopathic medicine which has helped. I suggest you try seeing a homeopathic doctor as soon as possible. It's really tough i've had to give up my studies for uni and have mainly been housebound since May. Just wondering where do you stay? i stay in the Scotland. If you need a chat please feel free to send me a message.

[redelephant]

I was actually considering seeing a homeopath, because although I'm pretty cynical about it, I think the holistic approach to treatment could be good. The NHS experience hasn't been very helpful at all...

I'm at Uni in Hull at the moment, just about keeping on top of things. Last year I was in London, but after my symptoms started I barely did any work and decided it'd be best to transfer somewhere a bit quieter (plus I really hated the Uni I was at). I get so frustrated because I can't work as hard as I want to, and keep having to make sacrifices in order to manage, except then I always seem to knacker myself out anyway. It's difficult.

[Chronicfatiguetreatments]

My body can no longer physically tolerate alcohol, so I don't drink,

Hi,
i hear so many people talk about how they cant tolerate alcohol anymore. Im in the same boat. I tried drinking a little over xmas, but i got really sick and i just wasnt worth it for me. I think most people with cfs are like that.

Did you have an hard time getting diagnosed in the UK? Ive heard that they treat post viral fatigue or chronic fatigue more like a mental problem over there.

but anyways, welcome to the site.

[redelephant]

I had a hell of a time getting diagnosed. I went to my university Dr and told I have literally gone from running most days to not being able to do anything at all; she just told me I was stressed, and that I should try to do more exercise! She just kept doing the same blood tests then telling me to come back if I didn't feel better, it wasn't until I went for a second opinion months later once I was home that anyone tested me for glandular fever, by which point the damage was done.

I found the whole thing quite an ordeal, no Dr has really taken me seriously at all. I explained that if I drank alcohol I'd get erratic heartbeats, fainting and hot flushes and was met with 'don't drink so much then'. Even though I've been told what's up now, I've never been given any proper information on it or how to handle the situation. It's just a wave of the hand and a couldn't care less/you're just making a fuss attitude.

[java]

You have to do research yourself. Find the best and most reputable natureopathic doctor you can find. If he doesn't help, keep trying until you find one who does. Don't expect too much sympathy from the mainstream medical people. If they can't see it, they don't believe it exists. P.S.- You absolutely must detox your body and have a clean diet.

[Chronicfatiguetreatments]

I had a hell of a time getting diagnosed. I went to my university Dr and told I have literally gone from running most days to not being able to do anything at all; she just told me I was stressed, and that I should try to do more exercise!

You just have to listen to your body. Alot of people do good with pacing and knowing when to stop physical activity, before it makes them sick.
My current doctor has CFS, but i think hes mostly overcome it. He told me not to exercise at all.
I feel ok after mild exercise, as long as i dont go overboard. But i can ride my bike a little bit.

[StarDust]

Hi, I'm in the same situation as you. I'm 20 too and it's been going on for a few years already for me. They made me take SSRIs too, for me it did nothing but screw all my system up even more.