post viral syndrome,,,advice please

[evaangel]

I contracted a flu type illness about 6 weeks ago, which knocked me off my feet.

but I have not fully recovered, went back to gp today and a suggestion was made that this may PVS

I had heard of this, any advice would be appreciated

Sorry to hear you're suffering from this. I can vouch for the fact that people are taking longer to get over viruses this year - I had a chest thing a couple of months ago and it's playing havoc with my health. I'm not getting over a throat infection which hasn't helped.

I also was diagnosed with CFS/PVS in 2003 after having a particularly nasty chest infection and glandular fever which went undiagnosed for ages.

Don't be too anxious over the blood tests - they're a good thing.

Things that helped me were not staying in bed all day (if you are exhausted rest in a chair) try to get a bit of fresh air every day, taking vitamin B supplements, when you do feel well DO NOT overdo it as you will regret it later when you feel rubbish again - try to do the same level of stuff every day (as caz said) otherwise you can end up in a circle of feelin well and overdoing it one day and spending the next recovering, and get plenty of rest.

Hope you feel better soon.

thanks for reply AM

did yours get better with time and did you put it down to eating healthy?

Eating healthy definitely helped as you get all your nutrients. And yes I got better with time, though since I have to take it easy if I overdo it or feel the hint of illness. But when I first was ill I didn't rest I kept working 2 jobs to support my studying so was close to burn out and was forced to take it easy.

It's good that you're getting help early on - it took me months to do so.

One thing I did for my CBT and counselling is keep a diary - your sleep pattern, everything you eat, what you've done - with times and how you feel. It can help to identify behaviours that you may not be aware make you feel worse. It's a bit of a drag to do this but it can help in the long term.

Can vouch for the not overdoing it even if you're feeling okay - I went out last night, stayed up until 1.00am ( well it was NYE! ), didn't drink, but today feel like I have a bad hangover, not just tired. I've been lying on the sofa for most of the day feeling nauseous and with a splitting headache. I over did it.

hi guys

been signed off work for another week, waiting on blood test results coming back, my boss is not too happy about this

do I need to make lifestyle changes as it can be an unpredictable illness?

I think so, even just for the short term.

It's hard to tell because I had it in my mid twenties, now I'm early 30's, my lifestyle has changed anyway. But I definitely scaled back, when I was ill I had to say no to lots of parties etc anyway, and once I got better I was a bit wary of pushing myself. Then when I went back to FT work I was too pooped after work and at weekends to do much anyway!

Somehow the years passed by and I am a sad old mother hubbard with no social life to speak of lol! But that would probably have happened anyway, and I now meet friends for lunch/coffee instead of rip roaring piss ups!

Not sure how old you are or what your circumstances are - I actually had a friend who had this, she was younger and single and a much bigger partier than me, she found it hard...whereas sometimes I was glad of the excuse!

Oh - re ME vs CFS - some people use the term interchangeably - I always said I had CFS or PVFS because I knew a girl with ME who was seriously seriously ill - years in a wheelchair etc - I would never have compared myself to her. To me ME is much more longlasting with worse symptoms - but that is just a personal view

I am 40 this year caz10

with 14,13 and 3 year old

My sis friend had ME and was confined to wheelchair about 50% of time

whereas with me I can walk but not far, esp since the onset of the illness,reading about PVS this seems to be the suggestion from gp classified by my symptoms, but she has stated she will not make the diagnosis till oher things are ruled out iyswim ie blood tests

gp has sent blood off to test for glandular fever also
I have cut out on sugar and crap processed stuff, in the hope of feeling better

Your symptoms sound similar to mine

It is scary and depressing to start with, but honestly there is no reason why you can't be feeling better in a few weeks, or, worst case scenario, months.

I'm pretty sure the diet made a big difference to me - again I see that as being a distinction from ME as that other girl I know had tried everything under the sun to no avail.

Im sure it's easier said that done with a 3yr old, but really try to take it easy, doing too much seems to be a sure-fire way to make things worse.

I don't know if it still exists but there used to be a good ME chat forum on the net doctor website - good moral support - also I think there are some mums on here with ME.

Good luck!!!

thanks caz10

dh is a great support to me, doing the tea, dressing little one when my exhaustion takes over

but I am also finding that just sitting there and colouring in with ds is just as stimulating, couldnt go to the park with him tody when dh took but just the attention for him is just as important

you are right it is scary, maybe cause you fear the worst is wrong iyswim

thanks for your posts

they have lifted me and given me hope

It is scarey and I got very frustrated and depressed. Even now, I feel like I have a certain reserve of energy, and if I use it up, that's it, I'm wiped out again for a couple of days. So, you have to learn to use that reserve of energy wisely. In the beginning ( well, after three months of feeling utterly rubbish, before finally deciding to try to do something about it ) I used all my energy to concentrate on preparing food and eating healthily. That was about all I could manage. As I began to get better, I gradually added extra things into my day, that I could manage - usually child related, obviously! Now, I manage day to day pretty much normally. I get the children ready and take them to school. I come home, do a bit of housework, see a friend, or take little one to playgroup. I pick the kids up from school, make them their tea etc. luckily, dh is usually here to help me put them to bed. However, by the weekends, I'm usually knackered, and need to recuperate. I find it really difficult to join in with the family stuff, like taking the kids swimming, or going out for a walk. I tend to do stuff like take them to the cinema instead, where I can just sit for a couple of hours! I find I need to rest a bit during the week too. If I feel tired, even just sitting and doing nothing for 10 minutes helps. You need to listen to your body. I rarely go out and am usually in bed by 9.30. If I do have an evening out, I plan it for a time when I know I won't have to do anything the next day, so I can spend it recuperating, often in bed.

My story is I had glandular fever last February, but it wasn't diagnosed until the end of April. I've been feeling pretty much normal since about last July/August, providing I take great care not to overdo it and I eat well. Some days I feel really good, and other days I feel rubbish, and I've had a few colds which have knocked me back a bit, but I am definately getting better. It's taking a long time, and I think I will now always have to be careful, but it's worth the effort, if I feel even half as good as I did at the beginning. I'm just really scared of getting another horrible virus, like proper flu, because I dread to think what that would do to me.

idontlikesundays
my fears are pretty much the same
I am waiting to hear from gp whether it is glandular fever but I am being tested for various things also
I am so concerned about over doing it, I bathed my ds and was so exhausted by this, dh took over dressing him
I cried so much by this but we decided it was best I do other things which mattered also colouring in, watching tv with him
I have fell into a depression too whereas I feel detached from everyone, I dont answer the phone or my text messages as I just dont want to tell ppl that I dont feel right

good luck to you!

You have to be completely selfish when you have this illness Evaangel, even if it means letting people down. Just let friends and family know you still care about them, but you need to recover and the only way you can do that is by resting for as long as it takes.
I have just recovered from glandular fever and in the process I have upset my friends. Like you, I didn't answer texts and just felt overwhelmed and exhausted by such little tasks.
I'm ok'ish now, and friends are alot more understanding, but I feel your pain as the whole experiance can make you feel so isolated.

Yep, it's a tricky one. Because you don't actually look ill, a lot of people don't understand, and the longer it goes on, the worse that is. I know some people think I am lazy or just being off with them.

I am sort of getting the attitude
"you should be getting better now"
my mil has never heard of the illness but researched it and has a better understanding now
I think unless you have been through it yourself or know somebody close, you begin to educate yourself

I beleive alot of gp's dismiss the idea of PVFS which it makes hard for a diagnosis

tiredville I understand the being selfish part as it is the only way to maybe a full recovery

at one stage I thought I might have PVS as I was almost constantly tired. Omitting gluten from my diet has meant significant improvements and being able to exercise again. So I'd encourage you to either try gluten free for a couple of weeks or try some digestive enzymes that help to digestive gluten (and dairy). Biocare Glutenzyme plus is not too hard to get hold of, many shop-sold enzymes are not much use with gluten.

As your muscles waste with lack of exercise doing anything will be harder. So when you can do some exercise, even if it involves seated exercsie and weightlifting with something as light as a sweetcorn can! Even the gentlest of exercise carried out infrequently is better than nothing.

If you feel better some days and worse others this may not be "over-doing it". It may be that your diet on those days has not included something that sedates you! Gluten sends me to sleep now.

can you buy gluton free at supermarkets?

gluten sry

yes you can, Sainsburys has a good range. Potaotes and rice are both gluten free so traditional meat and 2 veg meals or stir fries are good, provided you are careful about gravy or sauces. Its cheaper than buying special food. Some types of Bisto are gluten free or you can use corn flour to thicken it if you make your own with meat juices. Sauces are often a problem. It's a good excuse to have a fried breakfast or you can have have rice based cereal, quinoa flakes or boiled egg with rice cakes or gluten free bread. Bread is tricky unless you have a breadmaker and doves gluten free flour (available in upermarkets) because shop bought gluten free bread is both expensive and horrid. The allergies forum has lots of advice.

If you want to make your own cakes then Xanthum gum (from Tesco) is invaluable.

If you try gluten free you need to give it at least 2 weeks.

There's some good advice here. The sore throat does make me wonder if you might have glandular fever though.

I was finally diagnosed with PVS in 2001 after a particularly nasty throat infection which I stupidly continued to work through. I was already pretty poorly after a bout of glandular fever in 1997 that went undiagnosed for ages. It wasn't until a couple of years ago that I felt truly back to "normal". I was signed off work for 3 months initially, and I continued to have relapses for the next 5 years.

My main symptoms were extreme fatigue, aching back and legs and a susceptibility to every virus going (this has continued to this day). The only thing that finally got me through was rest, and lots of it. People will tell you to snap out of it, and "you'll feel better if you get some exercise". Bollocks. Exercise, other than very mild stuff like walking slowly around the block for fresh air, makes you worse not better.

Interesting about the anti-depressants. I was prescribed with those as well after the first 3 months and they helped enough to get me back to work. I don't think they really know why they work - there was no suggestion I actually had clinical depression.

Good luck with getting the correct diagnosis and getting over this. The most important thing to remember is to rest. This is particularly vital should you contract another cold or 'flu, or you will just bring the PVS back. Hope this helps.

Can I tentatively suggest that you take a supplement of Vitamin C plus zinc and selenium? Sometimes, even though your diet is good, you can still be low in these essential nutrients for your immune system, so supplementing them can help your immune system to re-group and fight back. Chronic viral infection can deplete these nutrients as the immune system is constantly trying to fight off the infection but doesn't have quite enough "fire-power" to complete the job.

forgot to say (for the benefit of anyone else reading this) that the longer you have been ill the longer you will need to be gluten free before knowing if it will benefit you. That is because the damage to your gut is more severe and takes longer to heal. Also you have poor nutritional status from malabsorbtion and that takes longer to improve. But for someone ill for a short period a couple of weeks should be enough to know if it will help.

I was consistently told my problems were because I was depressed. Actually I was depressed because I had no energy and couldn't do anything.

If you have glandular fever obviously this isn't going to help.

thanks tatt

Thank you for directing me to this thread Eva..I developed flu in the first week of December and although the intial illness subsided after a week or so..I ve never totally recovered..Ive just realised too that I was on 3 lots of antibiotics during the illness and now I feel tired, washed out and wobbly..I also feel dizzy occasionally..which is not nice as I have a problem with my balance anyway..and now its worse...I feel really down too

how are you today spacecadet?
and anyone else suffering out there