Hi everyone, I am in need of some advice or more reassurance really that this is normal! I turned the corner and began to feel a bit better 6 weeks ago at 5 months in, but since then I’ve been having one week where a lot of the symptoms either completely disappear or get significantly better, and i sleep better etc.. and im not suffering horrific anxiety and impending sense of doom. Only for the next week, for them all to come raging back and feeling like i’m right back at square one! how can I have two weeks where I feel on the road to recovery and then right back to square one?? I just don’t seem to be able to go forward and stay there!! plus I’ve even had some symptoms from the early days which had gone months ago get thrown back into the mix! every time this happens it is just devastating and I begin to doubt my recovery and spiral back into deep depression thinking that I’ll be stuck in this cycle forever and that I simply cannot live like this! Is it normal to feel like you are recovering and then relapsing over and over and still actually recover fully, because right now after another horrific night of panic attacks, night sweats and skin crawling, I’m absolutely defeated and could really use some words of wisdom from those further on in this horrific journey! I’m at 6 terrible months now and so desperately waiting for a big breakthrough that does not go backwards, will it happen??
Hi Martine, I also have suffered from really strong anxiety since getting mono recently - before I was able to manage it properly and rationalise it. As in we all have issues but they are not overwhelming as they have become being sick. I really think being sick for so long feeds into mental symptoms and vice versa. Have you tried seeing a therapist? For the first time, I'm actually considering going to one myself.
Hi Kein,
I think it's a two part issue, I think it's partly PTSD from being so ill for so long, and partly that the anxiety is actually a symptom of the illness, its not just simple worry anxiety, it is more than that, it's like when you freak out from weed or something, like my brain chemicals are going haywire because when these episodes of doom are happening I feel completely not myself and like my brain has gone all weird! it's terrible and absolutely debilitating, but it really feels like more of a physical neurological symptom, rather than just simple worry anxiety. Plus when I get this all the other symptoms are also raging and I'm generally extremely unwell. Sometimes I can go a few days to a week and it all completely subsides, only to continually come back again. it's forward and back all of the time, but I'm struggling to see that there is actually an upwards trend, it just feels like a vicious never ending cycle at the moment. I just wish it would go forward and stay there!! How long have you been sick now??
Hi Martine,
This is just like my first time around, I had a relapse at nine months that lasted on and off for six weeks and then full recovery. I think that I tried to do a little to much, its a delicate balance. I also think that possibly the virus tries to come back and the bad days are just the immune system fighting it off, you will recover its just the up and down of it all. the first year is always the worst for this up and down pattern.
I'm on 7 weeks of this fun - have some good days and bad days. Honestly trying to take it slow and increase activity levels (I went clubbing last weekend lol and trying to resume normal activities.) Alcohol really does not help with tiredness though. It does seem like I am getting better but at a snails pace - the virus is lingering that's for sure. In terms of anxiety I had a really bad week 2 weeks ago so that made me reflect on why I was feeling this way. I figured out that being sick for so long made me very anxious. I am not sure if its just because I felt so demoralized that I was still unwell ut mentally I have been doing MUCH better now that I realized that the two issues feed into each other. It is very really odd and annoying how mono lingers and comes back and forth. How old are you? I'm 28 and it tends to be worst the older you are.
Hi Mono,
Gosh, what would we all do without you, you always come to the rescue when I'm losing it, you must think I'm such a drama queen, but i'm just really struggling over here!!
So glad we have you with all of your experience with this illness, I'm only sorry that you are going through it for your 3rd time, you truly are a trooper, I don't know how you have endured it because I'm spent!!
Its just so hard to understand how you can have such good days followed by such bad ones. I've had days and days in a row where I've felt almost normal and slept well etc..only to have that followed with such hideous days that can then last two weeks, and the cycle repeats!
Do you ever find that you get old symptoms popping up that you got rid of months ago? For example in the first 3 months I would get terrible blood blisters all inside my mouth on and off. They looked very dramatic and were very scary and even my doctor was worried about it, but it stopped happening months ago and now it has come back during this latest relapse. They aren't as bad (they are only on the inside of lips rather than inside whole mouth) This is just one example, there are so many symptoms that come and go and then come back again! I haven't had night sweats in 2 months but then last night boom, drenching night sweats. It is so difficult to get rid of a symptom only for it to come back months later, I just feel so defeated, like it just isn't going to get better.
Oh and I wanted to ask you about your experience with the anxiety, what was yours like? did you feel like it was an actual physical/neurological symptom of the mono, or just a result of the depression that goes with all of the horrible symptoms?? Mine really feels like a symptom rather than about worry/depression. It is such a profound sense of doom and terror and it happens so randomly when I'm not even worried about anything and it happens all day long, it's debilitating I hope that makes sense?!
I guess I'm now worried that the damage (whatever that may be) is permanent and I'll end up with ME/CFS and my life will be intolerable for years to come. I'm already feeling like my identity is becoming this illness, like a shadow that never leaves me.
Hi Kein,
I'm 36 and I feel like ive been sick forever!! its actually 6.5 months, but feels like a lifetime! I feel like my identity is beginning to becomes entwined with this illness, like that is now all that I am, just a really sick person.
To be honest it sounds like you have done pretty well! 7 weeks and able to even consider clubbing is fantastic! at 7 weeks I was having myoclonic jerks, I was unable to walk, I was having episodes of complete disassociation, feeling like my whole nervous system was vibrating, like being strapped to an electric chair for up to 15 hrs a day and was very close to being sectioned as I was suicidal. I was unable to care for my baby at all and had to move back in with my mum for around the clock care. I've come a long way since then, but feel like I'm now stuck in a rut and not improving any further, like the initial damage was just too great to ever be able to recover.
Honestly if you are still able to do relatively normal stuff, you will definitely recover! it may linger annoyingly for a while, but you will be ok! Don't drink, get plenty of rest! I know it doesn't feel like it, but it sounds like you are one of the lucky ones!!
Hi Martine,
This is the way recovery goes, it happened to me both times. I think its the immune system fighting off remaining virus so try to rest through the bad days and know that recovery is coming and there may be a few months of ups and downs.
Hi Martine,
Yes, the depression and anxiety go hand in hand and are definitely a symptom. be encouraged by the windows of good that you have experienced.
Hi Mono,
did you ever feel like you just can't imagine it ever really going away? I feel like I've had this thing for so long which has completely taken over my life in every way and now I just can't imagine it not being there! I can't imagine normal. I think about my life before this illness and think how much I took things for granted and that I was healthy without this and now I feel like I'm just a sick person who spends every day just trying to make it through to the next and hoping that I get a break soon and have a good day. Our whole lives revolve around my sickness and what kind of day it's been. We can't plan anything ahead, we just have to see how I am on the day. Did you ever lose hope and think that it just wouldn't go and that you would stay sick forever?? it's a whole mental and physical battle everyday, if it were just like a normal cold or flu then it would be tough, but it's not like anything I've ever experienced, I didn't even know the body could produce such things!
Hi Martine,
You have described perfectly everything I felt the first time around. I felt that way these last times too, but I knew it would get better eventually and it has. Still have some up and down days but more good than bad.
Read only recover stories when you feel most down, sign up for online streaming service and try to watch something you are interested in, it helps to distract the brain, which seems to like to work overtime during this illness.
You are going into the recovery phase and this will take a while, but you are on your way.
Thank you for your reassurance Mono, it really is a huge help!! I don't know what I would have done without this forum these last months. I try to read only the recovery stories and believe that despite the severity and longevity of this illness, that it is possible to recover, but it's such a mental battle and I doubt my recovery so much on the bad days, especially when the bad days last two weeks straight before letting up. This forward and back process is so grinding!!
Hi Martine, you say that but yet again today and yesterday I'm sick as a dog. Here we go again... so over this for real.
What are your symptoms at the moment Kein??
it's such a brutal struggle, I'd love to be able to offer you words of wisdom and reassurance, but i'm at 6.5 months and still in a bad way!! Mono has been a massive help on here and others too, reading recovery stories on this forum after such a long time being sick has given me the strength to go on when I didn't have anything left. I really don't understand an illness that starts to get better and then comes back over and over. it really really messes with your head and everything you understand that an illness does. Plus the way it affects your brain and nervous system is just horrific. I don't feel like I'm living, just existing. it's like living in a war zone!!
Just extremely tired, sore throat that's gotten worst, and a general feeling of malaise. Like a low-grade fever. This always happens after a 3-4 days of feeling well. Just hope it will go away eventually. I'm thinking of going to get a blood test today or tomorrow to see the viral load in my blood and assess what's going on. Ugh!
omg martine you are taking the same words out my mouth what i'm going through, exactly the same, i remember we last messaged and you said that you are feeling better and i was so glad for you, i've experienced the same things what you describing, really feeling like my old self and was really looking ahead, and then bam, same symptoms like in the beginning and horrific anxiety, right now i'm into deep anxiety, depression, the top of the head burning sensation again, and i'm also lost for words, this can't be real, i will also read what others are posting regarding this crazy spiral, message me if you want
mono, yes you are saying the right thing, brain is working in overtime, i know that for sure, i'm watching tennis on tv as distraction, that's the only thing i can take, you always have encouraging words for us who are still on the hard road to recovery
Hi Saba and Martine,
Thank you for the kind words. Its a long process for sure, I wish doctors knew more about it so they could prepare people for the long mental and physical process. I have read that long covid can last up to 18 months and wonder if these people may have mono triggered by long covid which is what happened to me or maybe its just the way the immune system reacts to certain viruses. I find it helps to think of my bad days as my immune system fighting for me.
Hi Saba,
I just don't understand this illness, how can it Start to feel like it's getting better and then fall right back again. I had two good weeks, not like fully recovered, but a lot better, then back to sick again for two weeks and then another good week, the best yet! and now back again and I'm nearly two weeks into another relapse. The anxiety is horrendous and weak legs, pain in my neck and internal vibrations and just waves of doom where my brain seems to be sending out messages of panic. All of the symptoms just came rushing back and even had some night sweats again which I haven't had in 2 months, so that was very disappointing. It just feels like it will never be over! How is your sleep now Saba?? mine is still pretty bad and i still have to take gabapentin every night to get any decent sleep. I still can only sleep in the day if medicated. You are at almost 7 months too now aren't you Saba??
martine, yes for me also 7 months, and I'm like you so baffled, i don't get it, i was too feeling great, not completely great but for us we know just a bit to feel better is huge for us, at least a little bit of light in this horrible darkness, and then bam again horrendous same symptoms, depression, anxiety, top of head burning, and i also have the panic symptoms, my going to sleep is a ritual, it has to be dark, i take my sleeping meds and lay down and pray that i can fall asleep, i think this virus so highjacked the brain that is unreal, for someone who never went through stuff like this they can't understand, i'm sure all of us been through some rough stages in life, healthwise, but this is unreal