Terrible brain fog, memory/learning problems, emotional emptiness post Mono/Glandular Fever
Posted , 24 users are following.
Hey folks,
So I came down with what I now know was glandular fever in the middle of August of this year. I was suffering all the typical symptoms (incredible fatigue, fever, night sweats, nausea, headaches, huge lymph nodes). I thought it was just your typical flu and didn't give myself much rest as I was working two jobs and just about to start college and didn't want to let being sick get in the way of my first few weeks of being a fresher! Eventually I crashed with this debilitating brain fog, stoned, spaced out feeling where I couldn't focus on anything or hold onto a train of thought, I also started to feel numbness and tingling in my left arm and feet. So eventually I caved, visited the doctor and was diagnoised with mono. Took a week off and headed home to get some rest and one by one all my symptoms disappeared except for this brain fog which at this stage is pretty much constant thoughout the day and I still get occasional numbness and tingling along with slight arm tremors.
Basically I'm wondering if anyone else has experienced this and recovered? And if so what steps did they follow if any to get better? No doctors seem to be able to understand what is going on and I've had both an MRI and a lumbar puncture to rule out brain tumors, encephaltis, MS etc. I've gone from being an active person who used to run and go to the gym 5 days a week, loved socialising with friends and studying to being reduced to a recluse who has no interest in anything, stays in his room most of the day and no longer goes out at night with friends. At the moment I feel like a shadow of the person I once was, like my personality has been zapped from me.
Apologies for rambling but this brain fog has made it difficult to add any structure to what I'm trying to say hahaha!
Any help would be greatly appricated!
Mind yerselves guys!
3 likes, 78 replies
sophie72924 Mono1996
Posted
Hey!
Sorry to hear you have GF.
I hope my experience can help you and that you will begin to see there is light at the end of the tunnel. It's a massive step for me to say that out loud and offer advise because it's been a long time coming.
I started to feel very unwell May 2016, back and forth to the doctors but didn't find out it was glandular fever until July. I also believe if I had of rested earlier I would maybe not have suffered so bad but because it took two months for a diagnosis I carried on working and working out, which absolutely ruined me.
I had a horrific summer swollen glands, couldn't eat, couldn't move, in agony... sure you all know. Could barely make it to the toilet. Sent to anger clinics because I had so many lumps in my neck. Literally thought this was it. Flashbacks to the worst of it and me screaming in agony, thinking I couldn't go on and if I ever recovered I would never, ever take movement and life for granted again.
By September I was moving around the house more but I well and truly paid for it, I would be in agony, muscles would spasm and I would barley be able to move. Began to really loose hope that I would get better. As well as being ill, it's like you said... I lost a part of myself to it. I would see my reflection and cry because I would look terminally ill and did not recognise myself. Life was about surviving minute by minute.
By October I was forced back to work because of my living situation. I had no choice and it took everything I had to keep it up. A few weeks in and had a MASSIVE break down which was detrimental to my recovery and admitted to work how I wasn't coping. This took a lot of anxiety away but my mood was beginning to suffer as it had been dragging on for so long I began to get depressed. Somehow I made it to the Christmas break.
After Xmas had another mini melt down because I think you put so much pressure on yourself ' I will be better by then' etc and when your not it just wrecked havoc with my anxiety.
I kept pushing through. I think the worst is it's not a smooth straight recovery. It goes from a good minute out of the day. To a good hour or two. Then to oh today's been manageable. And now I'm at a few days have been okay. But then the next might make you crash and remind you your not there quiet yet.
It's been the hardest nine months of my life. The GF throat and sickness disappears after a few months although I have nerve damage in my neck because of it so on medication for that. It's the fatigue, the pain and agony, just functioning destroys my body let alone get through day to day life.
I kept regularly visiting my doctor and he referred me to the pain clinic which helps very much so. I have also had a chronic fatigue assessment and they said although they are on the fence they believe this is still post viral fatigue and even though it 10 months on it's a very short term in grand scheme of chronic pain and fatigue.
I remember reading something on a chat room saying someone had GF and CF and what saved them was cardio and I thought are you serious. What sort of advise is that to somebody who can barley make it upstairs or down the street.
I, as you are. Am a very active person which means this has also made me feel horrible about myself. Slowly loosing a piece of me to the illness and my body is changing. But. In December. (So 7 months on) I had a thought... I'd like to go for a walk and I wonder if I could jog. Now. To someone suffering with GF to even have that thought is a MASSIVE step forward. So I went. And it was hard. And I collapsed after and everything hurt and twitched and I had to take codene to cope. But then I tried again a week later. And for 4-6 weeks I kept trying and trying. And although it hurt and I suffered terribly after for days... as each week goes by I get 1% stronger and stronger.
It is now march and I am running 3 miles, 3 x a week. I have to listen to my body and be very very mindful. But seriously. I understand now. You have to not let it control you and PUSH through it. Now, you will know if the pain you are feeling is ready for that. Because when I first read someone saying this I was like stfu, how ridiculous. But like I said, I think the first indication you are in a better place is positive thoughts about DOING something.
I am still struggling. I am still in recovery. I still don't feel 100% me and I hate photos been taken because I still don't think I look like me and I still feel like a sick person. It's been very very hard because you have to be mindful and all the services tell you to take every little thing as a positive and focus on how FAR you have come not how FAR you have to go. I find this hard. I think the best advise I could give (but have found it hard to follow myself) was to pace yourself and see every single thing as a positive. Once you start having thought of attempting to do things do it. It took me, as I said, 1-2 months for a gentle jog to not destroy me after. You just have to get to a point where you listen to your body but then ignore it's signs too. Because CF is all about our pain receptors been damaged thanks to virus so they are constantly in fight or flight activation mode.
I am still a fair few months off a full recovery and I don't believe it will be until the summer (I hope). Doctors like to say weeks but when you talk to other people it is more like months/year. It's so hard not to be hard on yourself and some days are manageable some you have to stay in bed and not move. I just refuse to let it turn into something bigger!!!
It's not days/ weeks but I'll say each month you get a little bit closer and a little bit closer. I think if I wasn't forced into work I'm not sure where I would be now. If I would of had a quicker recover or if I would of struggled to keep moving because I didn't have too. I think when you take that next step (work or exercise) do know it will make you feel worse. It will be very very hard but just keep pushing through and listen to your body.
I also take lots of vitamins, b12 is advised for GF I also take D3 and omega 3 and iron. All highly advised for GF / CF suffers. Healthy diet is also advised and I swear I read that dairy, wheat and red meat etc can make you worse I don't know. I also have a monthly deep tissue massage which really helps and have been advised acupuncture but have yet to try it.
As you can see, it's been a very long time for me and I'm still struggling. Make sure you have someone you can talk to and a good support network. Chase your doctor into referrals too so you can get the right support there. Good luck.
MonoJake Mono1996
Posted
When did the brain fog and loss of appetite go away for you guys??? I'm on four months and it's terrible and I'm so depressed.
Mono_too MonoJake
Posted
It took about 6.5 months to feel better and then had a month long relapse. Feeling more normal now and it will be a year on October 20th. The depression and loss of appetite is the worst.
craig07920 Mono_too
Posted
Hey Jake,
Sorry to hear you've been having such a hard time of it, just want to reassure you that these symptoms do pass over and you will feel more normal within yourself. For brain fog, B complex vitamin and things like Co-enzyme Q10 as supplements can be good along with a good strong multi-vitamin. Things started to improve a little after 4-5 months for me but don't panic if it still takes a bit of time after that for full recovery - it most definitely will come so hang in there!
Craig
MonoJake Mono_too
Posted
Mono_too MonoJake
Posted
Hi Jake,
?I feel much better, still have a few hours a couple of times a week that feel down but they pass by now. I am not out going for couple of mile walks with my dog yet, but overall much better. Time unfortunately seems to be the only thing that truly helps and I know it doesn't seem like you will ever feel normal again but it does happen. At four months I was still feeling really crummy, rest as much as possible. This must be very difficult in the Army. Are you able to get time off?
MonoJake Mono_too
Posted
Mono_too MonoJake
Posted
MonoJake Mono_too
Posted
Mono_too MonoJake
Posted
Yes the brain fog will clear, I remember doing paperwork and feeing like my brain would just shut down like an overwhelming tiredness. you are in the tough months of this virus, give yourself permission to rest and take care of yourself and eventually you will start to have brief windows of feeling normal, it is an up and down roller coaster from there, it is really disappointing when the feelings come back but eventually the immune system gets ahold of the virus, it takes awhile and you may recover much sooner than I have but it is very normal to have it much longer than the timeframes you see online.
Craig was a constant source of encouragement to me when I thought I would never recover. These forums are a great support.
craig07920 Mono_too
Posted
Hi Jake,
Mono is absolutely right the brain fog and horrible associated symptoms will fully disappear. Just need to not look too far ahead and take each day as it comes. I know the horrible feelings as I've been struggling with back issues and associated worry and problems lately.
Yes, the symptoms of glandular fever do fully disappear, I know it's hard to see it at the time when going through it but that will definitely happen for you, I do truly and fully believe that.
Take care and thinking of you, and you too Mono thank you for your kind words and you have been an amazing support to me and others too.
Craig
MonoJake craig07920
Posted
gee29819 MonoJake
Posted
I don't have testicles lol but I have pelvic pain where female reproductive organs are located.
That being said, this virus cab attack ANY part of your body. It's not really the virus, but your immune system fighting...
How old are you ?
MonoJake gee29819
Posted
MonoThree MonoJake
Posted
I am a 27 year old male. Have had mono for 5 months now. I still have some brain fog and have not been able to get back into shape. I used to do CrossFit every day, now I am barely jogging for 30 minutes. My right testicles hurt at month 2 and now at month 5 the pain came back, but went away after a few days.
Rhodiola (Rosea) has helped with the stress/anxiety.
MonoJake MonoThree
Posted
dan84262 MonoJake
Posted
I lost my appetite. Most of the time I have to force myself to eat because I lost 10 pounds. I didn't have digestive track problems... only nausea. But I've read that some people have had awful digestive symptoms, so it's not weird.
You said that you've had this for 5 months... my symptoms started only a month ago... This is going to be a tough year.
craig07920 dan84262
Posted
Try not to look too far ahead, recovery really does seem to be different for everyone. And the phase you are going through right now is by far the worst, so remember that things will get better and just take each day as it comes is all you can do when going through it. Thinking of you.
Craig
MonoJake craig07920
Posted
catchthebus MonoJake
Posted
I've developed a sore throat about 2-3 weeks into disease and still have it now(7 months). The most annoying symptom so far.
dan84262 craig07920
Posted
Thank you Craig. I'm trying to take it easy. I know that a lot of us are going (or have gone) through this. This site has helped me a lot seriously, If I didn't know what it is like for other people to have mono, I don't know where I'd be. Mono is devastating, but having a community like this really helps a lot.
dan84262 MonoJake
Posted
Yes. I still have sore throat. I no longer have white patches on my tonsils but I still feel a lump inside my throat. The infection left my right tonsil swollen, so it hurts a little sometimes. It's been a month since I got it and it's still there. I stopped taking ibuprofen a long time ago so I have to deal with it without analgesics and it sucks.
craig07920 dan84262
Posted
Thanks for your kind words Dan, it's so hard to deal with I know I just really hope and pray for recovery for everyone here....it's such a painful experience to go through physically, mentally and emotionally - but there is hope and recovery out there for everyone on the site - I truly believe that thanks to Jesus.
Mono Jake, yes I think I had a kind of itchy throat for a spell during the virus if I remember rightly - was a while ago now but all sorts of strange symptoms I went through in different phases.
Hang in there and remember it will get better!
Craig
MonoJake craig07920
Posted
craig07920 MonoJake
Posted
Hi Jake,
It's hard to remember exactly, but I think I remember having a bit of a twitchy eye, as if it was pulsating or something, a weird kind of sensation at times.
Craig
elevatus MonoJake
Posted
elevatus MonoJake
Posted
I had the same thing for months 3-7. I also felt and still feel a bit like I am walking on the deck of a ship. I've had the digestive and appetite issues from months 5-7. I seem to have passed it now as I near month 10. I seem to have setbacks, but
One thing is for sure, this is an opportunistic virus. It waits for your body to be under mental or physical duress, then it kicks in like crazy. I recommend halting all workouts, other than maybe a 10 minute walk until months 10+. I'm nearing month 11 and only now do I feel like I could start lightly working out without setting myself back. I found daily life to be really difficult, no fuel left for workouts.
craig07920 elevatus
Posted
Hi Elevatus,
I definitely agree that the virus causes worst symptoms at those opportunistic moments, when you're trying to do things to help yourself like get more active again and live a normal life. This is what makes it so frustrating, when you're trying as hard as you can and set backs keep coming.
So sorry to hear it's been going on for 10 months - it feels like an eternity I know. When i had the virus it was at about 10 months I started to see a turning point, recovery didn't come right away but all of a sudden I started to feel more human and my body resilience came back bit by bit until I felt much better. I really do believe you are through the worst of this Elevatus, you won't have to go through anything like this 10 months again - if my experience is anything to go by the next 10 months will be a cake walk compared to the last 10 months!
Thinking of you and remember just take things slowly, build things up wisely. Vitamins and herbs (good strong multi-vitamin per day, high doses of Vitamin C per day (1000mg-3000mg), B complex per day and immune boosting herbs like siberian ginseng / echinicea) really helped me in my recovery. Worth a try if not already doing that.
Hang in there and believing in your recovery because of Jesus - there is always hope because of Him I do believe that. It's so hard to go through this virus I know, but I truly believe things will start to really get better for you from here thanks to God.
Take care and just take it slow!
Craig