ROBIN
3/31/2010 9:10:57 AM
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A couple of years ago I had some sort of PVFS which lasted perhaps 2 years before I sought non-NHS treatment. I had treatment from an ex-GP who used a mixture of kinesiology and homoeopathy to treat me. It was brilliant and worked.
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Jayne
3/29/2010 7:05:34 PM
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Wondering if this is what i have. About 2 years ago i must have contracted a virus - we were going on holiday to center parcs but it was all i could do to muster up the energy to prepare for the holiday - couldn;t do a thing whilst there! since then i have suffered with throat problems, chest infecitons, colds, and have recently had shingles. In the last 2 years i have had odd times when i have had energy, but most often i have none at all. I used to be very energetic and find it so depressing that these days i can't do anything without feeling constantly exhausted. I have a cold and cough at the moment and this has reduced me to spending my days on the sofa again - yesterday i tried helping my daughter paint her room but couldn't do it. Everything aches and even walking up the stairs today makes my legs ache!
I would give anything for my old life back!
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lesley
3/25/2010 9:06:42 AM
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does anyone else keep going down with viruses i get one after the other cant seem to get out of this vicious circle
please belinda let us know your outcome
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Jayne
3/21/2010 10:18:41 PM
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It is so good to find this site. I thought I was going insane. Doctor said I have PVFS after a weird respiratory virus. I had terrible breathing problems at first and asthma. Now after 4 months I have a tight band feeling across my chest all the time. Doctor said it is fatigue in the chest muscle walls - feels like I can't breathe properly and breathing is an effort. I've had it 4 months and it just won't go. I also have a deep wheeze/rumble in my chest when I breathe in, but no Doc's can hear it and say my chest is clear! Nothing seems to help - blood tests and chest x ray all normal. Doctor recommended Evening Primrose oil but not helping so far. Feeling very miserable as I'm thinking about it everytime I breathe!
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Halle
3/16/2010 6:52:28 PM
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@ Belinda, please please please post your full recovery story. I need to know there is light at the end of this dizzying tunnel!
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Tim S
3/15/2010 5:59:41 PM
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My sugar levels go up and down all day but I don't have hypoglycemia or diabetes. I 'crash' sometimes and can't do anything. Much of the rest of the time I have a general fatigue. If this describes your symtoms, you may have adrenal fatigue/adrenal exhaustion or even low DHEA hormone. / Check out my other comments in treatment (you can type in "control 'f'" on your keyboard to search a web page for any phrase such as 'tim s').
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Cass
3/15/2010 2:57:45 AM
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Join us in the forum. You can do so by clicking on the link above entitled "NEW Forum"....I think you'll find a lot of helpful information there.
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Pauline
3/13/2010 11:44:00 AM
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I could not believe what I was reading when I came across this site. It was like seeing all my syptoms are not in my head as some of the consultants I have seen keep telling me. I have had so many traumatic experiences with my health over twenty years or so and cannot get any help from the medical profession, other than pain magement, stress councelling, fybromayalgia courses. Not one of the medical avenues I have gone down has helped. I have tried accupucnture, chinese herbs medicine, spritual surgery, chiropractor healing, massage, cutting out certain foods all of whom want to take my money but when it does not work, are gone, it all costs so heavily. etc. etc. etc. I seem to have so many symptoms and now feel it has got to the point there is no return. I try so hard to ignore my symptoms but they are so bizare I dont know what to do any more. I only manage to work two days a week which I find is a terrible strain and nighon impossible for my health as I just go home and crash. I cannot get any financial help, my husband has been out of work because of the recession and we get no financial help, even though he has worked immensly hard all his life for over 40 years. I therefore can only assume that all my problems are stress related, so if there is anyone out there who can suggest how we rid our minds and body of the increasing amount of stress we face each day, I would much appreciate it, as there is absolutely no other answer.
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Caroline
3/11/2010 9:32:31 PM
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I found this site through googling "feeling like hungover and so glad to hear others understand. I have felt this way since a severe strep c throat infection.
It's so frustrating to feel unfocussed and trembly despite being fit and eating healthily/exercising regularly...usually we look after our body and it looks after us, right?
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ivan
3/9/2010 3:13:38 PM
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Really glad i came across this site thought all this was just in my mind these comments have helped me a lot never herd of this problem before also been to my dr not sure if she took me seriously cheers
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Cate
3/8/2010 12:40:30 PM
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I submitted an entry about a month ago and since then I have slowly improved. Wish progress was a little quicker though as I feel my life has gone up in smoke and wonder if I will ever cope again. My head is clearer and I feel as if I am beating the infection - at least my temperature is normal for more of the time. I am exhausted most of the time and my body feels as if it is quivering. Some days I feel a bit better and do more but pay for that with a day or more of exhaustion, but I am going to get there! I am keeping a diary again just so that I can see improvement. Very interested to read the submission from Alex about concerns from the medical profession that swine flu has longer term effects. A friend of mine went down with the initial illness as I did, suffering from severe headache, temperature and terrible tum, and she too suffered with it coming back for about 6 weeks. She is now feeling fine. I am hearing from lots of different people about friends with similar symptoms being ill with it weeks later - there is definitely a virus out there that is causing these problems. I have also been seeing a medical herbalist and the tincture she gave me immediately sorted out the stomach upset and nausea enabling me to eat. I had lost lots of weight, was grey in colour but now look more healthy - this is all good. She has also given me a lot of advice regarding diet and I am trying to eat really well. I am taking some comprehensive vitamin and mineral tablets, slow release vitamin C, pro biotics amongst other things. It takes a while to build your body back up. All the time my body is fighting the virus it is working really hard and depleting resources so I have to give it what it needs and rest.
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Helen
3/6/2010 5:29:00 PM
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Just thought I was getting over a severe chest infection - bronchitis & asthma ( not normally asthmatic) following course of antibiotics & inhalers.
Returned to work last week ( i am a nurse) as feeling pressured following 10 days off . . . managed one day at work & have felt awful since!!
Just as most of you guys describe . . . total exhaustion not relieved by sleep, dizziness, spaced out/disorientated feelings, nausea, headache, neckache, cold sore on lip & generally rough!! Spoke to GP yesterday who said sounded like 'post-viral syndrome' & advised to rest as much as possible.
Now pressure from work about when am I returning - I haven't a clue tho & said Im just taking day at a time . . . How do others cope with time off work & sick certificates etc. Do you take week at a time? It's so difficult as I haven't got a clue how I'll feel next week!! Any advice from anyone please??
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SJL
3/2/2010 3:50:03 AM
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I would go crazy if it weren't for all of the shared experiences posted on this site and others like them by fellow sufferers. After a 2 month long bad period with a throat/chest infection I developed so many of the symptoms that have been described. Because I know it helps others to hear similar experiences I'll list the ones I can remember. Initially I had:
aching all over my body and rib area, flu-like sensitivity on the skin, soreness from lying on skin in one position for too long, fever-like chills for almost 2 months that would worsen throughout the day, decreased immunity resulting in secondary infections, arthritic aching without swelling in hands, feet, hips, and knees, extreme fatigue after doing basic things like household chores (although I forced myself to continue light exercise for an hour each day most days, which I believe helped me to recover faster), tingling all over my body that changed from moment to moment and throughout the day (this is a symptom that continues still every day, and was the first to set in), buzzing feelings, twitching all over my body (which started after I received a flu shot while still ill with post-viral), creepy-crawley feelings under the skin (especially as tingling set in and in the face), wacky white blood cell counts that would go up and down, chest pain and even wheezing but without fluid in the chest, initially only I had visual 'after effects' where I'd see a repetition of a bright light for several seconds when I moved my eyes, nausea and a spaced out feeling with the worst days, white hot muscle cramping up and down my back, a tremor-like feeling all over my body that was like the butterflies in the stomach but all over, a stiff feeling in my face after talking and feeling like facial muscles were tense, and cold sweats. These symptoms were often such that they would peak at a certain point in the day, such as after work or exercise, and they developed and waned at different stages in the illness. The first awful 2 months were July and August. In September I decided to return to my normal running routine, increasing excercise to 7 miles of jogging/day (even when it was bad I was still able to jog about 3 miles most days very slowly). This actually precipitated great improvement in my symptoms, however I tend to have relapses after nights without enough sleep and exposure to infections, or new infections. I had just a cold a few weeks ago, and am still finding post-viral symptoms increasing again, though not nearly as bad as last time. The worst part about this illness is the sense of isolation, as doctors in the southern USA do not generally know about this illness, and it feels like you are the only one with these ridiculous symptoms that come and go minute by minute. I fight everyday not to let the anxiety take over, and not to become a hypochondriac, but it is difficult. I have decided that even though I have days and weeks of relapse, it is better to focus on the long range progressive improvements. I hope for all of us that the medical industry becomes more aware of this condition.
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lesley
2/26/2010 9:58:27 AM
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i have been suffering from vertigo for 6 years now which they believe is stress related then about 2 years ago after a major op i started going down with viral infections. i have now been told i have PVS and since september have had 4 viruses i cannot seem to stop pic king them up even though i hardly go anywhere to get them trouble is it is really worrying me now because it makes the vertigo dizziness worse but i have been told the more i worry the worse it will ge . i am interested in belindas comment and would like to know what she did to try to help the symptoms
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Paul
2/25/2010 4:42:15 AM
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Great website - very reassuring. I had swine flu in October and November last year which knocked the stuffing out of me. I felt I was over it in December and had a holiday in Bali before a wonderful Christmas with my family. Then in the first week of January I began to feel really bad: nausea in the morning, loss of appetite, dizziness, blurred vision, aches and pain, unstable legs and complete exhaustion. Two doctors have told me it's post-viral fatigue and there's not really any treatment other than rest and not too much exercise. But I've found that liquid multivitamin helps a bit. Hey Josh (5 Feb) I had similar thoughts, which are completely out of character with me. Hang in their bud - you'll get through it.
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Wallace
2/15/2010 1:37:17 PM
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I have a really interesting & rewarding career and have a very understanding boss but now that I have phoned it 5 times sick in as many weeks I am worried that people may think I am faking it. I have an exemplary sick record and work very hard but cannot get the energy to go to work & when i do get there I cant think straight.
I have the aches in the legs and the back and suddenly go from feeling well to very unwell with chills and pains and struggle to walk. I had the swine flu and never been the same since.
One thing I notice is most of the people had very active lifes before the onset of PVFS. I think we sometimes go into overdrive and dont realise that this can do more harm than good
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sureno
2/15/2010 4:36:20 AM
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hi i had like a constant headache for a cpl weeks not long ago it wasnt really a headache more like a constant swelling feelin at the back of my head my doctor told me i had a virus i had blood tests etc ,now the head ache is gone ive been constantly tired for the last 6 weeks have barley been able to train, kickboxing gym etc which i did all year last year i find it hard to do a days work i reckon i got this post viral fatigue ,my father was sick for 7 years with me chronic fatiguei hope it dont last that long this website has been good to read i am able to relate to alot of these speeches
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Shane T
2/11/2010 6:08:17 PM
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Hello fellow sufferers.. Here's my story.
About three months ago I got a nasty flu (perhaps H1N1) and I was completely out of it for about 5 days. After two weeks I was mostly back on my feet, when one day, I started getting a feeling like my throat was closing up. I went to see a doctor who thought I had a mild infection in my throat who put me on antibiotics for a week. A day after I stopped the antibiotics, I got a nasty pain in my left eye.
It's now mid-february, and the pain in my eye, and the tightness and pain in my throat has not let up. Doctors and specialists have so far found nothing of help, and here in Canada, it takes a long time to see specialists, delaying treatment. I thought I had some kind of reflux problem because of the throat tightnes, but so far, drugs to control reflux have been to no avail.
I'm lucky, I've gotten a tiny amount of energy back, enough that I can make it through the work day, make food for the next day, then collapse in a heap and sleep. I'm also trying to do about 15-20 minutes of cardio per day, although I might be overdoing it there.
I still have terrible days, though, where my body feels heavy, I feel fatigued. I get nonstop headaches. Also my eyes are getting redder and redder by the week. A month ago nobody noticed, now people comment on it all the time.
On good days I feel that there is hope, that some day I will be well again, on bad days, I feel complete and utter despair+anger. Everything I enjoy about life was taken away from me in an instant. I've found new things to enjoy since then, they sustain me and barely keep me going. I'm a musician, I live for music, but because of my eye pain, looking at a screen is extremely painful and causes even more redness, meaning I had to quit promising contracts and work. I cannot wear my glasses meaning I see the world in a blur. When my throat feels like it's closing up, and I get fatigued, I've learned to just hang on instead of panic. I read a comment here where somebody suggested keeping a journal to track your recovery, I think I'm going to start doing that.
So I can't say for sure what I have, I really don't know. Maybe post viral fatigue, maybe complications, who knows. The hardest part is not knowing, while feeling your body deteriorate, your life completely disrupted, and no idea how long or if ever you will get better. The physical symptoms are just the icing on the cake.
I wish you all the best of luck and a speedy recovery from your ailments.
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Charlotte
2/11/2010 12:50:56 AM
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I'm going to see the doctor tomorrow about my fatigue. I had a strange virus at the start of my term in October where I could feel it moving round my body whenever I took paracetamol, and since then I have been exhausted. Even though I did nothing during my Christmas holiday to try and recover, it hasn't worked. Now I'm really struggling to keep up with work and this week has been the worst: I just cannot force myself to concentrate anymore. My concentration levels are very low, my limbs feel heavy and I have a slight headache and backache all the time. It's even worse when I'm stressed because my eye starts twitching and I lose my appetite. I can very easily lose an hour or so by staring at a wall with absolutely no perception of time. I need at least 8 hours of sleep a day to function... I think I would sleep 10 hours if I didn't have to get up, and every morning I have trouble forcing myself off the mattress. My once very good memory is now riddled with holes. The doctor I saw at Christmas did a blood test and there was 'nothing wrong with me'! I hope this doctor will give me more help. Good luck to everybody else in their recovery. I think I have maybe mild PVFS, but I certainly know what it's like to feel so pathetically tired all the time.
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Adrian W
2/8/2010 6:30:08 PM
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Thank goodness for this website. I have been starting to grow more and more concerned about being ill for so many weeks now (6 altogether), with 4 of those weeks off work because of 'it'. I am still not 100% well, more like 80%. It is like getting better in 'slow motion'. The Doctor just told me I have Viral Fatigue and, like some of you folks, blood tests and chest X-ray came back 'all clear'. This site is so useful/ reassuring.
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Sarah
2/8/2010 10:29:55 AM
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I got the flu back in October '09. I'd never had the flu and knew it must have been that when I couldn't even get up in the morning. It came on so sudden and strong. I ended up missing a whole week off work and, despite feeling exhausted and still ill, I returned the following week. While off I was unable to go food shopping or even look after my cats so I had to beg a friend to do it for me.
On my return to the office everyone was great for the first week. Then my health has deteriorated again, I had a really bad cough for 4 months (two chest x-rays and 6 courses of antibiotics) and since then work colleague are getting less tolerent. I go to my bed every night no later than 7:30pm and sleep right through till I get up for work at 6am - feeling more tired than I did before I went to sleep. My Dad told me I was oversleeping so I went to bed at 9pm a couple of nights and that was far worse. Feeling so exhausted I then try and work all through the day with people telling me I should have more energy because I'm young (24 two weeks ago). I find it difficult to concentrate and my memory is getting so bad. It would all be okay if I knew exactly what was wrong with me but the doctors seem to be sending me for endless tests with no definate result then more tests. At the moment it is my thyroid they are testing. I've got to the point where I am so fed up I can't do anything except sleep and try and make it through work. My social life is on a downward spiral and my body is close to giving up. I've recently had these bad headaches that make it almost impossible to do anything and then I get sick. All the doctor has given me is paracetamol and I'm sick to my back teeth of it all. Is there a light at the end of the tunnel?...
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Cate
2/7/2010 12:44:23 PM
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I was diagnosed with Chronic Fatigue about 12 years ago. It started with a flu like illness that lasted a few weeks, that with hind sight was probably toxoplasmosis, but I just didn't recover - aches, severe tiredness, and a 'dull' brain, and I lived on the sofa. My doctor wasn't much help, just telling me I was depressed but eventually sent me to se an ME specialist. Such a relief to know what it was. So desperate was I to get back to normal that the minute I had a good day I would over do it and it would take 3 or 4 days to recover. This started to improve and gradually the recovery period reduced and I was slowly able to do more. A really helpful suggestion from the specialist was to keep a diary, rating how good you feel each day out of 10. It allowed me to see that things were improving which picked up my spirits and helped me recover. I also went part time at work, got married and had a baby. It was a couple more years before I remembered how to run though!
Frightened now that I have something similar as I have had an infection for 4 weeks which is coming and going and the blood tests were all clear. Aching and in bed at the moment but tomorrow I am back on duty as a busy mum with a business I run from home and a dog to walk. Help!
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josh
2/5/2010 11:01:24 AM
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i have been rearly ill for 2months now first the doctor said i had swine flu.in bed for weeks could not move can not think straight rearly bad headaches now they have gone i feil sickly all the time dizzy my legs feil like they are going to give way my family dont help i have thought about takin my own life i cant go on anymore
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Hywyn Foxhall
2/4/2010 3:01:57 PM
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Adam D: Same here! I had a nasty dose of Plasmodium Falciparum in Africa, and that was in July, 2009. I have had three blood tests since and they all came back clear, but I still feel like I did while I was suffering from malaria, minus the vomiting and fever. Losing some school work as well, but I suppose one of the best treatments is just carrying on, I suppose. This PVFS seems to have worsened the last few weeks, though. I have been relatively OK before then. Hope you all recover, guys and girls!
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Rahul
2/2/2010 4:39:10 PM
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Gosh guys, I had some kind of viral urinary infection two weeks ago. My fever is gone but I feel dizzy every now and then, even nauseous. The feeling is a bit like I want to emerge from this tunnel of having symptoms without being sick. Hope I surface soon, and thank you for this website. My girlfriend sometimes wonders whether I am just making this up or what's going on, but I know its real.
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Sallie-Ann
1/30/2010 10:02:35 AM
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Hi everyone. What a relief to see that I'm not on my own with this illness. I started with a bad chest infection which seemed to be worse down my left side in september last year. Since then I've had most of the symptoms you guys describe, the most scarey being the blured vision and sore eyes. I'm back at work now but can only manage four hours a day 3 days a week-money is tight which doesn't help the stress levels! Has anyone else suffered with bad acid indigestion? My doctor hasn't been very helpful and when I mentioned this and the sore eyes she said I had to be careful not to attribute everything to PVFS!!!
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Alex
1/27/2010 6:41:59 PM
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I Had swine flu July last year, and kept feeling really tired and ached all over since then i have 3 colds and another 2 episodes of flu which started 3 weeks ago and still feeling awful, as im the virus is putting strain on my heart and lung with high blood pressure and wheezy chest. I work in the medical profession and have heard rumours of Dr's concerns of an increase in patients with these symptoms all who have had swine flu and fatigue, the gen consenus is there is more to this virus than medics are letting on and feel that the after effects are very long term does any one else know people who have heard of anything similar
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Rob
1/25/2010 2:07:40 PM
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I too got diagnosed with this condition last year. After a lot of research I found the following made a massive difference for me. Cod liver oil capsules once a day everyday, high fat foods and completely cutting out sugar. I noticed a massive difference in 2 weeks. I can only think cutting out the sugar gave my body chance to rest and the high fat foods gave my body additional energy. I'd recommend the above 3 things to anyone with the condition!!!
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Ellie
1/21/2010 12:23:26 AM
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Post V Fatigue is probably worse than the initial illness. I thought I was dying during the swine flu and then once I started to be able to walk and eat, just one meal a day at first, for 2 weeks I noticed I always wanted to lie down. that was scary as i do running, gym, resistance training and I couldnt sit without slouching to the side and sneaking a nap if someone didnt speak to me for 2 minutes.
I recommend to try eating more I lost loads of weight without really noticing... my skin was saggy and I didnt even think about why that was, then I went out and noticed the strange up and down looks i got from work colleagues and family .... your body has been through something and through the process it has been robbed of something so you have to give back. Try some exercise as it increases the need to sleep and eat and that perpetuates the need to eat more which strengthens you and builds stamina and so on and increases ability to exercise more .
take multi vits, my doctor recommened it and I poo poo'd at first, it but then i noticed the difference in 48 hours and it stopped me from living on chocolate, orange juice, and chocolate. its not fun but you can build your way a solution to get out of it.
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Cindy
1/20/2010 1:24:19 PM
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I have been ill for 9 weeks now, started with a nasty viral infection which has now gone but I still feel rubbish. Dr says I have post viral debility! At times its just as bad as having the real flu! Thankfully I dont have the tiredness you guys have, that must be so hard for you all. Heres to being 100% well again.
Cindy
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Lisa b
1/20/2010 12:00:34 AM
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I have just been diagnosed with pvfs and I feel massively depressed. The constant feeling of nausea makes me not want to talk to people. I feel my husband thinks I am being a fraud. HAs anyone tried the whAt the heck response And gone back to a normal lifestyle of exercise etc? I Asked my dr whAt would happen if I just tried to ignore it and carry onregardless (nice thought if the fatigue doesn't catch you After 5 min). He sAid it might worsen And lengthen it but HAs anyone had a different response?
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Amanda
1/13/2010 8:18:01 PM
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I am so frustrated! Doing anything really exhausts me. I need help to get up in the morning, it seems like a lifetime to get dressed and often I can't even think about cooking.
Thanks for being here folks, it does help.
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Belinda
1/6/2010 8:49:39 PM
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Stay positive guys, I suffered from PVFS for a few years and have almost returned to full health. I have been well for about 10 years now. I do have the occassional 'relapse' after illness but they're getting less severe each time. I recovered using a combination of dietary changes along with incremental increase of physical exercise, physiotherapy and anti-depresents (which were for the pain as much as they were for the depression - which of course developed after having PVFS). If you want more information about how I went about my recovery let me know and I'll post more.
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Pete
1/2/2010 5:35:47 PM
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I was diagnosed with post viral fatigue about eleven years ago after a really bad sore throat that lasted for several weeks. I then started to get bad pains in my neck and in my calfs and also feeling spaced out and tired. I'm much better now but still get tired from time to time and i found it helped me to only work on a part time basis. I'm an avid cyclist and bike it to work which takes about half an hour, i was able to keep this going and getting off and walk if i felt rough.
I think this has helped me to recover as i've heard graded excercise can really help where you try and increase your energy levels and do a little more each day. Please be careful though and if your body tells you to stop don't over do it as you could make things worse. PVF is very much an individual illness and some people can't get out of bed never mind get on a bike so i've been lucky in this regard i think.
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prue
12/14/2009 9:50:07 PM
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I keep kidding myself that I havent got PVCFS, I dont want this illness, I have had lots of blood tests and have weekly iron injections as my GP says my symptons are due to anaemia, I have been off work for 6 months with pretty much all the symptons that everyone has mentioned, like feeling light headed and like Im drunk! I just dont feel right, I have no muscle strength any more and isnt it annoying when people say "well you look fine!", and then there are the times when you keep trying to socialize and start to feel really rough half way through the evening and start to fade, feel frail and want to curl up in a ball and sleep. Whats depressing is that I think its down to me to fight my way back to a normal life again, I keep thinking maybe this is a sign that I was not looking after myself before and life needs to change , so has anyone got any ideas!!!
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Pat M
12/4/2009 6:41:09 PM
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I had a biopsy for suspect neck growth this was clear since this I had a slight sore throat and general tiredness this is now th 16th week of trembling feeling sick spaced out memory and concentration loss general unwell reapid pulse you name it I feel it. great website good luck to us all.
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daniel
11/24/2009 1:37:57 PM
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i got a chest infection some 8weeks ago and for the last 3 weeks have been at work on a part time basis ive found it very hard and as im not doing much and am no help to my team mates i get tried and shaky my hart rate goes up and my joint's ache as im working whenever i bend down and the come up i get dizzy and just cant get rid of the spaced out feeling ive started to ask myself am i getting over it or learning to deal with it as i have had a good couple of days then wham it just comes back
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rena
11/23/2009 12:15:20 AM
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i had swine flu six weeks ago and have been in pain all over my body ever since. was at docs last week and he told me i have post viral fatigue. he advised me that it's important to take as much control of this as i can as he has seen it swallow up people's lives if you let it get a grip. i was to try to go back to my work tomorrow as i've already been off work for the six weeks, unfortunately i'll need to pay him another visit tomorrow because i feel even worse now. i went out shopping with my sister the other day to buy a gift for my daughter's birthday and have been in my bed ever since. i also have a seven year old daughter who i feel more sorry for as i feel like i don't have the energy nor the life in me to take her out places or even play with her. this makes me feel inadequate as a mother and a parent and really upsets me because she doesn't understand what's happened to her mum. spent most of the day today in my bed crying because i feel guilty.
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James
11/19/2009 3:58:36 PM
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it's reassuring to know we all experience the same symptoms. I have found using Korean Ginseng along with multivitamins, lots of gentle exercise and fruit/vegies has helped enormoulsy. Cutting back on caffeine and alcohol (unfortunately) also helps relieve the dizziness and fatigue. Having a supportive partner or friend and talking about it also helps get it out in the open and reduces tension & nerves. The body has an amazing ability to repair itself if you give it the best chance. Good luck and stay positive.
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Sheila
11/17/2009 3:04:01 PM
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Having read the comments on this page I feel fairly sure I have got pvfs.3 weeks ago I picked up a nasty virus which went straight to my chest and set up a secondary infection. I could hardly breath and thought I was going to die. After a course of anti biotics the chest infection has all but gonebutn I have a racing heart every time I try and do anything and feel utterly exhausted. I look very pale, appetite is poor and I do get quite thirsty, strange for me. The doctor seems surprised that I do not seem to be recovering as hoped. Now I feel a bit better having read the similar experiences on tis site. Thanks.
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liz
11/13/2009 8:55:49 PM
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yes,so frustrating.got ill last march,severe headaches & tingling allover,felt like i had a pilon inside me & no energy.you guessed it,blood tests all clear!!!.have improved but still have the headaches & painful limbs.and milder tingling sensations. tiredness still a problem.
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Pat_M
11/12/2009 8:54:31 PM
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fantastic web site, I thought I was going mad, been ill with most of symptoms for 3 months now, crule comes and goes.
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julie
11/12/2009 1:25:26 PM
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in response to axels comment re glandular fever,i was diagnosed with that in july this this year after months of feeling like i was going to die or going mad.i struggled on for months before finally seeking help.i was so relieved there was a reason for how unwell id been feeling.i cant remember much about the summer as was sleeping a lot and doing very little when not in bed.i have returned to work this week,just phased return doing very little while there but have felt dreadful.i have just got up and in desperation have been looking on the web for some help.i have found the comments on this sight so helpful as you do feel like the only one and it is hard to explain to friends and family etc how you feel.the comments re alcohol and feeling worse ring true with me,also the need for sugary food.i would be interested to hear if anyone has advise re diet or supplements.i wish you all well and thank you for giving me some hope.
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Claire
11/2/2009 8:54:41 AM
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I also had glandular fever and kept returning to the doctor saying i just dont feel right im tierd, ache, feel sick, increased need for sugar and energy, feeling dizzy and getting headaches and stressing out much quicker than usual and im generally just not myself. I recently saw a different GP and they told me I have Chronic Fatigue Syndrome but nothing as been done I have been given no advice or guidance and really cant afford to take any time off. im just wondering what I can do to help myself finally get over my illness.
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Axel
10/21/2009 12:57:21 PM
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Hi all. Became ill in summer of 2008 and was diagnosed with glandular fever. I have not been the same since. Whilst I now feel well enough to go to work I have totally withdrawn from social life as I feel very tired all the time. When run down my glands go crazy - mostly around the clavicle and the sides of my neck as well as under the jaw. Then there are the random shooting pains and aches, palid complexion, restless sleep and sweats. It's a vicious circle. Some days are better than others and I know I'm still the person I used to be but I feel a shadow of that. I don't drink anymore due to the knock on effects. I feel it's hard to justify to people who don't really understand. Has anyone else had a bad run with an illness sparked by glandular fever?
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Peter Lawton
10/19/2009 9:09:53 PM
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Wow this site is great and im glad i took the time to read. I had the 'Flu' around 4 months ago and the symptoms never went. I have the dizzy, spaced out feeling, aches and pains, headaches, my feeling seems affected although I can still feel things (hard to explain). Ive also become nervus and dont sleep very well. I find the memory problems the worst but now know its all part and parcel. I also get very tired and like others am worried about going out of the house as I feel im going to collapse at any moment. I also often feel like I cant brethe, even though I can but I think thats to do with the spaced out feeling. To start with my docotor kept telling me it was in my head, I went into hospital twice, had 2 chest x-rays which both came back fine! I also had around 8 blood tests which all came back noraml. My auntie has full blown M.E so I do feel that at least what I have is better than that. I do have better days where I am able to do things, have had a few good days but also have very bad weeks. I also have found that despite feeling bad, sometimes, pushing myself to get up and do small things like shopping or a day out somewhere can make me feel better. I will say that I have found I am unable to drive due to the spaced out feelings but can still ride my motorbike from time to time, the wind on the face helps to keep me alert and also really boosts the spirit, maybe the adrenaline helps too. Others may think im crazy but I'm 23, life is to be lived so when you can do as much as possible, even if you feel bad for days after. try to keep busy, dont lay in bed all day doing nothing, even if its only walking around the house, it better than nothing. In my limited experiance getting up and about and actually doing something makes me feel much better than just laying in bed all day. Hope i've helped. Pete.
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Caitlin
10/16/2009 9:26:47 AM
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What a relief! I crashed three months ago and was diagnosed with anaemia. Following two months of iron supplementation my condition didn't improve. The symptoms were perpetual including brain-fog, memory loss, confusion, constantly spacing out, disorientation, dizziness, vertigo, loss of coordination, weakness and debilitating fatigue. The feeling of being heavily intoxicated dominated my ability to function for two months. I too thought I was losing my mind. The doctor assured me that these symptoms were due to the anaemia and that persevering and maintaining a normal routine would see to a recovery. I can completely sympathise with everyone. The quality of life is insufferable. The most simple things became impossible to do alone, showering, buying milk, driving etc. I finally got another opinion and it turns out I have PVFS. A month since this diagnosis and I feel like I'm slowly but surely getting better. I can attribute this to rest, decreasing physical, intellectual and emotional stress and doing things I enjoy without the pressure to perform 'normally'. I understand that this is virtually impossible for most people. Luckily for me I'm young and have a family that are still willing to support me. Sadly, I had to quit my job and take leave from my degree in Architecture but in the end it's all so I can get back to my life wholeheartedly instead of being a residue of my former self. All I can suggest is to be nice to yourself and have as much downtime as possible. Take a slow walk on the beach, read a good book and essentially do all the things you want to do but never have time to do. You will feel better and more able for it!
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David T
10/10/2009 12:35:36 PM
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I am writing this on behalf of my wife. she is in hospital at the moment. she has had PVFS since august but has got a lot worse the last week. Drs think she had a throat infection as well. She has collapsed a few times and was admited to hospital yesterday. They are carrying out all sorts of tests but so far nothing is showing and they keep coming back to it being PVFS. she is currently in a lot of pain in her legs and loads of other symptoms including feeling the hot tingling in her body. Cant bare to see her so ill. she is an amazing person.
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Jenny
9/8/2009 5:57:01 PM
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I developed PVFS in May 2005 after a bout of flu and graually clawed my way back to something resembling a 'normal life' including returning to part time work in October 2008. Things were going really well I still tired easily when doing anything physical but life was definitely improving.
In the first week of July I developed Swine Flu and you guessed it - it has re-triggered my PVFS, although thankfully not as severe as last time.
Although I am still unable to cope with the most basic of housework and even getting showered and dressed completely wipes me out for a few hours. All the symptoms I had before plus some lovely new ones to contend with this time!
This time round I have had some new symptoms including pain and pins and needles in my right arm and hand and my family tell me I keep turning a really ashen/grey colour in my face, am getting cold sweats and night sweats. I am also diabetic and my blood sugars have gone way out of control.
It is so frustrating I have resigned myself to not overdoing things but I talked my husband into taking me to the shops for half an hour last week as I was despereate for a change of scenery - I used my mobility scooter but even that was just too much and I was wiped out for 3 days afterwards.
So not much chance of getting back to work yet - I have just seen the doctor who has signed me off work for another 2 months (I've alreday been off 2 months). My new employers are very understanding but ....
The doctor is referring me to a PVFS clinic this time.
I feel so sorry for my family as this is not much fun for them and I feel awful that I have to accept help from my 80+ year old mother-in law who looks in on me daily. I should be helping her!
Still I have to believe I beat this once so I can do it again, you just feel so much more vulnerable now.
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CLAIRE
9/8/2009 1:42:02 PM
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Ive been diagnosed with PVFS,in Mar i took a really bad throat infection, pain in throat went but fatigue,nausea, weakness,neck and shoulder pain,confusion started. Off work at moment was prescibed Fluoxetine, started taking it to help energise me, but didnt feel right on them, started getting tingling, muscle twitches all over n feel a warm sensation through my body at times, tremours n what seems like watery eyes.
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Stephen
9/8/2009 11:07:45 AM
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I have had a combination of several of the symptoms and yet some days feel pretty good and symptom free.
Have been off work for a month and in this economic climate worry about my job and the cynical reaction of my colleagues.I id return to work- but lasted days and kept falling asleep and had very poor concentration and recall.
The commute to work sealed my fate: as couldn't trust myself to stay alert.Blood test results awaited.
Pleased to have stumbled upon the site and feel that there are persons with shared symptoms.
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Alice
9/3/2009 12:58:09 AM
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I'm afraid my boyfriend has PVFS. He had a viral infection in his heart earlier this year, and now he has recovered from that, he is consistently tired and gets dizzy and depressed. He has good and bad days. I hate the bad days because i don't know how to help him.
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Serena
8/27/2009 9:43:43 PM
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The dizzines, detatched, unreal, spaced out feeling is my main symptom. Apart from feeling exhausted all the time but I get the feeling it is mild compared with some of your stories. I had flu like symptoms 5 weeks ago and feel like I have never properly recovered. I just feel like im hungover every day even though Ive had a really good nights sleep. I really don't want this to develop into fll PVFS, Do you think this is the beginning? I dont have nausea or pains in my neck or back but did have very achey limbs as part of the flu symptoms.
Do you have any advice on how to cure the symptoms?
Thanks and I really hope you all recover as quickly as possible.
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Collette
8/13/2009 1:01:30 PM
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I have just found this site when searching on Google, after a telephone consultation with my GP half an hour ago, to discuss my recent blood test coming back Normal!!! he is going to refer me to a clinic at my local hospital for Post Viral Fatigue?? I had never heard of this condition but after reading this site i believe i may have it. Also it is just exactly what my brother in law has been suffering with for years now and nobody has mentioned it to him. I have just called him and refered him to this site. I will let you all know what happens at the clinic. I have been feeling as if "i have nothing left in me" to do anything, eg. cleaning, gym, work, everything really. I could go back to bed now and its only lunch time. I have a feeling of "not being here" its weird and i feel people will think im going mad. I am glad there is something i can read to help me.
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Lee-Anne
8/12/2009 11:17:45 AM
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Thank you all so much for this website. I have just been told i have PVFS. I have been tired for a few months but got married in May and thought it was just the stress, build up to the big day, until the start of July when i started to have the pains, the long lie ins were i though i was just being lazy. I then took tonsillitis, then the flu symptoms, aches and pains,sweats, feeling spaced out. Was told on 2 occasions that i have had Swine Flu and that the symptoms would clear up. After yet another visit to the Docs i had blood tests which, yes you've guessed it, came back clear. The symptoms have stayed with me and at the moment i am feeling like all i talk about is being tired. Im sure my family are sick of hearing it. Im finding it really frustrating as im always on the go, at the gym, meeting friends, working long hours etc .. i find it really difficult to sit/lie and do nothing. The most frustrating thing is the feeling of not being in the same room as your body!! I cant even be bothered to watch tv or read, my consentration just isnt there. I had a good day yesterday and stayed awake for most of it, now my husband thinks im nearly 100%. I havent mentioned the fact that im aching and my neck feels like its holding a 100lb weight. I can not wait to resume normal activites!!! Hopefully that day is around the corner.
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Beatrice
8/1/2009 6:25:12 PM
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Isn't it reassuring to know that you're neither dying nor mad! I've had PVFS symptoms for 3 years: dizziness and spaced out, chest pains, joint pains and lower back pain; sweats without fever, memory lapses, a feeling that a creature was living inside me, then that awful glued to the mattress feeling that keeps you off work. I've given up so many activities. All I can do is go to work (when I can), then come home and go to bed. I've given up exercise and many social activities. It's no life. My GP understands,but it's websites like this that give me great hope.
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jo
7/30/2009 4:28:07 PM
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This is what i have! You guys are describing all the symptoms i have. I dont feel safe going out the house. Feel like im going to collaps at any moment. Or if something was to happen, i feel like im in no mind to deal with it. I cant think straight and lifes a blurr. Dont feel like im here anymore. Been 2months now. Racing heart beat, shaking, feeling sick and dizzy, depressed, teary, drunk and confused, blurred vision. When will it end? Enoughs enough now. It affects everything. Hope we all get through this soon. Its just awful. xxx
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Willow
7/29/2009 4:18:16 PM
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I think this might be it - have been laid out for 3 weeks following flu with all the above - will run past GP
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Claire
7/26/2009 11:42:08 AM
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Just been to the doctors for the 4th time basically begging him for an answer as to why I feel so bad he gave me the diagnosis of PVFS and also a form to fill out to see if Im depressed!Course I'm depressed this is sucking the life out of me! Mine started with flu like symptoms which wasn't bad enough to put me to bed for a week but it left me feeling wiped out all the time plus I've had a sore throat for a month which made me lose my voice for that long even now it comes and goes! I hate feeling like this as I've always been fit & active. Getting better slowly, I can last 5 hours max then have to lie down the worst of it is you feel such a fake when you tell people as outwardly you look fine but I still get the tremors e.t.c plus feels like I have no control over my body it's like feeling like a robot it's wierd ......can't wait to feel 100 % again thanks for this web site it's helped me to understand x
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James Hooper
7/9/2009 2:16:47 PM
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Hey, this is the first website, or anything for that matter that has actually hit the nail on the had in terms of symptoms. The one I have real trouble with is the 'spaced out' feeling, not very nice at all. Only thing to do is try and deal with it. I have had symptoms for 4 months now, I start medicine in 2 months time. Hopefully everything will work out ok, but have to wait and see.
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Simon
6/30/2009 8:59:26 AM
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I think I have PVFS, I've had the blood tests all clear, I've had chest x-rays again clear. I have all the same symtoms. I also get muscle twitches and am permanently tired. I felt I was getting better. I've now got a cold and feel lousy again
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Polly
6/19/2009 8:38:43 PM
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These are all the symptons ive experienced, ive had post viral fatigue for just over 2 years but its spoiling my life. I just want to know when it will go but i know noone can answer that.
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Polly
6/19/2009 8:30:13 PM
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Ive had post-viral fatigue for over 2 years now. When i read this its so familar its exactly what i suffer with. I get severe headaches the only thing which helps is to go on long walks to clear my head.
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olivia H
5/16/2009 10:27:47 PM
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Thank you for this site. Suffered myself for a few years but with short periods where I was almost ok. Whenever I get a chest infection it triggers a distressing relapse like right now. Symptoms exactly as described but with a racing pulse and feeling as if I will pass out when I stand up. Also really bad confusion, balance problems and tingling sensations. Def agree with Adam - how can the blood tests be clear its soooooooo frustrating. I've often felt like a crank or like I'm ashamed to talk about my 50 symptoms. I only tell people a few and then feel really ridiculous. Everyone seems to have their own unique symptoms on top of the common ones. Its unbelievable - how can all the blood tests come back normal when we feel so disabled. Meditation helps me take my mind off the agony :)
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Adam D
4/16/2009 10:00:46 AM
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Wow, I get the exact same symptoms. I haven't been officially diagnosed with PVFS but have been ill for 2 months now following a bout of malaria. It's very frustrating when all your results come back 'clear' but you still feel sick! Good luck to everyone that's suffering at the moment and I'm really looking forward to getting out the 'other side'.
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CARA
3/27/2009 5:52:19 PM
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I get all of the above but also headaches, twitching in the stomach, a resounding heart beat, sensitive to light / heat / noise etc.
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