Diagnosed with Post Viral Fatigue Syndrome and nothing is helping!

Posted , 4 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hi there,

I'm looking for some advice. After a brief sickness bug in Nov 17 I recovered and the started feeling 'off' with numbness in my legs and arm (particularly the right side), a general nausea and constantly light headed which got worse upon standing or walking around. GP referred me to neurologist in january who diagnosed me with PVFS but also put CFS/ME on the letter to my GP.

I am working full time and managing okay but then 2 weeks ago I had a total 'crash' and found myself unable to drive due to pins and needles in my leg and the light headedness. I was pretty much bed bound for a week and still feel weak and light headed upon prolonged standing now. I have been taking magnesium, vitamin d, vitamin b12, coq10 and d-ribose aswell as iron tablets and sertraline and have had no social life since November but it's really getting me down now.

Has anyone had this and how long did it last?


0 likes, 4 replies


4 Replies

  • Posted

    My unknown illness started in August last year and I am starting to make some real progress now. I too have a loose diagnosis of post viral syndrome. Both my colleague and I got sick at the same time. All investigations were negative. A diagnosis of CFS/ME seems jumping the gun in my opinion, you’ve only been poorly for about 4 months? Some of these viruses these days can last a long time. Putting a time frame on recovery is hard. My doctor says it can take 6 months to a year. If the condition is then really persisting then a diagnosis of CFS would be more appropriate. I have only recently returned to work and am only returning part time and have built my hours up slowly. Would this be feasible with your employer? Really slow things down, cut out all the stress where possible, eat well, rest and sleep when you feel you need it. Pace yourself. Try not to panic and give yourself time. I am so much better than I was. Try not to google too much and read lots of depressing stories from others. Most that get better never bother to post about their recovery. I wish they would! Positive thinking! Do things that make you happy and relaxed, massage, acupuncture etc? Keep seeing people and talking about what’s going on, don’t shut yourself away too much. Keep on with the supplements. You will get better, sometimes these things just take time and patience. I understand your frustration, but just take one day at a time. All cliches, but so true!
    • Posted

      Thankyou for your response, the neurologist said to me it would be about 6 months but I do understand that if it lasts longer then it will be classed as CFS. I naively thought I would slowly get better not a bit better and then crash and so on but I am learning to accept it now.

      I'm sorry to hear you have this also it is really difficult to accept. My employer has been great, I have worked for the nhs over 10 years and do have a pretty stressful job and was very busy and stressed when this illness first occurred which I do think has contributed. I will certainly look into working less hours.

      Thanks for the reassurance i have been shutting myself away a bit but don't think it helps, trying to take it one day at a time now 🤞

    • Posted

      Yes it certainly doesn’t follow the normal trajectory of an illness where you gradually get better day by day, week by week. Sometimes it’s one step forward, two steps back and so on. A doctor friend of mine told me, I bet you’ll feel different from how you do now in 3-4 months time, and he was right! I believe my illness was a gastrointestinal infection of some kind, then I had lots of shooting pains and aching all over, weird headaches and fatigue which all waxed and waned. And just a general ill, flu-like feeling. You feel as though you’ll never be yourself again, but you will be. Also, I think other people put pressure on you to ‘get to the bottom of it’ and ‘insist your doctor does something.’ Throughout all of this I’ve come to realise that sometimes they just can’t find a specific cause and there’s little they can do in the case of viruses. So it’s a case of boosting your immune system and generally looking after yourself and thinking positively. In a way I was lucky that I had the support of my colleague and another parent (we work in a school) as all 3 of us were ill together. We see each other regularly and it’s been so comforting to have others that know exactly how you feel. Even though this isn’t life threatening it can certainly be life altering for a while. Take care and good luck to you! Xxx
  • Posted

    Ehm..about 18 years...had to get through the whole thing with denial, anger, grief..then slow accept and start of a wholly new lifestyle.

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up