Relapse

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Hi everyone how are you all??

Thought id post again as i feel abit fed up im now in month 5 had a good couple of weeks..... however over the last 10 days i seem to be getting some symptoms flaring back up so scared that this is all coming back & ill have to start from square 1 sad i think ive recently caught a cold/cough off my son and had maybe flared things back up?? Was just wondering what people thoughts were? I have on/off pain in armpit again which i hadnt had for weeks, sore neck, ear twinges, feels like my throats starying to hurt again, and strange stomach & chest pains that seem to come and go,also strong back pain at the top of my back,  im really fed up now as i thought i had took a turn on to the recovery road i dont think i can actually put up with this all again sad any experience/comments welcome.

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11 Replies

  • Posted

    Also my gland on the left side of my neck has become swollen again sad 
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  • Posted

    Hi poppy.

    it sounds all so familiar.... I remember have good stretches and then it all coming back again, it's so demoralising but this will pass. I'm at 1yr 4 months and pretty back to normal, just occasional out of breath now. 

    I know how fed up you must be, I was and am the same as you. Just want it to go and be gone for good!! 

    Just ride with it as that's all you can do for now. Rest when your body says so. And you will get there.

    caroline xx

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    • Posted

      Thank you for your reply pleased your almost feeling normal again. Its so disheatening when you think your almost back to normal then it all starts again its no good for anyone physically/mentally. The thought if having this for over a year upsets me sad  ive started thinking other than mono as it keeps coming back surely theyre must be someone i can go see about all this outside of my surgery? 
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    • Posted

      I feel the doctors i have been to see havent gave me any reassurance or a proper diagnosis which makes this all worse? They dont seem to know about the symptoms that comes with this.
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    • Posted

      My gp sent me to see an endocrinologist back in December 2017 and he said I would make a full recovery in another 6-12 months, so that would be by end of this year!! 

      Also, when I saw my gp last month she said I had done incredibly well.even though it was well over a year!  She was very understanding and very helpful. It just takes time. I used to think, I can't do this, I can't do that, but I started to think about what I could do instead. Even when I was fatigued and exhausted I'd try and think positive about the things I could do, even if it was just watching telly!

      ....this isn't forever.... Just a blip in your lifetime that you'll look back.

      x

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    • Posted

      Hi,im into month 14 and ive had 4 bad relapses,im in bed with the 4th now,it is the most brutal scary thing ive ever had,a few weeks ago I was feeling a lot more like my old self and bang out of nowhere I got it all over again,it floors me everytime with,fever,dizzines,nausea,aches and pains,headache,no appetite and severe exhaustion,it seems to be coming back on a 3 monthly cycle,i don't get the swollen glands though,read when your older you don't,but feel extremely ill,ive had this relapse a week now and still laid up,takes me all my time to get from bed to bathroom,just so soul destroying as I know its going to take weeks again to even get back on my feet,fortunately I don't have to work as I have an underlying health condition ME/CFS,i don't know how anyone manages to work with this,it worries me that when I feel better again in a couple months that its just gonna come back again as that's the pattern its taken so far and I really cant go through another bout of this as I live alone after hubby died and don't get any help from anywhere 

       

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    • Posted

      Diane, I'm still thinking about you and hoping for you and praying for you. You've suffered so much and I just wish we could understand better why these things happen. I do trust God though that He is a good father and a loving father and wants to see you well again - praying that God can help our faith stand strong through the tough times and that He blesses your situation and strengthens you through the Holy Spirit. 

      Hang in there my friend, thinking about you today.

      Craig

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  • Posted

    Hi Poppy,

    You must be so frustrated, it is really horrible when you feel like you are getting somewhere then something sets you right back the way and makes you feel at the start again. From my own experience of relapse type episodes as I went through the months of the virus, let me reassure you that you are not and cannot be back to the start again, it is normal to have these kind of setbacks which make you feel with the symptoms you are way back to the start, but actually it isn't and I found that these episodes lasted less time as time went on, and after 5 months you won't have to experience another 5 months like that again - it might not be perfect just yet but things will get better, and remember every mini relapse is your body getting on top of another area of the virus so in a way there are positives from it and each time you come back from these episodes you feel a bit stronger I tended to find.

    Thinking of you as I know it's so hard Poppy, just hoping and praying for better days ahead for all of us.

    Craig

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  • Posted

    Poppy,

    You also commented on my original forum post "Month 9 and Losing My Mind." Of course, I wouldn't want anyone else to be going through this, but it is so reassuring to hear from others who are going through a similar experience. Since I posted a few days ago, I have been feeling much better mentally. I was really down at the beginning of the week.

    When I had my 1st relapse at Month 4, I had hoped I had caught Influenza from my son. It's possible I had that too, but the Mono came roaring back. I cried when the doctor told me I would probably be dealing with this for at least a year! A year!

    It is so difficult when you have a family to look after and just can't do it. My poor husband has to work all day and then still come home to work around the house all evening. Really makes me feel useless. I'm trying to remind myself that someday I'll be back to my old self and wishing I had a minute to sit down and do nothing!

    I hope you feel better soon,

    Kristin

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    • Posted

      Hi Kristin,

      I sense so much the weight this virus has put on your shoulders, I really empathise as I have been feeling a weight too with my own back pain recenty and not being able to work and do the things I used to. I keep questioning myself and asking is it me who just isn't getting back to normal or whatever, it's so hard and I really understand this cycle and it takes your confidence away in doing things and is very humbling for sure.

      You definitely are going to get through it and get better again Kris absolutely I believe that. I took me 10 months to feel at the starting line of making proper progress, and then things got much easier after that until full recovery. Hang in there and remember not to beat yourself up, this is not your fault it is a real and horrible illness, and be kind to yourself, take plenty of rest and remember you are going to get through this and be active again with and for your son and family!

      Craig

       

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