What a blessing finding this forum. I was diagnosed end of Feb with reactivated mono and it's been a nightmare since. I'm 41 with a family and it's been horrible for everyone to say the least. I developed anxiety and panic attacks along with this. I feel like a prisoner in my own body. I finally started to feel a bit better this week so decided to run errands I haven't been able to do in months. HUGE mistake, I have been back in bed for 4 straight days now not able to move, out of breath, weak arms and legs again. Is this normal?? I'm scared I'm starting right back where I started. How could I have felt so good and now back here? It's been almost 4 months now. Trying to stay positive but I feel like I'm losing my mind with this.
Hi Meredith,
Goodness you have been through the mill by the sounds of it, really do empathise having been through mono myself many years ago. It took away my confidence and body resilience for a while too, it is an awful virus and many doctors don't seem to understand the full effects it has on someone physically, emotionally and mentally, it's such a draining experience to go through.
Just want to reassure you Meredith that it is normal this kind of zig-zag road in recovery - I had it and I think everyone finds out the hard way - sometimes I would feel a bit better try to do more then feel like I was hit with a tonne of bricks again and back to the beginning. Let me reassure you that you are not back to the beginning, even though it feels that way - these kind of relapse episodes are normal and generally you recovery to a more 'normal' level of the virus much quicker, even though it's horrible when it comes on and that a normal level of the virus in itself is still horrible.
The first 4-5 months are by far the worse Meredith, you won't have to go through anything like that again. Don't panic if it still takes a bit of time for full recovery to come, that can be normal, it did take me 9 months to see a real turning point, but the intensity was lesser as the months went on and I'm not saying it will take you that long because everyone is different and some people recover quicker than others. It's unique in that it affects people very individually often with different symptoms bothering different people, maybe with a common threat of the fatigue and low grade fever and just feeling rubbish generally.
Taking vitamins and herbs really helped me, a good strong multi-vitamin per day, high doses of Vitamin C (1000mg-3000mg per day), B complex (for energy levels and nervous system) and immune boosting herbs like siberian ginseng, echinicea and oregano.
Thinking about you and please please remember that you WILL get through this and back to FULL health again - take it from me as someone who thought they never would and felt like I was losing my mind during it too.
Hang in there and thinking of you - and remember God heals!
Craig
Hi Meredith,
snap..... I'm a 41 year old mum of three boys and I was diagnosed in dec2016!! It's been a long haul of ups and downs, good days and bad. But finally I'm near normal again, I'd say 95ish%
i had weak arms and was breathless with awful exhaustion. I would say I only get slight breathless now on a bad day feeling a bit tired. But I'm able to do school runs, shopping, dog walks etc. Last year was a different matter. The worst year of my life, so I completely understand how you must feel. I had many a day crying too!!!
things do get slowly better over time, I find the set backs are the worse as you feel back to square one and that you'll be like this forever, I still sometimes think that now but I know I won't. I do make my mum and husband tell me I'll get better all the time!
this forum helps a lot. You're not on your own and things do get better, just try and rest but do little things when you feel better again and not do too much. Harder said than done with family and a home. I'm guilty of overdoing it. But just look after yourself.
caroline xx (u.k)
Hi Meredith,
I'm starting month 9 of reactivated Mono and currently having my second relapse. The first one happened at about month 4 for me as well. I had started to feel better and attempted to resume my old life. I had hoped on the first setback that I had just caught my son's Influenza. Maybe I did, but the Mono also came right back. I cried when the doctor told me it was the Mono still causing problems and it would probably take a year total before I was considerably better. I just couldn't believe it was all starting over again.
I think my current setback is also because I started to do too much. It just feels so darn good to get out of the house and actually be out in the world. Who would have thought grocery shopping would feel like such a treat? Anyway, about a week ago, I relapsed and I spent about four days in bed and then pushed myself on day 5 to attend a function at my son's school for an hour. Once I got home, I was wiped out for the rest of the day. This horrible virus is miserable.
When I started feeling bad last week, I came here for some comfort and reassurance. It has definitely helped! I no longer feel so alone and like I am crazy for still feeling this way after so long. I, too, commented in my first post that I felt like I was losing my mind. From what I can tell, setbacks like this are pretty common, but tend not to be as bad as the beginning and people recover quicker. Not as fast as we would like, of course, but quicker than the first time.
I hope you are starting to recover from the worst of this setback.
Blessings,
Kristin
Craig thank you so much for the heartfelt response, you have no idea how much this helps. I will take your advice! I'm so glad you are better. I can't wait to say the same
Just curious if you were very nauseous? I've been struggling to eat as I'm so nauseous most of the time.
Thank you again for the kind words and advice.
You are so right, it's so hard to stay in the house when you start to feel better. I thought I was cured and thought I could jump right back in. Not the case unfortunately. Day 5 I've been back in bed but going to try and get up more today. I'm so incredibly nauseous. Do you experience that as well?
Thank you so much for the message. This forum has been such a bright spot in the darkest of days. I need constant reassurance that this will not be forever as it's hard to stay positive.
Thanks Meredith, oh just really want you to feel better as I know how horrible an experience from start to finiish it is. It's hard to remember exactly as it was over 10 years ago now for me, I may have had some nausea if I remember rightly, I have read many folk on here note that as a symptom so I definitely think that can be the case - I know certainly I didn't feel well within myself without really being able to pinpoint it a lot of the time. So sorry you're having trouble eating because of that, if you take some of the vitamins and herbs still even then that might help. Peppermint they say is good for the stomach and oregano is good against viruses and infectons.
Thinking of you and remember you are going to make it!
Craig
Definitely won't be forever Meredith, this doesn't last forever even though it feels like it when going through it!! You are going to get better
Craig
No, no nausea for me or problems with appetite. I didn't even know there could be so many weird symptoms with this until I got on this forum. I've realized how lucky I've been that I haven't had anything too drastic to deal with. Although, once I started reading on here, I realized that some of the things I've been experiencing (such as a ringing or whirring sound in my head, the brain fog, t.v feeling at times like too much stimulation, etc.) was probably due to the Mono.
After the 1st relapse, the doctor told me to remain inactive for at least 3 weeks after I started to feel better. Before this 2nd relapse, I had been telling my husband for about a week, "I think I'm doing too much. I should probably slow down." Did I listen to my body? Nope. Hence, my 2nd relapse. Argh!! I will not make that mistake again!
You're right, It is so hard to stay positive. That is why I ended up in this forum. I was feeling so defeated last week and reading comments and posting here really turned my attitude around. It was such a relief to hear that I wasn't alone in this.
Please be kind to yourself and don't overdo it!
I haven't had much either compared to some I've read, and yes, count myself lucky. But I do get the ringing and brain fog. And yes on too much stimulation. This week since I've relapsed I haven't been able to open the blinds or have the TV on, although I feel like I may be coming out of it a bit. I will take your Dr advice and not do anything for three weeks once I'm feeling better.
This forum has definitely turned my outlook around. I just keep re-reading the comments and success stories when the anxiety about everything creeps back in.
Are you up and around and feeling better after your 2nd relapse? I hope so!!
I've learned so much about how debilitating the virus can be from being on the forum too, even beyond my own experience. There definitely is hope and is recovery out there for you Kris and you Meredith - absolutely there is and remember so many people get this virus and have a rough rough time with it for months and months often but then fully get over it and back to full health again - that outcome of full health again is going to be the same for you guys I truly truly believe that. Thinking of you today and just cope with each day as it comes is the only thing to do and don't look too far ahead - it's okay to accept today might not be great, but remember that this won't last forever and will pass over with time (it's hard to wait I know).
Craig
Hi Meredith. I have only been dealing with this for 6 weeks but I can totally relate. I started feeling somewhat better the last few days thinking I was finally coming to the end of this. Did some house cleaning and ran some errands and the middle of the day yesterday everything came crashing back. I don't know if it was something I did or if this is the normal way of things. Two steps forward and two steps back. I too feel like I am losing my mind 
Wendi I feel the same. I went to a different Dr. yesterday for second opinion on this and she said this is just how it is. Up and down. Key is to not over do it and gradually get back into it. She told me to give myself another couple of days (it's been 7 now since relapse) and then to only do 15 minutes of something and rest. Then when that is comfortable do something 15 minutes 2x daily to test the waters and so on.
Hang in there.
Oh it definitely is normal Wendi, and you will get there to the stage where you can do things and your body resilience returns and it doesn't feel exhausted or drained again after it - don't panic if it takes a bit longer, that can be normal but remember you definitely will get there and you will get through this - there is hope and recovery from this horrible virus!
Craig
I hope so. Today is a bad day. I have barely been able to eat and having a hard time even drinking water. My weight is down.....my chest hurts some and I am having gas. Heart palpitations. It is hard to stay optimistic when you feel like you are dying.
Wendi as my family keeps reassuring me, although I agree it feels like it, you aren't dying. And like Craig says remember it's the virus talking.
I too have tight chest and heart palpitations. I actually spoke to my Dr today about it and she assured me it's from the anxiety.
Hey Meredith. I know exactly how you feel. I'm am 70 and have had bouts with mono since 2005. Last year I was down & out for 8 months. This time I've had symptoms for over a month. This past Sunday was Mother's Day. I woke up at 5 a.m. and couldn't stop crying out of frustration from having another day of feeling horrible. I turned to the web to try and find out if some new miracle cure had been discovered. Nope, not yet. But I did find out something I was not aware of. Did you know that mononucleosis can be brought on by stress? I have been diagnosed with the Epstein Barr virus and as I look back, when I've been stressed out, that's when I get sick. I had stomach surgery in March and for over a month, I couldn't swallow my regular vitamins. Then, I discovered chewable and liquid vitamins, but unfortunately, it was too late. The mononucleosis had already kicked in and here I am. I'm so glad I found this group. Here's hoping we all get better and get our lives back soon!
Goodness I am so sorry Susan!! I was crying all day on Mother's Day right along with you because I couldn't get out of bed. I hate that we are all going through this, but it sure is nice to know we're not alone.
Yes on the stress!! That is exactly how my Dr said this started for me. I was in grad school, trying to sell our house, a new puppy and a family to take care of. I was so far off the rails I didn't even realize it.
This forum is amazing and I can't be thankful enough for it. We will beat this awful awful virus!
Take care Susan
Oh Susan,
I really empathise with how you have been feeling, having went through mono in the past and been going through a tough time for back pain and prostatitis myself recently. It's so frightening and depressing when you can't see light at the end of the tunnel and can't see any hope. But I really really want to reassure you that there is hope still, I'm just so sorry you've had these terrible bouts for so many years. I really hope, pray and believe that God will heal you still Susan, He knows what's going on and it's hard to comprehend when something has been going on for so long I know, but I just hope this terrible episode settles down for you and you can feel more lifted and able to live with freedom again. Definitely there is a link between stress and the virus I think, it happened to me just after a stressful time, and it's so hard because it causes stress in itself and becomes a horrible cycle.
But still believing that you ARE going to get better Susan, even if it doesn't feel like it right now and it's hard to see or believe it yourself, sometimes it can help when someone else believes it for you, so let me tell you that I BELIEVE IT FOR YOU 100% that you are going to get better and back to good health again.
Thinking about you and hoping for a better day today.
Craig
Hey Wendi / Meredith,
Most definitely want to reassure you today that there is hope, and these horrible symptoms will pass over - not much help I know when experiencing it and having to live through it, but remember this won't last forever and you will get through this, hoping these awful palapations and tightness of chest ease off, I remember having pain in that mid-chest area from gland pain, I know that's a different kind of pain to stress and tightness but certainly might all be contributing, but remember that pain does go away and settle down with time. Thinking of you guys and still believing you are going to get better, truly I believe that - don't panic if it doesn't come right away (hope it does!), because recovery will come and your body will be strong enough to cope again - that is my experience having thought at one stage it never would be, but God brought healing which I was and am so grateful for.
Craig