Dealing with a relapse, can anyone relate?
Posted , 5 users are following.
Hello everyone, haven't been the most active on here but read other people's updates almost daily. I started feeling ill last year in August, when we were in the middle of a heat wave and had wildfires polluting our air. I had been pushing really hard with my climbing hobby. I thought I had a flu or something less severe so I kept on with my lifestyle til November when I started to get worse. Thats when I got the positive test for active EBV. I started resting and got gradually better little by little. In May and June of this year, I felt almost back to normal most days except for a few sick feeling moments sprinkled throughout my weeks.. But this July has been a backward turn for me.
Admittedly, I've been active a lot since its dried out here in May and June, getting back outside again. I felt sick on July 4th and since that day its been almost like a tumble backwards, into feeling ways I hadn't felt since maybe February or so. Wake up in the morning dizzy sometimes, get tired doing minor things for me like going up some stairs. Random minor prickles in the throat and lymph nodes. And even had a spell one day in the hot car where I felt my heart rate go up quite a bit for about two minutes and then settle down.
Its a real bummer because I was coming up on what I'd consider a year and feeling like I was right on track to be back to myself cleanly in a year, but this last month has me questioning where I really am with this thing.
I would love to hear about other people's setbacks, how they compared to their initial illness, how long they lasted, and how soon they got better. I was also wondering if people knew what triggered their relapse. For me, I partially attribute it to my activity level going up, but also the heat wave we are having. Its been 90s and up for about three weeks, and it feels really taxing to my body.
Thank you for any replies!
0 likes, 18 replies
youngboy238 MonorailNick
Posted
Sorry to hear you were so close, then had a setback. But remember you will get back on top of it and for you it’s just a setback and I believe you will be better again and remember you’ll get fully healthy again!
I was feeling around 70% in May, and then towards the end of it I started feeling real bad and worse. It has been like that since then and it’s been 2 months since I first got worse, I am really worried it’s more than a setback because it is not improving.
I am worried that it is becoming CFS, or it is CFS. Because it’s just been going on and on and it’s getting worse and worse, and it is not getting back on track to wear I was when I was improving and doing well in May,
It just keeps going on and on and in the first two months of being sick with mono I made SO much more progress than I did in the past two months with this “setback”. The past 2 months I haven’t made progress and it is getting worse.
This is how mine is going and I am worried it will not improve and time will just keep going on and on without good improvements or getting back on track.
I think what triggered mine was that during PE in school I tested myself and did a bit of jogging and some push ups, over the next few days it was worse but I didn’t bounce back and then it went way worse and I am worried I lost all my progress that I had made before this.
I hope yours settles soon nick, mine is really tough and not settling and just goes on and on and is getting worse. Hoping for the best in you nick!
Youngboy
MonorailNick youngboy238
Posted
I hope you turn a corner soon, there are plenty who have come back from worse places that we are at.
youngboy238 MonorailNick
Posted
Yeahh, I think you are doing well And you are close to the end. Keep an eye on it because when you fully do recover you don’t want to overdue things and get set back again, but have hope and I believe in you 100% and I believe you will fully recover!
And yes I know I thought I was ready for it to as I was shooting my basketball outside everyday and I thought a bit of a jog couldn’t hurt, but it changed everything and I lost my progress and everything is going downhill and I don’t know why. It’s getting even worse than it had been and I’m so worried!
Youngboy
Mono_too youngboy238
Posted
MonorailNick youngboy238
Posted
You're gonna be okay, I believe that. If you could get better from it the first time, you can get better again.
youngboy238 Mono_too
Posted
Thanks for the great words, but I’m so worried because now at 6 months I’m feeling worse than I was in the first month and I am not progressing, and I am really worried it’s CFS, I have a feeling that it all just went terrible and is going to keep going terrible and now it’s chronic.
craig07920 youngboy238
Posted
Thinking about you still Young Boy. Remember that any horrible setback / symptom inside a year of this virus definitely is normal and in the vast majority of cases of people who struggle with for many months, they do make a full recovery and don't develop CFS or anything. Every time you think about CFS counter it with the thought that 90%+ of the western world have been infected with EBV virus (one that causes mono) at some point in their lives, and these people are in the main walking about fit and healthy, CFS only usually occurs if people have other underlying health conditions or have complications. I know it's hard not to worry about these things, but just want to reassure you, and I do believe you are going to make a full recovery still! Hang in there!
Craig
youngboy238 craig07920
Posted
Thanks for the encouragement, really needed, it’s so tough to keep hope and I feel like I’m falling off the cliff. So it’s so hard to hang in here when it’s going so unwell and isn’t improving.
I’m still thinking about you though Craig, hang in there. I’m hoping things are going better for you!
craig07920 youngboy238
Posted
Oh I know Young Boy it's so hard, people can tell you to keep hanging on and keep hoping and keep believing, but when you don't see improvement it's so hard to apply these things, even though you desperately want to. Just to offer some encouragement that this kind of phase and emotions during the virus is normal, and that it does pass even though it doesn't feel like it at the time.
Thinking about you and remember just take things easy and try not to think about it all day, give yourself times to rest, set times where you do other things you enjoy where you don't have to think about this time, and times just to relax and breath and tell yourself that this will get better.
Thanks for the best wishes for me too it really means a lot, I'm still up and down a bit with things still got a situation I'm trying to find breakthrough in but hoping and praying God gives us all the breakthrough we need in our own individual circumstances and trials right now.
Craig
Mono_too MonorailNick
Posted
I had s big setback at nine months that lasted about six weeks and after that true recovery started, I would still have down days but each month got better and better, When I get a virus the feeling comes back for a week or so, probably just another virus, but mono always has you looking over your shoulder.
MonorailNick Mono_too
Posted
Hey thanks for the reply. That's nice to know, I hope it bodes the same for me. Did you notice anything that could have contributed to your setback, or did it just seem as random as everything else about this virus?
Mono_too MonorailNick
Posted
Actually just getting back into the normal routine of living, I went with the family for an outing and then to a friends BBQ and then to our summer concerts. i think I was so happy to feel somewhat better I just overdid it. After the first year each month really gets better and better.
MonorailNick Mono_too
Posted
craig07920 MonorailNick
Posted
Hi Nick,
It is good to see a post from you and really relating to your experience of setback, so sorry to hear you've going through this right now. It is so frustrating when all you want to do is be better and active again and setbacks happen. Really want to reassure you that this is often very normal with mono, within the first couple of years I had some setbacks too, after only really started to see real recovery happen from 10 months in.
Don't beat yourself up for doing extra activity, it's only normal when you feel better that you want to get on with things and be active. Thinking about you and really hoping and praying you feel much better soon. My experience was that the setbacks could feel quite severe for a few weeks sometimes but not last nearly as long or as intensely as the initlal period of the virus - God willing you will never have to go through that again, my experience was the Year 2 was so liberating and like a walk in the park compared to Year 1 of this virus - you have weathered that and really hoping things settle and that you can move forward again - you definitely won't lose the progress you've made, this is just a setback and I really hope and believe you will get back on track again soon. Hang in there!
Craig
don86 MonorailNick
Posted
I'm at about 9 and half months and I think I just had a relapse this week. I took a prescription that I think had adverse effects on me. So I thought that was the problem but the prescription is out of my system and I still feel bad. I have been bed ridden for the past week and it happened right when I was going back to work after a nice break. I was doing pretty decent during my break form work and now I got hammered again. God will bring us back to health. Just have faith!
craig07920 don86
Posted
Hi Don,
So sorry to hear you're going through a relapse right now. I really empathise because I remember clearly also about 9 months in having a relapse which caused me to stop working and caused lots of weird joint and muscle aches and pains and bruises. I felt so down at that point because it had been going on so long and felt I just wasn't' getting any better.
However, I do hope what happened next for me can offer some real hope at this time for you - about a month or so after that relapse was a time when something really seemed to change for me, I started to feel stronger and better - don't get me wrong it still took a bit of time to get to 100% but things became more bearable and my body resilience started to return and was able to do more things. I often think that relapse I had was a last push of the virus and a final effort from my body to get on top of this - and I have read so many similar stories on the threads of this forum of relapses around a similar 9-10 month phase followed by good and full recovery.
Thinking about you and definitely trusting God to help you and everyone on the forum - we all need His strength with each one of our individual trials and praying for His mercy and grace and healing touch. Great words from you Don to have faith!! All things are possible to him who believes the Bible tells us!
Craig
don86 craig07920
Posted
I really hope it happens for me the way it happened for you. It's been 2 weeks in this relapse. I am so tired of it. Keep giving the rest of hope, Craig. It really helps the people currently going through it.
craig07920 don86
Posted
Thanks for your kind words Don, it is only too understandable how fed up and down you must be at this stage. Words can't express how in the bad spells it brings you to your knees, I just really hope and pray for your recovery from this setback, I still believe you will get there - thinking of you and hang in there.
Craig