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

There's not a lot you can do but it will pass. You are probably already through the worst. You can help yourself by eating properly and ensuring you get plenty of vitamins and minerals which can be depleted in psv sufferers. Particularly potassium - try a banana or six.

Hope you feel better soon

This may not be what you want to hear but i was off work for 11mths with PVFS - HOWEVER during the time I was off I did some research and found out that some people got better much more quickly. If you can, rest up and do not push what you can do - you will get better through rest and time.

DH has had this twice. The first time he was off work for nearly 4 months, the second we recognised what was happeing and caught it sooner, and he was off for 3 weeks.
Eat well, try to rest as much as possible.

thanks for the replies

cat10 omg 11 months, how awful for you. Did you take any medication or supplements for this?

I can barely stand up most of the time, it is like the flu has never left me.

So resting is much needed, dh is really supportive.
tbh I cry alot because of the frustration, is this normal too?

gp has prescribed me anti depressants for this

ds1 had it for a good while after last xmas

I have been crying alot today

I have visited a few websites and my symptoms are very similar

My 16 year old niece has been suffering from this since she had a nasty chest infection in May.
It is her GCSE year this year adn she needs good results as she wants to study medicine, so it is bad timing for her. As far as I know they have not yet found anything that helps, other than lots and lots of rest adn sleep. (at the moment she only goes to school every other day and is excused from PE etc)

I hope you feel better soon.

hi, my sister also had this - although it was intiially chronic fatigue syndrome (MS)with lots of post viral pain in the upper body - knowcked her for 6 for best part of a year, the main things which helped were lots of sleep (and I mean lots - she would sleep 12 - 14 hours a night at worst) a very fresh and simple diet (no preservatives, pesticides etc or moulds (of any sort, I'm not suggetsing that you normally eat mould!), accupuncture (which her gp referred her for) and really not doing too much - tiny things exhausted her - and this all cam e about as a result of a cold at xmas that just never went. She's not 100% now, but is much much better and really had to take those tiny steps to get where she is now. I dont know if this helps, but wish you all the best in your recovery.

thanks for your kind words

Hi evaangel, I'm sorry to hear you're going through this. My son had chickenpox just before his third birthday and has now been ill for three years: he was only diagnosed (with ME) this April. Whether it's referred to as PVFS/CFS/ME etc seems to depend on who you talk too. We still believe that seeing a meical herbalist at the very beginning stopped DS from being too severely affected.
He suffers with the pains, headaches, sleep disturbances and anxiety etc.

There is a very good online forum called Foggy Friends (which is currently closed to new members until 2nd Jan as the admins are taking a well-earned break) and you may find some good info and support on there.

Failing that, has your GP suggested anything at all? I know ours hasn't and he's one of the good ones.
Talking to a herbalist might be an idea as they will also be able to give you some info on supplements that may help.
There is a lot of info on Magnesium and Coenzyme Q10 online which may be worth looking at.

Hope you're feeling a little better and do get in touch if you need to chat. Rest is really the only way but it's so difficult I would imagine x

Also-have a look here: www.drmyhill.co.uk/
We're taking ds to her in February but she has some very good documentation/info on her website.

thanks parachutes

I did not think it could effect them so young

my gp wants to rule out other things

I have blood tests to look forward too on friday

she states that some viruses are taking ppl months to fully get over

It's a really good thing that he wants to rule out other things as so many people have to fight for that (from what I've read over the last few years.)
I hope he manages to help you. People do recover fully from PVFS but it's usually because they rested and took really good care of themselves; It is a huge shock though and I'm sorry you're going through this.

I have pain in my lower back and under my ribs and in my arms
headaches
dizzy spells
extreme fatigue
tiredness
sweating
malaise
sore throat

it is like the original flu has never left me

That's very similar to ds. Obviously it was a lot harder when he was younger to get the full picture but now we're seeing more and more symptoms. He also has an enlarged lymph node in his throat and gets lots of nosebleeds.

Have you had any blood tests at all? If yes, did they show anything? Ds has elevated lymphocytes (showing recent infection) and other elevations. His most recent showed other abnormalities which is why we're taking him elsewhere to ensure nothing's been missed?we had a hard time getting his diagnosis and our GP, at that time, wasn't keen to do anything about it at all. It's a really good thing that yours is running these tests, though I do appreciate how frightening this must be.

I've also just found this: www.sleepydust.info/2005/05/05/recovering-from-pvfs-in-the-early-stages-of-development/

th e whole sleepydust site is very good.

sorry-my typing/spelling/grammar is rotten today!

Over-hauling your diet really does help. I started juicing every day - spinach, apples, carrots and celery was my choice, plus eating lots of salad and raw veg, nuts, seeds, fruit I still ate cooked food, but kept it very simple, and made sure a good proportion of my diet was raw and fresh. Cutting out all processed food, and most importantly sugar, really helped me. If I start to eat badly again - like over Christmas - my symptoms come back again. As long as I eat really simply and healthily, I feel okay. It took a good couple of months of eating like this to really feel back to nomrnal, but I noticed a difference within a few days. Sugar is the main culprit for me.

yes eating properly seems to be key to feeling better

eating properly was what finally cured me, I'm sure of it! I tried various homeopathic remedies etc, but eventually came across some info re candida (like thrush but not iyswim) and followed a strict anti-candida diet for 2mths - it was TERRIBLY boring and dull and very hard to stick to but well worth it imo - no sugar, no yeasts etc, no wheat...basically only fruit/veg/meat/pulses - very healthy! That was when I felt a real improvement. This was all 5yrs ago, and I still get a bit worried when a cold or flu lingers, and occasionally I think it takes me longer to shake things off than other people, but in general my health is fine, I am back to FT work and have a 1yr old dd.
Look up anti candida with ME and you'll probably find some info...but also beware internet searches, there is a lot of dodgy info and supposed miracle cures around re ME/CFS.
take care and most importantly take it easy!!

OH and tempting though it is, try to stick to a reasonably strict "timetable" - get out of bed eg at 8am even if you're just moving from bed to sofa, if you need more sleep have an afternoon nap rather than lying in late, and then even if you do get a peak in energy late in the evening which is quite common, still go to bed at a reasonable time. Sounds dull, but is all to do with keeping all of your body's rhythms ticking along

hi caz10

I am going to give your food regime a good go

dh went shops got me fruit, veg and a chicken

I will eat lots of veg cause I love it

what about diary products are they ok?

I had post-viral fatigue in 2003, and needed 3 months off work then was redeployed to a less intensive ward (am a nurse).

I then got viruses that knocked me out for 9 weeks in 2005, and ended up leaving for mat leave at 23 weeks.

Every time I get a virus I get it worse than I should, and it takes me weeks to recover fully.

To be honest, I never have loads of energy now, and really suffer if I have too many late nights etc.

I'm okay with dairy products in moderation. Sugar, I satisfy my sweet tooth with alternatives like good quality honey and agave syrup, which is a natural product made from cactus sap i think. It's really nice. You can get it from the health food aisle in some supermarkets. But I only use the sweetners in small amounts. Just cook simple natural food from scratch, lots of extra fruit, veg and salad, cut out all the crap and you WILL notice a difference

It's hard to motivate yourself to do this when you're feeling so rubbish, but it's worth it. That was my problem to start with. I was so ill and tired I'd stopped preparing food and was just reaching for easy convenient stuff and it was a bit of a viscious circle.

after searching the web and finding different information.

For those of you vwho may know this

Is PVFS and ME the same or is there differences?

In ME sufferers the symptoms seem to go on for years in some sufferers