It’s been a little over a month now since being diagnosed with Mono on 5/3/19. I have been digging through these forums for quite sometime you guys. I’ve been lurking in the shadows looking for other peoples experiences with mono that match mine. Desperately looking for another story that matches my own in some areas. They seem to be non existent in this area. You see, I started to experience symptoms that prompted me to make my first appointment sometime after April 8th. I made what would be my first appointment soon after. The first doctor tested me for, what seemed to be, everything under the sun.
The tests above are the first series of tests ordered by the first physician I had an appointment with. These tests came back negative. Nothing out of the ordinary. Please bear with me as it may seem like my story is jumping around all over the place. However, I’d like to take you back to when I first started to notice subtle changes. The first subtle change I experienced was shortly before April 6th. I’d say more like late march. I noticed a slight change in my appearance. I looked a little leaner. Slightly… this being despite that my diet had been the absolute same for the last, maybe, two or so years. Everyday I’d eat a tub of cottage cheese upon waking, 15oz of chicken breast for lunch, and either a tub of cottage cheese or five whole eggs and five egg whites. One of the two (for my last meal). Every day, day after day. My profession is very physical and demanding. I work the usual eight hours as an Industrial Mechanic and weight lifted five days of the week. Despite this I never dropped any weight. So, to me, it was alarming when I noticed I started getting slightly leaner. It started playing with my mind a little but I did my best to brush it off as best I could as I still felt completely fine at this point. The weekend came and I had my son with me and my nephew was over. We got ready and I took them out to dinner that evening. As we ate I noticed it was hard to pass the chicken I was eating. This was the second symptom I experienced. As I swallowed the food I felt as if a piece would get lodged in my throat every time. So much so that I’d have to cough to help dislodge the piece of chicken/food that was present in my throat. I said nothing at dinner about it. I’d be lying if I said that I didn’t start to put these two symptoms together. Now , my situation was started to get to me at this point more than usual. I carried on the next week hoping that being busy at work would help me forget for a while. After all, I still felt just fine. I was wrong. As lunch came around it was time to eat. I had my usual chicken breast and vegetables. I nuked it and sat down to eat. Lo and behold I had trouble swallowing yet again. This continued for sometime. Theres more. Before the week concluded, I started experiencing this sensation in my head after work. The only way to describe it is a feeling of having a floating head, light headed. Like I had a balloon for a head. If that doesn’t make sense I understand. Sometime went by and thats when the fatigue/weakness hit me. It hit hard. The thing is, I experienced more weight loss shortly before the onset of the great fatigue/weakness. The weakness was bad. It took effort to lift my arms. Normal items now took effort to lift. I took my son to the park to try and get my mind off of things despite feeling how I felt. We were there about an hour. Half the time I was sitting on a park bench. The other half I maybe walked around a bit and climbed a hill with a slight incline. Just doing that little activity had me feeling very sleepy. I couldn’t take the uncertainty anymore. I booked the appointment and the tests above were ran. Between my first appointment and my second I developed more symptoms. Chills, night sweats, back pain, leg pain. The second Dr. ran more tests. Here they are below:
He ordered the above tests along with and abdominal ultrasound which was normal and a chest x-ray which was normal. Oh, and he also ordered a barium swallow test which came back normal as well. What did come back positive, however, is the Epstein Barr Virus Antibody Panel.
My physician diagnosed me with Mono on 5/3. I had no clue what it was and continued to feel unwell. Still felt fatigue and weakness so I made a phone appointment with another physician. She ordered more test be done. Here they are below:
These tests also came back normal. I’m just very confused and scared at this point. Everywhere I read it seems as if the people that have lost weight due to Mono have done so due to “not eating/not being able to eat” or “throwing everything up”.
I haven’t Thrown up and I’ve always had a solid appetite. I’ve never had a fever or a sore throat or a lot of the classic signs of Mono. It simply doesn’t make sense to me. I feel like I’m at the end of my rope. I haven’t posted in a while as to not bombard this forum too much. When the nurse weighed me the first time I was seen I weighed 223lbs. This sounds silly but I now weigh around 261lbs but still have doubts. As my appearance seems to have changed. My arms, wrists, and face still feel slim which is confusing and although the fatigue and weakness seem to be a little better than the initial onset. Last week I had a bout of headaches and muscle twitching everyday. This week I seem to be having some sort of reflux. I’m sorry for the long lost you guys/girls. I’m just in doubt and terrified. At the very least I will do my best to mot venture outside of this forum. This has all gotten to me pretty bad and I can honestly say I’ve hit an all time low for myself with this whole situation. Again, sorry for the long post. I hope you are all doing well and continue to do well. - JC
Your story sounds similar to mine and a few others I've seen. I lot about 12 pounds. I had an appetite and did not throw up, ever. my doctor said it was due to my body burning so much energy to try to heal itself.
my first symptom was a low grade fever, but I did not feel bad. 2 weeks later, I could barely move. I had a dry throat for about 2 days and that was it. I also had neurological issues like tremors, numbness on different spots of the body, terrible anxiety and insomnia. it was basically about a month of pure hell, followed by 6 months of healing. I still have some neurological issues and believe a nerve in my leg was permanently damaged. it will be a year in August and I feel mostly healed, though.
Your story sounds like mono to me. You are going to experience some weird things that make you doubt your doctors diagnosis. Try not to, because it will only make your anxiety worse. I wish i had done that myself.
I used supplements to aid in healing. you can search my post for more details if you are interested.
This will not be an easy time, but you WILL get better.
my story is exactly the same. same type of onset too. still have the floating head feeling, body aches, weird blood vessel issue in my hands, and still alot of fatigue... im at about 10-11 months with this. im going to start anti virals and see if they help
Your story sounds a lot like mine. I noticed a few months before it really hit that I had lost muscle tone in my legs. When the symptoms really hit I dropped 30 lbs. in about a month. During this time I was hungry the entire time and had actually increased my food intake. I slowly gained it all back and the muscles in my legs went back normal once I was able to workout again. I like a lot of others never had the typical mono symptoms during the whole ordeal I had so many strange symptoms that I was sure it was something much worse stay away from Dr. Google. Everyone is different but it took me a little over 18 months to feel normal again and when it happened it was all at once I all of a sudden started sleeping good again and everything went away.
Not to undermine any of your symptoms but your story does not seem out of ordinary to me. I didn't have many of the "classic" symptoms either, never even got officially diagnosed because on paper i was healthy. I had no signs of mono, except for slightly elevated white blood cells. On the inside however, I was suffering. Never had sore throat or swollen lymph nodes but the weakness and fatigue was horrible. That balloon head feeling, lightheadedness happened to me too, one of the worst symptoms. I think some of your anxiety about weight is probably the virus making you paranoid. It made me paranoid too, anxious about the slightest changes in feeling or appearance. This virus really affects you mentally and is so tiresome. It has been more than one year now since i got sick, i am much better, and you will get through it too.
You have absolutely nothing to apologise for in terms of opening up and taking time to describe just how frightening and tough everything has been for you lately - Jayce I really remember the first number of weeks / couple of months of mono, and how awful I felt physically and mentally, just not knowing what was happening to my body but feeling something major was going on. It was a terrifying experience and I wouldn't wish it on anyone.
You definitely have done the right thing getting the bloods and different tests done. One thing to remember with mono is that it can affect everyone differently, there are often frequent and common symptoms that most people have like constant fatigue, that general feeling of being unwell, feeling a bit 'stunted' or not right in your head, but there are often many other symptoms that can be unique to each and every person. From what you describe, it definitely sounds like this is all coming from the mono virus and nothing else. I know that doesn't help much when in the midst of suffering and worry, but as someone who was in a similar phase mentally and physically in the weeks after being diagnosed with mono, I want you to know that it will get better and what you are going through now is BY FAR the worst and that the intensity of this thing lessens as time goes on and you will reach full recovery - it's just so frustrating that it can take a little time but truly you will get there.
Also take it as encouraging and reassuring that you have put some weight back on - remember Jayce this virus really knocks your body for six and it can be normal to lose weight and just generally not look or feel like you normally would - you will get through it Jayce and truly just focus on looking after yourself right now, getting plenty of rest, remembering that God is looking after you and that you are going to get back to full health again and that what you are going through now is a terrible experience but it will be temporary in the grand scheme and much healtheir and happier times are ahead for you.
I went through so many of the same fears and worries after diagnosis Jayce, thinking 'surely ALL this can't be caused by mono?' and trolling the internet and getting even more worried as only reading the scare stories that people post. It's so hard I know and remember -but you will get through this - and remember that the vast vast majority of people who get mono get back to full health again, even if it takes a little time. I've read different estimations that this virus affects anywhere from 75% to 90% of people in the western world at some point in their lives, many get when very young when the full effects aren't experience as they are for an adult - and the majority of these people are well and live full and well lives after going through the virus - something to hold onto for hope definitely!
Keep in touch Jayce and let us know how you are doing, I'm still thinking about you and believing that you are going to be well again.
DOMINIKA
When you refer to weakness what is the weakness you are or did experience?
I Myself have a specific weakness in my left arm and index finger and thumb
My left arm sometimes does not feel like its my own
Have you had any weakness similar to this?
Your reply really does help put my mind at ease. Since this whole thing started everything seems to be spiraling out of control for me. At times it definitely gets worse. Its not easy going through all of this (obviously). I'm very grateful for you and others here in this forum that go out of their way to help others. Up until now, I have not found other peoples experience that match mine in what I had brought forth. Again, thank you. By the way, how is your leg doing? Is it a numbness you're experiencing Jen?
Wow, I also noticed what seemed like loss of muscle in my biceps and shoulders. It sounds like your body has really gotten a handle on things. I feel much better after reading your comment. So much so that I took a screen shot of it and a few others. I will definitely steer clear of Dr Google for sure. Thank you for the heads up. Do you remember what month you started to get back into the gym in your mono time line?
Yes, I feel as if you nailed it. The mental affects have really taken their tole on me. Lately, being so anxious has truly made me feel mentally exhausted. Thank you for your reassuring words Dominika. I really had no idea mono could play with your head in so many ways. I truly hope I can reach the point of where you are at in recovery. I'm happy you doing much much better.
Hey Craig, how are you feeling bud? Thank you for taking the time out to reply and check up on us. We are truly blessed to have you my friend. Your words do help put my mind at ease as I've been having a really tough time as of late. More than usual. I really can't thank you and the others that have replied to this thread enough. Because of you all, I will be able to get a good nights rest tonight. It is really odd that symptoms of mono can very quite differently from person to person. Its quit confusing actually. Again, thank you for your reassuring words Craig. I hope I will one day reach the point you are in your mono journey. I hope and wish to make a full one hundred percent recovery.
It took all of a year to get back into the gym. The last major issue I had was anxiety for no reason if that makes sense I'd be setting at work or home and my body felt like it was in panic mode even though I wasn't panicking mentally. I changed doctors around this time and to my surprise he had done a lot of research in college on EBV. He put me on low dose sertraline and told me to start exercising, I started out slow with 10-15 minute walks on the treadmill and as many push-ups as I could do (which wasn't very many at first) then added one leg exercise at a time. I'm no where near my pre-illness fitness but I'm close I probably would be if it weren't for trying to play catch up with all of all of the stuff that didn't get done while I was confined to the couch. About the sertraline I quit taking it after about three months my anxiety was gone and the sertraline was making me sleepy so I quit taking it and I've felt pretty good sense.
The people on this sight are great people who understand how bad this can be for some people. It was a huge comfort to know that other people have had similar experiences and recovered. I still have small reminders from time to time but that's just when I over do it. Hang in there you will get there.
From what I have heard and seen most mono patients don't actually have the usual mono symptoms. The only thing else I can think this could be is anxiety this is due to the floating hand and swallowing issue. However, since your blood work came back positive for mono you can rule that out. Make sure to get plenty of rest, call your doctor if you experience any new symptoms, if you start to feel a sharp pain in your stomach area go to the hospital. Make sure to continue to eat healthy and get plenty of fluids.
I TOTALLY understand. It is a very hard time and not many people will understand why it is taking so long to get back to a semi-normal life. This site helped me so much. I felt like I was spiraling out of control for the first few months of my illness and I wondered if I would ever heal...but I am and you will too.
Interestingly enough, i am having a flare up right now. The doctor looked at my blood under the microscope yesterday and he could see the virus. I'm guessing that's why my leg has been weird the last week or so. It feels neurological, like the nerve running up my leg is numb. its the same leg I had problems with during the worst of it. Also having anxiety and heart palpitations again. I know this will pass though, and it will for you too.
So many crazy symptoms that I thought for sure there had to be something else wrong with me. All things point to mono though. Just remember that this too shall pass.
hmm.. it is hard to explain exactly, but mostly i just had an allover body weakness, with my legs probably being affected a bit more. When I would lay down in bed to go to sleep i would just lose sensation in my legs if i kept them still, just felt like they werent there, very strange. Once i moved them a bit or clenched my muscles i could feel them again.. still happens in a more mild way when im extra tired now . Basically my weakness just felt like my legs would buckle out from underneath me at any moment, so it was very scary to do anything that involved walking around for longer periods of time. I didn't really have any specific weak points like you, but ive heard of lots of people who feel weaker on one side of their body than the other. everyone seems to experience it a bit differently so try not to freak yourself out! You'll get through it!
I am absolutely sure you will get better! It really takes a bit of time and patience, try not to get discouraged and remember that the voice of anxiety is not the voice of reason. Eventually you just get used to it and cope with the unpleasantness, learn to ride it out. Sometimes it may feel like you are stuck in one place, but at others it will feel like you've made a giant leap in your progress. this is just the nature of this virus, but it DOES get better. Try not to worry too much (I know it is easier said than done because i was in your exact situation last year at this time) but stress makes it worse, just like with anything. Take care of yourself and relax as much as you can (:
Thanks so much for the amazingly kind words, equally so your encouraging words for me and the fact you've taken time to pray for me lately has been a great source of encouragament and help to me to - I can only thank you Jayce. I've still been having a tough time unfortunately, this week have had another setback as I seem to have twisted or done something to my lower back again, just hoping and praying so much that it can settle again as that really gets me so down.
You're so right about mono Jayce that it can affect people in a wide spectrum of ways, I've only really started to learn and appreciate that fully since I started coming on the site here. One person can struggle with this virus in a completely different way to another person's struggles, yet the root cause is the same. So don't worry Jayce if you get symptoms which seem to be slightly different to those that people mention on the forums, that can be very normal indeed.
And truly want you to remember that there IS full recovery and good health beyond this virus for virtually everyone who goes through it - even and especially those who are very unwell with it and struggle for many months. That in no way is a sign that things won't get better, it is unfortunately a very common course for this virus for many people, but equally it is a very normal and common course for things to get fully better after some time too - so hang in there Jayce, I'm still keeping you in my prayers and believing in your recovery! All prayers for me too at this time very much appreciated as been struggling a little this last few weeks.
You WILL get the breakthrough and victory with this Jayce - I am 100% convinced of that, trusting in God, and even if it can't be seen just yet remember God is working behind the scenes on things to come good at the right time for you.
I totally agree, I was a fit and sporty person before I took mono, and it took me some time and confidence before I felt my body was ready to take on even gentle exercise again. It takes time but I was able to get there with time too, just so important to listen to your body and not overdo things too soon.
I remember feeling that my body resilience would never return and that I would never be able to anything too physical again after this virus, but it's just the virus tricking you into thinking that - your body resilience does return with time as does how you feel and your confidence and health.
Hang in there everyone, this virus tries to do its worse and even though it can take a bit of time to get fully over, you will get fully over it and back to the things you enjoy doing again - God is our great healer - thinking of you!