Fatigue Disorders: Mononucleosis

505190_self_portraiture_2.jpg

One common fatigue disorder is mononucleosis. Mononucleosis is an infectious viral disease that is transferred in saliva or kissing. You can spread mono to someone else through kissing, sharing food or drinks, coughing, or sneezing. The cause of mono is the Epstein-Barr Virus (EBV). EBV is a member of the herpesvirus family and one of the most common human viruses. Most people become infected with EBV at some point in their lives – 95% of adults between 35 – 40 years of age have been infected.

When children become infected with EBV, there are often no symptoms. When EBV infection occurs during adolescence or young adulthood, 35% – 50% of the time mononucleosis results.

Symptoms of mononucleosis include:

– Sore throat that is different than a regular sore throat you get from a cold
– Fever
– Enlarged lymph nodes in throat, neck and arms
– Headache
– Loss of appetite
– Extreme Fatigue
– Tiredness
– Malaise (a general feeling of being unwell)
– Enlarged spleen and liver
– Liver tenderness
– Jaundice
– Skin rash
– Swelling around the eyes

Diagnosing Mononucleosis

If your doctor suspects that you may have mono, he/she will run a series of blood tests. It is usually standard procedure for physicians to run a CBC test (complete blood count), a mono test and a throat swab culture. If the patient’s blood test for mono is negative, but they have the symptoms, an EBV antibody test is run.

Treating Mononucleosis

There aren’t any prescription medications given to treat mono itself. Pain medications can be prescribed though to treat any pain the mono patient may have if it is significant. When I had mono, I was instructed to:

– Get plenty of bed rest
– Drink plenty of fluids
– Take pain medication as prescribed

Complications of Mononucleosis

A significant complication of mono is the enlargement of the spleen. In extreme cases, your spleen may rupture, causing sharp, sudden pain in the left side of your upper abdomen. If such pain occurs, seek medical attention immediately you may need surgery.

Most people with mononucleosis have mild liver inflammation (hepatitis). A yellowing of your skin and the whites of your eyes (jaundice) occurs occasionally, usually in people older than 35. About half the people with mononucleosis have a low count of platelets, which are blood cells involved in clotting.

Less common complications of mono can include anemia, inflammation of the heart, nervous system complications (meningitis, seizures, Bell’s palsy, Guillain-Barre syndrome), and swollen tonsils that can lead to obstructive breathing.

There have been some CFS people who report that they originally had mono which later turned into CFS. I was initially diagnosed with mononucleosis and had all of the symptoms, including the swollen spleen. But was that mono or was that CFS?

Prognosis of Mononucleosis

The fever usually drops in 10 days, and swollen lymph glands and spleen heal in 4 weeks. Fatigue usually goes away within a few weeks, but may linger for 2 to 3 months.

I have known some people with mono who said they never felt good again after they contracted mono. Our former babysitter had mono when she was 13 years old and she said she never felt as though she recovered. She is always fatigued and doesn’t have the stamina a normal teenager should have.

If you liked this article, please share.
Share on Facebook0Tweet about this on TwitterShare on Google+0Share on StumbleUpon0Email this to someone

Comments

  1. I had mono when I was in 9th grade. I’ve been trying to search in my brain to see if I ever felt “not tired” since then. It’s been so long, I can’t remember.

    My friend has a sister who had mono in high school and has it again and is 6 MOS PREGNANT. Please say a prayer for her.

    My friend is concerned her sister may have CFS (or something similar) when all of this is said and done.

  2. I was told by a doctor one time that if you have mono once you can’t get it again. Anything is possible though.

    I wonder how many of us with CFS had mono at one time or another? That’s interesting.

    • Donna Lindsay says:

      I’ve had it twice and a negative spot test in middle proved it. (Fatigue follwed both cases, and I’m always tired.) Now my spleen feels like mono but it’s not. Mitral valve went nuts three times and evidently damaged my spleen, and these lasted too long causing dminished blood flow to spleen. Who thinks about a spleen going bad because of heart flutters? I do not want to lose my spleen! I’m very tired and I have been fatigued at times way too much so now I have an answer for that. Lately I’m more tired than ever (had some surgeries and 11 units of blood so who wouldn’t be tired? I’m almost 79. I hope I can just get back to my walking, gym work, photogrpahy, etc. soon. I’ll get more and regular sleep and soon add walking as my knee heals up. Hang in there and don’t overdo each of you and know you are not alone!! I have things I so want to do, but I cannot push when fatigued. Thank goodness for photo work and handwork (knitting and embroidery). I also LOVE music.

    • Jennifer Comeau says:

      Mono is an illness caused by contracting or carrying the Ebstein Barr virus, which is in the Herpes family. So, if you understand herpes, you can understand Mono. Once Ebstein Barr is contracted, you will carry it for the rest of your life. Can you contract it twice? No, But it is likely to have multiple outbreaks of Mono, some with weaker symptoms, some stronger. If a patient is elderly or has other health problems, the outbreaks can be magnified.
      If this is still confusing – think about HIV and Aids on a much smaller scale.

      • Juliana says:

        I have to much to say but I can’t seem to get in lost my pass word haha. There’s a plasma exchange research going I need to tell this humans that are suffering as I am. And the research is blood $500 plus. Am sorry late can’t sleep and can’t think.

    • I had mono when I was 19 (in 1973). I had it again in 2007, 2008 and again in 2010. After each case I have had to decrease my working hours; from 40 hrs a week to 20; from 20 hrs/wk to 12 hrs/wk. I have read of many who have had mono more than once. My dr was hesitant to consider this CFS. Lately the brain fog, clumsiness, etc has greatly increased. I may have to see him again. I am a pianist and sometimes when I sit down at the piano I am disoriented and have difficulty playing music I know. Just wanted to leave a comment about having mono more than once. My dr called it “reactivated.”

  3. This is a good post. I had mono when I was in high school and didn’t recover fully for almost 8 years.

    I am convinced that my chronic fatigue was mono-induced. Every time I would see a dr. for my fatigue the bloodwork indicated that my immune system was compromised and eventually I was diagnosed with CFIDS.

    Personally – I always referred to it as chronic EBV – or Chronic Mono. I would have good seasons, and really bad seasons.

    When I was diagnosed with mono…I pushed myself, hard! I was in high-school and didn’t give up sports (or partying). I never took a break despite being exhausted.

    Now, when a friend tells me that one of their children has mono I beg them to make the child slow down. After 8 years of struggling with fatigue…the “kissing-disease” is something to be taken VERY seriously right away.

    Alright…off my soapbox. I love your blog!

    • Jennifer says:

      I was just told I have high EBV levels in my blood. I remember getting mono in college and never feeling the same since. I too have been told it stress or in my head. I’ve always known something was wrong, but I actually never linked all my symptoms to the mono. I have extreme fatigue without a lot of sleep, head pain and shoot nerve pain in my arms. I also began suffering from acne when I got mono in college and that also has not resolved itself. I had no, or very minimal acne prior to this- and no history of acne in my family. I am now 31 and still dealing with all of these symptoms. I want to feel “normal” again. I want my body to work like everyone else’s. I always would tell me that I remember what it was like to feel “normal,” that’s how I knew something was wrong.

      Sandy, you said you recovered after 8 years? How did you do this? I am reading all sorts of advice online about taking high vitamin C doses, along with other vitamins. I’ve always taken vitamin C daily since I got mono because without it I will get very sick again.. throat infections etc. But perhaps I was not taking enough vitamin to really put this virus into remission. What did you do to recover??

  4. I was diagnosed w/ mono in June 2006. Six weeks after the birth of my second son. It was awful. Almost two years later I still feel awful. I will have periods when I feel okay, but I just don’t have the energy I used to have-and I was a very active person!

    I have been to all kinds of doctors. Been diagnosed w/ CF, mitral-valve prolapse, as well as dysautonomia. However, I still feel like something is just not right! My family dr. says it’s just the stress and anxiety of children. It’s not!! I know my body.

    Right now I am completely fatigued and have this tightness in my chest and throat.

    I know I keep pushing myself, but I have to live my life. I feel like I have already missed out on two years of my children’s lives.

    Anyone with any idea what this is or how long mono can last…please help. I feel so depressed and hopeless
    Thank you.

    • Stacy Alvarez says:

      Your chronic fatigue is most likely from your dysautonomia. Which dysautonomia do u have? I have POTS and CFS. All of this started with a mono type virus. I had strep infection 8 times in a 6 month period.

    • Nancy Olson says:

      I’mreplying to a message that you put up in 2008. This is 2016. You’ve probably figured it out by now, but if you haven’t I was in the same boat as you are. Or should I say I am still in the same boat. I found a support group that has been absolutely awesome for me. I’ve been told the rheumatologist will test you until they can come up with exactly what kind of strain of mono or CFS that you have, then you can treat it properly. I’ve been told there are at least 500 strains of mono and chronic fatigue good luck.

    • Am sorry I have 3children. When my youngest was 2 yrs. old I was so busy as a Personal Triner volunteering, going to school and taking care of me and my family. I was doing to much and although my nutrition was excellent my stress was high and for me that was normal. Well I guess my body had enough and when my ammune was low it got me and am not a person that gets sick. I had chicken Pox at 21 it was awful. Now as we speak I am a yoga teacher, Trapeze teacher and personal trainer. Not able to do my job or workout at the moment. There’s a great book I just purchased on mono and how to nip it true certain foods… Mono feeds on bad chemicals that enter your body like in your spleen, liver even kidneys, is an opportunist. But ai never give up! Even if is a good bike ride I force my self with my, I do traction on my Trapeze and strength training and I was a sprinter. Don’t count on doctors helping you, this is a great site. Remind me to give you the name of the book. Am starting his way of life after mono when I get back from Spain…continuing education. I don’t feel good as we speak and my doctors told me to cancell my trip they also told me the same when I was going tru Yoga School and why would I stop my life? Off course I listen to my body and heart.

  5. Mamaforlife says:

    Hi.. I know what you mean… I was diagnosed with mono a few months ago and life has never been the same… no energy, no family support as everyone attributes my fatigue to depression. I am not depressed…just really frustrated as I was really active before.. Now I can barely make it through the day…

    How does one get checked for CFS?

    • I had mono has a child and was one of the most active persons around. Every time that I am fatigued and exhausted or not feeling good they draw my blood and my EBV is off the charts. My daughter who is a full time athlete was getting run down and sick a lot so I demanded blood work and sure enough it showed that she had had mono in the past and was not treated. Now everytime she feels this way which is quite often due to sports they run her blood her EBV is off the charts. The doctor suggested Valtrex which has a way to help with the side effects of individuals who suffer from the long term effects of EBV. Has anyone tried this before?

      It does seem when she takes a zpack it helps but only short term.

  6. Winn, I believe it can take months to recover from mono and from most people I have talked to who have had mono, they never feel the same again. They find that they fatigue easy and their sleeping habits will increase.

    I really believe that mono & CFS have a very close connection and wonder if they are not one & the same, just CFS a manifestation. If you are having trouble dealing emotionally with the illness, I would recommend counseling. It is amazing how much just talking to someone who won’t judge you can help! You can also come to my forum at http://www.fightingfatigue.org/forum and talk with us there. We would be glad to have you!

  7. Mamaforlife,

    I’m sorry to hear of your struggles, too. It is really terrible to deal with illness when you do not have family support.

    You can click the link below to take the CFS assessment:

    http://www.cfids.org/about-cfids/do-i-have-cfids.asp

    I would then recommend finding a doctor who specializes in CFS to make an appointment with.

    I would recommend that you too stop by my forum to talk to others there – we won’t judge you!

    http://www.fightingfatigue.org/forum

  8. Joanie THompson says:

    Winn, Please don’t feel so discouraged. I know what you mean when you say your body just doesn’t feel right. I was diagnosed over a month ago with mono and it has been the most difficult illness I have ever had (58 years old). The mono affected my liver and caused my liver enzymes to be elevated. The hardest part is the fatigue. I hope you get better.

    • I am 52 and have been in bed most of 3 months with mono. Has anyone heard of mono is more severe in adults over a certain.age? Joanne Thompson, how long did your last?

      • Y es, I have heard it hits hard in older adults. I was diagnosed with cmv mononuclieosis over 9wks ago and am struggling to care for my kids and just perform daily tasks. I am a single mom 44 y/o with no family around. Toughest sickness I have ever dealt with. Fatigue, heart palpitations, difficulty breathing, difficulty sleeping, brain fog, dizziness, nausea and rash to name a few! I have been taking key supplements that help my immune system fight this herpes virus that is often not thought of as a major illness. It is. It can affect every organ in your body for months or years. I am feeling slow progress everyday and I try to stay positive. I stretch everyday and practice breathing techniques. I will hang in there and get over this but yes it does hit harder in older adults.

        • Rolane, I just found this thread. Looks like we got hit with illness about the same time. How are you doing? I contracted Cytomegalovirus (CMV), which also causes mono, in Dec, 2015, at age 48. It has been a nightmare. Basically 6 weeks of being really really sick, then fatigue and low grade fevers since then. I have been given flexeril to help me sleep (5 mg), and it works pretty well. I have good days – but when I feel better I always seem to do too much and then I’m slammed with fever, aches, fatigue, and brain fog for days. I’ve gained weight because my exercise routine stopped … I found it was either exercise or do basic daily tasks … I can’t seem to manage both. But I hate being overweight and feeling like I can’t do anything about it. When I have a few good days in a row, I get so do so down when I get hit with fever again. I also take Prozac, which helps, and lots of nutritional supplements. But I really just need this to end. I want my life back! Anyway – hope you are on the road to recovery.

      • I am 13 years old and have mono, my mum had mono in college and then was diagnosed with cfs, and I feel like the same will happen to me. On weekends I can sleep up to 20 hours a day, only waking up for food and maybe a walk. I went from being incredibly sporty and a very active lifestyle to being stuck in bed, I still go to school but I fall asleep in every lesson

      • I had a severe case of mono and almost died from it. I was only 19. They were ready to do emergency surgery to take my gall bladder and spleen out. I got told if I didn’t get better I was going to be put on the transfer list for a liver. I luckily got better but I am always tired. My left tonsil is always swollen and I got told it will never go down. I work third shift and sometimes I am so tired I can sleep for 15 hours out of the day. I also notice I get tonsillitis every year now too! What my doctor recommended me to take vitamin D3 and iron when I am starting to dip. It helps the problem. I would check with your doctor to see what they can do.

      • Yes am a bit younger 45 but it got me at 38 yrs. of age and I thrive on physical activities! I just came positive for mono very high accuse, the accuse is gone. I am not the same. Am so sad because I feel so tired, nervous system that was the first thing I notice when I first got it, everything seems like one big chore even brushing my teeth but I push my self to do small physical activities and time with family. This time around vertigo hit with an extreme pressure in my sinuses but no infection and my left ear hurting, noise bothers me and bright lights. I have a chronic fever since it got me again in 2017. Doctors are clueless. Am a bit scared as I am loosing weight fast and my muscles mass. All they want to give you is sedatives. If I need energy and uplift mood to clean house sometimes Inam guilty tomsay Tramadol get me going and might not take my pain away but it make you happy with energy. Not a cure for sure. Am sorry you are going tru this, it does get worse the older we get, the symptoms that’s is not life, life is kind of a struggle but I am lucky I have good support and love and live on the beach very soothing. Remember I make my self get up go outside and at least soak up sun for 30min.

  9. breindie says:

    two years ago i was diagnosed with chronic mono. i, like so many have described, was a very active person until then. now i am 60 yeas old. sometimes i feel 6,000. sometimes i get up in the morning with energy, and then take a shower and want to rest. i have had acupuncture treatments for many months and felt they help. my doctor says i no longer, according to my tongue, have mono. on the other hand, i am so tired. i sleep at least 10-12 hours a night, and still push through the days. it is insane. also, it seems my nervous system was effected, making me shaky. i do yoga and meditate. then, i push down a coffee, maybe two, i know that’s bad, but i just want to jump start the motor. i wonder, will this fatigue ever leave?

  10. sickandtired says:

    I am a 43 year old who has been fighting this for the last 3 to 4 years, My doctor I think deals with me, but does not help me. I have a adhd 9 yr old child who is extremely active and I cannot keep up. I barely have the energy to dress him in the morning. If this does not get better and someone comes up with something to give us our strength back, I don’t know how I am suppose to deal with the rest of my life. I can’t do dishes, pay bills, clean house. It takes all my strength to dress my child for school and me for work and for me to get to work on time. I am always late and always calling in sick because I cannot get the energy to get up and go or I just feel so bad. I have not dated in 2 to 3 years (can’t even remember how long anymore) life is really sucking here due to this crap.

    • I totally understand what you are going through. I have canceled so many appointments and made up excuses that make me feel terrible – I’ve never been a good liar. I wish I had a suggestion. I have a psychiatrist who started treating me for depression and then ADHD, so now I have stimulants and they are my lifeline. Even with them, I only have a few good hours a day. I have two teens and I feel like I am not the mom that I wanted to be. It’s okay though, just keep doing your best. If you can, enroll your child in activities, hire a housekeeper, do what you need to do to get through. The job part is very hard. I’ve left a couple of jobs that were just too much, and I can work less than 40hrs at my current job, which helps a lot. I bought paper plates to help with dishes and I don’t cook at all anymore. Warm thoughts your way, I know it’s so hard… just keep doing what you can.

  11. Hey ladies,

    In Feb. 2005, I had a really bad cold, next thing I knew I felt pain in neck- all over but especially in the back of my neck. Then I noticed a large bump on the front of my neck. It scared me into seeing just any doctor. We were new to the area and I hadn’t picked a primary yet. I was in excruciating pain and had a multitude of symptoms.

    Long story, but I saw over 15 doctors. I had multiple tests. Not sure if they ever did a mono check. My own research revealed I had thyroiditis and the virus known to cause it is Epstein Barr. No one ever checked my EBV levels even though I requested it. It wasn’t until AFTER I had my right thyroid out as a desperate attempt to fix the problem, that I realized there was something else too. My new doctor did a complete bloodwork and checked ANA and EBV. The ANA was borderline high and the EBV was high. They said I had mono. But this was a year after the onset, so I knew that couldn’t be right. I had the EBV checked again a year later and it was still high. Now, I’m told it’s CFS.

    Seems like doctors just don’t know what to call it. So, it’s been over three years since the onset and I’m still struggling with swollen painful lymph nodes, sore throats and fatique. I even get a stinging feeling deep in my skin when I move around. I haven’t read anything about the skin feelings but I’m guessing that’s part of the EBV.

    I read recently that Valtrex has shown promising results in the treatment of EBV but more studies are needed.

    I’m really hoping they find a cure for this. I too, want my life back.

  12. danielle says:

    Hi there,

    Just found this site. Very happy to hear I am not nuts! I contracted mono when I was 14 (26 years ago)! Misdiagnosed by 5 different doctors. I did not catch it from a boyfriend but rather smoking puffing on the same cigarette with my girlfriends behind the school. Please note that there were several cases reported that year in my school and the school covered all of the water fountains. Please warn your children when drinking from public fountains.

    I have NEVER recovered from the sleepy symptom. I agree with all of you that it is linked to CFS. I am tired all the time. My husband calls me lazy and my children can not understand why I am always so tired. I have also experienced the “stinging” in my limbs but it comes and goes. I did see a doctor over this and a psychologist. I thought it was depression. Can you believe they both said that I needed rest! The psychologist gave me a sleeping pill! I am just so sick and tired of being sick and tired. Thanks for posting this.

  13. I have all of the symptoms of mono right now and I went to the doctor today and instead of testing me for it he just gave me some sore throat medicine and said that if it didn’t work to come back because mono has been going around where I live….But I am a cheerleader at my highschool and we have practice tomorrow and if it is mono then I shouldn’t be active until I’m better again. The worst part of this whole thing is that like some of you have posted that my family keeps telling me that it’s just a sore throat and that I’ll be fine but I’ve never felt like this before I know there is something wrong with me besides a sore throat whether it’s mono or not!!

  14. Hello Everyone,
    I’m so happy to find people that feel the same way I do! When I was 13 I was diagnosed with mono. I had to miss the last part of school and eventually was able to return to moderate activity. I never really felt the same and had recurrent bouts with doctors. I was told that I had chronic mono. Of course when I was younger I wanted to hang out with all of my friends. It was not easy. I could never keep up. I went home everyday for nap time. Still to this day (I’m 22) I am exhausted! I am not active like an average 22 year old. Sometimes I feel ok but not how I think I should feel. Other days I am lucky if I can just make it through class. I think about all of my friends lives and they do things. They can spend a week traveling, go to school, have jobs, hang out with friends, and not even be phased. Im scared to death of the 12hr shifts that face me in the new career Im about to start. There is no way in hell that I can stay awake for 12hrs straight especially doing things that are both mentally and physically demanding. Its kind of joke with all of my friends that Im lazy or that I have fibromyalgia but I know that something is wrong and that normal people dont feel like this! I just want to have enough energy to live my life. The problem is that I dont know how to get there. I have been on antidepressants, done the whole exercise routine thing (which I believe did more harm haha it hurts BAD),and I get plenty of rest (still have a daily nap time). I just am getting really tired of being tired!!!

  15. I totally relate to what everyone is saying here. I had mono the 2nd half of my senior year (11 years ago) and I have never been the same. I caught it from drinking after my sister who had it. (I didn’t know that at the time.) Now I have to take naps whenever I can which is hard b/c I work full-time. I look forward to my naps so much. I did notice however that when I did a colon cleanse and a whole body detox I felt a little more energetic. The cleanse helped rid my body of some yeast too which I read is connected to CFS. All I know is mono changed my life forever even though it’s been several years since I’ve had it. I don’t think people take it seriously enough. Now I feel like people just think I”m lazy. It really affects relationships adversely.

  16. When i was 16 i was told i had borderline mono.I came in with the sore throat,feeling fatigued and just the plain feeling something wasn’t right with my body.I still have the tingling in my limbs mostly in the wrist and the occasional muscle twitch witch all started around that time I even still get fatigue.I am 30 now, and have had every test in the book and all where negative.So I know how you guys feel doctors should be more concerned with this virus.(ps thanks for the posts at least i know im not crazy lol)

  17. Did any of you feel very tired and unwell for months before the sore throat symptoms started? I am 19 years old and was diagnosed with mono in November, however I have been feeling very tired and weak since July. I wonder if it’s possible I had mono even before the sore throat symptoms showed up in November? I have been tested for so many things, have had so much bloodwork lately but the only things they have found is mono and high ANA. Now that I am over the sore throat symptoms, I still feel very very tired. My family is starting to get annoyed with me for complaining about it, but I really get the feeling that “I will never be the same”, as some of you describe.

  18. Well Ive had mono for about 4 months now and JEEZ, the fatigue does suck…But I have noticed that I go to sleep at nite so much more easily lol….if it goes on forever i guess its not the worst thing in the world….I’ll tell ya tho, I dont think ive ever consumed so much dang coffee

  19. Wow… I just went to the doctor again for trying to figure out why I am so tired. I understand how you guys say it affects your relationships. I have to try so hard to stay awake and get less sleep than normal just so I can try to keep up. I had mono almost a year and a half ago, and I don’t want to be tired for the rest of my life. I am only 23 now and I feel like I dont have as much energy as I should.

  20. Brittany Rose says:

    I went to the hospital today, and i was told i have mono. im 17, and six days ago a doctor told me i had a double ear infection, but the hospital said today my ears look great. Its very painfull to swallow, and i am super tired. I dont know how long i should stay out of school, my parents want me to go to school tomorrow! They just said “well just dont lick, kiss, or hug anyone”. Then they said you really can only miss a few days tops. I noticed when other people have mono, they are out of school for about a couple weeks. Im afraid they will make me go, and i wont get any better, or that i will give it to someone else, i think my boyfriend is going to get it, so i already feel bad about that.

  21. TiredofTired says:

    Wow… good to find this site, I thought I was all alone in the world! I was diagnosed with mono in 2001. I slept for almost 8 weeks straight and woke up 34 lbs heavier… it was bizarre!

    I feel like I have never recovered. I can’t lose this weight no matter what and I get these bouts of fatigue (like I am presently experiencing) that are just debilitating!! I can’t even talk without a struggle.

    For years everyone would say, “Get out and go for a walk, you’ll feel better!” And I can’t. If I overdo it, if I do any type of physical exercise, I am down for another week. I am so tired of doctors calling this depression. I am so tired of feeling like it is “me” like I am some lazy person who every 6-9 months decides to sleep for 2-3 months. 🙁

    My white cell count is always high when I get like this and so is my SED rate. After going to the every single specialist that my PCP could think of (and being treated like I am a hypochondriac), I am just dealing with it. But it is terrible to be so dang tired that you can’t even function.

    The last doc was a rheumatoid doc. She said she suspects something like “Chronic Lymphocytic Leukemia.” I thought she was cracked for suggesting such a thing, but when I asked my PCP, he said it is a good possibility with my bloodwork and symptoms. But I don’t buy it. I think it has to do with EBV and that mono episode.

    I would have to say the worst part of such debilitating fatigue is that there is no excuse for it. There is no “name” for it. Thank goodness I don’t work outside of my home office, or I would have been fired a dozen times now.

    Good luck to all of you! Thanks for letting me vent.

    • If you are experiencing sleep spells that last 2-3 months at a time you should look into Klein-Levin syndrome (i think it’s called).

  22. Hey everyone. I’m glad I found this forum because I was starting to think something was really wrong with what I was feeling, but I am starting to think it’s all part of mono. I am 18 and in my senior year of highschool. I was diagnosed in January 2009 and I’m just now getting over many of the symptoms. My head throbs a lot when i get up and I guess it is due to the lymph nodes in the back of my neck still being irritated.

    If this helps anyone I had my first blood test during this time to test for mono and it came back negative. My doctor said it can be a false negative and decided to test for something more specific (the epsteinn barr). If you think you really may have mono, i would suggest to the doctor a more specific test.

    recently I have felt incredibly emotional. I have feelings of wanting to be alone and just keep to myself all the time. My mom says its just a side effect of mono and that people normally feel cases of mild depression. I cried like three times today it was ridiculous.

    I started feeling better and thought I could go out and do things, boy was i wrong. It just makes you feel worse and even more depressed. It is kind of hurting my relationship with my boyfriend because I get irritated around him and I just don’t ever feel up to hanging out. I hope this doesnt last forever.

    I hope we all get back to normal. Stay tough and I am praying for all of you!

  23. Hello everyone. I tested positive for mono back in Dec 2007. Ever since I feel tired off and on. I can be full on energy one minute and can then find myself very tired for no apparent reason. I am almost wondering if I need to go to the doctor. I am not pregnant. I am 23 yrs old. I am not sure what to do at all. I dont have insurance either since I am working through a temp service. I dont want this to effect the job I am trying to get but when I start to feel tired everything slows down. Should I tell my potiental future employer about what I was told I had two almost 1yr 1/2 ago? Please any advice would be greatly appriciated.

  24. Suzanne says:

    So glad to have found this site. I’m home sick yet again and feeling like the biggest wimp in the world because I seem to catch everything since I had mono 2 years ago. It seems like I’ve not had full energy since and and I seem to catch anything anyone else has now. It’s tiring. Interesting reading that Katy has head throbbing, too. The back of my head has been throbbing a lot the last month – just told my husband about it last night and now he’s worried about me.

  25. We’re doomed.

  26. I too suffer from fatigue and my doctors can’t find anything wrong. I get frustrated every time I tell them about it and I can tell they either don’t take it seriously enough (I look healthy enough) or they don’t know what to do or, what annoys me most of all, they think that it’s caused by depression. “Have you tried Wellbutrin?” “Yes, I have.” I know it’s not depression.

    Anyway, I’m about to give up on finding any treatable diagnosis. “Chronic mono” doesn’t help anyone, since it can’t be treated. “Chronic fatigue syndrome” is the same as saying “we don’t know why you’re tired and can’t do anything about it”.

    Maybe the best I can do is be pragmatic and try anything that helps lessen the fatigue – like Ritalin – and just count my blessings.

  27. Stizzle says:

    I’m so glad I found this website. I was diagnosed with mono in September of 2007. It’s currently May 2009 and I feel incredibly fatigued every day of my life. Sometimes I get up for work, shower, get dressed, and then call in sick because I can’t fathom the idea of expending any more energy that day. I’m a teacher, so I’m expected to be “on” all the time. Sometimes I feel like driving home in the middle of the day and having a nap, but I can’t. On the weekends I sleep up to 14 hours a night and then take additional naps during the day. My roomates think I’m lazy. I’m 25 and I can’t keep up with my friends like I used to. I don’t belong to any online social networking sites because I think they’re ridiculous so I always feel out of the loop too. If I am out with friends, I almost always leave early because I can’t keep my eyes open. If I’m invited to a party, I usually pass it up because they usually don’t start until 9:00 or 10:00 and that’s my ideal bed time. I had to give up a volunteering job that I loved reading to blind people because it was just too taxing on my mind and body. I don’t take alcohol or drugs, but the only thing that seems to get me going these days is the occasional cup of coffee. I’m a vegetarian and I cook almost all of my own meals. I take vitamins every day. I exercise. Nothing seems to work. I have read all of your posts, and I feel everything you’re feeling. My doctor says it’s stress and has prescribed an anti-depressant and sleeping pills, but trust me, I have no trouble sleeping!

  28. Reading this site really helps! I have been getting so incredibly frustrated lately at how little my body is cooperating. I have always been able to go on little to no sleep, lots of physical activity, and been able to eat whatever I wanted without gaining a pound I’m female 6’2″. While in college I took full course loads, exercised horses 2-3 everyday, had part time jobs, worked up to 6days a week night shift- which left little time for sleep, but I never needed it– I’ve always had an amazing amount of energy was in sports throughout highschool etc… After graduating (that summer in fact) I landed my dream job salaried employee and everything managing a horse farm! I would get up at 5am and work until 11p or later; we had alot of staff turnover so there were months where I didn’t get a day off and was doing this seven days a week! Then in the winter (08) I started getting more tired and was needing more sleep it seemed every other week I was battling a cold and taking days off then it turned into every week. I’ve also had a history of depression(but always been able to push through it and work nonstop) so I figured maybe it was that creeping up again, but there was really no reason for it since everything in life was absolutely wonderful. I also started gaining carzy amounts of wieght and put on 25lbs. So for my new years resolution I vowed to take it off I started going to the gym twice a day everyday (on top of working 10-12 hrs at the farm) switched to a vegan diet- mainly salads and lost 15lbs gradually switching to a raw vegan diet. I was still constantly getting tired and sick and taking sick days on a weekly basis. After a week of going raw I got really sick (your supposed to —detoxing) it was misdiagnosed as strep and a severe allergic reaction (face/eyes swollen shut) After a week of bed rest I was supposed to start work full time again, the night before I couldn’t sleep and had shooting/stabbing pains in my legs that would take my breath away. Went to the dr’s in the morning and although they couldn’t figure out what was wrong with my legs they did find I had mono. I was bedridden for ever and on top of it had to manage the farm and lunge horses etc… plus everyone thought I was taking advantage of being salaried, it sucks!!! I gained back all of the weight I’d worked to lose. I’ve kept to the vegan diet all I drink is water or herbal teas no coffee no caffiene, Am 80% raw. Went home for vacation for a week and only ate salad and fruit completely raw and gained 5lbs!!! How is this possible ??? I have never had a weight problem I have now resumed work at the farm although I have to take constant breaks take naps every after noon and am always tired. I eat super healthy, ride 3-5 horses a day, do a ton of barn work, plus have added the gym back in mainly weights to get muscle back for riding and am not losing any weight. I am super tired and even more tired and frustrated at being tired all of the time. I feel like people think I am fat and lazy now, I get self conscious whenever I eat and none of my clothes fit anymore, on top of it I feel like my body is falling apart- tired always. I know that its only been a few months but it feels like a life time I am going to start seeing doctors, but needed to unload it all on someone who might understand. Because I am not used to having to take naps all of the time- asking for help, relying on others. I just feel like a failure right now!

    • Go see an endocrinologist and have them check for thyroid disorder. There are many, but inability to lose weight (no matter what), fatigue are two symptoms of hypothyroid issues. Think, energy and vitality relate to thyroid function.

  29. I too have the same fatigue you all are talking about. It all started when I was diagnosed with mono 3 years ago, the fatigue never went away, after about 3-6 months the doc said I no longer had mono, yet I still had the symptoms. About a year later I was so exhausted I asked him to test me for mono again, and he said again I had mono. Im also positive for the EBV. This really sucks. Im 29 now and can barely make it through the day. I have pain in the back of my head and now my shins and feet are killing me to stand up. I usually dont feel too bad my first hour that I am awake, but after being up for an hour I want to sleep again. I noticed when I get really tired my heart races and if I try to stay awake im dizzy. I have a hard time driving also, I seem to space out really bad. One of my doc’s gave me dexadrine, and adderal. Those used to help alot with the fatigue, but seem to not work after a while, and makes me very nervous and sweat alot. So I dont use them anymore. I dont know what else to do. It is almost 2010, you’d think they’d have the technology to cure things like this. If anyone knows of anything that works, please post it!(ive tried everything I think)

  30. I had mono every since i was a little girl like 8 now im 19 i been suffering from this disorder for a couple years it comes and goes but i am always tired and taking breaks from everythin im doin its so sad that i cant have a normal and engery life like everyone else everyone is always jumping around when im the one always saying that im so tried all the time im so happy to have people like me out there tha that have the same thing. i has this thing for about 12 years u can say and i dnt even knw how i will be without it i wish there was somethin that we can take for not being so tired im just so sick of it i hope they have somethin out there that will make us mre active becuz im always pushing my self to do things i mean i get so tired of cleaning my room image how i have to clean a whole house this is just not fair!!!

  31. I knowm it sucks, i had mono last year and still dont feel %100 myself. and what i hate even more is my boyfriend doesnt believe im fatigued because of mono. he says im too skinny and dont work out like i should and thats why i dont have energy. if i had the energy i had a year ago i wouldnt take it for granted, id walk my nephew around the block 6 times and then take him to an amusement park and never want to get of my feet. im sure our day will come and well feel like ourselves again. everyones case is different so dont get discouraged by what other people say.

  32. I’m so glad to find this site! So I was diagnosed with chronic mono about a year and a half ago. Slept for 20 hours everyday for about 2 months. Gained 40 pounds! I am so glad to hear I am not the only one who has gained weight. Everyone says that is weird you should loose weight with mono! What do they know. Now i cannot seem to feel okay EVER! About 3 weeks ago I had to miss 3 days of work because I would get up take a shower and needed to go back to bed. Doctor’s said it was just a viral thing. Fever of 100 for those days. Tested me for strep, but that came back negative. Said to come back if I wansn’t feeling better in a couple days. So I felt better and now I am sooooo tired again! It is this off and on thing and I CANNOT take it anymore. NO, I am not depressed! Perfectly happy!

  33. Finally, people who understand how I feel. I’m a senior in high school right now and I was diagnosed with chronic mono this last September. My fever and sore throat were gone after two weeks, but ever since then I’ve been so exhausted that it’s insanely hard just for me to get through the day. At first, my parents would let me sleep in late and then go to school, or go to school and come home, but after a month of scattered absences and lates they began to tell me that I was lazy and that I needed to buck up and go to school. My mom even threatened me with my college money next year, asking me what I was going to do when I had classes in the morning and accusing me of being lazy and not focused enough. It sucks, because I was such an active teenager before this sickness, heavily involved in everything in my school’s music department, and a top grade A student to boot. Since my mono I’ve had to drop Show Choir, and my grades have been slipping. I’ve been really pushing myself to try to be the energetic, happy, take-on-the-world person I was before this, but it’s so hard to get myself out of bed and out and about for more than twelve hours before I need to conk out again. My family thinks I’m being overdramatic and lazy, and my boyfriend is getting irritated by how often I just want to sit at home and do nothing, or even sleep instead of going out. Will this ever go away?!?

  34. The one of mononucleosis’ complications include spinal rupture and an inflammation in the heart muscles (myocarditis), so medics often recommend to avoid sports for a least one months after the symptoms disappeared.

  35. Thanks for the post and the website. I was diagnosed with mono about two months ago and all the acute symptoms were out within a week except fatigue. It sucks so much i am always out of energy.
    I am getting heavier ’cause i don;t get the energy to work out. I used to spend hours in the gym every single day. Now i would be lucky to last a set or two. I guess it is still early for me, but it is an easier pill to swallow knowing that tons of people had to endure this weakness for years.

    I wish the best for all of us.

  36. Salutations to all, ;), I feel with all of your guys’ pain, but to make a very dreadful long story short of what I have went thru after getting sick about 2 yrs ago, diagnosed with thyroid, chronic fatigue, epstein barr, adrenal insuffic, you name it, on top of that severly anemic. I went to many doctors, and they either have no knowledge or refuse to treat people bec there is more money for them the sicker we get. I believe the second theory due to having that experience. You pretty much have to use the net and treat yourself. It is all curable, trust me. I did not believe any of what they told me, and it ended up I was right. It was just an imbalance in the body.
    If you guys really want to cure yourself, search, read, and find on the net everything that has to do only with HOMEOPATHY.
    All of our symptoms are due to vaccines, toxins, stress, wrong meds, wrong diagnoses, etc, etc,. I know if any doctors see this will not like me saying it, but all of the imbalance can be cured, not helped. Thyroid, adrenal, epstein barr, diabetes, trust me. But you have to do it all by yourself or find a very good QUALIFIED HOMEOPATH. AND, THERE ARE EVEN SOME THAT CAN HELP YOU ONLINE, JUST SEARCH AND BELIEVE. I WISH YOU ALL A GOOD AND HEALTHY JOURNEY TOWARDS RECOVERY. I AM ALMOST THERE, AND BEING A SINGLE MOM OF 3 TEENAGERS, I SURE NEEDED IT. OH BY THE WAY, THE DOCTORS I WENT TO TOLD ME, “I DONT KNOW WHATS WRONG WITH YOU AND WANTED TO PLACE ME ON DEPRESSION PILLS’
    THAT IS THEIR LAST RESONT WHEN THEY REFUSE OR DONT WANT TO TAKE THE TIME TO CURE YOU. YOU MIGHT NOTICE THAT I USE THE TERM CURE, NOT HELP. PLEASE, USE THE NET AND READ ALL YOUR AILMENTS UNDER HOMEOPATHY AND I PROMISE YOU, YOU WILL BE TOTALLY CURED.
    BY THE WAY I HAVE NOTHING TO GAIN RECOMMENDING HOMEOPATH, AM NOT ONE, DONT SELL THEM, BUT THEY DID BRING ME OUT OF LIVING A LIFE ALMOST DEAD, NO LIFE, NO ENERGY, NO JOY, YOU NAME IT. THANK YOU FOR READING AND GOD BRING YOUR WAY THE RIGHT PLACE THAT WILL HELP YOUR HEALING. o.B.

  37. Wow! I just cannot believe that I’m not crazy! I’m so sick and tired of my family and boyfriend telling me I’m fine or I’m depressed or I’m making my self sick! I got mono 2 years ago. I’m 20 now. I always wonder how my friends can go out and party all night till 5 in the morning and get up for work the next day. I’m always sick. Atleast every 2 months I have a sore throat. This time its really bad again though. My neck is killing me along with my head. My throat is killing me and I am so tired. I have been sick for going on a month now. I have been to the doctor twice. First they said I had strep throat (although they didn’t test me for it). I was put on a double dose of antibiotics because I was not getting better, then when I went back they still didn’t do any blood tests even though I asked them to. They said to come back in 7 to 10 days if I was still feeling bad! Who the hell wants to wait 7 to 10 more days when they have been sick for 2 years! What the hell. And everyone keeps telling to shake it off and your just deporessed and blah blah. They don’t understand. And it is very testing on relationships cause my boyfriend dnt understand. He is to the point that he just gets annoyed and roles his eyes when I say I’m not feeling well. I’m sooooo sick and tired of being so damn sick and tired. People think we like being sick and having to stay behind while everyone goes out and has fun! Uh NOOO! We just can’t help it! Well thanks for letting me vent to you all. Nice to know I’m not alone in this.
    Jewels

    • Hi Jewels, It is not in your head. Just tell the ones that keep telling you to “shake it off” to read my website. Please keep reading here. You will continue to realize that you are not alone.

  38. Finally! The doctors are running tests! I called them tuesday and told them someone needs to figure out what’s going on so that I can live a normal life…sometimes we gotta be pushy to get what we need! So anyway my first test is tomorrow! Can’t wait. We will know in 3-7 days so ill keep ya posted!

    Jewels

  39. My boyfriend and I caught mono at 36 and 43 (in the present). What we can’t understand is why there is not enough information out there in schools, work places, etc. that informs people ENOUGH about how easy it is to catch this disease?????? SERIOUSLY it’s still running around EVERYWHERE!!

  40. I was diagnosed with mono 2 years ago, and I have never been the same. If I exert myself like taking my dogs for a long walk, it totally exhausts me and it takes the next 2 days to get over it! I always feel tired, never rested, achey and just not well! My doctor thinks it is my weight, but I don’t think so. I have never been like this in my life, and I mentioned CFS, but he didn’t think I had that. But I have done research on my own, and I fit the criteria to a T. It is refreshing knowing that so many others feel just as I do. It is frustrating though that we can’t get any help?!! I had to quit working full time as a result of this. I was always exhausted and just couldn’t keep up. So I guess it’s all in my head?? I don’t think so. Sorry to sound so frustrated ,but I am!!!!

  41. I’m so glad I stumbled upon this discussion- I’ve been going crazy. I was diagnosed in mid-July and though I don’t have the pain in my spleen or fever anymore- I cannot escape the fatigue. I feel like my husband, friends and family all think I’m just beating a dead horse when I constantly blame being tired or sick on the mono- but it is almost constant. I may have an hour or two a day where I feel almost normal, but that’s about it. I’ve also become super weak, carrying a gallon of milk is a chore and my hands shake, it’s even hard to clench my fists. I’m 24. It’s been 4 months, I just want to feel healthy and normal again!

  42. Omg I had mono when I was eight years old and the doctors could not figure out wat it was for the longest time. Even now, six years later, I have bouts where I get so fatigued that all I can do is cry and sleep. Stay strong, fellow mono-ians! And sleep well;)

  43. Hi, I just got diagnosed with epv and mono. The whole last year I have been getting sick every month for about a week to 2 weeks. I had a high fever always and a sore throat and my stomach would always feel like it was burning. The doctor said the stomach problems were gastritus. I could barley work or do anything when I was sick. I would start to get over the sickness then it lingered for a week afterwords. Then I would feel fine for a week or 2 and get sick again. After 6 months of this I went to the doctor and told me I had mono. And for the past month I have had have had bad headachs everyday off and on. And I have felt tired everyday and the whole day no matter how much sleep I get. So tired I can’t concentrate. Also in the past month If I do anything strenuous like climbing a latter at work or going up stairs I can barley breath and have to catch my breath. I have no motovation to do anything anymore and I cannot avoid getting sick. I feel like the mono is getting worse. Since I am getting sick more often and because of the fatigue. Do any of you have these symptoms too? How much longer could the fatigue last? I have been getting sick almost a year now. I wish u all luck with this mono. It really brings u down.

  44. I am going on 10 months with this crippling post mono fatigue. I have twin toddlers at home and I can do the bare minimum to take care of them. The fact that I can do that is only by the grace of God. Am I the only one who also has nausea? I’ve also been sick a lot with other things now, such as strep twice and various other bugs. The med cocktail of Wellbutrin & Provigil has helped. And I notice that I do better when I juice a lot and don’t drink coffee & soda.
    For the person with dysautonomia, I had that in the past. I figured out it was a food allergy. Allergies can affect the nervous system, and can come or go at any time especially with a trigger of some kind. Mine was a change in work schedule. Hope that helps.

  45. Cassandra says:

    I’m really glad that I ran into this discussion… I totally thought that I was going crazy too! I was diagnosed with mono back in August right after I moved into college. I was down for a while. People had no idea who I was before I started “sucking it up” and going to class. Well… I worked myself so hard and got so little sleep that now, it’s definitely worsening and I just can’t seem to stay awake for hardly anything. I’ve lost friends over this because they don’t believe me… I’ve even gotten a death threat. People say that I’m just “fishing for sympathy” when really, I’m just getting worse because there was pretty much a party in my dorm room every night thanks to my three roommates.

    I think it’s just awful how little is known about mono. So many people keep on telling me to “go get tested and get medicine” even though I’ve already been tested before and mono is a virus for which nothing can really be done. Then they tell me to just “suck it up” but I just can’t. People need to realize that this is serious.

  46. Hello, I am 56. I caught mono when I was 17. I am still tired. I also have sleep apnea and have had it from childhood. I am now faithful to my CPAP routine. I have pursued the cause of my fatigue since I was 21. I was told it was all in my head… etc. It is very interesting that you all experiencing post mono tiredness.

  47. I’m so glad I found this! I’m 15 and I had mono a year ago. And 2 weeks ago I was diagnosed with it again. I’ve been out of school for 3 weeks now. My mom thinks I don’t want to go to school. Which isn’t the case at all. I just don’t have the energy I had before. I used to be the life of the party, now I’m “boring”. I’m so sick of people thinking I’m lazy and weak and that I don’t want to play sports, go to school, etc. I’m glad I’m not crazy! Mom keeps saying it’s depressiona, but she never had mono. Some people at my school had it and was over it in less than a week, so she expects me to do the same. I also have had trouble with doctors. They think it’s all in my head when it’s clearly not. Well I will stop complaining now! Lol

    Praying for you all! <3

    • My daughter first had mono at 9 and it is recurrent. She gets it about three times a year and one if the symptoms is depression. She feels weak and tired and exhausted and weepy and doesn’t want to go to school. This is not the same as depression that many people have, it is a symptom of the EBV and its effect on the nervous system. She is 12 now and is currently battling another bout of it which is frustrating because she is a volleyball player and normally a very energetic kid. I’m worried that this will cause problems for her all her life, so I am now researching ways to strengthen her immune system so that it is strong enough to fight the virus when it begins to recur (she gets it when she is busy with school and sports and is over-doing things). Anyway, know that you are not lazy or truly depressed, it’s the virus taking its toll on your body. Some people can get it and bounce back quickly and other people have “compromised immune systems” an it because chronic or recurrent for them. It’s very frustrating! Hang in there!

  48. SaintBee says:

    i’m on my fourth bout of mono. the first time was when i was in middle school, seventh grade i believe. that was the worst time, until just now.. my immune system was sucked dry and after being diagnosed with it i soon after got strep, which turned into scarlet fever, then tonsilitis, which led to me having my tonsils removed because the infection was eating into my throat.. after that i got strep in my kidney’s, which led to a hospital stay and a threat of kidney failure.. bronchitis followed, with pneumonia to head it off.. it was a battle. i remember at one point hearing my mother tell someone on the phone she was afraid i was going to die.. talk about stressing me out anymore… i never felt like i was ever okay again, but slowly progressive.. then i got it again in high school and it seemed just painful to wake up and go to the bathroom. i just remember crying myself to sleep every night, wishing the nightmare would end.. as a teenager, i sought relief and felt like it was the only solution to take illegal drugs to feel like i was ever truly awake. of course, growing up, sense took over and i stopped doing that, but since that time everything’s been a haze. after graduating high school i once again, got mono…

    i can’t even begin to describe the heartache this brought on.. no longer a child, living on my own, working to support myself.. i felt like i was falling apart.. and then on top of that.. i was traveling weekly for the job i had at the time. anyway.. it took a long time, but it still felt nothing in comparison to the first time i had it.

    now at twenty eight.. i have it again and i’m exhausted. i lost my job, my home and car because of it, because getting out of bed, taking a shower, cooking, looking for work, being self sufficient.. any of those things that seem like they should be normal every day events turn me inside out until i pass out all over again. i can’t get through a movie, have a conversation more than fifteen minutes long.. i feel like this is going to destroy me and never leave me alone.

    it’s sad and nice at the same time to know i’m not alone, and know that you’re all in my thoughts. i’m so glad i found this place, even though i wish different, better.. for each of you. all the luck and love i have to your live’s.

  49. MonoBlues says:

    I have Mono now. I am 24 and have had it for about 2 weeks. I have been out of work for a whole week, and when the doctor gives me the green light, I will have to go back to my full time job. I have read this blog and have become so discouraged that the fatigue and tiredness will never go away. I am (was) a vibrant, energetic, enthusiastic person. I work as a dance motivator on weekends and fear that I won’t be able to do that anymore. I am passionate about dancing and it makes me so happy. Without being able to dance, its like part of me is missing. Being that this is so new, I am taking it day by day, but it is so hard to see the light at the end of the tunnel.

  50. SaintBee says:

    Responding to MonoBlues: Please don’t feel discouraged. Not everyone seems to suffer these long term side effects that you read about in the comment’s. My little sister also had mono about eight years ago, but she recovered and has never had any lasting side effects from it. It really is a person to person basis, which is probably why their isn’t a specific medication, life lesson plan, disabiity, etc.. for it. You very well may have a completely normal life after recovering from this. Just be optimistic and continue your regular life. Nothing helps your health better than a good attitude. Take care of yourself, listen to your doctor’s and most importantly your body. You’ll be just fine and even if you do suffer long term side effects like the people who have posted here you can still do things that you’re passionate about. Just pace yourself so you don’t wear yourself out and make matter’s work. Good luck to you!

  51. I had mono a little over two years ago and ever since then i have suffered from extreme fatigue. I am 19 years old and i never have the energy to go out with my friends or do other things that teenagers do. I go to the mall and after about a half hour i am exhausted and ready for a nap. I wish there was something to do about this, I hate being so tired all of the time. I was also diagnosed with depression so that could be a cause too, but I do not feel that I still suffer from the depression. Is there anything I can do?

  52. diagnosed with mono two months ago… still suffering from extreme fatigue and fevers on a daily basis

  53. Tired Girl says:

    I was never “officially” diagnosed with mono as I never underwent the blood tests, etc. However, I was unofficially diagnosed 12 years ago. Since then I have had two more major bouts with it that begin with weeks of extreme fatigue. I also suffer a pretty much constant lack of energy, which makes me seem like a lazy person or a procrastinator. It is very frustrating, but I don’t like using mono as an excuse and I have found that a healthy diet and exercise does help tremendously. It’d is nice to know, though, that I’m not just lazy and there is a reason I feel the way I do.

  54. I had mono when I was 20 and probably didn’t rest as much as I should have and take enough time to fully heal and I definitely have felt different since then. I would say I have had fatigue since mono, in addition my “normal seasonal colds” always come with a horrible sore throat and loss of voice, and I have problems with my connective tissues, basically tendonitis, that I never had before. My sister never had tendonitis either until after mono and it doesn’t run in our family. Also, a couple months after mono the joints that connect my ribs to my sternum became inflamed and so I had a sore chest, and even to this day that pain comes and goes, but I never had it before mono.

  55. Yup. This I how I feel. I had mononucleosis this summer and again the summer before and once when I was about 10 or 11. So now after 6 months I get the stomach virus and afterwords I have major fatigue. My doctor says I hadn’t fully recovered from mono 6months prior and getting a different infection has weakened my immune system and that I only now seem to be recovering. Makes since but it doesn’t ruin my life any less. I
    In my senior year of high school and nothing shares me more than this carrying on into college. I pray nothing like that happens.

  56. Jeannette says:

    I have been out of work for a week now,,it started last Sat,the 2 of Feb,,,I got a real stuffy nose ,,fever ,headache, sore thoat and my body hurt and I was SO tired,,,,( I was sure it was the flu…)this went on untill wed,,,then I was able to breath again,,but im having a low fever ,,thoat hurts ,,and I cant do anything,,cause Im just way to tired,,all i wanta do is sleep,,,so I got on here after thinking about this and looked up the signs for MONO…and you know what ? Im thinking this hits the spot,,,,needless to say I have a doctor appt . at 9 this morning,,,and hopefully I can get back to work on Monday,,,,good luck to anyone who feels like this,,it aint FUN,,,,

  57. Wow! After 44 years I finally know why I’m always so tired. I went to the doctor for my yearly checkup and they told me to read over my file. It said I had had Epstein Barr. I crossed it out and told them I had had Mono. She said that the Epstein Barr caused the mono. That’s the very first time in all these years that I heard that. We didn’t the the internet back then. 🙂 Sure clears up a lot of things. I was checked for low thyroid for years and years and it was always normal. I kept telling them I was always so tired. I pushed through life all those years. At least I now know the why. So glad I read this blog.

    • I just turned 50. I had Mono for the first time when I was 15. I have not been the same since. I ended up having Mono in my early 20’s and my early 30’s. Even though we’re told it’s a one time thing, turns out it’s not true. Now my almost 14 year old daughter had Mono. I don’t want her to go through everything I have.

  58. I contracted mono about 9 years ago, when I was 37. I was extremely sick for almost a year, and my symptoms finally lessened when I became pregnant with my second child. I felt like I was dying for most of that year, and was always dizzy & fatigued. Soon after this, I began to react to all different types of medications. Prior to the mono-I had no reactions to any medicines. I’m currently only able to tolerate only two antibiotics & very few other medications. My doctors looked at me like I was crazy when I told them the mono caused this. My energy levels have never been the same, and I constantly have elevated liver enzymes, with no known cause, on blood tests. My immune system is low & I’ve developed several autoimmune related health issues. I firmly believe that the EBV has played a significant role in my health years after I initially contracted it.

  59. I have had mono 3 times….once when I was 15, once after I had my 3rd baby, and once about 8 months ago (my husband left town for work, and I got run down, taking care of kiddos alone). All 3 times, I have had a blood test done that confirms it. Each time, I suffer from depression, because of a helplessness, plus weight gain from inactivity. Luckily, this last time, I had my hobby–knitting!
    It is taking forever to recover, this time. Since I also have O.C.D., my husband (who is usually supportive) thinks that I may be a hypochondriac.:( So I push myself, trying to be normal. Also, I feel bad for my kids, that I am sick so much….so I push myself for them. Then I am really wiped out, and no one can talk me into doing anything.
    Though this is discouraging, and I really want to be normal, active….enjoying the outdoors, etc., I am glad to know that I am not alone! Thanks for sharing, everyone.

    • Juliana says:

      You are definitely not alone! We need to start a foundation something am tired of us being so sick we can’t enjoy life..even with good exercise and nutrition plus support which helps and that includes our doctors and they are so blind, because they want too, one less Real thing to deal with! Sadly it will be the new Cancer and suddenly they will have the cure for cancer because we take over? I am hopeful after finding you guys! We are on our way

  60. Hey everyone, 4 years ago I got terribly sick in my jr year of college. I didnt slow down but pushed myself to the limit. Last summer I finally had blood work done to satisfy my mom who has worried about me all these years. Tests showed I had a viral something in the past, most likely mono. The symptoms fit, and 2 of my closest friends had it around that time frame. I have lived with my fatigue since. My dear boyfriend did a ton of research and suggested I take prenatal vitamins. I got store brand gummies with folic acid and found that a triple dose made me feel alive again! Good luck to everyone

  61. Hi everyone,
    I was just like you all, caught mono, suffered for ten years, so many symptoms, the main one being exhaustion. I am now completely recovered. I didn’t start to recover until I did a food allergy test and found out that I was a celiac, which is gluten intolerant. Gluten can cause so many health problems. My theory is that your immune systems are compromised already, you ve probably been feeling not quite right for some time before the main onset of your illness, and its been slowly getting worse (feeling more tired) I think that your body is using its energy to attack the, in my case gluten, you then catch mono and that’s why you don’t recover. Your immune systems are working at half of their strength. I think I must have been gluten intolerant for a long time, and my immune system was busy fighting that instead of the mono. Please please check for allergies in foods, this could be your answer.
    Hope this helps
    Don’t give up
    Love Gill

  62. It’s been a rough month (Aug/Sept 2014). I am 62 years old. Even tho I have one relationship with my husband for 40 years, I can catch mono elsewhere. My infectious disease dr say if I touch a door knob or escalator rail or grocery cart, and then touch my face (nose, eye or mouth), I will catch it. My hands were always on my face, plus I am a nail biter trying to keep up with work demands. I travel 3x a year for work related activities.

    I experienced all the symptoms of mono, except rash: low white count, low neutrophils, low platelets, low red cells, high fevers between 102-103, horrible headaches, sore spleen, sore liver, throat (outside) felt stiff and sore (not inside), salty taste, mouth so sore that only soft food (yogurt and bananas and soft pasta) work, loss of appetite, swelling around eyes, dry/red/swollen vaginal lips, and tiredness. I am out of the woods with no more fevers, but I am feel forced to lay down on the couch and I still get viral head spin (usually 99 degrees – maybe my neutrophils are low?), I was told to get lots of rest as this will build up my blood levels. I am frustrated because I am type A workaholic and was planning retirement in May 2015. I did not expect this to affect my retirement life. I feel like being punished for working so hard. My dr is going to test me for my immune system and see if it is compromised and why. I am hoping I will build immunity against reoccurrences, but we will see. I am taking probiotics, anti-nausea pills, and motrin for my headaches. I have to stay away from acetaminophen (aspirin based) because this will make my liver angry and cause my bilirubin counts to go out of range..

    Have any of you seen this new slide show by medincinenet website? See slide 17 – the virus look like a round foxtail in our blood. There must be something to purge this stuff out.
    http://www.medicinenet.com/infectious_mononucleosis_pictures_slideshow/article.htm

    I also learned that the Epstein Barr virus (EBV) is still active in my saliva. My doctor strongly advised me to not kiss my husband for a long time (!!!), and now he has to wear a condom for sex.

    See this quote from UK NHS
    Someone with glandular fever is contagious for at least two months after initially being infected with EBV. However, some people can have EBV in their saliva for up to 18 months after having the infection. A few may continue to have the virus in their saliva on and off for years.

    If your family members have a habit of kissing on the lips, it is time to stop the spread. It is best to hug. I am going to use the hand sanitizer more often so I will not spread it to others (handshakes).

    Thank you all for sharing your experiences in your posts. Technology is great. I want to thank the gal for posting about homeopathy (Otilia – June 20, 2010). Sounds hopeful!

  63. Hi everyone
    So glad I am not alone in feeling this way. I had glandular fever ten years ago and haven’t felt normal since. I have had good patches but I am currently going through a rough one. I think stress and over exertion are two major contributing factors. The hardest part is not having a doctor who can explain what is happening to me and why.
    Life goes on and we need to be brave and support each other.
    All the best

    • Juliana says:

      For sure We do need to support each other mostly positive because so much of it can sound depressing and is not. We have to raise awareness and keep on living.

  64. Well I don’t want to sound like I’m downing people but I feel fatigued all the time and have a swollen lymph node on my right side I had a sharp pain in my left side not to long ago but I was checked and they say I’m perfectly healthy. The only times I notice I’m really tired is when I dont do anything, being bored, and sitting down for more than twenty minutes. I have stopped all that I drink water and milk all the time, experience with many workouts, I do quite a bit of meditating and I guarantee if you keep active and sociable you will push past most of the symptoms without realizing it. Your mind has an odd way of working and if you change your way of thinking and stay healthy you’d be suprised the improvements and happiness you can bring yourself. I apologize for all errors I typed quickly and trust me I’m not trying to sound like I know anything about this but you’d be suprised how you can turn things around.

  65. All I can say on this topic is that – yes I agree, the energy in my body is completely different from what it was before I got mononucleosis. But the biggest concern and problem that it has left on me afterwards – are the lymph nodes under my chin and around the neck which used to be swollen while I had the infection, and later the pain was gone and it got better, but I was just left with these balls around my neck that aren’t noticeable, but once you touch it with fingers you can tell that those ‘balls’ are still there, and if you put some pressure on it the pain is still there, or was never quite gone. I wonder will they ever go away forever?

    • If your lymph nodes are swollen which it sounds like they are ,they will go back to normal. Unfortunately for me it seems like I keep going through a never ending mono cycle since I was 17. I am turning 24 next month and still when I over do it ,for example don’t sleep at least 12 hours per day for more than a day sometimes I can get away with a week with less ,but ultimately it’s like the mono repeats itself ,sore throat is first symptom n then usually I can sleep for a few weeks straight and it won’t get terribly bad but ultimately sometimes I cannot avoid a full on illness that has a terribly significant resemblance to my mono at its peak when I initially caught it at 17. Currently I have had my mono flare up ,so to speak and I’ve been in bed for two months . Fever on and off . Well I’ve been pretty good about maintaining the things that promote it from getting to its nastiest,but out of no where I started getting really sick in the beginning of summer and ever since I have been in bed. This has been the worst it’s ever been. Not only is my neck lymph nodes swollen ,so are my chest.. my fever will be 101 Monday 98 .7 Thursday then 102 Sunday . (An example ) my heart rate is very high like 110 ‘s the lowest it has been all summer , it is often 120s-130s and I worry this will be bad long term , I feel like I’m in a constant panic attack from the pain and overall sickness , I’m anemic ,I’ve lost 35 pounds this summer. I’m down to 101 pounds when I was always right around 135 since high school. The lowest I ever have been was 115 and that was a phase where I was only eating once a day because I wanted to live with my dead beat boyfriend. Luckily when I was 17 and got sick he no longer was a priority.. I just wanted to heal n sleep at my grandmother’s and the distance helped me come to my senses lol. But because of my illness I’ve lost my most recent job which didn’t require but making it out of the house publicly no more than 6 to 7 hours per week , I have no where to live except my grandfather’s and he’s going to the nursing home at the end of the month. And I’m over here nauseous ,in pain ,just wanna sedate myself I feel so horrible. I really hope this passes soon because I d k how I’m gonna move out of here

    • Juliana says:

      My doctors when I first got mono almost 8 yrs. ago said is calsafdie nodes so it was normal. Really? I don’t think so…keep reading is not normal and when mono activates they hurt

  66. I am 38 years old. When I was 15 I had mono, strep to the point I was almost, should have been hospitalized as I couldn’t talk or eat. I also was never the same after, I would come home from school the rest of my school years and often need a nap. I continued to have strep and tonsillitis a few times a year until I was about 23. I now have chronic sinusitis, fatigue, muscle and back aches ( MN winter doesn’t help) Now I have a lump on the side of my neck that hurts like hell, and somewhat of a dry sore throat feeling. I had labs done a few months ago that showed nothing, though I didn’t feel quite like this at the time. Even though all these years have past I still feel fatigued, whether I change my diet, use protein shakes, drink more water, I just feel tired. Not depressed.. I believe I was told that once you have mono it is always in your system and when you get sick, you feel worse then normal sickness. Any ideas??

  67. Had mono when I was ten. Slept for about two and half months straight. Things I remember are the stiff neck and the one hallucination I had. Now at the age of 36 I struggle with fatigue, vertigo, aches and pains. A couple years ago my Ana levels turned out to be high. Was sent to a specialist but couldn’t confirm any desease. Never thought to mention to my doctors that I had mono as a child. (didn’t know it stays in your system forever. ) Need to make a doctors appointment to find out why my system is mimicking that of a premenopausal women. Sometimes I feel great while other times I have to force myself to be normal. Recently read an article on how mono might be linked to fibro, chronic fatigue syndrome and the scary one MS. Just need answers and believe more research needs to be done on this desease. Thankful I’m not alone.

  68. I am 45 got mono at 21 years. I have been sick and on ever since. Boyfriends my ex husband always say I should go to the doctor, I tell them for years I’ve been going to doctors and they think it’s in my head. I have healed myself, but still get sick ever few weeks. It’s usually after catching some other flu or cold. I guess when my immune system Gerd run down. I have a day care in my home, so being around kids I catch a lot if illnesses.
    I do a lot of yoga and eat healthy. It helps, not a cure. When I get I’ll I take massive amounts of prebiotic, it seems to help. Or shorten the duration of the bout of illness. Whole food cooking, yoga are very helpful. I’ve grown to feel embarrassed and hide how I am feeling as I’ve learned people won’t understand, and it is discouraging. It’s like living a secret, and makes me my best friend and the only one I trust as I am the only person who knows and has lived with chronic mono. I would like more resources about where to go and how to treat this illness.

    • This is terrible in my second time around w mono … Being shoved to a nuro doc to be tested for MS ? Will the madness stop ??? I cried my eyes out today my PCP thinks its all in my head …. So sick body hurts and my jaws are actually going numb … I pray its not MS

    • YOU NEED TO GET YOUR DOCTOR TO ASK FOR A EPSTEIN BARR TEST AND A ANA TEST. YOU MAY HAVE ANTIBODIES ATTACKING. JUST GOT MY RESULTS TODAY AND THEY CAN TELL IF YOU EVER HAD MONO. I DIDN’T EVEN KNOW I HAD IT. IF YOU HAVE EXTREME FATIGUE, MUSCLE ACHES, AND WEAKNESS YOU NEED TO GO GET THESE TESTS. ALSO GET A COPY FOR YOURSELF.

  69. I’ve heard about a new ultraviolet machine called the UVLRx that’s being used for Epstein Barr patients. It uses a fiber optic thread which is inserted directly into the vein and the treatment lasts for an hour, so all the blood is treated. Has anyone tried this?’

  70. I was diagnosed with Ebstien-Barr virus 4 months ago. One day I was doing my normal 15 mile daily mountain bike ride, the next day I could barely walk to the mailbox. I haven’t worked in two months. The endless fatigue has no mercy, and I can see no light at the end of the tunnel. As a 51 year old male who has been extremely active my entire life, this is borderline depressing. I was in the hospital four days getting every test under the sun. At first they thought I might have a heart blockage, because of my sudden shortness of breath and fatigue. When they told me I had the Virus , at first I was relieved. Unfortunately, I didn’t understand how serious and debilitating this virus was; not to mention how long it last.. I could have recovered from heart surgery by now. LOL. This is awful, but I will win this fight.

  71. My daughter had a severe case of mono at 15 that had her hospitalized for a week rec’g IV fluids as her throat was too edematous for her to swallow fluids or meds. She is now 21 years old and suffers from frequent infections which she doesn’t bounce back well from. She has been diagnosed twice with malignant melanoma. She is being investigated for a third time. I’m desperately searching for any information/treatments/helpful consults ANYTHING that can be used to help her. Please message me or share if you can help. Thank you.

    • My 24 year old son had mono 3.5 years back. Since then he has been fatigued mostly. Wasn’t able to finish college or keep any jobs. We always thought that it was a psychological problem. He has seen so many psychiatrists and took so many depression meds which made things worse. Now he is diognosed as treatment resistant patient. I too have been looking for Answers. After reading all these stories I now think that he might still have virus in him .
      First I will ask him to get tested for EBV. On few websites I have read that garlic can kill EBV along with other bacteria , fungus and paracites. It has to be taken in large quantities though . the tolerance for garlic can be built up slowly and with food. It should be taken raw. So in the beginning one can start with one clove with lunch and one with dinner biting little bit with each bite until the whole clove is done. Slowly work upto 5 cloves for three times a day.
      Will be posting how it goes. The only

  72. I know that no one has posted on here for moths but this made me feel so much better to read. I am 15 and last year I got a bad case of mono and missed three months of my freshman year of highschool. It has been almost a year and sometimes I feel like I never actually got better and that maybe I just got used to te exhaustion as the new normal. I still tire way faster than I used to, I get sick frequently and I have it worse and longer than anyone else, also I used to be a big runner and now it gives me a lot of trouble. When I try and run I have difficulty breathing, I get tired so much faster, my endurance is terrible, I feel really sick for at least an hour afterwards, and I sometimes get chest pains. I can’t really bring it up with my family because by the end my mom just kept saying to me ‘stop it you have to start acting like you are healthy, if you keep thinking you are sick you will never get better’ I feel like I can’t tell her that I sometimes still feel the effects because I am worried she will brush it off as all in my head. Also she is really pushing me to do track this year but I am concerned about have 2 hors practices 5 days a week where I work out and run vigorously.

  73. Jackie k. says:

    I had mononucleosis when I was 7 years old. Positive results for mono and strep. I was sent to I dont know how many doctors. Mostly what I remember is tiredness so much I would stand then immediately lay back down and if it was the floor so be it. And a awful fever. After I had mono it was a struggle. I have had leg pains like no other I believe age 7ish to 10ish my mother thought it was growing pains and I’m thinking it def. wasnt that. Just got my Med records from 11/95 mono strep both positive. Labs are off. Nothing to crucial really. Sed rate was a 8 on 11/21 then 30 on 11/29. From what I can tell doctors were testing me for autoimmune and inflammatory diseases. Never got an answer, I’m 27 yrs old faced with painful everything. Any ideas people? I can’t exactly find similar situations based on when I got l mono at age 7. Very strange. Ty

  74. Hi all,

    This has cheered me up and also worried me that this is happening to so many people but nothing being done.

    In year 10, I tested negative for glandular fever but missed months of school due to viral fatigue.

    Then I’m second year of uni I tested positive for glandular fever.

    I pick up constant viruses and infections. I’m ill like every 3 months for 2 weeks or more.

    Last year I had a sore throat and swollen glands and it is now come back again.

    Me and my family are so fed up with it all that we are paying to get my tonsils removed in December as the NHS very rarely does that now.

    Fingers crossed this will improve things of not I’ve been told by the ENT Consultant that I may have Chronic Fatigue Syndrome or that there maybe something else.

    It seems like it’s only by doing something yourself that you get anywhere. I’m trying to push my doctors to do blood tests that the ENT Consultant recommended but so far no luck despite the fact I’ve been ill for like 5 weeks.

  75. Hello! I’m actually crying after reading all these comments because I feel like I’m the only one who understands. I’m 23 years old. I’m overweight and have been diagnosed with mono since I was 22. I’m overly tired I think extremely exhausted is a better term. I have pain in my side (left side upper) swollen glands in neck armpits and arms. I also am a mono case with the swollen spleen which is how my Dr. found out. My body is in so much pain because of the mono. They won’t do anything. I have a Dr appointment Tuesday I’m hoping they can do something. What pain medication does anyone take? Do they even provide any for mono or swollen spleen? Ibuprofen is not helping. I think the pain nausea and fatigue is the worst. I honestly feel like I can barely move anymore. Not to mention throwing up everyday. Any advice on questions for my doctor? I’m nervous because they always blame my weight but before mono i was active and social. Now I haven’t left the house in 8 months. I dread going any where. I Dodge my friends bc I worry they’ll wanna go out but I’m too weak. I can’t possibly work because of my exhaustion. No Dr. Understands. I pray for us all.

  76. I loved reading everyone’s stories and personal experiences on here. I developed mono in the end of August of last year, and now it has been about five months. At first I thought I might have caught a cold, or strep throat, but the symptoms didn’t match to either one. Then I thought it might be the sudden change in the temperature. I’m a student studying overseas in a cold-climate country, by the way. But after an extensive search online I found out I had mono. The weird thing about this ordeal is, since then I haven’t caught a single cold or flu, while the rest of my roommates are constantly down with bouts of coughing, sneezing, runny noses and wads of tissues filling up the dorm trash bin. I’m not sure if the mono has somehow boosted my immunity against colds, but I’m not too hopeful. Though that being said, I don’t particularly miss colds and flu season either.

  77. I had mono when i was 17. it was horrible!! I don’t even remember how many days i was sick because i was so delirious most of the time…confused if it was day, night, slept for hours and hours…..fever, chills, soaking sweats. throat was nearly completely swollen closed. I couldn’t walk due to extreme weakness…i lived on ice chips and milk shakes during this ordeal. But, unlike so many of you, it seems to have made my immune system STRONGER. other than frequent sinus infections, I am never sick. i have been exposed to influenza numerous times when my children and others around me had it, but I’ve never been sick from the flu but suspect I may have had norovirus a year ago.(likely from something i contacted at the college). Its weird….my parents were told when i was sick that mono can damage the immune system, but I think it caused mine to grow stronger! I am nearly 50 years old now and work in construction….healthy, strong and no health concerns at all other than obstructive sleep apnea…..and that darn right front sinus.

  78. I have noticed many people are mentioning how they have had difficulty with energy levels after mono. While I believe this could be the case for many people, it is possible to have your energy return. I had mono in grade 7 and once it had become latent my energy levels returned. I was involved in three different sports in high school and ran an excessive amount to train for a half marathon. I just wanted to add that perspective too. So, why do I find myself back on a forum that discusses experiencing Mono? Well, it is 16 years later and I have had the EB virus reactivate. I am in my last year of undergrad and have been sick for almost a month. Still sleeping 12-17 hours a day. It doesn’t seem to matter how much I sleep, I wake up feeling the same every day. So I am doing what I can here and there and am waiting to recover. Hopefully, I will have my energy levels return. Reading a majority of the above comments concerned me. So I will hold onto the picture of myself running in my youth. Wishing you all the best.

  79. Hi Everyone,
    was just recently told I have Mono my EBV panel came back positive, However the only signs I have is not feeling well, body aches and fatigues. Ido not have any swollen glands and my throat is not red swollen or sore. Just curious could it be something else?

  80. So is it safe to say that mono can sometimes never be fully recovered from n some of us can be stuck in a cycle of it where we feel flu-like and fatigued every day but when we do too much we feel like we’re back at square one ? I was diagnosed 8years ago and have been in bed for 3 months straight , continually fluctuating fevers ,lost 35 pounds in this time frame ,sore throat ,and swollen lymph nodes. .and so on. Over all I just feel awful. Can mono turn into or promote lupus or something of the sorts ? I ask because I since have inflammation of my bladder etc. The bladder condition is called intersyctional cycytis( painful bladder syndrome ) I know I didn’t spell that right but google gets it right every time anyways. It’s abbreviation is IC. These things such as that ,being anenemic , certain allergies /sensitivities and other conditions didn’t surface until after I contracted the mono. The bladder was the first thing to to bad and that was about 9 months after getting it. Any one have any suggestions ? It would mean the world. Bless you all. I thought I was the only one. I’m so sorry so many of you are also struggling.

  81. Wow, what a great site! So many people in crisis, yet willing to spend time to support and share with each other. I’m impressed and thankful. Here’s my story:
    I had a severe case of mono 10 years ago, at age 50. All symptoms, horribly sick for 6 months, then weak as a kitten aftenward. Caused my back to give out 3 months later, I’m convinced by my weakened state. My hair fell out, my weight fluctuated 3 times by 25, 30, and 35 pounds, up, down, up down, for no apparent reason, when I had never been overweight before. After 3 years, it just stayed up, and then 2 years ago, it all vanished suddenly (except about 8 pounds, but I can live with that!). I was all puffy and full of fluid–still am, but not as bad. Was just told by my doctors, “There is no treatment for mono.” I thought I was dying. And the migraines–violent, out of control. I had back surgery; failed fusion syndrome ensued–that means I’m left with constant pain, and the fusion didn’t work. I’ve searched for doctors all over the country, who wanted to treat me for isolated body parts: a neurologist gave me seizure meds for migraines; an endocrinologist said I didn’t have a thyroid problem, another one wanted to put me on antidepressants, but I knew that wouldn’t help because what depression I had was caused by pain that I wanted to end; but thank goodness after a few years an intelligent compounding pharmacist recommended natural thyroid meds and adrenal fatigue information and supplements, which have helped some, but not enough. I now have the help of a good D.O. who is holistically minded and is tracking down some leads which may help. I found out, much too late, that he is an expert on herpes viruses and Epstein Barr, and could have helped me 10 years ago. (The first thing he did was test me for EB and discovered that I am STILL positive, and he prescribed an antiviral med. I wonder what would have happened if someone had thought of giving me that med when I was in the throes of the disease in 2007.) I currently have migraines up to 14 days a month, chronic fatigue, and severe back pain every day of my life. I used to be a college professor and a model and amateur actor on the side. What fun! I can’t even drive now. Luckily for me, I have a wonderful husband and beautiful family who are ever supportive.
    Anyway, I guess I can pass on this small advice: Please remember that YOU are in charge of your health, and be assertive with doctors. I tried as hard as I could. but I was unsuccessful for the most part. (The minute I mentioned mono as the cause of the problems, 90% of the doctors I went to had this reaction: Their eyes glazed over, they paid no attention to me, and they just did what they usually did with every other patient they had. Therefore, I was given Botox that didn’t work for my migraines and synthetic thyroid meds that didn’t work for my thyroid that had been killed by mono.) Don’t let doctors or anyone else tell you it is all in your head! You know your own body and how it feels. Many people have said this in posts above, and it is true. I remember what it was like to feel good, and THAT is normal! A good doctor will listen to you and be your partner, not your boss. THERE IS ALWAYS HOPE.

  82. Okay so I’m 18 and I was diagnosed with mono in mid July. It was HORRIBLE. It started off with me throwing up and NO appetite. I wouldn’t eat anything. All I would do was drink Gatorade and maybe eat pretzels. I went to the doctor so many times and he just thought it was a stomach virus. All I would do was sleep all day and never eat. My parents got so worried that I wouldn’t eat and I lost too much weight so they took me to the ER. They did blood work and a CT scan and the blood work came back negative and the CT scan showed I had mesenteric adenitis which is basically the limph nodes in your stomach, all swollen. So they gave me antibiotics and sent me home. I still never got better. Weeks went by and I was having the same thing. I got so depressed and my parents didn’t know what to do. They thought it was all in my head because the doctors never found anything wrong with me. Finally they took me back to my pediatrician and he thought to take a mono test.. POSITIVE! I was relieved to know I wasn’t crazy but to know that there was nothing to treat it made me frustrated and I knew I had to be patient and try to get over it. I started my freshman year in college in August and I still didn’t feel the same. I was always tired. I recently started getting anxiety to go with it. I never want to go to my lectures or take tests or anything. The only thing that helps me get through it, is my loving boyfriend. He’s helped me so much and understands that this is serious. Idk what I would do without him. It makes me depressed knowing I’m not the same as I was before this all started. I just want to be normal again!! This page has helped me because I know I’m not alone. I just want to get better and enjoy my life. It’s been so hard. I never thought this would happen.

  83. Its good to hear other peoples stories. Im 15 years old and i’ve always gotten really bad strep multiple times. I got it bad so many times that a doctor recommended me getting my tonsils out, so I got them removed. In June I started feeling really exhausted, achy, and dizzy. I first was diagnosed with Anemia, then Mono. The next month it got worse, I had aches, dizziness, fatigue, rashes/psoriasis, headaches, not being able to think very well, weight gain, no appetite, irritable, not being able to breathe very well and nausea. I then found out I also had HHV6 (Human Herpes Virus 6) and Chronic Fatigue Syndrome. It’s been months of feeling this way and It has stopped me from being able to do things I used/want to do. I do school work at home (which i’m very behind on because of this) I cant go out and do anything with friends without feeling like passing out, I sleep in most of the day, I’m not active (I want to be), and Its hard for me to be around other people because noise irritates me so bad. I feel hopeless and hate feeling this way. I don’t know what to do anymore. If anyone has gone through anything similar, can I have some suggestions? Thank you.

  84. Hello, I would like to say I had ebv five years ago. The lymph nodes in my neck have never went away. My fatigue is a battle daily, and worsens every couple months. My immune system has totally been destroyed. I have been trying eating healthy, exercise, yoga. Been in hospital a couple of times for infection. Which they loaded me up with antibiotics. Which cause Canada. Everyone is right about the drs. They think ur crazy. My Dr. Told me ebv isn’t link to the CFS. She has given me pain meds for my chronic pain every were. Antidepressant, its really sad. That money, meds is more important than a human life. I am a 40 year old woman. Who has been very active all my life. The pain in my body is horrible. My neck always hurts, my spine. Horrible headache every week.when I stretch my toes it hurts. Swinging my grand daughter on swing hurts my legs. Like there straining to stay on the sang. I pray for all of us. There right, its up to us to get healthy. I literally feel like I am dying a little more and more every day. I have had all my blood work done. Nothing, I thought it was because I am low income. I see that is not. . I am try the homeopathic now. See what helps. I have had luck with olive leaf oil capsules. Try those. They help. Xo

  85. Why is no one taking a 12-month fluconazole or Diflucan treatment? Isn’t this what your doctor should be prescribing you?

Join the Discussion.

We'd love to hear from you - leave a comment below

*