Mononucleosis

In My Humble Opinion (IMHO)
#1

I am wondering how many mono sufferers have had a similar experience to mine. I first got sick in July of 2012 and recovered uneventfully in less than three weeks. I was completely fine for a full year and thought that I was out of the woods. Then in July of 2013 I had the EXACT same symptoms come back. Enlarged spleen, swollen lymph nodes, fatigue, aches, brain fog, headaches etc. However, it was with a negative monospot. For this reason, my doctors figured it could not be related to my mono. It’s like I had all the symptoms, but the test would not cooperate. I was tested for everything under the sun by the doctors at my University’s student wellness center: (Thyroid, EKG, blood sugar, West Nile, ANA, HIV) All have come back negative.

I had finally come home in September after school was just wearing me out and I needed time to recover when my GP recognized it immediately as a “Chronic Fatigue post state” and said it would be 1-2 years before I was completely back to normal. I’m not sure where he got that timetable from. 9 months into it I feel the worst of it is over but the one symptom that has not gone away is the tiredness. I will be heading back to school in June and know I can handle classes, just not any rigorous activity without being wiped out the next day. Even though I am much improved, it’s just concerning me that this could last so long. Has anyone else gone through this?

#2

Welcome to the SDMB, raider19. Never having had mono, I can’t help you with that – but I can move your thread to IMHO, which is where we post discussions about medical issues. I’m sure someone will be along soon to comment on the topic.

twickster, MPSIMS moderator

#3

I had mono when I was 19. Wasn’t completely well when I went abroad and got a horrible cold/ear infection/cough/ugh. I had fatigue for the next five years or so, and still (ten years later) notice my immune system is weaker than other generally healthy people my age. If a family member and I get the same cold, it will knock me flat while they’ll still be able to function.

My disclaimer is that I only just recently got health insurance for the first time since I was under 18 (my mono at 19 was diagnosed at a clinic). Not having health insurance is a way of life - I’ve accepted my fatigue and crappy immune system and assumed it’s probably mono-related. Haven’t taken all the tests you have. Am pretty much willing to roll with sub-prime health as long as I can function. Even now that I have insurance and could access quality medical care it’s not really appealing to me. / hijack

#4

Also, for maybe 5 years after the mono I’d feel my spleen enlarge when I got sick but it doesn’t happen anymore. And I might still have more fatigue than the average person - since I got mono at 19 it’s hard to tell if it’s still mono aftereffects, depression, or just plain old adulthood.

Interestingly, the college clinic where I was blood-tested for mono initially diagnosed me as being severely depressed. The symptoms are a lot alike. And when you have a hammer, everything looks like a nail.

#5

I got mono when I was about 18. I never had a recurrance of the symptoms but I never got back to my original form in terms of the energy that I used to have. It was a noticeable decline.

#6

watergallop, are you male or female? The reason I ask is because I have read that women get it a lot worse. And being functional is all you can really ask for. Can you work full time, have a social life, and work out regularly?

Thankfully, I haven’t gotten any other illness since having mono, so hopefully it didn’t do any damage to my immune system. I noticed my spleen was still enlarging up until a couple of months ago, but the doctors seemed to dismiss this. Now I know I’m not crazy.

Isamu, how old are you now? Did you hit a “glass ceiling” as far as improvement?

#7

I’m 44 now. Yes I hit a glass ceiling, after recovery, which took about a month. I quickly got back to about 80% of my vim and vigour but never got back to the 100% I was at previously. Now I’m lower than 80% of course but that’s just because of desk job + age.

#8

That’s upsetting. Are you male or female?

#9

male, caucasian, straight, non-believer, lefty liberal, purse-carrying nancy boy.

#10

I am a woman. That’s interesting, I didn’t know it was worse for us. As for your questions… I graduated college into the recession and have never had a full time job, BUT, energy-wise, I’ve been able to pull off having 2-3 part-time jobs at the same time and a fulfilling social life (disclaimer: introvert). And probably if I found time to exercise I’d have more energy. But that’s one of those counter-intuitive truths I’ve yet to test personally :slight_smile:

I think you will bounce back. It’s probably frustrating that the doctors aren’t validating your experience of a slow recovery. For now I feel like the advantage is that if your recovery is similar to mine, naps are EXTRA DELICIOUS during this time. Bask in them!

#11

I got mono last September. Before it I was a (slow) runner. Now I’m just working on having the stamina to walk long distances. I also graduated in December and it’s been very frustrating trying to look for a job, work in my current temporary job, and just trying to move forward in general while feeling like a slug. Some days are better than others.

For the record I’m almost 40 and a female.

#12

Sticks and Scones, keep me posted on your recovery.

I certainly hope we bounce back 100%. Any more recovery stories would be nice.

#13

I know little about mono. I know a woman in her early forties who told me she had mono on her senior year of high school. She claims that she tires easily and is “sickly” because of it.

#14

I was diagnosed with mono when I was 19. Honestly, I feel like I have never fully recovered. I was okay until I was about 32, then something hit me full-force. I was told I had a re-occurance of mono at the time, but I was told later by a different doctor that you may test positive for mono if you had ever had it.

After my second bout, if that is what it was, I felt somewhat better but still very low-energy. Then I began having recurring strep infections and finally had my tonsils out. It seems to me that I never recovered from that.

I was diagnosed with sjogren’s syndrome and fibromyalgia after having the scatter test done. These are also auto-immune disorders. I feel like having my tonsils out totally messed up my body’s ability to fight stuff off. I have been super low-energy since then. My rheumatologist has me taking plaquenil, which is an anti-malarial drug. It made the difference between getting out of bed and sleeping all day.

I haven’t studied all of this in a while, but I really feel like my first bout of mono set me off on a Bad course from which I have never recovered.

Woot! I am spreading the joy!! I manage to keep a full time job for which I am grateful. But that is about all I am able to do constructively. I hope anyone else with my symptoms has better luck than I!

#15

The most common virus to cause mono is the same exact virus that causes Epstein-Barr. Epstein-Barr can be a chronic (lasting months, not days) condition, and it can recur. The virus will go dormant and then reactivate months or years later. While most of the time, these reactivations will not cause symptoms, some of us drew the short straw in that genetic lottery and will have what’s effectively a light case of mono that comes and goes, sometimes for years.

Epstein-Barr Syndrome was the disease du jour in the 90’s. Now we call it chronic active EBV infection. It’s since fallen out of favor to chronic fatigue and fibromyalgia.

#16

I got mono in band in high school. Band is a breeding ground for the worst germs. Honestly, I didn’t even know I had it, I thought I just had a bad cold. We only found out because I’d been getting blood tests every couple of months for an unrelated problem and one month I didn’t have mono and 2-3 months later I did.

Maybe it has had an effect on me, but I’ve never really noticed it. Sometimes when I get a bad cold I wonder if Mono is to blame, but I could easily just be getting a cold. I very, very rarely get sick.

I haven’t noticed being particularly lethargic beyond that stemming from my sleeping problems which I had well before I got mono. I suppose it could explain why I need closer to 10-11 hours of sleep, but I’m skeptical.

#17

Ha ha. I was in college and was convinced that I had cancer because my glands were so swollen. This was pre-internet, mind you. I was actually relieved to find out I wasn’t dying!

#18

I was diagnosed with mono when I was six years old. No idea how I got it. I wasn’t kissing any little girls, but it’s commonly known as the “kissing disease.” But I remember not feeling sick at all – I was just told I had it, then I was kept home for six weeks. I was fine after that … until I was 11, when I was diagnosed with it again despite my family having been told you couldn’t catch it twice. I recall feeling somewhat ill at the time, a little swollen, but nothing too bad. Kept home again. I think I was weak for a few months after but again nothing too bad.

#19

I had mono at around the same age as you Siam Sam****. I was 5 and was in the hospital for pneumonia. My mom never explained how I got mono and I never asked, but I suppose it’s most likely that I picked it up in the hospital somehow. I was young enough that I don’t really remember how I felt, but the pneumonia was bad enough that I was in the hospital for around a week or so. I have no idea how long I was kept home from school due to the mono.

As far as I’m aware I’ve never had a recurrence. In high school one of my friends had mono. I was the only one to visit her since I’d already had it and nothing happened. I do get tired easily, but I’m assuming that’s unrelated to having mono as a child since I’m very busy, on my feet a lot and in good health otherwise.

#20

I got mono in 8th grade in 1967. No kissing involved. My parental units thought I was going to get leukemia from it, thanks Readers Digest:smack: I remember getting huge swollen glands in my neck for years afterwards every time I got a cold/flu. They were so big I looked like Frankenstein. I also remember taking a nap EVERY SINGLE DAY after school for years, all thru high school at least.