Post viral fatigue syndrome- looking for recovery advice/story

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If you've recovered from this please respond here. My son is very ill. We need recovery stories.

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  • Posted

    Yes, I have recovered or at the very least improved back to almost normal life. I was diagnosed in 2015 and it was a tough two years. At the beginning I was pretty much bedbound and used to crawl up our stairs, I was 38 at the time. I am now 40, working full time again, training for a half marathon as well as being a mother and treasurer of a running club. I have to manage my lifestyle carefully and listen to my body, when it warns me I'm pushing too hard I take my foot off the gas. I used CBT, pacing and graded exercise therapy to get this far. Hope this helps. Happy to answer any questions you have.

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    • Posted

      CBT is Cognitive Behavioural Therapy, available on the NHS in the U.K. My therapist taught me to pace which is a technique where you work out how much you can do without becoming tired/unwell or experiencing payback a few days later. You then reduce that amount by 20% and that is the amount of activity you do each day. Over a period of time you build this up slowly, for me, this meant I started with a three minute slow walk each day and built on this every couple of weeks. I also took a supplement called D ribose in the powder form 3 x per day. I still take it every now and again if I'm struggling, my muscles twitches are bad or my dizziness has kicked in. This is always the first sign that I am approaching the danger zone of a relapse for me.

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  • Posted

    Hi, best wishes for a speedy recovery for your son.

    I have ME/CFS and am now in my 60's having been diagnosed in 2009.

    My son has a friend who was diagnosed in his late teens and after a hard couple of tears he is now better and on the way to full recovery (fingers crossed). 

    In all the articles and medical info I have read, it states that younger people have a higher probability to go on to full recovery. 

    Keep going, the statistics are on your son's side. 

    Be optimistic, the acute phase can remit and things get easier. 

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  • Edited

    My daughter had Post Viral fatigue following a very bad flu when she was 16. Now she attends college full time and is planning to apply to Medical School. 

    I do remember it taking a long time, though. Her high school years were tough and she also developed depression along with fatigue. I guess what I'm saying it it was a gradual improvement that she experienced. 

    Although she is doing very well today, she still does not have the same energy she once had, and requires naps on most days. But, I woudl she she recovered. If you have any other questions, please contact me personally and I would be happy to help. Good luck with your son! KPD

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    • Edited

      Hi Mary,

      Vitamin B-12 and also a supplement called Super HD Cellucor. The 2nd supplement is intended to help with weight loss but it improved my daughter's energy dramatically. 

      Due to the depression (because she was unable to do the things that she once did) we did get her a therapist. He treated her for the depression and anxiety, as well.

      Allow your son to pace himself and only do things that he can manage until he gets better. Pacing is one of the best things for Post Viral Syndrome. Resting in between his daily acitivities is helpful, as well. If the doctor has diagnosed him with PVS, then he may be able to treat your son with anti-viral drugs. These are effective in some cases. Good luck to you and your boy. Wishing for a speedy recovery! KPD

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  • Edited

    Most people go on to naturally recover from post-viral fatigue without needing to do anything. Once people have been ill for over a year, prognosis gets worse. It seems that we just do not know why some people get better and others do not.

    ?There's been something of a scandal with poor quality UK research making unfounded claims about what leads to recovery. There was coverage of this in the New York Times recently, and if you were to google for 'Getting It Wrong on Chronic Fatigue Syndrome?' you might find that article to be of interest.

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  • Posted

    I am writing this to you as a stillrecovering pairient, but I am almost back to normal life.

    My name is Alex and I am now 17. I was undiagnosed for a year and a half, but back in 2015 I was diagnosed.

    Recovery will be difficult, and I must brace you that it may be hard, but you must tell him he has to push through.

    You can't push too hard, and you must look into something called pacing which will give you the best way to ease into the normal course of life. Another great recourse that I have used is called CBT (Cognitive Behavioral Therapy). Also finding a good physical therapist and motivational coach is a good idea. The motivational coach is because sometimes you can reach a mental limit whichever makes it hard to move on, and you can even regress. I speak from experience.

    Above all, and this may not be for everyone, but pray and keep faith that recovery will come. If you don't do anything I say at least look into CBT.

    I wish you and your son the best of luck in recovery and I will pray for you.

    BE STRONG. You are not alone.

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  • Edited

    Hi I'm 32 and fell in in august 2015 . No specific virus but it was after a period of stress and pushing myself to the max. The first 6 months I was severely ill. Couldn't do hardly anything without feeling terribly worse after- walking the kids to school, showering, drying my hair- sent me even further down hill. Lucky that I got a fairly quick diagnosis and basically I rested! Laid in bed at any given opportunity and did minimal exercise- used a Fitbit to record my activity and worked out my limit and didn't go over it. I also took every vitamin going and made lots of green juices and smoothies. I had weekly massages too to help me relax. I then spent a year being moderately ill but could go back to my part time job and could do things with my kids- all the while I still felt unwell and not myself. Pretty much 2017 I would say I'm 99% recovered. I'm back at the gym going a couple of gym classes a week and most days it doesn't even cross my mind. If I do too much I do feel symptoms creeping back in but with some rest I can get back to my baseline. Don't get me wrong- I'm not how I was before ( my before was going to the the gym and training intensely Every day of the week as well as never sitting down at home- which is what is got me in to this mess so il never go back to that kind of lifestyle out of choice). If anything this illness teaches you to listen to your body and look after yourself! My friends think I'm mad when I say I have to pencil in a day in bed after a big night out (which is a rare occurrence lol) but that's just how I treat my body these days.

    For your info my symptoms were:

    Severe fatigue made worst by doing any kind of activity

    Headaches daily

    Pains behind my eyes

    Pains in my bones/ muscles literally from my neck to to my toes.

    Muscle twitches

    Brain fog

    Nausea

    Severe anxiety

    Pains in ribs

    Stomach pains

    The list goes on!!!

    I wish your son a speedy recovery! I'm sure with a careful mum like you he will be fine!! Xx

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    • Posted

      Hello, this is really useful information and thanks for sharing your symptoms. I can relate to almost all of them and reassuring to know im not the only one.

      my symptoms started 8 weeks ago with just a cough and a cold and (which i havent had for years) a week later muscle twitching and bizzare muscle pain in different areas daily also no energy and taking to bed some days and horrendous nausea, felt like a massive hangover!

      I find the hardest part is the Gps dont know if its ME/CFS, Fibromyalgia or PVF, as apparently my symptoms so varried. Not knowing is making my anxiety awful daily because i lose confidence that could be some other illness because i have no real answers.

      im glad to hear your doing well its really encouraging and sounds like you have had a really tough time.

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