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Post viral fatigue syndrome- looking for recovery advice/story

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mary96913
mary96913

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

3 likes, 70 replies

70 Replies

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  • pamela77705
    pamela77705 mary96913

    Posted

    Hi mary i ave also recovered the reason you ave cbt is because your body refuses to engange with your head any more because you ave overridden the request to rest a million times and stilled pushed ya body to function when ya shattered i remember been in a state and not really functioning very well and i just sat and sobbed i coulnt believe what id done to myself i was so busy looking after every 1 else that id forgotton about me self. Yoga got me bk on my feet and helped with the pain x sleep . Google yoga for chronic fatigue its only 10 mins long only breathing x streching but it got me on my feet and bk to work after been off 6 months . Hope this helps take care xxx
  • lowri74841
    lowri74841 mary96913

    Posted

    Hi Mary, I've just been diagnosed with this myself. I sincerely hope your son has made a full recovery. Could you please let me know of anything you think helped? Thanks 

  • dave37323
    dave37323 mary96913

    Posted

    Mary:

    In May 2016 I got the first of a few "bugs".  Nothing serious.  Still worked.  Still did my day to day.  Then June, July, August....kept getting sick.  

    On Aug 4 2016 I got home from work and had intense burning/pain in my thighs.  By that weekend I was unable to walk to the mailbox w/o severe muscle pain in my thighs/but/hips on exertion....any exertion.

    My PCP d(x) me with Post Viral but my neurologist worked me up with MRIs, EMGs (x2), blood work, etc.  All normal, other than evidence of previous Epstein Barr, Parvo, Coxsackie infections time indeterminable.  

    From Aug 2016 until April 2017 I had an awful time.  I could barely walk.  Felt sick.  Muscle twitching everywhere.  The docs kept reassuring me it was a post viral issue that whacked me pretty good.

    In the summer of 2017 I began feeling a little better with the help of Cymbalta.  I was able to walk better.  I was able to wear certain shoes again (I couldn't wear dress shoes - I needed tight tennis shoes to walk).  

    Now it is May 2018 and I am even better still.  Doing yardwork.  Riding bikes.  I can't run yet.  I still have significant weakness in my right leg.  The left feels about 90%.  All in all, I am happy.  Not close to 100%, but considering...I am happy.

    I am 46....was 44 when it hit.  I'm 6" 210 lbs. and was always very active.  Lifted weights.  Played tons of sports.  Hopefully someday I'll be able to do it again...but if not...I'll take it.

    So...nearly 2 years later I still have twitching everywhere and a weak right quad/hip/buttock.  Some days worse than others.  But life definitely got better, and it probably will for your boy, too.  I read a lot about it on the internet, just as you.  Take it with a grain of salt.

    Good luck and feel free to ask Qs...

    • kikisan
      kikisan dave37323

      Posted

      Hi Dave,

      it is good to hear a recovery story like yours, It sounds like it has not been a walk in the park although it seems like you have a good part of your life and energy back. I was a very fit 48 yr old woman before I caught EBV in January - it is doing a number on me....currently my most impacting symptoms are chest pain, headache, hand and leg tingling, leg weakness....I am still in denial that this has happened to me but slowly starting to accept that the next year will be in recovery mode.....

      How are you really now?

      Kiki

    • dave37323
      dave37323 kikisan

      Posted

      Thanks for the Q.  I feel better each day, I think.  Coming up on 2 years.  Right leg is still weak, but feeling more "normal".  Muscle twitches are still rampant and diffuse, but I just block them out.  I'm not ready to try a light jog just yet, but I can see it as a possibility now.  Couldn't before.  Hell I couldn't walk even short distances w/o severe muscle pain/burning for many months.  I doubt I'll ever be pre-virus level ever again (age has something to do with it), but, considering, I feel pretty well.  Fatigue is lifting.  Cymbalta seems to help.  Doc wants me on it another year.  My neuro-muscular specialists did warn me that this can recur, but I also block that out.  Been over 2 years...definitely life-changing and eye opening.  Feel pretty lucky, though.  For the first few months I seriously thought I was going to kick the bucket.  

    • kikisan
      kikisan dave37323

      Posted

      Hi Dave,

      You seem to have a great attitude. I know it sounds cliche but the mind is a powerful tool that I am sure can aid in the physical recovery process. It is a tricky age to get caught with such a virus with the less than stealth ability for our immune system to fight it as we are also going through a natural aging process...I am very encouraged by your healing journey....I understand feeling like you are going to kick the bucket! I have been so healthy for all my life so feeling these crazy symptoms and feeling like I've been invaded put me in that doomsday headspace too.......we've got this though. We are still here and we are getting better every day. Take good care and enjoy the weekend!

      Kiki

  • rich76489
    rich76489 mary96913

    Posted

    Yes i made a full recovery - Docs didn't really have much idea what was wrong, but i had all the classic PVFS symptoms. Something was not right with me 1yr before PVFS, namely insomnia, night sweats, and anxiety. These were intermittent and had blood work done due to the night sweats and nothing sinister revealed itself.

    Around April of last year was when things took a serious turn for the worse. The insomnia was improving and hadn't has any anxiety or night sweats for months. However i was feeling a little run down with a cold and general congestion. In my infinite wisdom, I participated in long bike ride (30miles), and this tipped me over the edge. All symptoms exploded with the fatigue easily being the worse of them.

    The acute stage lasted 3months, with a further 6+months actual recovery. I did literally nothing during the acute phase other than a spot of paced walking and gardening. I felt absolutely terrible; little energy, weird muscle twitching/aches/pains, constant post nasal and chest sensations and real crappy thoughts. Fortunately, i at least knew exactly what i was capable of doing and never went over my energy threshold. What aided me was meditating daily and learning to forgive, (really) love and be compassionate with myself. This further allowed me to become present and accepting of my situation. This is when the serious suffering ended and exactly the point when i started to really recover.

    Today i am 100% recovered smile     

    • kikisan
      kikisan rich76489

      Posted

      This is inspiring Rich....thank you for posting smile
  • isha_33518
    isha_33518 mary96913

    Posted

    Hi everyone,

    I have post viral fatigue  and thought I’d share a few things that have helped me feel better smile

    But first I’ll explain how I got here. I had tonsillitis and some sort of sinus infection from december through to January. Having recovered from that my body started feeling weak, I felt like my circulation was poor in my arms and legs, had muscle weakness, pain in the eyes, and a tingling feeling in my hands and feet but especially in my feet and a constant feeling like I had a fever even though every time my body temp was measured it was “normal” as well as feeling exhausted after a days work.

    I was still just about well enough to work full time luckily! I can’t afford to lose my job. Although my social life was pretty non existent and I was seriously irritable.

    Luckily I have a decent doctor who took me seriously and did a wide range of blood tests to rule out a number of things at the beginning of February. She tested for anaemia, b12 deficiency, Epstein-barr, diabetes, thyroid issue, bone profile, kidney/renal function, vitamin d deficiency among other things (as well as something to do with muscle function although I wasn’t sure what?).

    Everything came back normal! She explained I had post viral fatigue and that I had to pace myself every day and not over exert my body. There were days I’d come back from work and I’d be so exhausted that I’d stay in bed until the morning!

    I took it easy and started eating healthy and cutting out caffeine and some symptom  started to improve such as the feeling of poor circulation. I then started to look into acupuncture and cupping therapy. I had Chinese herbs too.

    After 6 weekly sessions of this, in early May I was starting to feel much better! I’d say I’m 70% better now, although sometimes I’ll have a down day. I don’t need to have acupuncture weekly now and will go twice a month and slowly phase it out.

    In addition to acupuncture/cupping. Other things that have helped:

    Magnesium supplements - I take 200-300mg a day

    Coq10 - about 100mg a day

    Black seed oil - a tea spoon a day

    Iron tablets - my ferritin is on the low side but I’m not anaemic

    Oh and my doctor also referred me to a Chronic fatigue clinic and I’m open to this as well so waiting for an appointment for that.

    It’s June now and I am well enough to now enjoy going to the movies or dinner with friends, I’ve even booked a holiday and will be going abroad in a couple of weeks. I still take it easy though and I’m not super active and won’t be going running/jogging any time soon ha! But I really do believe I’ll make a full recovery.

    I hope others find my story helpful 

    • heather00435
      heather00435 isha_33518

      Posted

      Hi isha, so happy to hear you’re doing better! Your story sounds similar to mine with how it all started. I too had some kind of throat/sinus infection and then the muscle weakness and tingling. I had the virus back in September and didn’t rest as much as I should have. My symptoms got worse in january. Up until then, I’d just kind of ignored the tingling thinking it was a low iron or low B12 issue. 

      I’m doing much better now. My main problem was muscle aches and pains, but after supplementing with calcium and magnesium, those are pretty much gone. Now, my eyeballs hurt, but any random symptom I experience usually seems to go away eventually. Some days I wonder if I’ll ever feel normal again, but then I remind myself how things could be so much worse.

      I agree with all of the commenters who have said once you accept that what you have was caused by a virus (I worried for months that it was something else and kept self-diagnosing myself with other illnesses) and that you WILL get better, things really do start to improve. The mind-body connection is real. Stay positive, meditate, and focus on healing.

    • isha_33518
      isha_33518 heather00435

      Posted

      Glad to hear Heather! I agree I did a whole lot of self-diagnosing in the beginning. The worst thing we can do is google symptoms, the internet will have us convinced we’re dying! :D

      I’d recommend everyone to only seek out recovery stories too. I really believe reading negative stories will influence you into thinking you’ll never recover..it will affect your mindset. 

      You have to be mentally strong and stay positive, no matter how awful you feel! A good supportive doctor helps too smile

    • kikisan
      kikisan isha_33518

      Posted

      Hi Isha and Heather,

      Thank you so much for sharing pieces of your post-viral journeys here. Like you both I suffered with a tonsillar infection (started mid Jan, 2018). I have been through a roller-coaster of very troubling symptoms ever since: tired and wired, chest pain, weakness, splitting headache, weight loss, poor circulation, shallow breathing, tingling......etc.......I look at myself and think that I look ill, but somehow I am able to present ok to others....in other words, my illness has been invisible to most people who see me, including those who know me well! 

      I have seen my general practitioner doc, infectious disease, tropical disease, neurology and multiple ER docs and have been tested for everything under the sun, including autoimmune disorders (thankfully negative). The one thing that I tested positive for was a recent EBV infection....so that I know. I am just trying to stay positive and hope this doesn't trigger some other crazy thing. I have an appointment now with a functional medical doctor who may look at my iron levels and B12 along with other natural anti-viral protocols. I am also seeing an immunologist to look at my white blood cells with a finer toothed comb. Isha, in the mean time, I may go back to my acupuncturist - it can't hurt!

      Heather, thank you for your words of encouragement - I too think that the mind body connection is very strong. I must stay positive but also understand my real limits which seems to change every day. The internet is great in some ways but given my analytical mind, the self-diagnosing is so very crazy-making! 

      All the best to both of you - sooooo nice to hear stories from those who are really seeing the light of day again. 

      Stay well,

      Take good care,

      Happy June smile

      Kiki

       

    • isha_33518
      isha_33518 kikisan

      Posted

      Hi Kiki,

      I completely understand what you mean about appearing well to others, it’s so frustrating isn’t it?!

      Whenever I would explain that I have PVF to others the usual reply I’d get is “oh you don’t look unwell” or “so basically you’re tired right? You need more sleep!” It would really wind me up lol! 

      How many sessions of acupuncture did you have? For me I saw a marked improvement after my 4th session, generally they advise about 10-12 sessions in total

    • kikisan
      kikisan isha_33518

      Posted

      Hi Isha,

      Thank you for your understanding smile , yes, so frustrating having an invisible illness! I would honestly would trade this in for a broken arm. 

      I have a chiropractor/acupuncturist. I have been seeing him for years but I am now uncomfortable with him doing any back or neck adjustments with my dizziness and chest pain. I will try to have him just focus on the needles. I will make an appointment tomorrow. How spread out were your sessions?

      Kiki

       

    • isha_33518
      isha_33518 kikisan

      Posted

      Hey Kiki,

      I had fluctuating dizziness in the beginning too, it seemed to dissappear after acupuncture.

      I went to see a Chinese acupuncturist. At my first consultation I wrote down in detail all of my symptoms and how it began. I then had a session of acupuncture followed by cupping for about an hour. I went once a week for 6 weeks. I am not sure if chinese acupuncturists do things differently though? He had explained that he would be focusing on increasing my energy flow

      I am now going every 2 weeks as I don't feel like I need to as much now

      By week 4 the majority of my symptoms felt better and i could feel my energy levels coming back to normal I was upto a point where i doubted i had PVF in the first place lol.

      I still have the odd symptom here and there but it is manageable now.

      I hope you have success with your acupuncturist,

      Take care : )

      Isha

       

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