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Opinions on if this sounds normal for post viral fatigue

Posted , 7 users are following.

daggers46390
daggers46390

So a bit of background- im 30 years old with two young children and this year I have got married and moved house twice. Felt happy all through this time and not particularly stressed but now I'm wondering if maybe I was and just didn't realise it.

Ive always been an exercise freak and rarely sit still- would go to the gym 7 times a week and also this year completed the great north run in sept- this is where my problems seem to have started.

During the last few weeks of training I felt very tired with aches and pains where lymph nodes would be- groin and under arms (nothing enlarged though). I put this down to doing too much and just carried in with training and doing the race and completed it in 2 hours. Thought afew weeks after Id start to feel back to normal but if anything tiredness got worse and I spent all sept and October falling asleep and feeling sick, generally fluish etc. Aches and pains started in muscles and joints, headaches, eye pain. Backwards and forwards to the docs during this time and at first they said I was run down/ depressed. Had every blood test known to man done, glandular fever, Lyme disease, cbc, ana etc. All normal. After getting no where with my gp and breaking down crying everytime I went I asked to be referred to someone privately through my husbands private medical cover. At the end of oct/start of nov I saw a haematologist who said all my blood work was fine and he ordered ct scans with contrast of my neck, chest, abdomen and pelvis and all was normal. He suggested I may be suffering with post viral fatigue! It was the first Id heard of it. Ive been back to my gp last week and he says he would be inclined to agree with this diagnosis.

For the last 4 weeks however I have been feeling a lot better. I did take 3 weeks off work throughout the end oct/nov so maybe that's helped . I Still probably feel more tired than I normally would but I am able to do some light exercise,. Some short jogs and light gym work. I don't however feel that I get the post exertion malaise that everyone talks about- I feel tired after but not to the extend that others seem to. However/ I would says that a month or so ago i certainly did have this post exertional malaise- gp just seems to think that ive been lucky and hopefully ive got away lightly with it.

I feel like my body aches and pains have mostly gone and all im suffering with now is occasional eye pain in both eyes (eye test hasn't shown any problems except slight dry eye- optical nerve all fine etc). I also have neck pain, occasional shoulder pain and a pretty much constant dull ache at the back of my head with occasional shooting pains behind my ears and at the base of my skull/hairline. Does anyone else suffer with this? To be honest the pain doesn't stop me doing anything and isn't strong enough to need pain killers. GP doesn't seem concerned by it and just says he will see me again in jan to see how im doing.

The last month ive been juicing lots of fruit and veg, taking evening primrose oil, cod liver oil, magnesium and a multi Vit with iron plus lots of vit c. Lots of water etc and healthy meals. I'm guessing it's just a waiting game but I wanted to know if my experience sounded similar to anyone else's. I don't remember a virus but the gp suggested that the initial tiredness and pains I had when training was the virus or that maybe I just got myself too run down x

0 likes, 11 replies

11 Replies

  • Beverley_01
    Beverley_01 daggers46390

    Posted

    Hi Danielle,

    I have cfs/me and not post viral and would say that symptoms are similar/same? My friend had the post viral type which has carried on into cfs/me. If you're feeling a bit better, don't rush back into doing things. Seriously, take it easy and give yourself time . Believe me, I know how hard that is in practice. I used to do alot of walking and cannot do that presently. I remain optimistic that I will again but, for now, I need to rest alot. In the beginning I tried to maintain my exercise and was just exhausting myself further. Maybe as your doctor stated, you got away with it lightly and if so that's great but, be gentle with yourself right now.

    Hope that helps

    B

  • mike76241
    mike76241 daggers46390

    Posted

    I meet these exercise freaks (including my own kids)

    and try and explain the risks of, marathons, triathlon events, etc

    in pushing yourself to hard leaving your imune system vunerable to

    me/cfs and once these symptoms take hold, the importance of rest

    a complete change of lifestyle to limit the damage, as there is no such

    thing as a complete recovery

    HIV is treatable, cfs is not,

  • pam_87693
    pam_87693 daggers46390

    Posted

    High Danielle your doing all the right things with eating healthily and light exercise. With 2 young children and a husband you have probably been overdoing this in view of the 2 moves too! However with the dry eyes, you do need to see your GP again, as he will be able to advise you on that. I am assuming your optician has checked your eyes carefully. Did he put thin strips of paper into your eyes? This is called a Schirmer Test, he also needs to check your tear breakup time. If the Schirmer is >5mm in 5 mins you certainly need to seek help from your GP. Do you have similar problems elsewhere? Is your mouth dry, have you had many tooth fillings? Is your vagina dry? Is your nose dry? If your negative to all tha above questions other than your eyes I would suggest you but some Hylofotrte drops from Boots and see how you get on with them. 
    • daggers46390
      daggers46390 pam_87693

      Posted

      Eye test was all fine and was quite a thorough one where they took a picture of my optic nerve and all was fine. They did the thing with the dye in the eye to see if there was any dryness. No dryness anywhere else. I googled dry eyes after the eye test and it brought up Srojens but I don't have anything else that will fit that thankfully. Optician gave me some over the counter eye drops so will just plod on with using those. I am feeling so much better than I was a month ago so I feel lucky at the moment to have only had two months of feeling like hell but im certainly going to listen to the advice on here and won't be pushing myself back to my life before in terms of exercise for a while. Will just keep up with some light activity. It's just very hard when I'm someone who could do so much before. Also putting weight on with it now too as im eating for energy and even though im eating mostly good things im probably eating larger quantities than before! X
    • pam_87693
      pam_87693 daggers46390

      Posted

      Yes I know only too well the weight battle. I'm glad that you had such a good check up and have eye drops. 
    • Beverley_01
      Beverley_01 daggers46390

      Posted

      Hi Danielle,

      It is hard to have something like this when you've been so active before. I was gearing myself up to the 3 peaks before being Involved in a car accident that left me with cfs/me. Alot of people on here were also very active before this and thus find it extremely difficult to adjust to this 'walking through treacle'

      Glad to hear you're taking it easy to get back Into things and eating as best you can will hopefully also help. Good luck with things.

      B

  • jackie00198
    jackie00198 daggers46390

    Posted

    Your description of your experience does sound like ME/CFS to me. My doctor, an infectious disease specialist, feels the virus is already in the body, and can be activitated when the body gets run down. Stress can exacerbate the illness, but in itself doesn't cause the illness, in my opinion. So you may have dodged a terrible bullet, as it seems you're getting better. One word of caution: you should probably take it real easy for a while and lay off most of your exercise. If you did indeed have ME/CFS, it can come back with a vengeance if you push yourself too hard. I remember thinking, "I'll just take short hikes and increase them a bit every few days, so I can improve my stamina." Bad decision. I got a severe relapse and never got much better.  So please be careful.
    • daggers46390
      daggers46390 jackie00198

      Posted

      Thank you for your reply. It's so hard to know what to do with exercise. So many different things online some saying rest completely and others saying start to build back up. I think il certainly rest pretty much completely for a while longer except for maybe a short walk a day until I feel im out of the woods. It's just this silly pain at the back of my head/neck and behind my ears that's bothering me now. If that would go away I think I'd feel near enough normal and just Abit more tired than usual! Does this kind of pain sound normal with pvf? This forum is so helpful though and I appreciate everyone's comments. Nice to know im not alone- to be honest im still having a hard time accepting this as a diagnosis as it's hard isn't it when there no test that 100% says it's that- it's hard to think they aren't still missing something- but with the exception of a head scan ive had pretty much everything done and checked that can be. If this head ache is still there after xmas I think il push for a head scan just to further put my mind at rest and rule anything else out x
  • needalittletlc
    needalittletlc daggers46390

    Posted

    I too have the head/neck pain. Right at the base of my skull. I used to have it constantly and now occasionally.

    I hope this doesn't become lengthy but...

    I have been ill for at least 10 years, only getting diagnosed with me/cfs 2 years ago after fighting my way through the medical system (I'm in Canada) to finally get some answers. Because we sort of have to rely on ourselves for treatment I began to research different methods. One is pacing and the other is graded exercise therapy. I really immersed myself in pacing and started micromanaging every part of my day. I would get my kids off to school and then rest. Do the dishes and then rest. I never did anything until I had tired from it. If I allowed that to happen I would end up in bed for at least the rest of the day if not 2 or 3.

    As I started getting a handle on that I started to add in exercise. I would walk around my kitchen table for 5 minutes. The next day I would do10, 15 and so on. Again I never went to the point of feeling tired. At one point I had made it to 22 minutes and then decided I felt so good I would jump to 28 minutes. That was 2 years ago and I have never gotten back to that state. It sounds dramatic but unfortunately true. So I find myself in this cycle of 1 step forward 2 steps back all the time and my "normal" keeps changing for the worse. I am now mostly house bound and can't drive or go anywhere independently.

    My sister has also been recently diagnosed as well. Where I had gradually been getting sicker for many years, she went from a type A personality, busy, active workaholic to very sick after being in a skiing accident and having surgery. She has gradually gotten better and has been able to be much more active than me. However, she is now finding herself in the 1 step forward 2 steps back cycle because she is doing too much. With this disease you can't simply "listen to your body" which is hard for someone who is used to pushing through. Because she is newly diagnosed and newly ill she has this window of opportunity to turn this around. Not to cure it but to have a better prognosis.

    In our society we are taught to push the limits. We live by the expectations of others and maybe worry about the perceptions we're giving off to the world. My sister and I have both learned to tell those around us "I may look fine and you may see me doing normal things but I am going to be laying low today so perhaps I can enjoy time with my children tomorrow". I worry for my sister because I don't want her to be where I am.

    We both see this wonderful specialist who told her she needs to take a 3-4 week retreat away from everyone and everything. She has children and a life so this isn't practical so she is trying to find a way to emulate that at home. No easy task!

    I hope that is a little helpful! Bottom line, you have to listen to what your body is going to tell you tomorrow and have faith that that is going to come true if you don't rest TODAY.smile

    Take care

    Tracey

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