Hello eveyone,
I have been diagnosed with "post viral symptons". I have not got a clue what it is.Has anyone heard of this. For over two months I have been suffering from the following:
Heavy head feeling,
unbalanced.
constant pressure in the head
flu like symptons but no fever.
Pins and needles in left and right leg. Sometimes hot and cold flushes in the leg.
Prickly feeling in the arms
Muscle fatigue or cramping in the hands. I feel like my hands are so stiff sometimes.
Fatigue all the time ( despite having a good sleep).
Apparently I had a viral infection and then one by one these symptons appeared. it is dragging me down. I have MRI, blood test which came back okay except for slight raised "infection".
Does anyone else have these symptons? It is dragging me down. Is there a solution. The Dr says there is no treatment but it will disspear or subside on its own... when? when? when? Some days I can handle it other days I want to just curl up.
No offence but this syndrome just sounds so wishy washy. Could I be misdiagnosed?
Sad Elle.
Hi Elle, i was initially diagnosed with post viral fatigue Nov2013, i did not get better, lost my job etc after about 6 months i was then diagnosed with chronic fatigue syndrome which i am currently trying to remedy. I was prior to this the fittest healthiest 34 year old you could meet. I've had tons of test with the only constant a slightly low white blood cells count.
I hope you recover though, but feel you need to know what can happen. The only logical thing that comes up with misdiagnosis is lyme disease so you might want to get tested for that by the western blot method. I take it prior to this you were a very fit and active person ? How old are you ?
Post viral fatigue is basically your body attempting to recover from infection. I'be had it following glandular fever more times than I can count, and pretty much after every cold. It's really debilitating.
Not gonna lie, how your feeling all the time is pretty much exactly the same as me. The prickly feeling in the arms is a good way of describing it, I've really struggled to explain it.
It is really vague, and as I too am strug going to come to terms with, there's not much you can do. If your worrying about misdiagnosis then ask about having some blood tests done, check for a vitamin d deficiency or any thyroid problems, they often present similar symptoms... I had to have those ruled out before the doctor would diagnose me with cfs though...
Hope that was slightly useful to you, and I hope you start to feel better soon.
Hi Elle,
Ive had a lot of the same symptoms and also dizziness, back and neck pain, bloating and chest tightness. This started for me in April this year and ive had a number of blood tests which have not shown anything of concern. My doctor also told me I was suffering from a post viral illness and that it will eventually go away. As the symptoms have persisted for 6 months+ Ive now been refered to the CFS service and Im currently awaiting an appointment. I see cfs is also sometime referred to as post viral fatigue syndrome.
It is very difficult to deal with. However, Ive found there are ways of managing the symptoms- healthy diet, rest and cutting back on alcohol. Hopefully, the CFS service will be able to provide further help.
What you describe sounds very familiar - but if you think you could have been misdiagnosed may be worth going back for another opinion ?
Dear David,
Gosh I am sorry to hear you lost your job. Crumbs I am working full time and I won't lie I am fearful of losing my job. Trying not to be. Yes I was fit and well before this.
I am sorry you have CFS. I hope you are not bed bound. Have you heard of the Lightening Process? I read a bit about it but I don't know it seems a lot of money... some have good results and some don't.
I am 39. I am going to try acupuncture tonight... Have to keep on trying.
thanks for replying.
Wow amycathy. I dont want to sound rude but I am so grateful that there is someone out there who has the same symptons as me and that I am not going bonkers.
I am lucky - I can make it to work but that is about it then i go home and have to rest. It's the unbalanced thing and pins and needles or prickly feeling that nerves me.
I am taking cod liver oil and am going to try some acupucture... but I know there are other supplements to take.
I also hope you start better soon 
. Are you taking any supplements. Tonight I will have a proper research on the net and see what is good and post it on here.
xxx
Hi Elle, no i am thankfully not presently bed bound but was for many months in the beginning, i could get around to make meals but that was it... i was often feeling so ill you feel you are dying. I spoke with an organiser of the lightning process but wasn't impressed, not for me. I know this condition is not in my head. I was studying naturopathy before this so have a good understanding (not good enough) of the human body and systems, this is a very real physical dysfunction for me and i will fix it. Good luck with the acupuncture !
Hello Jam,
I am sorry to hear you have CFS. I am frightened my condition will turn into CFS... I know it has not been long for me - two months, so I supppose I havge another 4 months to go...
Many thanks for replying. I think the doc is right that I do have post viral. It just sounds and feels odd. I was wondering are you working full time too?
I am lucky I guess because I am single and do not have children but from skimming the net I hear there are sufferers who are trying to hold down a job and manage children.
I am going to look on the net tonight to see whether there are anything I can take.
I am resting and sleep well but I do not feel rested, do yoy get that? it's an odd feeling like a heavy head all the time...
I really liked what you said, "I know this condition is not in my head". it is so true. And I am glad you said it. I look ok I think when I walk around the office but the way my body is feeling... is another story.
What are your predominant symptons? Tonight I am going to have a sit down and see what we can do. any particular vegetables to eat, things to drink. etc...
So predominant symptoms are the fatigue, especially bad on rising, heavy legs on rising, heartbeat feels very weak (i was a triathlete), eyes are discoloured and mildly bloodshot. I often use the word 'zombified'. Compared to my old self. Diet wise, variety, seasonal wholefoods, preferably organic if you can get it and afford it. I don't think diet is enough for resolution of CFS, supplements are essential. I prefer herbs and wholefood supplements like maca, chlorella, bee pollen. Right now i would say the two most beneficial products for me have been holy basil and bee pollen. You might want to try those. The holy basil improves my sleep and mood significantly and just recently i have discovered the bee products provide noticable energy. Really hopeful for that, early days.
Supplements are difficult because often people buy inferior quality and get no benefit, finding out what stuff actually works is really hard. I have always seen dis-ease states in the body as a lack of cellular nourishment, so the body cannot defend itself.
Hi, yes im back working full time now. I had about a month off then reduced hours for another couple of months. Im lucky as my employer has been quite flexible but I so struggle in the afternoons most days. However, i know there are people who have it a lot worse than me.
Yes I do get the un rested feeling you describe. Ive found b vitamins have helped me. good luck..
james
I know what you mean, it's almost a relief that your not actually going insane... The unbalanced thing is a new symptom for me, and I generally get it in the morning or after I've been asleep... It takes ages to go off and it's really unsettling.
Up until now I have been able to make it work, but it's gradually becoming more and more difficult for me; that's mainly why I have come on here. It has helped no end, but I'm still really struggling with the physical symptoms.
I only really have multi vitamins as my immune system is pants and I have a history of low vitamin d which I have to keep and eye on through the winter... to be honest i've not found that they are a huge help but they're better then nothing.
I wish you the best of luck with this horrible condition x
I know what you mean, it's almost a relief that your not actually going insane... The unbalanced thing is a new symptom for me, and I generally get it in the morning or after I've been asleep... It takes ages to go off and it's really unsettling.
Up until now I have been able to make it work, but it's gradually becoming more and more difficult for me; that's mainly why I have come on here. It has helped no end, but I'm still really struggling with the physical symptoms.
I only really have multi vitamins as my immune system is pants and I have a history of low vitamin d which I have to keep and eye on through the winter... to be honest i've not found that they are a huge help but they're better then nothing.
I wish you the best of luck with this horrible condition x
I know what you mean, it's almost a relief that your not actually going insane... The unbalanced thing is a new symptom for me, and I generally get it in the morning or after I've been asleep... It takes ages to go off and it's really unsettling.
Up until now I have been able to make it work, but it's gradually becoming more and more difficult for me; that's mainly why I have come on here. It has helped no end, but I'm still really struggling with the physical symptoms.
I only really have multi vitamins as my immune system is pants and I have a history of low vitamin d which I have to keep and eye on through the winter... to be honest i've not found that they are a huge help but they're better then nothing.
I wish you the best of luck with this horrible condition x
Yes I think you probably have been misdiagnosed. I like you started with a fluey type virus left me eventually with all your symptoms plus a few more over time . Told I had CFS just live with it which I did . A nightmare and as David said feel you are dying at times. 19 years I have tried to get tests or scans or ultrasound or new blood tests , only now have I found a doctor who said we need to look at your thyroid result, as I have always tried to tell doctors and endos, hashimoto disease !!!!!! Don't just accept this ask for autoimmune blood tests . Don't be like me and just " live with it" . I may be proved wrong in your case but I think it is worth giving a try and hopefully your doctors will be more inclined to go by your symptoms not just tsh results .i am amazed at how many people have been misdiagnosed and told " we can't find anything wrong all tests are normal " and years later actually proved they have hashimoto s not just a guess because they have run out of ideas!!!!!! Good luck to all sufferers to find what we are looking for ,an answer and proper treatment.
Thanks for that Silvia. I have had a full auto immune screen. My thyroid was normal BUT i notice no T3 levels, is this worth checking out ?
I am no expert on thyroid levels I was always told , no need to see results as I would not understand them. I have always been told all tests to do with my symptoms have been done on more than one occasion . My latest appointment with a specialist was yesterday I have not seen him since 1997who at the time was very off hand and rude and sent me home with a flea in my ear saying my illness had absolutely no connection to my thyroid , every test had proved it.yesterday he told me I definitely have hashimoto disease and was shocked that he could nt find in my records that I had ever been tested for autoimmune disease !!!!! He was shocked? ! Having said that he said the ultrasound was the best indication that a person has hashimoto and mine confirmed it but to satisfy me he did the blood tests for it. So you see why I am skeptical about ME/CFS diagnosis . Just thought I would put another two pence worth in the mix might just help some else
Amazing reading that, so you should start to feel better with treatment Sylvia ? Keep us updated on your progress.
Hello AmyCathy,
Do you get it 24 hours a day. I am due to see my neurologist in 3 weeks time. I have no idea why because my symptons have not abated.
The unbalanced thing is mostly just in the morning, but if I'm having a particularly bad day it lasts the whole day 
and the achy prickly feeling is just constant and slowly driving me crazy..
I'm also waiting to see a neurologist after another hospital trip last week.