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.