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Post viral symptoms / syndrome

Posted , 87 users are following.

Elle1234
Elle1234

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.

4 likes, 464 replies

464 Replies

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  • ian04594
    ian04594 Elle1234

    Posted

    Hi Elle,

    Reading this conversation I can relate to alot of what has been said to my own personal illness.I have had alot of these symptoms over the last 3 weeks,I had an MRI scan 4 days ago and I am waiting on results,the doctor keeps saying its anxiety but I believe its much more than that.my symptoms are as follows:

    Numbness to face and head (permanent)

    Numbness to legs (occassional)

    Headaches

    Dizzyness

    Anxiety

    Cold flashes

    Back pain

    Heavy legs

    Muscle aches/pains

    Fatigue/weakness

    Tiredness even tho I have slept well

    I find all of this worrying and I dont for a second believe all of this is just anxiety,however the fact of not knowing what is wrong with me is causing anxiety attacks

    I am

  • Eddandstufff
    Eddandstufff Elle1234

    Posted

    This all started November of last year after a protected vaginal but unprotected oral from a woman I later found out was HIV positive.

    After months of grueling symptoms which in the beginning included muscle stiffness, sinus infections, really bad herpes outbreaks, burning sensations in my legs, aching leg pains that would migrate to my hips and balls of my feet, one of my feet swelling up on its own and chronic constipation, I was pretty sure I was one of those rare individuals who caught HIV from receiving oral.

    Fast forward through a year of testing, all coming out to be negative my doctors chalked it up to anxiety. I visited an ID doc who tested me for EBV and found I had super high levels of antibodies in my blood. I'm not sure if this was a mono infection but it is definitely a viral infection that is systemic.

    The lingering symptoms I have if I stand too long on my feet I get intense chest pains and this aching feeling in my left arm that is continuous. No matter how much I sleep I never feel totally well rested and I suffer from chronic constipation. I also get weird pulsating headaches from time to time. When I first got a CBC in the beginning I had low iron, low vitamin D and high monocytes. I was pretty certain I'd contracted HIV but I didn't.

    Idk what virus caused this, my doctor thinks it was EBV. Anyway I found this discussion about post viral syndrome and all of you guys symptoms resonate with mine. I am so much better than I was a year ago but it's taking my body a long time to recover. I work out again, although not as hard as I used to. Drink lots of water and take a probiotic for my stomach every day. I don't know when or if I'll ever be the same again, but I am so happy I'm far from where I used to be. I couldn't even function on a normal basis before.

    • Beverley_01
      Beverley_01 Eddandstufff

      Posted

      Hi there,

      What a scary time you seem to have had it sounds! And Thankyou for sharing your extremely honest reasons regarding the start of this for you.

      Cfs /me can be so hard to accept and the need for "normal" to resume a constant from many posts on here. I know you said youre working out but much less, and am sure you know the warnings but, take It slow. Recovering from this is so much slower than most of us want but lots do recover. Be kind to yourself and don't try to rush it.

      B

    • deirdre01438
      deirdre01438 Eddandstufff

      Posted

      Hi Eddandstuff, wow I'm so glad you are doing better. I just wondered how you are since this last post. I too b liver that I might have the EBV and have all the symptoms you mentioned. Are you back to normal now or does it still linger? Any infor on what helped etc would be great. Thanks

  • illkill19
    illkill19 Elle1234

    Posted

    I recently got sick. A cough hurting lungs wheezing phlegm runny nose. Sore throat and weird raspy voice. . My whole body hurt and I felt tired.. I went to the hospital and was diagnosed with bronchiits. So I took the antibiotics. Now my body hurt and I felt exhausted already to begin with when I was diagnosed with bronchitis but nothing like I felt 5 days into it. I ended up in the e.r with body aches. Headache. Dizzy Ness. Just this feeling of extreme exhaustion. My blood pressure was raised but the nurse said it was normal when youre sick. it felt like my muscles were spasming. They gave me a shot of muscle relaxer and shot of pain medication told me it was viral syndrome and that it wuld go away but If it did not to go back to the hospital. It has not gone so iwill be making an appt tomorrowsad. I been in bed the whole day it even hurts to take a shower it just feels like all my muscles cramp up andspasm and then when they're done they tense up and feel locked/heavyrolleyes..I really hope everyone including myself finds relief. I'm praying for everyone. This truly is herrendous. The Dr put me on 800 mg of ibuprofen and it really isn't doing that much of a good job but it helps alot because today when i tried to see if maybe my body could handle without it. I cramped up so bad and could only curl in a ball in bed. Also i have clammy hands all the time. Its never been a problem till now. I've NEVER had any of these problems till now..it's consuming my life..rolleyes. I'm frustrated.I'm so glad there's this forum because it helps me not feel alone in this.
  • michael90653
    michael90653 Elle1234

    Posted

    Hi elle and everyone who has posted on this topic

    I think its obvious how everyone on here is benefitting from the information being shared.

    I have just got back from a gastroenterology apointment literaly 2 hours ago where i was diagnosed with post viral fatigue syndrome something which i had previously not heard of and after this diagnosis i went straight online as i think most people do to find out what i am dealing with.

    I have been suffering from what appear to be very common symptoms in regards to this condition most prominently the spasms which are mostly around the chest and upper body (which i found the most worrying of all)

    I have also been having the dizzy spells, heavy headaches and low energy levels.

    The viral aspect of this condition in my case was from a bowel/digestive problem i have suffered with for about 3 years now but which seemed to escalate around last august and this is something i never felt like i really recovered from which obviously now makes a lot more sense.

    The reason i was originally referred to gastroenterology was because of the disiness and the digestive/bowel problems known as acid reflux and also because my liver enzyme levels were high i think 175 (normally 25-35 i believe) at the last blood test but im not sure if the latter is related or a seperate issue.

    In the last 2 months or so i have completely improved my diet ive never been a heavy drinker i will often go months without and dont smoke i dont even have fizzy drinks or chocolate. Perhaps my only downfall is i dont exercise at all but that will be changing.

    I am a very poor sleeper which has a big effect on my energy levels and immune system too im 32 years old.

    Reading some peoples posts on here its clear theres some people far worse off than me never the less i would be more than grateful for any advice on tackling this condition i am actually feeling quite positive after finding this post at least i know im not going insane or a hypocondriac anymore!!

    Thanks in adavance for any replies.

    Mick.

    • Elle1234
      Elle1234 michael90653

      Posted

      Hello Michael,

      Nope you are definately not insane or a hypochondriac. So many of us were sent home with the term "post viral fatigue syndrome" with no other real explanation. I hope you are getting better, take it easy. I know some of the symptons are scary but I just say what worse can it do. It can't harm me if all my scans and bloods were clear.

      I still have some symptons but not as crazy as the beginning and you will get there too.

      I liked your correlation with the stomach and post viral. I too have acid reflux for 4 years before the PVS and I wonder if it is related.

      As a matter of interest, did your doctor actually explained PVS to you ? Mine did not just sent me home.

      Elle x

    • Beverley_01
      Beverley_01 Elle1234

      Posted

      Hi Elle and Michael,

      My friend had PVS before cfs/me and like you both also acid reflux and stomach problems. My cfs/me is from a car accident, I don't have acid reflux but have other digestive issues. Maybe PVS has a direct link with acid reflux?

      B

    • illkill19
      illkill19 Beverley_01

      Posted

      I also have acid reflux. . I have a hiatal hernia as well.and sinus problems I'dk if that has anything to do with viral syndrome. I had seen someone say they're husband got it from his sinus problems in this thread. I asked about it if maybe I got it from my sinus problems because of the headaches. I'dk exactly if the headaches are caused because of pvs or my sinus but I asked anyways and the Dr. Looked at me like I was stupid. rolleyes.. They told me that viral syndrome only happens with viral infections..it's obituary clear though that theyes dntt really seem for sure.. Damn guys. sadsad. I hope we all get better. I'm real nervous about everything. I was perfectly fine before any of this happened
    • Beverley_01
      Beverley_01 illkill19

      Posted

      Hi illkill,

      My friend also has the sinus issue and headaches. The problem is that a cfs/me diagnosis can only come 6 mths after symptoms and after blood tests to out rule other things. Are you in the UK? As luvubeaner states, Lyme disease seems to be more of an issue regarding the similarity in symptoms. Lyme disease doesn't seem as prevelent here.

      Regarding the shaking and some of the other horrid symptoms you are having, many do appear with psv/cfs/me. An increase in anxiety is part of that As Elle says, try not to worry. You are doing all you can getting checked by the doctor. Right now rest as much as you can. Rest is really important. Both Body and mind.

      Be good to yourself right now.

      Best wishes

      Beverley

    • illkill19
      illkill19 Beverley_01

      Posted

      Hi Beverly I am not in the u.k. I'm in the u.s. today I've been taking it easy.I am trying my best to be good to myself thankyou so much.
    • michael90653
      michael90653 Elle1234

      Posted

      Hi elle and beverley,

      To be honest ive had the ibs and acid reflux for about 3 years now aswel as some other conditions such as severe sinusitus which all started at roughly the same period so im now wondering if ive had the condition longer than i first thought.

      My gastroentoligist basically said to me ive got a virus that has not been fought off by my weak immune system (weakend by chronic insomnia ive had this since my teens) so i need to exercise and shock my system into fighting it he also said any exercise will be severely tiring but that i must persist and it could take anything upto 18 months in total.

      He made it sound pretty straight forward which im now realising may not be the case.

      Ive already been swimming today and done a few mile walk yesterday and have started on q10 vitamins, d3 and cod liver oil im basically trying to hit in from all angles to like he said shock my system.

      Ive actualy been off work 3 months with my back a muscular strain which is getting a little better of late (i work on a busy production line with some heavy repetitive lifting) which could also be linked to pvfs but its difficult to know where to draw the line between what is pvs and what is simply a seperate condition the lines seem very vague and intertwining.

      There does seem to be a theme emerging from the latest comments between digestive symptoms and pvs tho.

      I must add also to i felt pretty refreshed after the light swimming session today i would deffinately recommend it for stress relief if nothing else.

      I'l keep the thread updated on my vitamin regime im hoping the q10 helps with the horrible spasms more than anything.

    • Beverley_01
      Beverley_01 michael90653

      Posted

      Hi Michael,

      Oh my! Your gastroenterologist seems at odds with the usual advice of resting to give your body time to heal? And pacing? How do you feel about his advice? What Is your gut reaction, if you pardon the expression?

      Beverley

    • Beverley_01
      Beverley_01 illkill19

      Posted

      Hi there again,

      I had replied but its disappeared somehow! Basically, I was saying its good to hear that you're being as good as you can be to yourself and that you're taking it easy. I know it can be really hard

      Best wishes

      Beverley

    • illkill19
      illkill19 Beverley_01

      Posted

      Awwww thankyou so much Beverly. best wishes to you too!!!. I'm planning to start going to local yoga classes. I've never actually been to one but I guess first time for everything.
    • Beverley_01
      Beverley_01 illkill19

      Posted

      Hi again,

      I was doing yoga classes and felt they really helped. Am hoping to start them again, the class unfortunately clashed with other things. Take it slowly and If you start feeling unwell, take some breathing time. It is luckily a very gentle form of exercise and mostly slow. Good luck with It and hope you enjoy it.

      Beverley

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