What is wrong with me? Post viral, Autoimmune hep, fibro etc etc??

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Hi everyone. I have written this as I feel you guys are the only people who truly know how I feel. I have been ill for nearly 7 months, and still have no real answers. It all started when I had bacterial pneumonia in May and I was quite ill and in hospital for 4 days. Afterwards I was exhausted for a couple of weeks. Then the dreaded symptoms started. Internal tremors, muscle twitches, couldn't gain weight (lost 2 stone), sinus pressure, fatigue, shooting pains in arms and legs, achey arms and legs, pins and needles, weird vision, anxiety, aching sore neck and shoulders. I have had lots of blood work done. My kidney function has been a bit low since the pneumonia, I had a weak positive Rheumatoid Factor, and I have recently had a positive result for smooth muscle antibodies but my Dr said he isn't worried as my liver function is fine. My Dr is very good and sympathetic and says he wants to carry on seeing me. I'm due to see him next week. I felt like I was getting better a few weeks ago but this week I feel rubbish again. The aches in my arms back legs and neck being the worst symptoms. Had thyroid tests which were all fine. I also have 2 bulging discs in lower back, ddd, and narrowing of the spinal canal. I wonder how much of all this is down to my back. Sorry for the long essay but I'm so frustrated and sick of feeling like this. I know many of you are going through similar things. Can anyone please help? Thankyou, Faye xx

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  • Posted

    Dr is saying post viral/cfs at the moment but not a definate diagnosis. He said when I next see him we will discuss fibromyalgia if I'm still in pain. Which I am! But concerned about the smooth muscle antibodies positive result even though Dr said he's not worried! Thanks, Faye xx
  • Posted

    • Posted

      Faye often Fatigue is the first symptom to all illness what ever you have, I am not trying to frighten you, it just this. If you know what your parents had, of if they are still alive ask them! They made you! So think of a tornado. It starts small as as the rings wind round those are the yours of your life. Then first think when did I rember things, was I happy, did I like school, did I catch any thing was I loved or bullied, did as a teenager smoke or drink alcohol, was I good, did I do something I regret, exams, dates, was I rejected was I loved, marriage, births, deaths etc. All things whether they were happy or sad create stress! Stress seems to,be related to many things. Then if you have pain, how long? Once it's really gone on for 3 months, men may leave it later, that is why and when you ask your GP to do your bloods. 
  • Posted

    Hi Faye,

    Have you seen the doctor yet? You said in yr post you were seeing them next week so was wondering if you have, what did they say re the fibro? I'm guessing like most of us on here you were fit and healthy before all this and finding the adjustment to having to do very little difficult. As well as this it seems that you have the added 'bonus' of the smooth muscle antibodies which seems really scary to you. I know, as you say, yr doctor isn't worried about it but, that doesn't mean the mind doesn't worry. If you haven't seen yr doctor yet, ask him what help you can get for this part of yr diagnosis as well as any other help for the other parts such as a referral to the nearest cfs/me clinic.

    I'm sorry you are suffering like this. It is so hard having post viral/cfs with its many symptoms, some of which can be quite distressing. The pain can be awful and having to 'ride it out' is frustrating. Are there things that help? Such as a hot water bottle, a soak in the bath or cold compress? The symptoms we all have are unique to ourselves so although I share the pain, tremors, vision issues etc, I didn't loose any weight but put it on through inactivity. I too have back issues which was the start of my cfs journey through sustaining a fractured spine. The exhaustion set in the next day and of course the pain of the injury masked other symptoms. I'm not sure if having back issues hinders recovery from cfs/me or if its a precursor ? No idea if any research has been done.

    I know how horrible it can feel with this condition so my advice is make sure you have things around you that you like and make sure you treat yourself more. If that's a bunch of flowers or something you like to read etc, make sure you're keeping this part of the process kind and gentle for yourself. Maybe keep a diary of the highs and lows of all this. I'm not sure if you have family or friends near you but, accept any physical help you can. It took me ages to do this but, it helps put less pressure on the system.

    I hope this helps



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