Post viral or CFS?

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Hello...it is closing in on 5 months since my initial symptoms now, tinnitus, vertigo and a raft of neuro symptoms. The fatigue part of this started in mid April...so close to 4 months. After a battery of scans, bloods etc they have said this is post viral fatigue. They have found mild low lymphocytes, past CMV infection and oddly a chlamydia infection in my bloods.

About 6 weeks ago I was suddenly able to do a bit more, get out of the house and a few small walks...up to a out 6500 steps each day. This last about 3 weeks...and then crash some 2 weeks ago. Since then I have been up and down, however not close to where I was prior. Questions are...was the improvement a good sign? In the sense that I may well be emerging from my post viral fatigue? Or did I simply push myself too much amd have now done myself harm.

On a final note 2 weeks ago as my neuro was signing me off, saying that it viral as opposed to neurological and finally saying that as bloods did show some issues pointed out above that this might not be CFS as it does not show anything on bloods. Any comments on any of this would be appreciated.

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  • Posted

    Sorry you are going through this. One thing you never mentioned is how did this start? Was there a virus that really knocked you back? If so it’s probably post viral, but keep in mind that post viral and cfs tend to be interchangeable terms for some. The fact you improved over time is good. I did the same and relapsed the same. The key is when you’re feeling good keep doing what got you there. Rest, good food and no alcohol. Some believe if we can feel good long enough our bodies can ease into remission. It’s very hard to do. I get it. Every time I feel good enough to live life I want to do. Hang in there. 
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    • Posted

      Good question about how this started. To be honest for much of the six weeks prior to the initial symptom in mid March I was well, very well in fact with no hint of illness. I did have a decent chest infection at the end of Jan caught from a mate who lives in Beijing. I had a cough that lingered for a spell but otherwise made a full recovery. The docs have pointed to this but Iam not so sure. The initial symptoms of thw first month of my illness was crazy muffled tinnitus coupled with vertigo and then lightheadness. The fatigue element only commenced about 4 weeks in. I often wonder if the initial 4 weeks was the virus???

      So what are you like now? Have you managed to return to what you were like during your partial recovery?

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  • Posted

    Well, mine started with a sever viral event that shut me down for a few weeks. The fever lingered for almost a month and then I never returned to normal. Today I can function. I don’t exercise, have central nervous system issues and feel better some days than others. I appear normal to everyone but I am not. Another item you never mentioned was your age. I do think that plays into things. I’m almost 50 and not trying to climb any mountains. If you’re younger without a family I can understand the desperation. One other thing I will mention that has helped is fasting. Not everyone will agree with me here. I do think all will agree that’s certain foods are triggers and that finding a friendly diet is important. What I’m telling you is water fasting dramatically helps me, but it’s tough and can be dangerous if you have certain medical conditions. The thinking is that digestion is constantly requiring energy and when ur not eating ur body can rest at a whole new level. Anyway, happy to tell you more if interested. 

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    • Posted

      I am almost 57 Joe...so have had so far a decent life.  I realise that I dont fit the classic demographic for CFS....late middle age male. Up to 4 months ago I was super active, so as you will appreciate at present most of all I missing my active independence more than anything.

      I have always eaten pretty well, occasional takeaway food but generally very balanced. All junk food has gone since I became unwell, hardly any sugars, no alcohol...not that I was a heavy drinker.

      At present I am trying to get answers re my medical history. For the past 12 yrs I have experienced intermittent neuro symptoms...I had a bad spell in 2006 together with associated fatigue but not on the scale I have now. I have attempted to ask the doctors what the connections are. They have more or less said I have unexplained neuro symtoms and due to their longevity and intermittentness they have said are a harmless nuisance exacerbated by whatever virus I have had. I am not totally convinced...especially as I dont seem to have been unwell prior to my present illness.

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    • Posted

      Well, hope for the best!! I also had weird intermittent nervous system symptoms over the years. Looking back now I feel it all falls under an improper working immune system. Sometimes underlying infections that don’t cause any day to day issues have your immune system working hard so you can feel normal. I believe over years and years it starts to turn on itself. Best of luck!
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  • Posted

    I understand this sometimes works for people who are recovering and I'm trying to incorporate it for myself too. When you feel good enough to increase walks or activity be very vigilant. Start out by increasing only a small amount. If you continue to feel well for a week or a month or so after then slightly increase again making sure that you have no set backs. If you do have a set back, then that is just your body saying "oops, too much!" and just go back to where you were and wait till you feel like you're at your "baseline.". Make your increase smaller. An increase can be as little as 30 more seconds of walking.

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    • Posted

      Thanks Diana. I have probably learnt my lesson, hopefully. 

      Any comment on the blood test question I posed in my initial post? As I said my neuro has stated that nothing shows in CFS. Is this right?

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  • Posted

    Yeah, that sounds pretty typical, tho my original doctor who diagnosed me was a D.O.  If can find one of those, you MIGHT get a diagnoses. Unfortunately my guy left 3 years ago and I haven't found another one on my Medicaid plan since then.

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