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7/30/2010 12:12:42 PM
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Emma
Posts 18
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Hi all
this is my first post so hope I do I in the right place- just learning how to navigate around.
I'm just so relieved to have found this site. I'm going in to my eighth week of what I believe is PVF and learning to live with this horrid bewildering and tough illness. The doctor doesn't know what it is so is sending me to a neurologist but I reckon it is PVF as I has run down before I got I'll.
I had a ruptured ovarian cyst on 13th June which left me feeling extremely Ill. From then on I have been left weak, exhausted, no energy, faint, heavy legs and in bed 80% of everyday.
I saw an acupuncturist last week who believes my body hasn't been right for a year- I had two bad virus' last summer.
It is so hard to be confined to bed Everyday and having a v bad week. It's great to hear from you that I am not going crazy.
I'll keep in touch and thanks x m
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7/30/2010 1:13:53 PM
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chrissie
Posts 17
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Hi Emma, I am still going through test etc but like you think it might be PVS as one of the doctors I saw mentioned it so I looked it up and found this sight. It's nice to know we are not alone .
Take care - Chrissie xx
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7/30/2010 3:32:11 PM
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Emma
Posts 18
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Hey Chrissie
thanks for replying... It's really frustrating not having a diagnosis but I think my doctor is beginning to think it is this. If not then an ME but they still have to rule out anything further with neuro tests.
It's do bewildering as I find no two days the same. Symptoms fluctuate between exhaustion, low energy, fainty, hot flushes, spaced out head... It just feels never ending. The worst are my legs. I am walking like my 94 yr old grannie (we compared stories the other day!) i have such heavy legs and think it is a muscle fatigue. Am going to try the magnesium rub which was suggested.
How are you feeling today?
What do you do to past time?
I watch alot of box sets ... On brothers and sisters
also buying far too much on eBay and now really good friends with my postman!
Take care
xxxx
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7/31/2010 1:04:26 PM
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chrissie
Posts 17
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Hi Emma, You're symptoms are very much on a par with mine. I had bad evening last night - I felt like a junkie cos was really spaced out!!!! Woke up this morning and had energy for first time in about 3 weeks so thought to myself that I haven't got PVS after all - that feeling lasted for about 2 hours and now exhaustion is setting in and all I want to do is lay down and sleep!!! Still hoping doc will find something that can be treated and this is all a dream. I watch a lot of telly - mostly athletics at the moment - and I read when my concentration lets me. I have just started suffering with restless aching legs but the worst thing for me at the moment is a constant feeling that someone has their hands round my throat!!! Gonna stop whinging now so hopefully speak again soon.
Take care
Chrissie xxxx
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7/31/2010 1:23:31 PM
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Emma
Posts 18
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Hey chrissie
so how long have you been Ill for? I'm going into eight weeks and have had do many days where I think I haven't got it because I had a brighter morning. Then I dashed to the shops excited at feeling normal and it hits me like a brick.... It's like someone pulled the plug on my battery charger and fall in to bed.
I had a really bad night too and forced myself to my boyfriends parents sofa as I new he needed a break. I feel a bit brighter today which is lucky as I've had a week of hell.
Have you started a diary?
I've kept mine for a week and it helps to document your symptoms... I have also categorised my leg symptom.... This is my worst symptom...
Category one really bad: chains tied to ankles
cat two medium... Walking through mud
cat three easier... Festival legs... They're lighter but begin to ache like I've been standing too long at a concert.
This has helped me to monitor progress as I had three cat three days last wk....
Also I have started to write aims of the day.... Two/three targets.... Might be a short walk... A visit from a friend.... Wash my hair! At least I have something to tick off at night if I can do it.
Doyou mind me asking how yours started?
Hope you have a good day
Em x
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7/31/2010 1:27:15 PM
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Emma
Posts 18
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Also forgot to say that last night that is just what I felt like.... I was at lee's parents house but it was like I wasn't there and the noise was intense and I felt so spaced...like I had taken drugs...
Have you got people around to look after you?
Take care x
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7/31/2010 1:45:34 PM
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chrissie
Posts 17
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Hi Emma,
I started feeling 'weird' about a 6 weeks ago but my friends tell me they have been concerned for about 6 months!!! Whatever it is has crept up on me until finally I went to the doc 4 weeks ago. He had been treating me for a chest infection and asthma but I wasn't feeling any better after a course of strong antibiotics and using an asthma pump so I went back and he put me on a steroid pump.Tthere should have been an improvement in my breathing after a week but no luck so back I went to doc again!!!
He then looked at my record of symptoms in last few visits and told me it might be PVS. I had an asthma check on friday and the nurse asked me if I had ever been properly diagnosed with asthma and I said no - she was shocked and went to see my doc to ask him whether it might be a good idea to do a proper check cos it would help him in a diagnosis. he agreed and so I add another test to my itinery!! I have an ECG on tuesday, an asthma test on friday and am awaiting an appointment for a chest xray - I'm either really ill or a hypochondriac!!!
The thing that really made me think something was wrong was when I went to Chatsworth house and had to be driven round the gardens in a golf buggy cos I was exhausted after walking for about 5 minutes - there were old ladies and gentlemen passing me by with their walking sticks!!!!
How did thigs start with you?
Gonna sign off now before I bore you to death!!!
Chrissie xx
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7/31/2010 1:58:12 PM
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chrissie
Posts 17
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It's me again!!! keeping a diary sounds like a good idea - I have been writing down things as they happen but just on a jotting pad. I have a lovely husband who is very supportive so I am very lucky in that respect. Just wanted to let you know you are chatting to a Granny of 59 years old cos you sound quite young so thought I'd let you know this illness (if that is what we have) is not particular to a
certain age group.
Chrissie xx
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7/31/2010 1:58:12 PM
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chrissie
Posts 17
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It's me again!!! keeping a diary sounds like a good idea - I have been writing down things as they happen but just on a jotting pad. I have a lovely husband who is very supportive so I am very lucky in that respect. Just wanted to let you know you are chatting to a Granny of 59 years old cos you sound quite young so thought I'd let you know this illness (if that is what we have) is not particular to a
certain age group.
Chrissie xx
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8/1/2010 12:27:55 PM
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Emma
Posts 18
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Morning chrissie how are you feeling today?
I had a weird day yesterday feeling really heavy body, dizzy, and disorientated
not nice but having a brighter morning which is a relief.
Your poor throat though sounds dreadful- in a sense I'm lucky my illness of the cyst has left reocurring symptoms - you must be feeling dreadful with respitory problems.
My mum rang today and she went to a dinner party last night, ironically with a nurse who had PVS, she said the one thing you have to do is just rest, don't overdo it and if you're lying in bed thinking , I should get up, don't. When I begin to feel better you'll feel like you can get out if bed.
The thing to realise I think, is if I have got a fatigue illness then I need to rest in bed to get better. If I had a broken leg would someone make me walk on it. It's so hard but we'll get there )
I've got second acupuncture tomorrow. I'll let you know how it goes
hope u have a good day
Emma xx
Ps I'm 28
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8/2/2010 9:25:48 AM
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chrissie
Posts 17
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Hi Emma, I agree entirely about just resting when you need to and the broken leg statement is so true - my daughter broke her foot (and she is a dance teacher) and I kept telling her to rest!!!! I had a good day yesterday - we went to a summer lunch in our village and I managed to stay for 3 hours before I needed to come home (luckily home backs onto the playingfield where the lunch was held!!!) Found it frustrating though that I couldn't help with the clearing up etc which I normally do and just sat there being waited on!!!
Got up this morning feeling good so trying to do a few things in case it kicks in later
Still hoping doc finds something he can treat and it's not PVS cos want to get on with my life.
Acupuncture sounds interesting - hope it works for you
Chrissie xx
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8/7/2010 11:58:29 AM
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Emma
Posts 18
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Morning chrissie
How has your week been ?
Mines been up and down with yesterday the day from hell ..... I woke at eight and it took until eleven thirty to be able to open my eyes.... Crazy
my ma took me to my aunts in Sussex to rest there for a couple of days so it was great for a change of scenery but car journey was rather unpleasant .
I have acupuncture again on Monday... This week she said my pulses were more vibrant and energy flow improved slightly- I think I feel a little stronger this week and not so emotional thank goodness
Hope you're doing ok and try not to over do it
Emma xx
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8/7/2010 2:27:56 PM
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emuna
Posts 78
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Hi you two - hope you don't mind me butting in! Chrissie said 'I'm either really ill or a hypochondriac!!' - Gosh I've had this feeling so many times. I get a bit better and wonder if it's all in my head, then the illness hits me hard (exhaustion, sore throats, strange neurological problems etc) and I realise yes I am ill.
I used to see an osteopath who told me that when you first get this illness the thing to do is rest, rest, rest. My consultant told me that the people who recover are those who rest during the early stages. It's difficult but you have to stay positive too.
I hope you're both feeling a bit better today! Eat well and stay positive - you will get over it. It just takes time.
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8/7/2010 2:41:18 PM
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Emma
Posts 18
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hi Emuna
thanks so much for your message.... I think it has taken to my eighth week to begin to realise that I just can't do anything apart from rest rest rest..
Even tho I enjoyed getting away I think the car journey just took it out of me , it's incredible that sitting in a car can be so exhausting ( plus I wanted to hurl the whole way!)
do you mind me asking how long you've been Ill for?
I am also just starting to limit visitors... Even talking at the moment can completley zap my energy...
It's a rotten Illness but I know I'll get there
Thank you
take care
m 
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8/7/2010 2:46:45 PM
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Emma
Posts 18
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Emuna don't tire yourself re writing !
I just read your other post re treatments and so sorry to hear you're 5 yrs on... Are you working or are you completley signed off?
Have you heard of the lightning process? Meant to be quite effective treatment
thanks for your tip about energy med and am constantly buying on eBay at the moment so I'll make sure I get some
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8/7/2010 4:19:45 PM
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emuna
Posts 78
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Hi Emma. In 2006 I'd got to the point at work where I had the job I wanted, was working three days a week and was at the top of the payscale. After a year off work on the sick I was terminated on medical grounds. I was gutted at the time and used to go to the doctors and cry - not like me at all!
I was bedbound at first. I couldn't go anywhere without help. I used to see Dr Perrin (The Perrin Technique which is lymph drainage massage and cranial sacral therapy) and that got me up and about after about 14 weeks of treatment. I couldn't afford to keep going though and now my partner massages me.
I'm much better now - although I've got some way to go to be recovered.
I've talked to people who've done the Lightening Process and it seems to work for some people and not for others. The Gupta Programme is much cheaper and includes an exercise similar to the one done in Lightening Process. I'm still doing the Gupta cos even if I'm not totally better it has kept me more positive and my mood is better.
Yep, Moringa is good. You might want to have a look at the following link. If you decide to take Moringa don't take any other vitamin supplements. You might overdo it. Best Wishes!
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8/7/2010 9:28:49 PM
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Graham
Posts 192
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There's a thread about Moringa http://www.postviralfatigue.me.uk/forum/topic108-moringa.aspx
I use it, definately helpful,
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8/7/2010 10:29:04 PM
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Emma
Posts 18
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This is really useful guys thank you very much
I'll def give it a try
Anything is worth a try at the moment!
Take care
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8/9/2010 4:14:14 PM
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chrissie
Posts 17
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Hi everyone, Not been in mood to go online for few days so lovely surprise to see you all chatting away!!!! Thanks Emuna for you're comment on my feelings of hypochondria. Still expect to wake up and find all my symptoms have disappeared but no such luck!!!! Reading all you're comments makes me realise that I will have to deal with what may well be an uphill struggle but I WILL beat this. Tried to make an appointment with my doc but he's on his holidays (well deserved I'm sure) until 2nd September and I don't want to see anyone else as he knows my history and is the only doc to suggest it might be PVS.
Had a good morning on saturday so decided to go to town - after just 10 minutes I had to sit down and have a rest and my legs were like jelly - is that yet another symptom? My hubby took me to the seaside yesterday cos that normally cheers me up but after 30 minutes I wanted to come home cos I was so tired.
As suggested I am trying to rest as much as possible but picked the feather duster up and flicked it around the house when I felt 'ok' and then I had to rest for 2 hours to get over it!!!!!
What you said - Emma - about being too tired to talk is something I often feel. When the phone rings I really don't even want to talk to anyone and while on the phone my mind seems to wander and I'm not really listening to whoever is chatting. I feel so rude but often make an excuse to hang up quickly.
Signing off now so take care everyone - Chrissie xxxxx
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8/10/2010 6:12:21 PM
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Helen82
Posts 422
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Hi guys,
Just read through your chat. I havent been on here so much recently, not feeling as sociable, but wanted to say hi and welcome and chat about a few thinks you mentioned...
1. Oh my god I am so addicted to eBay at the moment Emma! And I have got into a really bad habit of "window shopping from home" (thats what i have named it!) I have been ill 9 months now and have only managed to go to town around once a month and even then I can only do a few shops max, no browsing, just neccessities... so I have got in the habit of ordering stuff from catalogues just to try... then I generally send it all back! How crazy am I?! Recently I ordered £100s worth of clothes from La Redoute and £60 of shoes, but I got it all tried it all on and reminded myself I can barely afford to live at the moment and have sent 90% of the stuff back! haha.
2. Emma, do you know that PVFS CFS and ME are pretty much the same thing? They all have the same symptoms, they are just distinguishable by the duration and what they are cause by. PVFS is from viruses and lasts around 6 months, then after 6 months they name it CFS or ME.
3. I have been like this 9 months and still no 2 days seem the same, it can be very disconcerting... you try to adapt to one set of symptoms only to find another popping up. This week my pain has been non-existant which is lush after a lot of pain for a month or so... but I feel like a zombie... which in some ways Im enjoying because I have been kind of wired for a coupkle of weeks, unable to sleep and now I finally feel tired!... but all the time lol.
4. I have watched a lot of films and boxsets over the last 9 months... I recommend lost, heroes, trueblood, gavin and stacey. Theres a website www.cucirca.com where I stream them all from. I also joined love films and get 2 dvds a month for 3.99 its fab. Theres a film review page, http://www.postviralfatigue.me.uk/forum/topic158-film-reviews.aspx
5. Keeping a diary is a very good idea... I tend to put DATE, ACTIVITIES, SYMPTOMS, CFS % http://www.postviralfatigue.me.uk/forum/topic186-cfs-ability-scale.aspx
6. I agree with the resting until you feel able to do stuff. It sometimes feels like it will last forever but it wont... and the more you rest the more you will be able to do. At the moment your body is using all its energy to heal, it doesnt have the energy to do much else, and if you push it it will give you more symptoms... your body will tell you when its ready to do a bit more. One thing I heard at the beginning is to always do 40% less than what you think you can do, then your body has spare energy to just focus on healing.
7. Things do get better. I still get very frustrated, especially because its been months... but Im definitely not as bad as I was initially. Listing to you guys chat makes me remember being confined to the bed or sofa and somedays only being able to crawl to the bathroom or kitchen. Now I can generally get up, showered, dressed, do 2 hours of something in the morn, rest, do 2 hrs of something in the avo, make my own meals then chill. I get very tired and achey and insomnia... but I dont get as dizzy, nauseas and brain fogged as before. Generally I am limited to mostly doing stuff on the pc or around the house... when I go out I get exhausted in under 2 hrs and find myself needing to rest for a day. But I guess at least I can do as much as I do now.
x
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