Hi,
this is the first time I've joined in this type of forum, but I've found the comments posted here really helpful and hope I can offer support to a few fellow sufferers. I'm a 46 year old teacher. I'm normally fit and healthy, being a keen mountain biker. I fell ill with what I thought was a bad cold in late September. As usual, I had a few days off work then went back, thinking I'd recover completely by the end of the week. I spent the whole of the following weekend feeling ill and took the Monday off work, but went back on the Tuesday because I was due to be observed for my annual review. That was on 6th October, and I haven't worked since.
When I finally went to see my GP I was told I'd probably had swine flu and that I would most likely take another week to recover. By the following Tuesday I was starting to feel better, so I went to choir practice in the evening. Ouch! The next day I felt so dreadful I couldn't get out of bed, and I didn't recover for the rest of that week.
It's been the same story since then. My symptoms are similar to those experienced by others here; if I try to do anything in the least bit physically active - e.g. walking a few hundred metres or going to the supermarket- my arms and legs ache, I feel exhausted and I get a vague headache / dizzy / nauseous feeling.
My GP seems to be in denial about the whole thing, insisting it's nothing serious, but at the same time telling me to take it easy. Fortunately I have an open mind about the relative benefits of conventional vs complementary medicine and I'm happy to take responsibility for my own health. I've been visiting an excellent therapist who combines complex homoeopathy with reflexology, reiki and other therapies for a few years now. I'm going to see her on Tuesday and I'm sure she'll be a real help in kick starting my recovery. I'll let you all know how I get on.
Jom
Hi, a message for Gabriel. It's been suggested that I have post viral fatigue syndrome, although I haven't had a final diagnosis. I still have further blood tests and screening etc to be done, however I have all the symptoms of CFS/ME etc.
I have been reading up on the lightning process and I am considering doing it too. I would be really interested in hearing how it has worked for you.
Good luck, hope it works.
Thanks.
I recovered from post viral fatigue.....
Hi all,
I feel for all of you, hope you all get better.
I had post viral fatigue in 2004 after a long hard summers work were i pushed my body as far as i could possibly go for two months (during my phd).
Some time after I got a cold or some virus, but stupidly thinking that I am superman I blasted on through, carried on long distance running, drinking and playing in a rock band!
However, I didnt recover and remember complaining about a "floaty head" sickness and general fatigue. This went on for four months, although for the first three I just carried on like normal except not doing as much exercise.
I really started freaking out and got lots of tests (all negative). Stopped drinking (I did like beer and still do), carried on eating well enough (I have a monster appetite but when i was sick I was eating about twice as much as usual). But I think one or two things really helped me get well quick.
1. Strong multivitamnis - i took these [DLMURL] http://www.solgar.co.uk/product/formula-vm-75-60-vegicaps-E1166.html [/DLMURL]
2. Wierd chinese medicine - im sorry i cant remember the name, but almost sure it was this or something very similar http://www.chinalifeweb.com/shop/i/oral-tonics/be-tonic/lzrj-drc.html
After the course of the chinese tonic things i remember a week or so later just waking up and feeling 100% one day, pretty lucky I guess.
However, now i feel sick again in a similar way 5 years on. Its my own stupid fault. Running and binge drinking after a virus, but before that stressing at work, instead of resting when i'm tired going out running, too much coffee, not enough sleep, very bad diet at times, drinking alot etc....
Can i ask, how many of you could put your illness down to these things? What about overexercising after illness?
16 months into this ordeal
hi there everyone
i have experienced the same that most of you have unfortunately. am better than i was in august 2008 but nowhere near fit enough to live my previous life.
i can't stress enough that i think what really got me into this situation in the first place was my inability to stop when one needs to.
it was during my second year exams when i delayed sleeping till about 3am every morning keeping myself up with 4 or so redbulls for a month or so. after exams i came down with a lame viral infection that only slightly impacted the pressure in my ears. fine now but at the time soon developed in something sinusitis/EBV like.
hope you'll all recover and i genuinely think as long as you push yourself to at least the house once a day to work/study a bit you'll get over this... a matter of time of course but surely we'll all get there.
i am studying virology and microbiology and that thing certainly doesn't behave like the usual acute infection. resembles retroviral like behaviour with bouts of both better and worse days coinciding with apparent active replication of the virus but no clearance (but as with most things we cannot predict any virus accurately and how individuals react). let's hope one day there'll be someone finding the causative agent as i am sure there's something living within us.
Just been reading the various threads and issues and experiences and thought it would be worthwhile posting my experience.
Firstly, it is reassuring to know that I was not imagining my symptoms and secondly I have found something that has helped with my symptoms that does not cost anything but requires discipline.
I had flu in Nov 2009 I mean flu where i thought I was going to dye. Never been that ill ever. Went back to work after 8 days ( big mistake) came home after 2 days and have not been able to work since. got kidney infection, felt better but suffered from throbbing in legs mostly in the evenings and at night; had restless nights, some nights were worse than others. If I sat down or was standing too much, I had pain on one side of my back. I had general malaise, Lethargy and arms felt like I had been lifting weights especially in the morning. Some days I could not carry my handbag. Doctor said it will take time as I have had flu. had blood tests done, everything was fine and doc said I have to drink water and be patient.
After 8 weeks of it, I thought mind over matter, and I had enought of it so decided to ignore everything and went for a 1-2 mile walk; night was awful but decided to ignore that and next day walked another 2 miles. That night, I nearly called an ambulance as I had the most awful pains, cramps etc etc and could not understand it.
Then got a cold, a friend advised me that I should see a different doctor.
This time, she said, I am suffering from dehydration from flu (even after 8 weeks!), PVF and Post viral athropothy. Recommended echinaccea and vit c for building up immunity and to drink fluids and I should not over exert myself but set a goal each day, 5 min, 10 mins etc and if I had a bad day, next day I should rest but build up gradually.
I had also noticed that days where I did not have time to drink enough water, that night my symptoms were worse.
Well you will probably not believe this, drinking 3 l of water a day has made a massive differences to aches and pains, thorbbing of legs, arthritic pains on my hands, sleep is better too. Although still have bad days in terms waking up feeling general malaise, lethargy ( which is improved by using a day light lamp or a sad lamp) and sometimes aching arms.
I now know why drinking fluids during and post colds and flu is so important and wondered if that is what caused it in the first place.. I know I did not drink enough.
I am still taking it easy, and hope to build upto to 1 mile walk and learnt to listen to my body and feel good that it is not " in the mind" and these symptoms are real.
Anyway, thought it was worthwhile sharing.
Vina
Just been reading the various threads and issues and experiences and thought it would be worthwhile posting my experience.
Firstly, it is reassuring to know that I was not imagining my symptoms and secondly I have found something that has helped with my symptoms that does not cost anything but requires discipline.
I had flu in Nov 2009 I mean flu where i thought I was going to dye. Never been that ill ever. Went back to work after 8 days ( big mistake) came home after 2 days and have not been able to work since. got kidney infection, felt better but suffered from throbbing in legs mostly in the evenings and at night; had restless nights, some nights were worse than others. If I sat down or was standing too much, I had pain on one side of my back. I had general malaise, Lethargy and arms felt like I had been lifting weights especially in the morning. Some days I could not carry my handbag. Doctor said it will take time as I have had flu. had blood tests done, everything was fine and doc said I have to drink water and be patient.
After 8 weeks of it, I thought mind over matter, and I had enought of it so decided to ignore everything and went for a 1-2 mile walk; night was awful but decided to ignore that and next day walked another 2 miles. That night, I nearly called an ambulance as I had the most awful pains, cramps etc etc and could not understand it.
Then got a cold, a friend advised me that I should see a different doctor.
This time, she said, I am suffering from dehydration from flu (even after 8 weeks!), PVF and Post viral athropothy. Recommended echinaccea and vit c for building up immunity and to drink fluids and I should not over exert myself but set a goal each day, 5 min, 10 mins etc and if I had a bad day, next day I should rest but build up gradually.
I had also noticed that days where I did not have time to drink enough water, that night my symptoms were worse.
Well you will probably not believe this, drinking 3 l of water a day has made a massive differences to aches and pains, thorbbing of legs, arthritic pains on my hands, sleep is better too. Although still have bad days in terms waking up feeling general malaise, lethargy ( which is improved by using a day light lamp or a sad lamp) and sometimes aching arms.
I now know why drinking fluids during and post colds and flu is so important and wondered if that is what caused it in the first place.. I know I did not drink enough.
I am still taking it easy, and hope to build upto to 1 mile walk and learnt to listen to my body and feel good that it is not " in the mind" and these symptoms are real.
Anyway, thought it was worthwhile sharing. I hope it helps.
Vina
Hello all sufferers!
I am 23 years old, and have been diagnosed with pvf. As most of us proberbly have looking at these post's. i have been searching through hundreds of websites and boards to try and find some light on my illness. Problem is, its all negative.
I am normally a very active guy, play alot of sports, and love clubbing ect.
Seems to be a common factor with young blokes getting this illness, they can mostly all be accused of 'Over doing it'. I.e. spend all night drinking, and spend all day at work (and in my case the rest of my time looking after a completly selfish and extremely high maintenced girlfriend, and I am allowed to be bitter as she dumped me after i was diagnosed because she couldnt look after me). I was guilty of only ever resting when i physically couldnt keep my eyes open. So im having to learn to relax a little, a time to reflect maybe.
I have been ill for nearly 5 months now, but I am getting better, slowly. I started back at work last week (builder) which is a physically demanding job. I was surprised at how well I have been able to cope with it. On returning home from work normally at about 3 PM i sleep or rest in bed untill the next day. Maybe its just a case of getting out of the rut, and just doing things, without over exerting yourself.
One thing I think that has really helped me has been ACCEPTING that im up **** creak without a paddle. So ive stoped going crazy when i feel slightly normal again. trying to get a consistant routine and trying to allmost forget the waves of emotion and physicall well being- good or bad-. Ive realised that if I want to get better, im going to have to put myself on the bench for this year, maybe longer, because if you think that pushing your body to the limits is going to fix you, your a long way from getting better.
So everyone's case of post viral , me , whatever, is different. This is my story, but if it rings any bells with you, then here are some things that make me feel better.
Staying in different enviroments- friends family- just to break up the rut.
Laughter- If you dont know anyone thats funny, watch comedians, laughter really is helpfull!
Be Positive - Christ its hard to even write it but if theres nothing you can do about it dont try and fight it with frustration.
Metatone tonic- vitimin suplement.
I will be back to tell you in a few months that I am alot better than today.
If I dont come back its because I have completly recovered and have forgotten that I ever had this illness.
Hi Ruislipdon
I know what you have been going through - having been there myself. Glad to hear you are on the road to recovery - as yes, you need to learn to listen to your body and not push it so far and hard. You need to learn to relax, laughter is brilliant, keeping up with friends is important, reducing stress is vital - and to realise that being frustrated or angry wastes precious energy. A good wholefood diet can help to recovery and dealing with past traumas (EFT is brilliant for that) all help one on thr road to recovery. The best advice is from Dr Sarah Myhill who specialises in ME - see her website here.
Wishing you a smooth road to recovery - listen to your body and don't overdo it!
All the best
In my last year of university when i was working all hours i got these energy lows. But i carried on and after uni i took a play to Edinburgh, it was terribly stressfull and i struggled through by eating everything to keep my energy up. After this i got better. Then i got a job, a horribly stressfull job where i had to walk 30 mins to and from in all weathers. I worked there 6 months then in my summer holiday went and worked abroad for a few weeks and then went straight back to work. This is when things got bad. It started with feeling tired all the time then getting dizzy spells where i felt floaty and wierd. Then i get spells where i got shaky and felt faint. In a reccesion i thought i couldnt quit so i started taking vitimin B and B12 and kept going. It got so bad that i was shattered after my walk in and had to go home twice because i couldnt recover. Then one day i pretty much collapsed and had to be driven home. After that i was signed off for two months with post viral fatigue as all my blood results where negitive. My doctor said rest and i would be better after 3 months. I was so bad round early December i couldnt get up to hang baubles on the tree, going to the post box down the road was practically an impossibility. Then after christmas i had a week of feeling fine. I started execrcising again for 45 min or an hour a day, untill i went backwards again. I quit my job thinking the stress of going back wasnt helping. I now the end of March and i can walk 2 and half miles every now and then (to the trainstation and back) I could probably do this more if i tried. I feel ok most days but occasionaly i get shakey and dizzy, i cant concentrate and i dont feel quite all there. If i excercise i feel sore and tired the next day and i lose energy very quickly. I havnt been on a night out as im scared il get shakey and faint. Maybe its in my head maybe i should just go do more things? I havnt been back to the doctor in 2 months as i thought i was getting better and i really dont want to be diagonosed with CFS as it doesnt go down well with employers. However im 23 years old, unemployed and have no social life after 7 months with this. What should i do?
Hi there - welcome to HP. Please read my previous post, click on Dr Myhill's website and read all about the problems you are suffering from and how to manage the symptoms. This illness may be labelled CFS or ME or PVFS or CFIDS - but basically it has similar symptoms.
The most important thing is to learn to listen to your body and always keep within your energy boundaries. In the long run you pay for doing too much, delaying your recovery. There are also dedicated websites where you can find more information.
Wishing you all the best for a speedy recovery.
Help with CFS
help with CFS
Please get yourself a copy of the book 'From Fatigued To Fantastic' by DR J Teitelbaum (Amazon) the book describes how many people after having a virus, have in fact damaged their hormone system ie hypothalamus and adrenal glands. he shows that regular use of the easily obtainable hormone DHEA and maybe even cortisol, can work wonders in a short time - and I can vouch for that. Also Andy Cutlers book - Amalgam Illness - also on the net, lays much of the blame for many ills on mercury poisoning. He gives solid scientific advice how to deal with this problem.
Best regards Robert Davies.
It seems that almost every case of this includes people who worked themselves to death before they contracted it. Ironically, these are the people that would be effected the most by PVFS because it takes away the ability to be active.
I, too, was a very active person before I got it. My doctor tells me I "might" have PVFS - I don't see what else it could be. All tests are normal, and apparently I'm doing just fine. About 2 months ago I got sick very quickly, and was very ill for a couple days. I gave it a week or so and went back at working out. I worked out twice and instantly symptoms began popping up.
Since then I have done nothing but rest, and I have seen no improvement. This has got to be one of the most frustrating illnesses out there.
The only thing nobody else has mentioned is a sore throat. This whole time my symptoms have been 1) The achy legs and tiredness that have been described so well by everyone else and 2) A sore throat that is mild, but annoying. Has anyone else had this?
I wish more people would post stories of recovery, but I suppose once they have they just get on with their lives. I miss being active so much. In retrospect I overdid it right before the illness - I was working out 2-3h per day, 6 days a week.
I hope one day soon I can return to a healthy lifestyle.
Hi Cosmos
Welcome to HP. Sorry to hear you have the dreaded ME/CFS/PVFS. Do have a look at all the other posts - forums, fatigue and pain disorders - and you'll find lots of info there. And, yes, sore throat is one of the symptoms - click here for information, not only what it is about but how to get it sorted.
I might add that I am tons better, having had it for many years and I put this down to a wholefood diet, quality supplements properly prescribed and using [url]Emotional Freedom Technique[/url]. I still have to be careful but life is a whole lot better now. So there is light at the end of the tunnel, but you MUST learn to pace yourself - and being a fitness freak is not a good idea.
Wishing you all the best, and hope you find the answers you are looking for.
Glandular Fever /Post Viral fatigue????
Hi Im also new to the forum, and would love to hear any advice anyone can offer me.
It started 20 years ago when I was 18. I was diagnosed with a severe form of Glandular Fever and was bed ridden for over 2 months,( even missed my 18th birthday!) All the usual symptoms : severe sore throat, fever, aching muscles, loss of appetite and extreme fatigue so weak couldn't lift my head from the pillow some days.
It took several months for me to improve after the initial bout.
Over the years I have had 3 children and numerous jobs so you could say I have had a pretty hectic life.
I have felt though that certain times I would seriously struggle with day to day life due to re occuring tonsilitis, aching glands in neck under arms and groin, aching muscles and fatigue. The doctors havent offered me any explanation in all of this time even though the know my history, just antiobios and painkillers all the time.
Lately in the last few months I have also noticed my grip has weakened and I often have a sponginess in my hands, which is very frustrating as I tend to drop things alot!
I went to the doctor and he sent me for ESR blood test which was 16 and CPF 3. He said to repeat the test in 2 weeks which I will be doing. So there is an inflammation but not sure where.
I have only just found out about the after effects of Glandular Fever as I am currently working as a community care worker and was told infact you can have reoccurant bouts of glandular fever even though I was told that you couldnt!
This has made me think now back to all the years I have suffered and wondered is it at all possible for it to linger for this length of time??? every story I have read its only been months not years like mine.
Thanks and any comments aprreciated, and for all those who are suffering these symptoms I certainly symapthise!
ME/CFS/Fibromyalgia could be Lyme Disease
For some people in this forum I'm sorry to tell you that it is possible you have Lyme Disease, which is very complex. There is a lot of mis-information online, so it's important to look at the sites named below if you want the truth. Part of the reason for misinformation is the cost of conventional treatment which includes long term intravenous anti-biotics.
I used to be full of energy, very fit & active, earning my living as a studio potter. Life was good.
Then, I had acute bronchitis for 1 week & was too ill to work or socialise again. Diagnosed with Hypothyroidism and ME later called CFS. After 10 years I found out about a private GP Specialising in all causes of Fatigue. He diagnosed me with his accurate tests, as opposed to the NHS unreliable Western Blot test.
He found:-
Lyme Borreliosis.
Looking at lyme blogspot.com/mists and myths will take you to a very thorough description of it; lyme uk ipetition also has good info & good links ). It would be very much appreciated if you'd sign it. We're trying to get early diagnoses & treatments instead of the current situation of ignorance & denial. The sooner it's diagnosed & treated the better chance of full recovery, before it has time to spread into all parts of the body.
Cryptostrongilus Pulmonii (Microfilarial Worms),
Chlamydial Pneumonia (Cpnhelp.org) is a very good site;
Bartonella Like Organisms.
There are several other opportunistic/co-infections.
After 6 years of gradual treatments, to avoid severe die-off reactions, I am slowly getting better. For the first time in many years I no longer feel half dead. My energy is up from 5-10% to around 20-25%. I'm hoping this trend will continue so I can have a life again.