After drinking half of it I began to feel ill with a "spaced out" type feeling and
nausea. I ended up going home after about half an hour. Later that evening the nausea
passed but the general ill feeling remained. I ate some food from the local takeaway
and went to bed early.
At this point I remember concluding that perhaps I had become allergic either to
vodka or orange juice (if only!). I also considered that maybe the problem was the
additives and/or refined sugars found in cheap "from concentrate" orange juice which
pub landlords favour.
I reluctantly agreed to try another pub and I again switched to lager, the symptoms
passed and I was okay again for the rest of the night. We drunk to excess that night,
probably somewhere close to 30 units each.
That dizziness remained for the next 12 months of my life. I consider this day the
start point of my illness.
On the Monday I was dizzy, sick and shaky. I went to my doctor and was told everything
seemed normal apart from a slight temperature. My GP said not to worry, just a virus,
it will pass. I found this hard to believe.
For the last 3 years I have experienced a host of different symptoms related to
the illness, they are not all present at once and come and go. They vary in duration
and severity from day to day.
jules
3/28/2010 3:49:39 PM
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I thought I would Google PVF as this is what my doctor has been putting on my sick note for the lat 2 weeks.
I came back from a fabulous but exhausting holiday with friends about a month ago. Whilst on holiday I developed a sore throat and a weird fluttery feeling in my chest. Someone we met whilst we were there said her husband had just had swine flu before they came away.
Came back from holidiay, long haul flight, about 3 hours sleep in 2 days, did all the holiday washing etc on the day we arrived back and went to work the next day feeling absolutely terrible with flu like symptoms, bad throat and head, throbbing in the ears, temperature, coughing etc etc. I struggled in to work for 3 days and came home early on the 4th day which was a Friday.
Had a rotten weekend with flu and self certified myself the following week with flu. Towards the end of that week my flu symptoms lessened although I was still coughing like mad. It's been weird but since the flu left me the tiredness set in and I cant shift it. I have stopped coughing now and still have a little catarrah left. However I just feel so weak and achy all over. I have felt relly bad being off work for just being 'tired'. It's difficult to explain to anyone else just how I feel without sounding pathetic. Any activity leaves me shattered, I have walked the dog once or twice and gone into town for minor shopping and had to lie down to recharge my battereis when I got back. Last night we went to a party at a friends house, nothing major just chatting and talking whilst eating and drinking, standing all of the time. I was absolutely fine all night but this morning I felt like I had been run over by a train. I ache everywhere, arms, legs, fingers, toes, elbows etc. It has taken me about 4 hours to get the stamina to go in the shower and dry my hair. The hairdryer is sooooo heavy etc. Also I feel quivery from time to time and I know I need to ear something NOW. I get something to eat and then after about 10 minutes I feel better. It's like my battery is running down and I need to re-charge it.
My doctor did blood tests to rule out anaemia and thryoid problems, My blood was a little low on something but still within the realms of normal. No kidney, liver or thyroid problems. Great, that's what I want. But I have been thinking so what the heck is up with me then? Why aren't I recovering quicker from this flu like I normally do? A couple of years ago I had viral pneumonia which was totally horrible. Thats what I thought I had got again That's why I went to the doctor just to get checked out for that and also because I needed a sick note. Prior to that I had just been taking paracetamol and de-congestants.
The doctor said my chest was wheezing and was gonna send me for a chst xray if it continued but as this hasd cleared up now this is not necessary.
I am glad I found this website and it's uncanny to read all these stories describing the same sypmtoms as mine.
I didnt mention to my doctor or anyone else about feeling 'spaced out' or a 'bit vacant' as I thought they might think I was being a hyperchondriac. I feel happy to have found an explanation for how I am feeling but a bit scared that it might go on for a long time. I havent got the patience for this. I keep telling myself to pull myself together, knuckle down and get on with it. I always push myself to my limits and never give in to anything mentally or physically. I am 50, work full time, have two daughters of 16 & 21, run a house, work out 2 or 3 times a week no matter how tired I am. I pride myself on having the attitude to never give in to anything. Now, like the people in the other stories, I feel this is where ithis attitude has led me. I feel like I want to go work out right now just to get started on getting back to my old self area newsand not let this go any further. Need to re-think this now. Take care everyone
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Caroline Mansell
3/23/2010 12:21:34 PM
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Hi all, I have had this bout now since October 09 although I was never well since having Swine flu in August. I noticed a few have had flu first. One question I am interested in.... Did any of you take Tamiflu? please let me know caroline@ukart.com. Like another lady the sweats and a cooking head are the 2 most debilitating. Then I get really tired and yawn and feel 'fuzzy'. I have gone from GP to consultant and back. I have been put of steroids, but want to get off them as soon as possible (It also means I have put weight on, not lost it) I have joint and muscle aches which are worse after sudden exersise. Doing the same thing slowly means I don't have such sever pains. Anything I do is followed by a sudden flush and head burn. I will get over this but get fed up with the constant battle. Has anyone tried alternative therapies?
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lesa weatherley
3/21/2010 7:46:25 AM
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so glad i found this site, i too thought i had something terminal, after ross river, heavy head, dizzy, fatigue, tremors weakness and fear..i am still in it, but this site gives me hope, these symptoms are relentless...happy to hear from anyone with same x Lesa
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Sue
2/22/2010 7:24:14 PM
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Hi I had swine flu at the beginning of November which absolutely floored me for 5 days. Once I recovered I then went on to struggle with my chest. Having had Pneumonia 4 years ago I was given antibiotics early to head off a chest infection. I had a number of courses of antibiotics because they were suppressing the infection but not nipping it in the bud! I was feeling more and more unwell but pushed myself as we have our own retail business and obviously christmas is a busy time plus have two young children! We had a wonderful family christmas but went rapidly down hill on 30th December. Prescribed with a further double course of antibiotics. Dont know how I got home but I did, was completely spaced, running a temperature, shivers etc. Went straight to bed and here I am two months later still in bed! I have had various blood tests which all come back clear and have had confirmed that I did indeed have the influenza virus which started this all off. I have good days and bad days. At the moment averaging one or two good days a week. Seems to have a temperature on the bad days. Seem to pick up bug after bug after bug but I guess having two young children that is gonna happen. I have only driven a couple of times to and from hospital visits as most of the time I did not feel well enough to be in charge of a car. This has had a huge impact on the whole family. On a good day I went into work to prepare the VAT return as no one else is able to do it. I made 3 hours before I had to be driven home. On a good day I only seem to last 4 hours. I am a keen cyclist and very active but have really struggled with my legs. They have been very weak and can hardly hold me up. I am normally the life and sole of the party and now I am hobbling around like a little old lady. I have lost a stone and a half in two months, not all bad as that 'muffin tuck' that had developed over the last year has gone and back to the flat tummy person that I was before children! Don't want, and can't afford to lose anymore weight. I have cured the sickness. It would appear that all the medication has altered my vision and need new lenses in my glasses. By wearing my contact lens the sickness has stopped until I am well enough to get into the optician. Have been spending a lot of time on Facebook keeping in touch with the outside world and have a fantastic Farm and Cafe! Have learnt today from my doc that I even need to limit this type of activity in a bid to aid my recovery. A huge thank you to your website, you have helped my to understand and accept that I am not going to bounce out of this next week and I am going to be normal just like that! Will hold off booking the London Bikathon and maybe take the bottle of bubbly that I have on ice with my name on, out of the fridge for the time being! At least, you guys have confirmed that I am not going to die and that i WILL get through this and also..... I am not alone! Thank you x
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Linz
2/10/2010 10:22:57 AM
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My 14.5 year old daughter has been diagnosed with post viral fatigue following a virus last July (the rest of our family had swine flu - she didn't have the same symptoms but was basically flattened all summer). I completely sympathise with Sarah below - caught between a rock and a hard place trying to balance how my daughter feels with the demands of school. I feel utterly helpless and frustrated. Thank you for this site - gives me some reassurance knowing other people are experiencing the same thing.
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Maureen
1/11/2010 12:05:50 AM
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Hi everyone!
I was diagnosed with post viral fatigue syndrome after having shingles 2 years ago. I seem to be prone to the virus as I have had shingles, the chicken pox and ramsay hunt syndrome in the last 2 years. Could indicate possible immune problem but has never been discussed seriously with doctor.
Anyway the muscle pain, extreme stiffness, heavy body lethargy and total mental fog making it hard to thinks were predominant.
I also had stomach problems and now have IBS.
I had headaches for days on end. I had excessive sweating, mainly to the head. The breathlessness can be quite distressing, getting stuck on the stairs makes me feel like an old woman, I am only 45.
Some days I would lie in my bed after waking and not be able to move, my whole body felt numb. I was also a bit weepy at times, felt like I was losing control of my emotions.
Any form of activity would leave me feeling like I had been kicked repeatedly by a horse for about 4 days before the pain would ease of a bit.
Anyway my doctor put me on duloxitine to try and deal with the pain and because I was running to the toilet up to 27 times a day indicating bladder problems just to add to the fun! (pvfs can cause urinary urgency)
Started on 80mg daily which made no difference to the pain. The sweating is a nightmare, but I lost half a stone because I just didn't feel hungry
To try and combat the pain and fatigue he upped my dose and I have now been on 120mg daily for 12 weeks and finally I am getting a bit of relief, I only go to toilet about 15 times now! The headaches are gone and the fatigue has lifted a little bit. The downside is the pain hasn't been relieved at all. I have gained weight as the dosage has gone up, 14stone now, was 11 1/2 before.
The seritonin has improved my mood though.
Still sweating at the drop of a hat, very slow on my feet with little stamina.
I have lived with the pain for 2 years now with no real pain relief out of a bottle.
I have to stop on the hill I live on 3 times to stop my out of control breathing, it is close to hyperventilating, bit scary!
The last time I saw the doc, he said he didn't know what to do with me so doesn't bode well.
I suppose the main thing is to know your limitations and don't over do it on the god days.
I used to be a very active person, always doing for others, gardening & diy on top of working all the hours I could get. Now I struggle to get through the day physically and mentally.
Conpared to how I was 2 years ago, I have improved to the point of 70%.
But it doesn't take much to knock me off my feet either.
It might be worth gettinmg checked out for B12 Deficiency, as I had that in the beginning and had to get shots.
Then I was told I had pernicious anaemia, but I didn't have that at all.
After 6 months I moved to a new doctor because my old one hadn't given me a diagnosis and I was basically left not knowing what was going on with me.
My new doctor diagnosed me straight away and here I am! A lot better than I was but still struggling on a day to day basis. Would love to go back to work but is still a way off yet.
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Alli
1/7/2010 12:43:25 PM
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Hi all, I had shingles 3 yrs ago and again in July 09, i developed PVF after the most recent one and had to take 2 months off work, i am a single mum with 3 children and a mortgage to pay, luckily my employer was very understanding and i returned on a phased return, I had to take life very slowly and do as little as possible for a further month. My energy came back to normal and i have felt well for 3 months, I now have swine flu and am worried about PVF again as I know it can return after viruses and flu. This site is very informative and it's good to talk with people who understand. I wish you all well
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steve tommo
1/5/2010 6:14:23 PM
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HI,
got admitted to hospital 18 months ago feeling really ill and bloods came back with a high Creatine Kinase levels of 1500(after a hard day and nights partying),Also had been physically working hard 6 days a week for 2 years.
Got discharged day after and never felt the same since.
Been experiancing Headaches,tremors,twitching,negative thoughts,tiredness and panicky for the last 18 months.Always been fit and healthy before hand. Had MRI test and muscle biopsy all clear,only the bloods with the ck levels still raised between 400-800 (normal is 150-200) but doctors dont seem concerned! Has anyone else had this problem with m.e?
Seen over 6 different doctors including bupa and still no diagonosis.
Told to build up exercise so trained lightly then had game of 5 aside which put my symtons worse.
Able to work but have nothing left in the tank after 8 hrs on my feet and actualy feel worse at weekends and holidays when doing nothing.
Can anyone relate to my feelings as feel like i will always be like this.
kind regards
steve
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Sarah
12/13/2009 10:24:24 PM
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I beleive my 15 year old daughter is suffering from PVFS, she has all the symptoms and is just about to have blood tests to eliminate any other causes. I almost hope that something shows up so we can rectify it but in truth (and from researching) I think its more likely to be PVFS. If anyone can give both of us some hope that it will pass it would be much appreciated as we are both finding it incredibly upsetting and neither myself or her 19 year old brother know what to do to help. She has her GCSE's in the summer and I am worried sick that this may affect her chances. I am a single mum and doing my best but I just don't know what to do to help her....
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sharon
12/7/2009 11:06:59 AM
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hi feel better just reading this , at least i now no i am not alone. had swine flu 9 weeks ago and not been well since ,doc says now post viral illness . sleep all night and a lot of the day 2 ,muscle ache in legs and arms tingling in feet hands and lip , sore throat,bad head aches and dizzy some of the time,on days i dont feel 2 bad i try 2 get on with things only 2 end up back in bed day after .
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Helen Bridges
11/18/2009 12:22:27 AM
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Hello everyone, I'm a fellow recoverer and am remaining positive that I am on the road to recovery (even though I've had the odd detour or two). I am learning to face up to my illness/limitations and accept that I have to make some life changes.
Like many of you, I have always taken my health for granted, worked 110% and played hard at times too. Earlier this year I was polaxed by (swine) flu on holiday. My battery was already flat and I had no energy to fight the infection. I was diagnosed with post viral fatigue quite quickly by my GP - initially I was exceptionally tired with low energy and "brain fog" but after several tests (all normal) I have started to recover, albeit very slowly.
As I have started to do more activities the brain fog has started to fade but has been replaced with shaking, palpitations and muscle fatigue - especially cramping in legs and fingers after relatively low level exercise. This appears to be normal for many people with post viral fatigue - I am lucky that I have a friend who is a trained therapist and is willing to give me free massages - these help - if you don't have a friend who is a trained masseur it can be expensive but a lovely hot bubbly bath can also be soothing to the soul (and muscles).
I also have a yoga book - so far the most I have managed is looking at the pictures - but when I get so fatigued that I don't know what to do with myself I find lying flat on the floor and concentrating on breathing helps - hopefully you will either fall asleep (usually happens to me) or feel energised enough to do something. I have read quite a bit on this now and yoga seems to help a lot of people.
I have also started a staged return back to work - I am a senior manager in the NHS so my work is stressful but not physically demanding - I have tried working a couple of full days but am finding this difficult to cope with - as someone who used to work 10-12 hour days I am now struggling to concentrate for 5 hours but recognise my work/life-style is likely to have been a contributory factor - after 20 years my body is telling me enough is enough and I need to make some changes - I'm finding this difficult but I do have an understanding boss - always helpful - and I am sure we will find a way through.
I am treating my illness as a wake up call (forgive the pun) as there are far worse things I could be facing, I am trying to accept I need to be kinder to myself and not rush my recovery - two self-set target dates have already come and gone - I now realise this is going to be a very slow recovery and that I have stop comparing myself to how I used to be and instead focus on small achievements each day/week. I have had a few wobbles but luckily have a good network of support.
My advice to people newly diagnosed is to be kind to yourself, face up to your limits at the moment (I tried to dance last week to "I Feel Love" - it was disasterous - I lasted 40 seconds and promptly went grey, started shaking and had palpitations - my friends thought I was having a heart attack. I had a bit of downer after this but at least I had enough energy to try - two months ago I wouldn't have had enough energy to talk to anyone let alone attempt to dance). Keep as positive a mental focus as you can - in your brighter moments think of being well and use the time to rethink your life-style - I honestly believe this is a wake up call for me to lead a healthier life - find what is right for you and pace yourself - wishing you all truck loads of luck and patience on your journey to recovery. I'll be around for a while yet! H
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linda leeds
11/16/2009 10:34:24 PM
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I was thinking I wanted attention the feeling like you are a mobile phone needing charging still working but learning to pace myself have always been a runaround person and little tasks like cleaning takes it out of you and the spaced out feeling like I had been drugged no energy want to feel normal again
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I.Jones
11/11/2009 11:09:14 AM
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My wife & i are both signed off work with a viral infection this is our 5 week , as i am a Bus driver i can not chance driving a bus full of passengers with these lightheaded spells along with the sudden headaches, all the gp`s say is rest, walk, hydratate, take paracetamol, eat little & often, after reading some of these stories, it looks like i may end up losing my job ! . because of the company policy.
PLEASE HELP !
Thank you in advance
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John W
11/3/2009 9:37:34 AM
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Hi, Just found this site and, like everyone else, glad to find it's not just in my head. I came back from the Gulf in 2001 with a viral infection and have suffered on and off ever since, but particulary badly the last 3 years, averaging two bouts per year of 2-3 months each. I also had shingles about 5 yrs ago and I often describe the symptoms as shingles without the rash. The up side is that when I'm well, I'm really fine; but when it starts, nothing heads it off. I know the signs well enough now but even easing up immediately is too late. I get the aches, chest pain (even had an angiogram to eliminate a heart problem), confusion (ie my brain just doesn't work) but hardest description to get across to the medics is the tingling sensation in my hands, feet, mouth and around the edge of my tongue. It makes my muscles edgy - as if I'd downed 2litres of full fat Coke in one go. Sleeping well is difficult when it's at it's height, which is usually 2-3 weeks in. I've found that two paracetamol just before bedtime with a warm milky drink helps a lot. Once it's peaked, I can start gentle exercise and work back to full fitness over the next 4-6 weeks. It doesn't frighten me now like it used to because I know the cycle and how to manage it, although I still get frustrated and annoyed when it kicks off - mainly because I have no control over it and can't identify a trigger.
This is only my two penn'th, but I hope maybe it will help others get their head around what's going on and cope a little better.
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Amy
11/1/2009 9:07:06 PM
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I have just had what I can only assume was flu. I thought I was on the road to recovery but these past few days have been worse in a way than the flu itself. I feel dizzy, very spaced out, have no appetite food makes me feel sick and I'm very very tired. Also getting papitations. I cant even feel like Im safe to drive me car and cant imagine having to go back to university. I feel like passing out quite often but it never happens. sometimes even lying down is hard work. Does this sound familiar to anyone or am i being a hypercondriac?
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Melody
11/1/2009 6:17:47 PM
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I have had flu a month ago and this led to a chest infection and now I have been told I have post viral fatigue. Is this the same as ME as the doctor said it wasn't? I have been feeling tired generally since July 09 anyway.
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Becky
11/1/2009 8:32:56 AM
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I could be reading my own story over and over. Had swine flu, recovered but then six weeks later came down with a bad case of bronchitis that was pleuritic. Now suffering from constant pain in my side, panic attacks, fatigue and poor sleeping. Worried I'm going to lose my job..and my mind!!
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Alison Davies
10/23/2009 11:50:44 AM
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What a great informative website. I had swine flu about 7 weeks ago, it knocked me for six but I seemed to recover well. Then sometime after I started to feel dizzy and spaced out. I visited the doctor and he said what I had was viral and it would clear up. It hasnt. Some days (like today) all i want to do is stay in bed. The children (they are 8 and 10) have had to yet again walk to school by themselves because I couldn't kind of connect with reality again and needed to lie down. I am a single mum and it terrifies me to think I will be this way for a long time. Any sleep I have during the day does not make me feel better, I wake up groggy and spaced out. I have a doctors appointment on tuesday to tell him everything, as its becoming delapitating to my life now.
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barb buckwalter
10/19/2009 5:49:19 PM
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thanks all for the comments. It is good to see I am not alone...My PVFS was just diagnosed today by my GP after a second, long seige of bronchitis (chest infection). My symptoms parallel many of those you all describe. Although the time frame to recovery seems daunting, at least I can hold out hope and cease beating myself up for not having the stamina I wish I had. Take care!
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Kushal Sheshagiri
10/17/2009 2:28:41 PM
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I suffered from pvfs 3 months back and it is dreadful.u just cant do anything.u have to sleep all day.and to make matters worse,there is no cure.hope i get cured soon.i am going to write a very important exam hope god is on our side.please help me recover
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jackie
10/12/2009 10:46:46 AM
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I have been unwell since about April this year, thought it was just "doing too much" - working, looking after elderly parent and fitting everything else in. Suffering from fatigue, dizzy spaced out and sickness. July sent home from work with flu symptoms - cannot remember much for the next 3 weeks as in bed sleeping and not doing much else but sleep. GP did diagnose PVF and i have had various bloods and chest x-ray too. Have all aches and pains in legs if do any walking and it is like your battery life just goes and if you do too much one day you are ill the next few. Now October and although feeling much better that back in July still have breathing problems and cough, not able to drive too far as no concentration - still not back to work but hoping to in next few weeks but scared will not be able to cope. It has been enlightening reading all the other postings all experiencing the same thing - you can only do what you can as your body tell you to stop.
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liz Martin
10/7/2009 6:25:10 PM
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Been reading all these entries. I was diagnosed with CFS 11 years ago and it has been a long road. I am a lot better but still aware of what I do.
Just to say check out all the Thyroid tests..I ended up with a borderline thyroid and Thyroxine has really helped me but \I had to test privately. Also check out AdrenAL iNSUFFICIENCY. Many GPs don't believe in this but understanding it and taking suitable supplements really helped me
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Charlotte Wood
10/2/2009 3:40:01 PM
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I have just got over the swine flu aong with a throat and ear infection, got it all in once - went back to work after 4 weeks...sounded like a long time but I just dont seem to be able to cope. Since doing a 'normal' day my glands have swollen up again, I am tired to the point of not being able to get up and wake up very tired everyday. Both my auntie and mum suffer from CFS and it is thought to be hereditary. I desperately just want 'to get on with it' but am scared that by doing so my recovery time will lengthen...?
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Helena
9/21/2009 9:30:35 AM
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I had Swine Flu 4 weeks ago and failed to recover from it, left with aching tight muscles all over my body, even my big toes that have made walking around stiff and leave me breathless. Blood results are negative of any problems and im wailing for the results of a chest xray. Last night a friend rushed me to casualty as my muscles had tightened to such a degree walking was almost imposible and i found it hard to breath. I was reassured i wasnt dying! and that i had PVF. I am usually active and eat well so i am left frustrated and fed up that i must rest in order to recooperate.
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Rhonda Stewart
9/15/2009 10:47:09 PM
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I had flu like illness in April 2008 and since then have suffered bouts of fatigue, muscle aches, headaches and sleeping for 48 hrs straight at times, this together with generally being unwell. 7 weeks ago I had swine flu given anti-viral (Tamiflu) and initially recovered. However within a week the fatigue etc returned much worse than before. I struggled on at work for four weeks. But now on sick leave, feeling like my GP believes it's all in my head and now putting it down to perimenopause and starting me on HRT. I am a midwife so am confused that I feel so unwell and yet the blood tests all come back within normal range how can this be ????
I just want to feel well again, it seems like forever since I have felt well. I now find my confidence being effected by how I feel. After reading this at least I don't feel like it's in my head anymore
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Aaron Hurst
9/11/2009 4:07:24 PM
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Does anyone find that their symptoms come and go in severity during the day. I am always aware of the feeling, mainly aches and twitches and jerking muscles, but my head is the worst, when It's at it's worst I feel like I'm going to pass out and just can't focus or concentrate. It can then fade away for a few hours and then come back, changing in severity all the time. Has anyone else experienced anything similar
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Pam
9/7/2009 12:43:41 PM
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I have just been diagnosed with Post Viral fatigue.. I have never felt so weak and tired... I am sleeping really well ..as soon as my head touches the pillow but when i wake in the morning i am ready to return to bed probably after an hour. I ache all over and generally feel dreadful.. Up til this recent episode I felt good.. not suffered from any illnesses apart from a tummy bug after returning from Rhodes 3 weeks ago. this really is not good and hope that I will feel better soon ,, hate this feeling.
Going back for bloods in 3 days time,,,hopefully that will show something
Take care all of you xxx
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Linda
8/30/2009 10:02:33 PM
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Hi All
I'm not sure if I should be writing in this comment box because by luck I don't have PVF but unfortunately my sister does. I feel so helpless particularly because I am a nurse and my family look to me for all the answers to make her better. I have been searching for as much info. as I can for constructive advice to give her and to keep her motivated that she will eventually get better. Long term illness is so daunting for the person involved but also for the whole family. I think her husband needs to understand the true problems she faces and I would appreciate any advice as to how I can help them.
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Helen
8/14/2009 3:02:06 PM
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I just wanted to say thank you I recently had meningitus and have been left with Post viral fatigue. I always feel tired but I know that I will get better it is just time. What I find a lot of my friends don't understand this illness and think that if I take vitamins and do a bit more each day I will get better if only. I will but it is a long road to recovery, I empathise with anyone who gets this illness.
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nannasu
8/7/2009 11:30:28 AM
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I have just had (3 weeks ago) Swine Flu, then I had on the back of that anotherinfection, probably chest my GP thought. Last week for about 3 days I felt better, now I feel absolutelt dreadful again. I have a lot of the symptoms mentioned in 'onset' and have just given some blood for a test which I am sure just like the last two urine specs will come back inconclusive.I am not a patient person by nature, it's not one of my virtues, but, it seems that if one wants to recover fully from PVF rest is the only answer. I feel lioke I have rested enough but I guess i need to rest more-hopefully not for 3 years! I am trying to be positive and generate a good Positive Mental Attitude and accept that this is what I have. I 'll keep in touch and let you know how I get on. Hugs and best wishes to all. Nannasu x
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pam
8/4/2009 3:45:55 PM
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Thought i would share my experience to date.I haven't been ill nearly as long as some of you, but i have had all the symptoms mentioned by you all since June 15th 2009. Started feeling tired and fatigued for a few days, but after lying down for a few hours i was able to do things-e.g. go to work,go food shopping etc.
A week later i devloped flu symptoms, ending up with costochonditis-respiratory inflammation.I still am weak,having better days than some. Tried going back to work but felt well dizzy, was sick and could hardle move me legs -as Mike said i do not know how i managed to drive home.I feel like a rechargeable battery, with limited power every day.I'm still of work sick-get no sick pay as i'm self employed,so struggling financially as well.
Glad i found this web page-didn't know PVFS is also known as ME.
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Julie
7/31/2009 12:09:26 PM
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Hi, reading these comments has helped me accept this. I developed the PVFS after a bout of bronchitis last August - so nearly a year ago. I am in my 50s and was planning to leave my very stressful job and go to uni full time , a huge life change . The fatigue caused me to miss one term of my access course and I abandoned the whole idea. By Christmas I started to feel better so picked up my access course and dedicated the last 6 months getting my place at uni whilst working full time, hating my job. Although it meant losing precious income, i left my job early , 3 weeks ago, to try and get rid of this fatigue before starting uni. Sadly it has come on even worse than ever so I am very frustrated but this week have tried to accept it and and stop fighting against it. So pacing myself and accepting it is ok to just rest and do nothing is helping. I am also considerably overweight but have always been very active and energetic. For a long time I blamed my lack of energy on my weight and was really hard on myself until I started hearing of others experiences. Cheers
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Leigh
7/21/2009 5:34:15 AM
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It's approaching a year now since I first experienced the symptoms many of you are describing as a "dizzy spaced-out feeling". I had just started a new job and moved house the weekend prior. I 'came down' with flu like symptoms a few days later and the following week was suddenly struck with this "dizzy spaced-out feeling". I seeked medical attention, about two months after the initial attack, with the first GP diagnosing me with labrynthitis. Knowing that my previous experiences of labrynthitis weren't as severe, I decided to seek a second opinion. I was referred to an ENT specilaist, had my blood tested and a MRI scan. Other than lesions from a previous head trauma, the scan came back clear. It was diagnosed as an inner ear infection and I was prescribed valium, which helped take the edge off as you would expect valium would. I have also noticed that the symptoms are exacerbated by any intense physical exercise. And recently after being in a sauna for half an hour, felt completely drained and weak. I could hardly move for about 15 minutes and too thought I was having some sought of heart failure. It wasn't until earlier this year (about 6 months after the initial attack)that I noticed a slight alleviation from the symptoms. However, for the last 2-3 months, after having what seems to have been three differnt types of the flu, I have had a relapse of the symptoms. Probably triggered by the flu. I again have been referred to another specialist from a third doctor and I am having samples re-tested and might possibly be referred to a neurologist. Thank you all for sharing your experiences and shedding some light on this.
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Ansie Richter
7/14/2009 6:19:13 PM
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Woke up one morning about 3 months ago, feeling weak, feverish and having tremors through my body. Went to GP and was diagonosed with severe bronchitis. After treatment with antibiotics, the bronchitis cleared up, but the fatigue persisted. Kept going back to dr. Had blood tests done and even ECG. Nothing wrong. GP and Specialist agreed on PVFS. No treatment. Felt so bad sometimes, I was sure I was surrering heart failure. Even after lying down for hours, I still feld totally drained. The past four weeks I have been feeling better, but cannot do much without feeling tired. Have to lie down during the day. Cannot assume normal activities. Envy the sufferer who can go for long walks. Absolute not doable.Much better than the first 8 weeks. Hopefully I will recover completely in less than a year. Good luck all.
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Ansie
7/14/2009 6:01:55 PM
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Thanks so much for this page. I was convincing myself it was all in the head, since all blood tests and even ECG showed nothing. Started feeling extremely fatigued after being diagnosed with a bad case of bronchitis. The bronchitis cleared, but not the fatigue. It's been three months now. I am better, but cannot do much without having to lie down again. Longest I can remain upright without doing too much is about 5 hours at a time. Dr recommended Slowmag, magnesium and vit c supplement. Perhaps its helping. Its very frustrating because I cannot even think of resuming my normal activities and daily walks. Must stress, much better after the first four weeks. I sometimes felt I had to wake my husband to rush me to hospital, as I was convinced I was suffering heart failure. Absolutely drained, even after lying down for hours. The past four weeks I have been getting better gradually. So, it would appear that having patience and rest, healthy eating are about all we can do. Good luck all.
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Michelle Rawson
7/5/2009 5:13:19 PM
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Hi everyone! I have just read all your comments and can really relate to them, most of all Mike's symptoms. I am upset whilst typing this since I feel so weak and tired but am desperate to talk to someone who knows what it's like. I have been suffering for 7 months now. I have what I think are muscle spasms in my head as well as PVFS so feel like I am about to give up. If anyone can spare the time I would love to talk with you. Thanks!
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Simon
6/30/2009 9:11:53 AM
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I spen 4 days on and off in bed a Easter with flu like symtoms. Being a keen cyclist just thought it was a virus and I would get over it, Felt better a week later and started on my normal training schedule, managed a 20 mile ride to and from and work and then planned to go out in the evening and do another 40 miles. 5 miles out had to turn back, that was 2 and a hlaf months ago and I haven't touched the bike since. I had all the same tests as all of you with the same results. I am due to see a Neurologist on the 28th July. I'll let you knoe how I get on. Thanks
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fiona
6/15/2009 3:59:46 PM
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Hiya i have now been ill for just over 6 months. it started by me out drinking a slot and so stressed with university i began to feel so tire and run down. one night i went totally dizzy got into sa complete panic an ended up at casualty they said nothing was wrong. then went to my GP he advised viral infection it staarted to go away but then it got wporse sore throat sore arms tired and anxious though i was dieing. then got mri scan othing came back on that or blood tests. then stare to go back to work and uni got worse again so toired all my bones aching and really bad bloating headaches and nausea. starting to feel better now out and about again but still noyl about 50-60 percent back. do you think this seems like the same thing. i have had diagnosis of sinus problems to and had b12 deficinecy.
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Tom
5/17/2009 12:16:23 PM
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hi there.thanks for sharing your stories. it's quite scary and frustrating to not know if you'll be feeling up for anything the next day! i, too, have had a bad viral infection which somewhat resembled eppstein barr but without the mononucleosis part (my EBV tests were and are still elevated, also mycoplasma). anyway, my story was similar... felt quite hot and bothered most of the time but didn't think anything of it and kept on doing my usual routine of gym and lots of work just to find out it wouldn't pass this time. it was a weired dizzy feeling with some weird sensation in my throat that was the starting point and then it got quickly worse to a proper flu like illness. i can't say i have recovered... i feel up and down, have had good days to an extent that i could actually go to the gym and work out... i recommend not to do this or to at least only do minor workouts involving nothing that would make you crawl out of that place like you usually do after working out (i hope i am not the only one enjoying this kind of exercise regimen). i found drinking made it worse and of course friends that don't understand... whatever happens stick to the ones that do understand and reserve meeting with the ones that don't, for when you're feeling up to it. i am now about 9 months into this misery but don't feel too bad (just weird headachy type feeling, throat symptoms and weird cramped muscle in my right calf). has anyone here found that they have trouble falling and staying asleep?? i think that's the main contributor to my state... has anything helped? like 5-HTP (before i start trying something that somebody would actually contraindicate) ... anyway the essence of my ramblings... i got better over time and believe me you will if you don't push yourself too hard... do what you enjoy! but do it at 50% so you can enjoy it the next day again... and sort your SLEEPING PATTERN!! any input from others would be much appreciated... hope you all improve :)
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Mike
5/13/2009 9:27:41 PM
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Hi Everyone, I too have PVFS. I have had it for 18 months now. Mine too crept up on me gradually, started from a cold that I couldnt shake for 3 weeks, i generally felt run down, thought nothing of it and thought it would pass.... Went out for my 24th birthday with friends, had a drink and suffered the spaced out felling and the dizziness was unreal. Continued to drink and the symptoms turned into just being drunk... Few weeks passed, still felt run down as if I only had a few hours sleep a night, like a hangover. Two weeks after the initial event, went to work and suffered a major dizzy spell and felt exhausted and didnt know if I was here or there. To be totally honest I thought I was having a heart attack, rushed home in a panic (everything was a blur on the drive home, still dont know how I made it) Straight to bed... and for most of a year, I had chest pain, muscle aches, always tired, nausea dizziness. Went for countless tests for viruses different abnormalities etc with all the results coming back negative, so medically I was healthy. But not the case, i always feel frustrated as i am restricted on everyday activities, mentally and physically, I have quit active hobbies as I cannot physically endure more than 10 minutues constant walking without the feeling im due to drop dead at anytime. Another thing I find annoying is the lack of support from others, I always get "oh you look fine" or a pet hate "oh you need to push yourself to work through it" Thats what got me ill in the first place the "overdoing it"... I found that Any form of movement, even to wash a window on my car caused bed rest for hours.. These symptoms continued for a year. For the last 6 months, I have returned to work and am able to complete small tasks at a slow pace. Over doing it causes minor relapses which seem to occour a few days later. I find that some foods also bring on the symptoms stronger. I personally tink I am running at 60-70 % but would say I am very very slowly recovering. I can blabber on and on my whole experience, but Its is nice to know Im not the only one suffering and the best Advice I can offer is positive attitude. Think, other people suffered with M.e and have recovered and you will too. But if anyone has any suggestions on diet changes or other tried and tested theories which help speed recovery, i and many others will be more than happy to hear from you. Best of luck to you all, I wish you all a speedy recovery. Take Care Mike
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Jim Briscoe
5/10/2009 12:33:03 PM
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For what its worth,I know exactly what you went through.Your description of the onset mirrors my own experience.The cronology of events are obviously vivid in your mind as you would expect from something so life changing.After 18 years I remember when and where that aweful unreal sensation began.
It took 9 years to get serious medical attention,but slowly I have got to a place where for most of the time life is fairly normal.
Funny that I thought I was alone ,and now I see it wasn,t just me.
Regards Jim
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PostViralFatigue
4/29/2009 2:35:43 PM
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Hi Gina, I can imagine how tough it is. Please feel free to email me direct if you like, I can try and offer you some advice - mail at postviralfatigue.me.uk
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gina
4/29/2009 11:39:15 AM
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my daughter is 11 she is finding things so frustrating,we as a family are learning to cope with the strange and forever changing symptoms,
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Adam D
4/16/2009 10:06:59 AM
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I guess the most worrisome part of the illness for me is that sometimes I begin to doubt my GP's diagnosis (who incidentally has been very good for 20+ years). Then my mind harbours thoughts of the worse-case scenario; maybe this headache is a tumor etc. It can be rather stressful at times but I'm sure it will eventually pass.
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CARA
3/27/2009 5:48:41 PM
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Hi, thank-you for a wonderful web site. I had a very bad viral infection and think I had more of this than the virus itself. Been ill almost 8 months. I think 1 month ago, my symtoms changed and now have ups and downs. I am young and will recover.. late 20's. Thanks so much....
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PostViralFatigue
3/6/2009 12:00:00 AM
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Hi Valerie, first of all just because you had flu doesn't mean you will automatically develop PVFS. Its hard to say really it just depends on your own immune system. All I can tell you is try and live as healthy as you can, plenty of rest, lots of fruit and veg organic if possible, no alcohol etc. If you're lucky (and I hope you are) its just a nasty virus which you'll get rid of with no lasting effects, but if not even if it does last 3 years like mine try and remember that it wont last forever and that each day will be a tiny tiny bit better. Feel free to email me if you would like to talk more (mail at postviralfatigue.me.uk) theres quite a bit more I can tell you which I've not had time to put on the site yet. Take Care. :)
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Valerie Chidgey
3/2/2009 4:28:31 PM
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I have recently had 'flu twice (before and after Christmas and I have the same symptoms as you mention above. Please tell me it wont last for 3 years. I am so tired, all I do is go to bed and sleep
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