Only recently diagnosed, but now it all makes sense

Posted , 6 users are following.

Hi, i am only just coming to terms with the diagnosis. I also have clinical depression and have done for many years, and am going through a very dark period. I seem to have some sort of virus at the moment too, can anyone tell me if it is normal to become so weak you can barely stand? and if it is normal for a virus to affect me far worse than an average healthy person?..I really am feeling like a useless mess at the moment, any help or advice will be very appreciated 

1 like, 18 replies

18 Replies

  • Posted

    Hi claire

    Yes hun its very normal and i too have had cfs for many uears althoug was in remission for a good 3 yrs until last year i lost my mum then my depression came back severe. I have had a horrendous year more off work than there. I have picked up a flu bug from my teenagers and what lasted 2 days fir them has left me now so ill for almost 2 weeks and now i have stomach flu. The doctir explained that with chronic fatigue your body and immune system is so low that its much harder to shake off viruses like a healthy person

    You are not alone and its very very hard some days. If you need to talk just message me z

  • Posted

    Clairea,

    Sorry you're having such a bad attack, I also have clinical depression and have been diagnosed with ME for about a year, I'm also a psychiatric nurse. This isn't much help but what you're going through is "normal" for your condition. Just please remember it will pass, keep taking any medication you've been prescribed, try and get outside, even if it's a garden to sit in, rest as much as you can but try and do tiny activities. Above all remember this period of pain will pass

    All the best

    Paul

    • Posted

      Thanks Paul, i obviously have a lot to learn about this condition, i'm used to being perpetually exhausted, but this complete weakness and lack of strength is a shock to me. I'm hoping to learn and get some support from this group, it's early days i know but i feel like i've been given a life sentence. The depression itself was bad enough, but with medication i could 'put a brave face on' and at least pretend to enjoy my life., but This is something else... thanks so much for your reply, its very reassuring 

      Claire

    • Posted

      Claire, please try to rest at this point.  You will have a much better chance of improving.  I am much better off than I was towards the beginning when I was perpetually bed ridden
    • Posted

      only just seen this one Dawn, thanks, i'm learning, just folded some washing, and felt terrible...I think they should maybe have told us this kind of thing at the cfs clinic, thank god for you, you've stopped me being terrified.

  • Posted

    Same only just been diagnosed, some days the bones in my lower legs and feet ache so much I can't stand. I too am depressed, depressed that my freedom has been taken away from me and how it effects my family. I have just received a date to start treatment for cfs / me to help me come to terms with all this hope is the only thing that is keeping me going. Good luck don't be so hard on your self

    • Posted

      Thankyou for your words...i too am feeling i have had the rug pulled from under me, and totally understand how you feel about the effect on your family, that is one of my primary concerns too. Have you been referred to Liverpool?..good luck with your sessions and you too don't be too hard on yourself. Claire

  • Posted

    Oh yes, it is normal to be so weak you cannot stand.   I'm sorry it is so hard.  I can only imagine how hard it must be to have clinical depression and then this coming on top of it, because I think that almost anyone who has a serious case of this ha to learn to work really hard to not be depressed.  I'm not depressed now, but it was terrible learning to deal with how it destroyed my life and hurt my family.  And it is very normal to have a hard time recovering from illnesses.

    • Posted

      Thank you Dawn, i'm very relieved to learn that it is normal to be so weak, i actually thought i was dying last night, or going crazy or a bit of both...quite scary, i'm trying to come to terms with it all at the moment and being virtually bed bound has sent me sinking into nad depression. I already feel a little more positive from the lovely responses i've received. Thanks Claire

    • Posted

      Claire, I'm so glad that it helped some.  Just wanted to emphasize, I don't think that you will always, every day of your life be that week.  I don't think that this is how it works for most of us.  It is on a continuum.

    • Posted

      i understand Dawn, thanks. As i said little by little its beginning to make sense, this happened over 12 years ago, i got out of bed to get ready for work, and literally had to crawl to the bathroom. The end result of this was i got admitted to a Phsychiatric unit, where i basically slept and slept, then to a rehabilitation unit, where i struggled as the time schedule there was totally out of kilter with my sleeping pattern. Anyway i can NOW see what the problem was, i just wish i'd had a decent G.P. at the time who would have diagnosed me properly. I changed G.P. recently, and she ran through my history, and hey ho, i'm diagnosed and it all makes sense. I have had better times since (although a bumpy ride), so now i'm learning not to 'Boom and Bust', i'm hoping there are better days to come again. Thank you again Dawn, you've helped me a lot.

  • Posted

    Yes, Clairea. It makes sense that you feel worse, since you also have an active virus. I've had CFS for 25 years and my symptoms have fluctuated throughout the years. I have noticed that a mild cold or flu affects me far worse than someone who is healthy, and that is why I do everything to avoid getting sick. Get plenty of rest and be sure to treat the virus so that you don't end up with a secondary infection. Hope you feel better soon. KPD

    • Posted

      Amen,  I think that this is what we all do-we try so hard to not get sick because we know that we will pay a big price if we do catch something.
    • Posted

      Thank you, thats really good advice, i'll start paying better care to my general health. Do you have any tips i.e. specific vitamins etc that seem to help. I am very grateful for any advise you can give on how to manage this. Claire

  • Posted

    Do you have the insomnia problem part of CFS/ME?  It is very common.

    Do you know if your thyroid results were on the edge?

     

    • Posted

      Oh yes Dawn, i haven't slept a night through in about 20 years. So frustrating when you spend all day wishing you were in bed. I can sleep for short periods during the day, but my best sleep is between 7to 10 a.m.? 

      Regards thyroid, you're right they always say they're borderline. Lol it's taken me an hour with a break to write this. I've just had a cry on the bathroom floor(i very rarely cry), now i'm completely worn out. 

       

    • Posted

      Claire,I know. I know what it is like to not even have the strength to write.  It does still happen to me sometimes.  But those days are rare. I think you are going to be feeling a lot better in a couple of months.  Okay,  so you do know that not being able to sleep is a very common symptom of ME?  I realize that it is a symptom of depression  also.  Of course, not being able to sleep has been shown in studies to cause depression.  Anyway, I have been helped incredibly by 5-HTP. Of course you should make sure that it is safe for you with whatever meds you are on.  There are other natural sleep helps that you may have heard of.

       Later.....Take Care

    • Posted

      Claire,

      How are you doing?  I hope a bit better.  I meant to write back to you sooner about what you said about your thyroid levels always testing as borderline.  Most mainstream doctors won't do anything for you if you test as being just on the low side of having enough thyroid.  I am so fortunate that I have a medical doctor prescribing thyroid for me.  It makes a difference. Prior to that a naturalistic doc noticed that I had low levels of thyroid and put me on a non-prescription thyroid supplement that also helped. Maybe you have already discovered from another source, the significance of Thyroid levels and its relationship to CFS/ME.  Many are helped significantly by Thyroid supplementation, if they have a low level of thyroid.  Important to note, I could be wroing, but I beleive that medically speaking, if you test as having low levels of thyroid this is referred to as testing "high".  

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