My mono story...and looking for any comparisons
Posted , 15 users are following.
Hello all,
This will be long, and I apologize up front. Because it's a long story, I'd like to ask my questions (to get comparisons) up front, as to allow you to decide if you want to read the story. For those who are looking to confirm that their symptoms are "mono normal," keep reading past the questions. My story could help you with yours. I hope it helps someone else.
Here are my current symptoms that I am calling "mono related," but I'm really looking for answers to see if any one else that is suffering, or has suffered from mono, has experienced the same. And, what are you doing for it? None of this was present before my bout with mono.
*tinnitus: mainly in my left ear. This started after my mono diagnosis
*insomnia: I've never had a real sleep problem in my life. Now, I find it very hard to stay asleep at night. I typically wake in the middle of the night and am unable to go back to sleep. I've tried most OTC sleep aids, and am lucky if I get 4 straight hours a night.
*taste: I seem to have a bad taste in my mouth most of the time.
*upper respiratory: sometimes I feel like I'm at the beginning stages of an upper respiratory infection. So far, this only last for a few hours and goes away.
*butt cheek ache: Don't laugh (ok, maybe just for a second), but when I got the all over body aches, I got them in spots I really never even imagined. Both of my butt cheeks were sore. One side never seemed to get better. It's not awful now, but still slightly sore. I swear, the virus is living in that cheek. I can't prove it, but I am so confused as to why that cheek still aches.
****NEED ADVISE: Should I get a flu shot? I can't decide if I should with my immune system in this compromised stage. I have read that it's not a good idea, then I've read the opposite.
Ok, here's my story.
To start, I would consider myself a pretty healthy 44 year old. I exercise regularly, eat right most of the time, and maintain a healthy weight. I have had allergy issues for many years and of course get sick occasionally, but mostly a fairly energetic and healthy person.
I remember the exact day I started feeling bad. It was 13 AUG. I remember because I was leaving that morning for a business trip. I felt off that morning, but nothing drastic. I remember feeling hot, so I popped my thermometer in to see if something was really going on. My temp was at 99.4. I remember not feeling horrible, just a little tired. I grabbed my bags and headed out the door, but brought my thermometer and extra vitamin C with me (thinking I might be having some allergy issues). I didn't slow down much during my work trip (mainly because I never really felt BAD, just not 100%), but did check my temp every day. It stayed between 99.4 and 100.4. I returned from my work trip 5 days later, and by day 7, decided I needed to make a trip in to see my doctor.
The doctor said it was probably viral, and to let it run it's course. That sounded fair to me, so I went home and stayed out of work for a day. I felt a little achy and tired, but again, nothing I couldn't handle or that scared me. I actually started coming around...the fever was gone for about 4 days, and I started feeling normal. I got back to my work-outs and normal days. That Saturday, 1 SEP, I went shopping. I remember during shopping that my throat started hurting, which is not a normal thing for me. Ever since I had my tonsils removed about 15 years ago, sore throats are not a normal thing for me. I knew at that moment I was coming down with something. Again, thought it was just a sinus infection or something easy to fix.
The next day, I woke up feeling like someone had beat the crap out me. I hurt in muscles I didn't even know I had. My whole body hurt. I thought...do I have the flu? My lymph nodes in my neck felt swollen. Swallowing was uncomfortable and my neck felt swollen. I made another doctor appointment. This time, my normal doctor was not in and I saw the PA. My temp was 101. I felt bad. The PA said it was viral, I had fluid on my ear, my throat was very red, and I was draining. My lymph nodes in my neck were swollen on both sides (but nothing too drastic). She tested me for strep (I already knew it wasn't that) and did a strip test for mono. It was negative. She gave me a steroid shot and a decongestant and sent me on my way. The steroid shot, btw, was horrid. I was awake all night with a racing heart. By this time, I was losing weight without trying. I was exhausted.
The next day I felt slightly better, but the low grade fever remained. This was the case for the next few days.
I had another business trip planned for the following week, so not feeling better, I went back to the PA again. By this time, I was getting concerned. I mean, it's not normal to be sick (fever, aches, etc) for this long (it was 6 SEP). I asked her if I should travel, I asked if I should be going to work. I was still running the low-grade fever when they checked my temp. She said I was fine to work and travel. She almost acted like I was a hypochondriac and was anxious to dismiss me. Being concerned, I asked her to draw blood and check for anything. After all, I have health insurance. It would not have cost me a thing, and would not have been difficult for them to do, as the lab is in the same building. She would not.
I traveled 2 days later.
I arrived at my location feeling like I had been hit by a bus. I couldn't work. I could barely bring myself to shower. One of my work team mates suggested she take me to the local clinic. I felt so bad, that I agreed.
The doctor at the clinic said it sounded and looked like mono. My spleen felt enlarged. All my symptoms matched. By this time, I'm thinking, "what the heck is mono?" They did a blood draw and said they would have the results in a few days. They told me to rest, no work. I made arrangements to travel home. I felt horrible. I wore a mask the whole way home and wrapped up in sweatshirts and touched no one or nothing. After I made it home, the clinic called. I was positive for EBV.
I spent the next week at home, feeling horrid. I was supposed to be resting, but I had insomnia (something I'd never had before).
One night I realized I couldn't feel one of my butt cheeks. It was numb. I thought...this is crazy, but maybe it's a weird symptom. It went away in a day.
The fever, exhaustion and all over unwell feeling stayed until 18 SEP. On this day, I panicked. I was feeling numbness in my legs. My thought process was foggy. I felt out of my body, out of control, anxious...awful. I thought something really bad was happening to my body. Thankfully, my mother calmed me and I got through the night. I was ready to get back to my normal life. My stress level was sky high. I was afraid something else was wrong with me. I was thinking the worst. My BP was through the roof (I've never had high BP in my life). My left ear was ringing. I had lost 12 pounds by this time (I must admit, it was a great diet program). I made another doc appointment for the next morning.
My regular doctor was back in, and he convinced me that all the horrible things that google said I had, were not actually what I had. My blood work, besides the EBV, was good.
At this point, every morning for me was a bad morning. My eyes would be swollen when I woke up. It was hard to get out of bed. I felt so bad. Since there was nothing my regular doctor could do to assist me, I went to a holistic doctor that a friend referred me to. He could feel my body all out of whack, my weakened immune system, my enlarged spleen and aggrevated liver. He gave me a list of supplements to assist my immune system and get my body back on track. He was treating my liver, spleen, thymus, general inflammation and poor immune system. By 26 SEP, I was feeling better. I took it easy, but the next week for me was real progress. I thought I was really coming out of the woods from this mono nightmare. I didn't have a fever all week. My main complaint during this time was the insomnia. I was having a hard time getting to, and staying asleep.
Fast forward to 6 OCT. I made a mistake...and went for a massage. Apparently, massages can hurt you, not help you, when it comes to viral infections. I wish I had known that before the massage. By that night, my low grade fever had returned. It stayed with me until 13 OCT, along with the regular unwell feeling. I couldn't work out, and little tasks made me tired. I just didn't feel good.
Since then, my days have been up and down, but at least the fever has not returned. I have returned to a normal work schedule (except for going in a little later than usual, because I always feel like crap in the morning) and in general, feel better than I did.
I've read many stories in this forum, and talked to many friends who have has this before. All in all, I think I got it easy. I do feel that if this had been diagnosed correctly in one of the first 3 doctor visits, it would not have gotten so bad. I could have stopped my life to care for myself instead of driving on like nothing was wrong.
To those out there that think this is the worst thing ever...I hear you loud and clear. I agree. Mono wears you out emotionally, because you just get tired of being sick. You get tired of not being able to live your normal life. Overall, it could have been much worse. I was so stressed and anxious wondering what in the world would cause someone to have a fever for 3 weeks. When I got the mono diagnosis, I understood.
Mono plays some serious mental games with you. I'm still playing them, as I'm not completely well yet. It's up and down right now. I never know what the day will feel like until the day is there. For the most part, I can continue with my life now...just not the way I'd like. It is very hard physically and mentally to be sick this long, and I'm doing the best I can with it. I'm scared at times, that my weakened immune system will lead me to something really terrible that I don't even want to think about. I carry hand sanitizer and get far away from people that look or sound sick. Basically, I'm a little scared to live like a regular person.
I am thankful for this site and reading your stories. It helps me to realize I'm not crazy. I've been reading for quite some time and finally decided to contribute. Thank you all for sharing your good and bad stories. Mono sucks, and I hope we all get rid of this crap ASAP.
1 like, 228 replies
lori93950 jen83382
Posted
well if you can go to work then .... youre not that bad . some of the people on here can barely walk from one room to another.
i too was very healthy ate right worked out every day etc. i guess i was overworking out and many athletes get this .
id say NEVER get a flu shot its full of poison ! just eat as much raw food as you can rest as much as possible and keep in touch with your doctor so that he can monitor you
jen83382 lori93950
Posted
Lori, thanks for the reply. I may skip the flu shot this year if I can. I'm required to get it for my job, but if I can give a reason not to (compromised immune system), I think I can get out of it.
You are right about some being much worse off. I learned that from this site and also from friends. One of my coworkers said her tonsils were so swollen, they were touching each other. She could not eat solid food for some time. She said she was in bed for about a month. Another friend said she felt so bad for so long, she forgot what it was like to feel good. The good news to these 2 stories, is today they are both very much back to normal. So, yes, it will take time for all of us but there is a light at the end of the tunnel.
I think the hardest part for me personally was doing this alone. My husband is deployed overseas and my family is in another state. At my sickest time, we had 2 hurricanes come through our state. Even though I felt awful, I still had to prep for the hurricane (shop, get gas in the car, clear the yard and porch of all the furniture, etc...), and keep my animals and myself safe. I wanted nothing more but to rest and have someone take care of me, but it was not in the cards.
Those who have never felt what we've all felt, and are currently feeling, will never understand this illness. I'm not even sure my husband did until I broke down in tears over the phone.
About my doctor...strangely enough, he didn't tell me to come back and see him. He just said to let it pass and if I needed to come back in, come back in. I have been seeing the holistic doctor on a regular basis, though.
Today has been a bad day. I had a fever for a little bit and the the drainage started again. I fell asleep mid-day (that only happens if I'm not feeling well) and have struggled to get the smallest tasks done. Have you experienced the sinus drainage? I don't know if it's a mono thing, or just sinus issues.
Sweebee jen83382
Posted
Hi again Jen
The stories from your friends sound promising to me. after 13 months I have forgotten what it feels like to feel good. Like other people in the forum and Im sure yourself as well, its very frustrating and scary.
We will get there its just going to take time. Feel free to drop me a message anytime you need to talk to someone
Guest jen83382
Posted
Jen you should double check the regulations as i thought my work was a mandatory flu shot as told by my co workers however after further reading i discovered it was not mandatory but "recommended." nobody should be able to make you put something in your body that you dont want
lori93950 jen83382
Posted
definitely it just putting more poison in your body ! its soooooo bad for you !
yes ive gone through this all alone too for almost 7 months now. the last 2 months being the worst ! and yes done this all alone ... my mom came to visit but it was just more work for me and set me back.
i almost think its better going it alone as we need as much rest as possible .
cant believe you had to deal with hurricanes as well!! its like we cant handle one more thing!
i can just about change the bed wash the dishes ... the minimum .
and it seems when i say i have mono friends say ' well i was so tired today' blah blah . its like no ! you cannot compare feeling a bit tired to this !
great that your friends recovered. so great to hear good news! it just takes too long !! hoping we all get back to normal soon !
jen83382 Guest
Posted
I will, and thanks!
jen83382 Sweebee
Posted
so kind of you sweebee. it's so nice to have people to discuss this with. it truly does help.
craig07920 jen83382
Posted
It does definitely help Jen for sure to chat with others on the forum. Even though it's other issues and not mono I'm going through just now it has helped greatly.
I still believe you're going to get better Jen and this nightmare is going to be over for you and that you will get back to full health again. Will keep you in my thoughts and prayers. Hang in there Jen, sending hugs and best wishes.
Craig
lori93950 jen83382
Posted
yes unless youre going through this you would never understand how bad it is . thank GOD for this forum !
craig07920 lori93950
Posted
It's a great forum Lori, I always sense a real genuineness, kindness and sincerity from all the guys who have posted on here - not least of all yourself Lori! It's important we keep encouraging and helping each other.
Craig
lori93950 craig07920
Posted
yes we do need support during this awful time ... its a great way to share and feel some comfort
craig07920 lori93950
Posted
Definitely Lori - it is maybe underestimated something how lonely it can be to go through mono because many people don't understand because you often look fine and can be seen out or about, people don't really appreciate how bad you are feeling despite maybe looking normal and it certainly can be a very isolating experience. That's a good thing about this forum is that it's a place where the people truly understand how intense and debilitating and life-changing it can be to go through the awful time and experience of mono.
Craig
jen83382
Posted
I forgot to mention a few things that I think are important for those worried about their symptoms: during my worst week, I had night sweats that soaked the bed and I felt dizzy a lot. I also recently had to remove a belly button ring that I'd had since I was 25. In 20 years it had never been infected, but suddenly it became infected and my body just wasnt able to fight it off. I took it out and it has finally started to heal.
Sweebee jen83382
Posted
Hi Jen
Thankyou for sharing your story and sorry you have had to got through all this.
Your story sounds very simiular to mine (was 28 now 29), only falling ill a month and a bit after you. We both continued on and pushed our bodies through stressful work situations 😦
It very disheartening when you have to visit so many doctors to get some sort of answer. Personally I had to see 7 and it wasnt until 6 month in they said although the tests are currently neg, it was most likely EbV. Its no wonder people lose faith/trust in the main stream medical system 😕
May I ask what supplements your taking (just out of interest).
Im glad you are starting to feel abit better although still with some symptoms. Its amazing when you talk to other people, how many have gone through or know people who have gone through the same things with ebv yet doctors seem to fob it off.
For the insomnia I found playing meditation music very softly helped alot with quality if sleep. Theres alot of good apps out there.
In regards to the butt cheek thing (sorry I did laugh), its not something Ive experienced but did have 8 months of tingles and numbness in my left hand. From what Ive been told its normal to experience some nerve weirdness, but it will go away just like the rest of the symptoms.
This virus is horrible and largely under rated by many professinals (was told by one doct that they are only trained to look for cancer and that I had the flu.....what a load).
Keep your head up and try to stay away from google 😉
We are all here for each other ❤️
Swee
jen83382 Sweebee
Posted
Sweebee,
Thank you for your positive reply. It made me smile.
YES regarding the many visits to the doctor. I was so annoyed that the PA sent me traveling and working without even bothering to check my blood, something very easy to do. More than anything, I was disheartened she dismissed me during that visit. I'm no doctor, but I knew it was not normal for someone to run a fever as long as I had.
Supplements: 2 tbsp Black Cumin Oil a day (overall health), milk thistle (for the liver), thymus extract (immune system), turmeric, ginseng, and vitamin C. I am not sure if these are the reason my healing has been a bit faster than others, or not. It's crazy, because we get so sick of being sick, that we would probably stand on our head in a rain storm if we thought it would make us better. The holistic doctor has also been doing acupuncture and kinesiology (sp) to reset my systems. I do know that since seeing him, I have more good days than bad.
I will give the meditation music a try. Had a horrid night last night with very little sleep. The night before wasn't bad though...hard to tell why some nights are better than others. I think I'm starting to get used to it, though I really don't want that.
Butt cheek: totally ok to laugh...LOL. I figure we can either laugh or cry about it, and laughing seems more the way to go. Still to this day the one side is a little sore. It's the darndest thing. I don't know what to make of it, though I know for sure I haven't been working out to make it sore. I keep wondering if this virus can somehow live in a muscle for a bit. Who knows I guess. Seems like there's something new every single day. It does make me feel better to hear someone else had some neuropathy issues as well. When I first felt the numb and did a search, some pretty horrible things came up. I called the nurses line of my insurance company to ask their opinion and the woman told me I was having a stroke and go straight to the ER. At that time, I was at home alone during the middle of the hurricane. After I freaked out completely, I called my mom who works in the medical field. She asked me some questions and assured me that wasn't what was going on. Oh, the stress this illness has brought to my life, even without trying.
I agree that it is very under rated by professionals, and also by those who do not know about it. My boss couldn't understand why I was still feeling so ill after being out for 2 weeks. I guess he thought it just went away overnight. I tried to explain it to him, but I really don't think he was listening, or maybe didn't believe me.
Thanks for being here to listen. It truly means a lot.
Guest Sweebee
Posted
im 27 and my diagnosis was exactly the same as yours.. its really annoying not knowing for sure. hope youre feeling better
jen83382 Guest
Posted
Ant, where are you currently in your healing? still suffering?
Guest jen83382
Posted
yeah... i'm definitely improving slowly. the "unwell" feeling gets less and less everyday and its more of an energy thing along with the strange symptoms that come and go. i force myself to think back a couple of months ago and compare simple things like going for a walk down my street and realize i have improved even if its hard to notice. but the fact that my walks get longer and further and i don't feel so nautious is physical evidence I'm improving. i still feel like I'm stuck in this dream state but i just look at the areas where I'm improving and focus on that. eat well, get outside for a bit, meditate and do my best to get my sleep pattern good
lori93950 Guest
Posted
thats great news ant ! i cant wait to be well again! im having one of those awful awful days.. literally trembling . so glad youre feeling better and yes the walks for me by the beach are so therapeutic just have to make sure i dont overdo it. i remember how i used to run and now i walk so slowly ... hope to be back running soon !
jen83382 Guest
Posted
Ant, I'm so glad to hear you are healing. It gives us all hope!
craig07920 Guest
Posted
That's really good Ant you have seen some progress in the last couple of months. It can be so frustratingly slow at times, with ups and downs and better days and setbacks that it can be hard sometimes to appreciate the overall improvement, even if it is at a steady or slower pace at times.
And absolutely you WILL get there fully Ant. There was a stage I would say between 6 and 10 months probably most prominently where I had improved a little but still felt nowhere near normal and thought this is as good as the recovery gets and would have to cope with a new 'normal' as such. But please know Ant that things DO continue to improve until you reach full recovery, sometimes it can feel that 'slightly better but nowhere near normal' phase can last endlessly, this can be normal but it doesn't mean to say you won't get there and absolutely with time you will get back to full health again. Hang in there!
Craig
craig07920 lori93950
Posted
Hi Lori,
So sorry you've had such an awful day. In those moments and days you just need to focus on being kind to yourself, remind yourself that this is just a temporary setback and that things will stabilise again. It is frightening to go through when you feel that way I know, I have had days like that lately where the sinking feeling has been overwhelming and it's the most awful experience. But God is right there with you Lori and will get you back onto safer ground again, I truly believe that and that something amazingly positive in your life is going to come out of this whole horrible time - God is the master at turning seemingly hopeless and negative situations round for good we never could have imagined.
Keep up with the walking on the beach if you can and don't compare yourself with when you were able to run - remember then you didn't have this awful virus on you and the time will come again when you will be free of that burden again and be able to exercise freely again, hoping and praying that for each of us!
Craig
lori93950 craig07920
Posted
thank you craig ! i seem to be hanging by a thread right now as its all getting to me . i have to refocus and balance my mind and just get well. it does pay a big toll on you as you feel so unwell most days . trying to stay strong and yes i hope something fabulous is coming into my life after all this is over . im still praying and asking GOD to help me get through this awful time .
hope you are feeling somewhat better and that your new dr can take some of the burden of worrying from you .
lori93950 craig07920
Posted
thats good to know ...my worst months are the 5th 6th and 7th .... its so weird i thought id be better by now . good to hear that there are ups and downs to this . i was coping better in the beginning...... gosh i hope this is over with soon ! i am seeing a pattern with everybody of a few 'ok' days and then some bad ones before a full recovery .
craig07920 lori93950
Posted
Thank you Lori for your kind words, I do worry how I'm going to cope or if the doctor says anything that unsettles me again, I'm just quite fragile right now praying God to strength and protect us through Guardian Angels assigned to each of us through what we're going through right now Lori!
I know that feeling of just trying to hang on, it's not easy and the emotional rollercoaster you have been through right now takes chunks out of you I know Lori. It's so much easier said than done, but if you can give yourself some 'you' time each day, where you can do something nice, that you enjoy, or at least causes distraction for a while - for me it's often just watching a tv show or having a bath or whatever. You deserve that time Lori, your mind deserves a break from everything and remember even if your body isn't feeling great - it's okay to say 'I'm leaving this with God and going to do something nice for myself right now' even if it's only for a short time. It's easy to say Lori but I know it's not so easy to do when feeling so unwell and overwhelmed. If you can talk to someone each or most days, even if it's just on the phone, do it Lori it's important to talk when feeling how you've been feeling. Thinking of you and hoping for a better day.
Craig
jeff14986 jen83382
Posted
**Hello!
This is my 1st reply I've ever done, none hit this close to me except this, namely, mono!
I have mono, yep, for about 55-56 years. I also have all of the symptoms (except the butt-cheek thang, more on that later) you & others have stated plus a few more.
Its taken me all these 55 or so years to finally understand the truth about mono.
I'll try not to repeat what's already been discussed among you so, here goes, a couple of questions 1st.
Do you know how you became infected? Did you, think carefully, get any vaccinations prior to you getting sick? It's my understanding that its ebv, which for most of us (in my case) got it from a contaminated vaccine.
Do you know that the virus never leaves the body? Ive learned that it goes dorment, waiting until you get very stressed, then it renews its attack on your body!
Do you know that you can conquer this nasty virus?
Do you know who to your enemy is that's preventing you from conquering it?
If so, well & good, but if not, let me know & I'll tell what I know so far by answering the questions I've asked you.
jen83382 jeff14986
Posted
Jeff,
I have a pretty good idea how I became infected, sharing food. I havent gotten any vaccines in the past year.
I do know it will never leave my body. Finally, I have not figured out how to conquer it, but I am certainly ready to figure it out.
craig07920 jeff14986
Posted
Hi Jeff,
I'm very sorry to hear that you've had such terrible struggles over your life with this virus, it really is an awful thing and I just hope and pray for healing and better health in your life, I can only imagine what you've had to go through. I know it was only through the grace of God that I was able to recover and get through this awful virus.
Thinking about you Jeff and as a Christian I believe that Jesus is the one who can and does conquer this virus and all sickness and illness and that He wants us well. Just grateful for His help in times of trouble, I know it's not easy Jeff.
Hoping that this year can bring breakthrough with this awful battle you've been going through Jeff, a day at a time is all any of us can do with anything we're going through. Thinking about you and definitely grateful for this forum as it's a good place to come and discuss with others when going through such a hard time physically, emotionally and mentally - others on here have been so kind and supportive and grateful for that. I will say a prayer for you Jeff.
Craig
craig07920 jen83382
Posted
Hi Jen,
Just wanted to remind you that when the virus becomes dormant in your body, it won't do any harm to you anymore and you will be fully recovered. It's hard sometimes and scary when you read or think that the virus is in your body, but it doesn't mean to say that you won't recover or feel fully better again - remember 90% + of the western world population get infected with this virus at some stage, that's nearly everyone so it doesn't mean to say people don't live full and healthy lives after the virus - that absolutely isn't true because they do Jen, thanks to God of course, there is recovery and hope for everyone on here and remember this thing does get overcome by your body, even after an extended period of months or whatever of feeling unwell (which can be normal unfortunately), and the vast vast vast majority of people, even after a hard time and struggle with this, do FULLY recovery get FULLY well again.
Craig