Mumsnet Talk

I have just been diagnosed with PVF following either an upper respiratory infection followed by flu virus or just an upper respiratory infection and what i thought was flu was sudden onset PVF.

My symptoms are horrendous and I'm struggling to be positve.
Nausea and dizziness in the morning
Very wobbly weak legs
Burning pain in leg and arm muscles
Headache as though something is pushing down on the top of my head.
Muscle fasciculations - it feels as though my whole body is vibrating - mostly chest and head.
Palpitations and heart flutters.
Upset stomach
loss of appetite
Difficulty sleeping/ staying asleep
Night sweats

It feels as though my body has just given up.,

I feel very down about it although i tend to feel slightly better as the day goes on. I have been housebound (mostly bed bound) for nearly 5 weeks and i'm not getting better,

I'm a terrible mum to my dds (2 and 4) as I'm just unable to do anything. It's breaking my heart not to be able to do anything with them.

The doctor has advised me to rest and try and eat what i can. I have had blood tests which have come back negative. I'm having a heart trace and doing 24 hour urine test.

My dh and various grandparents are helpful with dds (as in have pretty much taken over) but I feel so down and hopeless and no better......

My mum had ME for 5 years so know what it can be like (which doesn't help) Does anyone have any experience of getting better sooner than this. Or any tips as to how i can help myself.

I'm getting pretty low about it all. Could do with some positivity and a hand hold.

I think you know that you are actually doing the right thing, although it must be very hard with little ones. You do need to rest now and not push yourself, then you have the best chance of a good recovery. I can appreciate how hard it must be but at least you have your dh and yours and his parents who are being supportive. Don't have any radical suggestions because there are none unfortunately. You know the pitfalls of pushing on with the experience of your Mum's illness, so don't do it. I'm Mum to a 20 year old with severe ME btw so like you I know what I'm talking about. If you want to chat, even just for morale, feel free to pm me.

Thank you Chocoholic, Im sorry to hear of your 20 year old.

Whelk, so very sorry to hear what you are going through.

No idea what you think of alternative approaches, but we are about to go down that route with my child who has had post-infective symptoms for months. The drugs he is on manage the symptoms for him and let him get on with his life but are no cure and we are desperate to get him off them.

Your symptoms sound appalling, do hope your GP is onside and helping you. Have you ever considered Lyme Disease? Might be worth a google .....

Thanks for the reply Gasblue - the symptoms are appalling indeed.
I have never been anything near this ill before.
Everyone around me seems much more relaxed about it saying it will pass......but surely your heart and nerves are pretty serious things ..... can't imagine it just passing.
But I guess I need to be positive (wry smile- thats what everyone says). Quite difficult when Im spendin 23 out of every 24 hours in bed feeling like cak!

May be a silly question, but have you had a blood test for thyroid problem. The symptoms are similar to mine, when diagnosed (2 and a half yrs ago) with an overactive thyroid.

You feel as if your body has given up and in one sense, for the moment, it has, and it may be (I know nothing about you) that you are not just now feeling the affects of your recent illness, but also the effects of every other stress factor in your recent past rolled up together. If you've been felled like this I would expect there to be something lurking in the background.

One thing we have lost in modern life is the concept of convalescence. Fifty years ago you'd have been sent to the seaside for a month after an illness like this. Now we expect to be back to full speed as soon as the temp goes down. If you can accept that this will take time, and not fight it, things will be better. This is no time to try to be Superwoman.

Can you change your routine so you get up later in the mornings, can your OH do breakfast and the school/nursery run? Can you have a rest in the afternoon and go back to bed when the DCs go to bed? Can you eat stuff you like and that is good for you? Can you let the family help you out for as long as it takes?

If I was in this situation, I would be taking a good B complex supplement as well and some heavy duty Vitamin C.

I'm not inclined to worry too much about Lyme Disease at this stage, but I bet if you had proper adrenal testing (not available on the NHS) your levels would be low.

Please keep posting - I'd like to know how you're getting on.

D

RockinD made great point, sounds very much like something in background, whether it's stress-related or a pathogen and possibly a combination. Suggest you be very kind to yourself, and take every test the NHS will offer. Please keep posting.

I was diagnosed with PVF about 10 years ago. Fortunately my symptoms weren't as severe as yours, but I still found it really tough, so I really feel for you.

Firstly, it's great that you have support, but don't be afraid to ask for more if you need it, nothing will make you worse than trying too hard. I remember one day trying to dust a room, just a small single bedroom, and standing in the middle of it sobbing because it felt like the room was growing bigger and bigger as I shrunk and the task of waving a duster looked insurmountable

I had little support from my GP, who basically didn't know what to do with me apart from offer me anti depressants, which I didn't want as I didn't feel depressed, just frustrated with my inability to do something. A colleague of mine had previously had glandular fever and she had fought it with an elimination diet, which in the end I decided to try. In a nutshell, I had to eliminate anything at would ferment in my digestive system as I wasn't digesting them properly - such as yeast, sugar, vinegar, booze etc. If you clear your system of these for 3 months it 'forgets' it couldn't deal with them and starts to work properly again. For me I felt better within 10 days (I vividly remember cartwheeling across the garden and laughing like a loon) and I stuck to it for a year. If you want more details, let me know and I will happily share them

Once I started to pick up, I then tried to do some physical activity - I felt trapped in a vicious circle of being tired, but because I laid in bed so much I wasn't tiring myself out physically, so didn't sleep, so felt more tired, and so on and so on. So I started swimming, literally doing one length the first few times I went, and increasing it. I found that gave me the physical tiredness for a deep sleep that night, which in turn gave me a little more get up and go the next day. I also forced myself to have some me time, and had a reflexology session once a week - no idea if it worked, but it forced me to do something relaxing that was all about me, which was an important lesson

All in all from diagnosis, through researching all the options, to following the diet, the old me started to resurface in about 6 months and after a year I was living my full life again. I am more aware these days of fatigue and force myself to stop before I get tired, and if necessary cut out certain foods for a week or so

I am thinking of you, and I hope you start to recover soon. I remember how draining it feels. All the best, I'll keep following this thread and let me know if you are interested in my approach or just want to chat x

Thank you for your replies. I have had thyroid tested I'm pretty sure.
I am literally bed bound 23 out of 24 hours. I really can't do even the most basic of things. A few weeks ago I pushed myself to do a few things and i think it set me back really. So now its nothing.

Zuleika - Your story is encouraging. Its quite similar to what my mum did.

Yes please to details of the diet,

My glands all over my body are so sore today and the nausea is dreaful.

Just to be clear Im pretty sure what happened was an upper respiratory infection and then a couple of days later a dramatic start to PVF.
The first infection lasted a week and the PVF has gone on for 4 weeks nearly.

Does anyone have experience of ADs with PVF/ME? I am feeling incredibly down (have even thought about ending it all when I'm feeling particularly down which Im utterly ashamed about and never ever have before)

Whelk, you absolutely have to tell someone in real life what you have just told us. There is a lot of help out there for you. Am desperately sympathetic to you. Please get your family to speak to GP out of hours service

Are you depressed, or, as someone else mentioned further up the thread, are you just exhausted and frustrated, which of course you are perfectly entitled to be?

Personally I would steer clear of ADs unless there was a firm diagnosis of depression and a real clinical need. Effects seem to be variable, side effects seem to be general and, whatever the docs say, they can be very difficult to get off.

I have been thinking about you overnight and I am firmly of the view that you should try to heal yourself without too much medical intervention if at all possible. Zuleika has the right sort of idea.

My worry would be that you can go one of two ways here, you can nurture yourself and your adrenal system and get back to normal (or something approaching it) over a period of time, or you can go the AD/doctor route and I would then put money on you being thrown on the scrapheap with a diagnosis of CFS within 12 months. Trust me, you don't want that.

How's your quality of sleep?

D

Thank you. I have told dh but he says he doesn't think i'm serious - and im probably not although i feel so desperate. But its only been 4 weeks. I can't cope with doing this for much longer.

Quality of sleep is appalling - 2 hours at a time with long periods of wakefulness. When i wake I'm buzzing with all the muscle vibrations and palpitations
If only the fatigue translated into sleep.

The doctor was hopeful of me getting better. Im back in a week or so.

Whelk you poor poor thing you are having such a bad time. I was in your shoes 6 years ago. I was very poorly and having all the symptoms you describe. I was bed ridden for quite a while. However now that is all in the past and YOU will get better and YOU will get back to being how you were.

I did not get much help from my GP although she was very sweet and well meaning - she came to visit me weekly at home but did not actually offer any help. I was offered amitriptyline that I tried not to take for several months but did take 10mg in the end (willing to try anything at that point!) It did help me sleep as being bed bound meant my sleep was pretty much wrecked. The Dr wanted me to increase the dose but I did find I was quite sensitive to any medication when I was ill so stayed at 10mg.

Do not beat yourself up - many people have had PVF, CFS or ME and all got better. Do not google and get pulled down by the negative views on the illness - if I can get better you will too. Huge hugs as I do remember how alone, desperate and ill I felt. It is horrid but life will be good again - take care.

Amitryptiline only kicks in as an AD at 75mg dosage anyway. As dinamumm says, it can help with sleep at lower doses and if you can sleep, you can begin to function. I am not saying being on meds is a good thing, far from it, I only know from experience with my DC that amitryp and gabapentin, which can help with nerve pain, have got DC back into school after 7 weeks in a truly terrible state with post-infective symptoms, two of which were spent in hospital. Dc went from perfectly fit and healthy, happy kid to hospitalised overnight with a campylobacter infection from which he has never recovered I am so convinced that a pathogen of some kind remains, despite DC now testing negative for everything. Still awaiting results of lyme antibodies test, and brain mri scheduled for next week but if all comes back negative, we are seeing a microbiologist privately to try to identify what remains in DC's system.

You know your own body, whelk, do you believe you still have an infection?

thank you Dinamumm - can i ask how long it took for you to get better?

I've pm'd you

Thanks Dinamumm- much appreciated. Any positive experience helps hugely.

Rewind a year and I could have written your post.

Bell's Palsy, followed by Labrythitis left me with PVF and a terrible case of IBS.

It took months and lots of testing to get a diagnosis and during this time I became increasingly anxious that there was something very wrong with me.

I had all of the symptoms you described. The muscle twitching and pain bothered me as much as the fatigue. I also experienced numbness all over by body.

After receiving a diagnosis, my health began to improve. I took up gentle exercise, did my best not to overdo it and allowed myself to think positively.

I'm now back to work and feel almost back to normal. I still have to be sensible (and rest) otherwise I have another flare up.

There are plenty of positive recovery stories out there. I never imagined I'd improve this much.

Be kind to yourself.

Just wanted to mention Postural Orthostatic Tachycardia Syndrome (PoTS). www.stars.org.uk/patient-info/conditions/pots it seems to share many common traits with PVF and for a lot of people starts after a virus.

I would highly recommend taking your pulse sitting down and standing up to see if there is a big jump in your heart rate (more than 20 bpm rise after 3-10 minutes is used to diagnose PoTS although there are other symptoms too - this is just a classic and reasonably easy to spot sign!). I was completely incapacitated with it when I initially fell ill, no one knew what was wrong and I had to diagnose myself via the internet.

I am now seeing specialists in London and on beta blockers and, while the tiredness is unbearable some days, I am capable of working and looking after my child which is a world away from where I was just over a year ago. It might not be relevant for most of you here - but if it hadn't been for someone suggesting it on a forum when I was very ill I wouldn't have checked it out and probably would still not have a diagnosis or treatment.

Doctors very rarely check heart rate sitting and standing and so this illness is very commonly not diagnosed for years. Sorry if this is not at all relevant to you but a lot of the symptoms seem to be the same. Wishing you all the best for a speedy recovery.

Thank you both. Hearing these positive stories really helps me more than almost anything.

Therapaxim - I am having an ECG tomorrow (dreading how on earth im going to manage going to the GPs) - perhaps I should ask them to test that while they do it.

i have completely abandoned any responsibility for the house and have just given in to resting which the doctor said. Its tough but at least what little energy i have I can spend just cuddling my dds and talking to them.

My dh is wonderful and my mum too. Sharing the responsibilty for looking after my dds is difficult as they have severe food allergies (epipens) and gps ahve previously made mistakes, But i have no choice but to let go and trust them,

Thanks again

Good luck with the ECG tomorrow! If it is PoTS and ECG won't pick anything up as you'll be lying down for it and chances are they won't be familiar with pots (and it just shows up as a fast normal heart beat) so you may not get anywhere asking them to test for it (I have had quite a few over the past year).

You can just feel the pulse on your wrist or neck - count how many in 15 seconds and x 4 to get your bpm. Do this when at rest (lying or sitting) and a couple of minutes after standing up.

As an example my resting heart rate is around 78, when I stand it goes up to around 120 and if I climb stairs 140+. It's good you have family around to help - although I can imagine it is difficult when they have allergies to not worry about them. House cleaning can most definitely wait!

Thanks. I've had a bad night and I just keep wondering why this has happened. It's driving me mad. Stupid and pointless to think like that but it plagues me in my low moments.

I'll try doing my pulse myself. Thanks.