My GP's provisional diagnosis is Post Viral Syndrome. Could this be it?

Yeah the doctor included my vitamin d level, not sure about magnesium. At the moment I don't have the energy to do anything. Sometimes I feel like I'm just being lazy so I get up and try do housework then my energy goes again and I'm back sitting down and short of breath! I find that some days I seem ok so I go out, but I'm still achy. For the past 4 weeks I've only been at work for like a week. Luckily we had bank holidays and I was on annual leave for a week. I can't go to work in my condition at the moment even getting up in the morning is a struggle and feel like I have to crawwl out of bed. I'm hoping to get a sick note from my doctor but I don't know if this is possible?

I think it depends on your doctor. Try to keep active but in smaller bursts. Any chance you could break up your working day a bit more with periods of rest, or at least doing something while sat down?

Hey Darcy, been diagnosed with PVF for about 6 months now. Prior to it i was an endurance athlete. I can say alot of the symptoms you talk about i also had/have albeit to a lesser degree from the beginning but still debilitating, the fatigue mainly. I am out of work, have been so since January. Get the GP to run as many tests as you can and if no conclusive answer get to see a specialist like a haemotologist. I am awaiting my appointment.

Hi David. Hope you're coping well with your symptoms. CFS is indeed horrible. May I ask how long did it take for you to get diagnosed? I've only had the fatigue for about 4 weeks now, but I have always lacked energy ever since, I remember that gradually my energy level got worse over time and I found that I would go to bed earlier than usual and couldn't do much after work except to rest. 

Hi Darcy,

I was diagnosed toward the end of Febuary. So 3 months. The difference in myself is remarkable. Going from triathlete (participated in the Scottish tri champs 2013) and marathon runner to a fatigued wreck. I used to jump out of bed in the morning, go for my run then work, maybe go for a swim at lunchtime. Lovin life, had a website making money and everything, buying my first home, met a girl Life was great and then i got PVF and EVERYTHING has fallen away. I'm back staying with my father because £74/week is just not cutting the mustard. I'm still not entirely convinved by my diagnosis so am looking at everything else including intestinal parasites. I plan on doing a comprehensive stool analysis. These can be done privately, sometimes you will need a nutritinal practitioner to order then for you. Anyway got more tests this morning, lymr disease, HIV, hepatitis, myastenia gravis. The GP has said they are out of tricks and i have to now see the haemotoloigst. So here's hoping for a recover for us both. The way i describr my PVF condition it's as if my willpower, my heart is no longer strong, my body is no communicating properly internally. the feint feeling i have in my chest i hate the most, like my heart is barely beating. do you get this ?

Your story is indeed remarkable. I think the illness can really affect someone dramatically. Did you get any infections prior to being diagnosed with PVS? Mine seems to be a sudden onset, I had a stressful year though (buying a house, changes at work, developing neck pain) so I don't know whether they all contributed to it. And I can get really stressed at times which I think is another major cause of it. And you mentioned you're looking into intestinal parasites, do you have problems with your stomach / digestion? 

and what can a haematology do? 

erm regarding the feint feeling in your chest,  have shortness of breath at the moment, and I just feel like I have no motivation at all, when I lie down I feel like my life is being sucked out of me slowly 

Hi Darcy. Yes remarkable indeed, even MORE SO was that around 5 years prior to PVF i was studying naturopathy. I wasa juicing organic vegetbales regularly, taking the highest quality supplements, filtered water etc etc you name it i was doing it. you hit the nail on the head..STRESS. I too had a few years of a really heavy lifting fast paced job, had family issues with my sister, then i factor in the training to which i was pushing my limits, even with such a consciously orientated diet it was clearly not enough. So i feel i am in a race to recover my lost self. I was never one before this to get unwell, can't remember when i had the flu, maybe the odd cold...actually for the last few years i have never felt so alive and energetic, people used to comment on it all the time. So i do not want to disuade anyone from juicing, supplements etc i know they work it's getting the recips right for the individual. I think i was doing too much at work, too much at home, and actually too much health, so the balance was lost. This has been a huge learning curve. A haemotologist specilised in blood so i hope to get more answers, even if i have been expoosed to a virus what kind, that alone i think could help me even though they have no treatment. In the meantime i take coconut oil, lactoferring, probiotics, oregano oil with a highly nutritious diet. I'm cutting back on juicing but not exclusing it entirely. I am eating real foods, taking quality supps. Look into the ones i had mentioned. I think the correct regimen of supplements/herbs, rest and nutrition can help us on our way but it's going to take time, no quick fix apparently. i too have motivation issues, not that i dont want to do something just that my heart feels so weak but i do as much as i can without lying around all day, not easy. I know it is important to move the body. I feel that my digestion is not what it used to be and sometimes i feel as if there is a little war going on down there and temporarilly i feel some extra energy and feel a little like my old self, so maybe i have an issue, only the stool analysis will let me know. The NHS stool test is too basic from what i hear and read.

In the beginning mid November i remember just feeling really off, i persevered, then after a few days, shocking energy levels, penetrating stiffness in both legs, i felt like this for at least one month. I had a strain on my left hamstring even though i had not been running. Alot of this reduced significantly in time but i am still left felling extremely damaged. I can function on the most basic of level bue laughing and enjoying life is difficult, and again i have this weak feeling in my heart, my ability to handle stress is very poor. A TCM practitioner (chinese medicine) had said to me i had depleted my kidney jing and needed to rebuild it so i have been trying to do this for the past 2 weeks. Maybe i am improving but it's very gradual. I need to be doing this for at least 3 months. I can't stand another 3 minutes like this. Feeling rather useless. Social life non existent and i just feel like a strong wind would bowl me over and i would struggle to get up. I just feel like sitting staring at the tv or outside, talking minimally. Daydreaming alot.

You're doing everything you can, but maybe take it easy too? You need to give yourself time to heal. Everything you've been doing seem beneficial to your health so just take it slowly and dont stress yourself too much. As you said you were once a workaholic and your body eventually gave up, maybe this is a sign your body is telling you to just take things slowly and it will recover eventually. 

we seem to have similar symptoms, I started having stiffness in my legs too, which I though was restless legs, and I strained my right leg hamstring which I though was from yoga, even though I was practicing very basic poses. Then my legs have been weak since and I get clicking on my joints sometimes. 

Thanks Darcy, i've always been in the fast lane so adjusting is taking time but my body is the boss now. I do what it tells me. My diet is never going ot be a problem. Look into TCM theory on chronic fatigue and what they say about the kidneys. Alot of that made sense to me more so than what my GP was saying. I'm going to try it so we'll see if it works.

My CFS started with the flu, and it became the flu that never went away.  I think this is pretty typical of CFS. Based on my reading and my experience, I believe CFS is caused by the perfect storm: a virus, genetic predisposition, and stress. At the beginning, I was running around from doctor to nutritionist to massage therapist--to no avail. Now I realize this was just another manifestation of my type A persoality, which believed that if I just did enough stuff, I'd get better. Not true. Now I just rest.

Hi david, a bit of an update, i found out yesterday that i have vitamin d deficiency, so i guess that explains my aches and pains and tiredness.. I'm hoping that thats the cause of my symptoms, although part of me feels that its something more serious (but i guess I always had that thought). I have a better outlook now though after the diagnosis, apparently it will take months for the treatment to take effect. I guess nwo they found something they will stop investigating further (which worries me a little bit) but i guess its process of elimination so treat one thing at a time.

Hi Darcy, thanks. I really hope this is cause of your problems as it would be really easy to fix, as you say in a few months, maybe less. Getting a vit-d test from my GP has been really difficult and i decided not to pursue it, mainly because i had been taking vitD supps for a few years and my diet was really wholesome and nutritious but i know i do need to get tested. I actually went out for a walk this morning and nearly feinted, felt dizzy and really weak, almost stopped to ask someone to call an ambulance for me. After about 5 minutes i recovered some normality. I mean i've never did this before or felt like this before in my life. I am re-starting my appointments with my local Chinese doctor who does acupuncture and herbs. I can afford £80/week. I need a reprieve from this nightmare. All the very best.

Is it worth maybe asking your GP? seems logical for them to do the test as you have muscle weakness etc. Its a bit stupid how some doctors are so reluctant to do the test, i was actually refused a blood test so many times because the doctor didnt think i needed it, and my physio gave me no hope at all and made me think it was all in my head. Thats why I changed to a different doctor, and boom they found something. Something like this in long term if misdiagnosed could have a damaging effect on my body if left untreated. Although i read somewhere that although the prognosis is good, a lot of people still feel the symptoms after a few months. But as you said youve been taking vit d and youve alway been active being an athlete, so i guess maybe youre body just needs to recover from the exhaustion.

I do find it strange though that when the doctor suspected that I may have post viral syndrome, that my fatigue got worse, and after this diagnosis i feel like im picking up again. But then i have good days and bad days. Its amazing how psychologically a diagnosis can affect us. Its like self fulfilling prophecy?.

Hi, i do think in the beginning of my illness, hoghly likely viral, i continued to work, i continued to train without resting enough and this is the result. I have improved but i say the rate of improvement is unnoticable daily and monthly it is like 5-10% per month. It's been up and down. I know what you mean with the GP and tests, yesterday i was told to accept the diagnosis and i said i will but ONLY when everything else has been ruled out, so they agreed to test for lyme disease, HIV, hepatitis and myastenia gravis because i have had issues lately, nothing serious, optician says i have better than 20/20 vision. Anyway the more tests i can get done the better, moreso because if i do 100% have  PVF/CFS then i can accept that and can feel confident i can get well, at the moment i have been all over the place. My heart goes out to the thousands of people suffering alot more than i, this condition is real, appears to be different from everyone but the main problem is our lives are all on hold, the people we once were gone. I want to the old me back and i will not rest till this is so. I feel my condition is purely physical, all internal problems, my mind is strong but something in my body is not working properly, i can feel it as i type this, again i say with me it is this weak feeling in the chest, that my heart is being deprived of power. I just ordered a vitamin D test, £25 i felt was very reasonable. I can't wait for the GP. The NHS is too slow to diagnose, to test. It's almost if the GP's are reluctant to k tests because they cost money.

Yeah i understand how frustrating PVS can be, during the past few days i have been reading a lot about it, medical information to people's experience of it. Its as if this is a diagnosis given because the doctors have given up or are financially restricted - and worse, there is no cure for it or test to prove it. I think thats just ridiculous because people do recover from it. Atleast youve had all sorts of tests because of your determination and i think at this moment, you are probably healthier than me! as i have only had a baseline blood test and they already spotted something, so god knows what else I have!. I know its frustrating that youre trying your hardest to search for an answer but dont forget that so far youre tests are showing that you are 'healthy'. So don't give up.

Thanks Darcy, yes when we are unwell, and lord knows i am a terrible patient we want the quick fix. I do have alot to be positive about but it is difficult when you know with every fibre of your being there is something still not right. I was so in tune with my body being a highly level amateur athlete for a number of years, and that is a problem because all of the GP's with the tests they run are not interested in optimum health, just the basics. I hope my latest blood tests show that my white blood cells have stabilised, now down to low levels, that would encourage me. On the increase say neutrophils 3 and total WBC at least 5 would be nice. Ultimately they can run all the tests, but my body will let me know when i am well. I go on how i feel, on how i used to feel to what i am now.