An update since I've been posting a bunch...

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I dont know if maybe this will help anyone else so I'm going to share. I had a lot going on around the time I contracted mono. The last week of October into the first week of november I caught a severe case of hand foot mouth disease. I suspect I caught mono at the same time since my immune system was down and they are similar viruses, my acute mono symptoms began around 4 or 5 weeks after the hand foot mouth. Around this same time 4 of my fingernails got white lines in them and began peeling off which can happen after hand foot mouth and some other viruses. My mono began the last few days of November with a very weird sore throat, it was like a sharp pain only on the left side and that tonsil looked weird and swollen. I felt kind of tired and weird. I went to urgent care they did a strep swab and it was negative. A few days later I had what I thought was a virus for 2 days..high fever, chills, my body hurt, I was nauseas and my throat still hurt even after those 2 days passed. Then my eyelids swelled up. I went to urgent care again and all they did was another strep swab that was negative again. We moved to a new house dec 10th and I just remember how tired I felt, my body hurt, my eyes were swollen, I had a headache....the next day I wake up with the full blown flu and was bedridden for 4 full days sicker than I've ever been. After I recovered from that, my throat still hurt on the left side, that sharp pain, felt like I was swallowing a knife it had gotten so bad so a few days before Christmas I waited til I'd put my twins to bed and my husband was home and I went to the ER. This time a strep test came back positive (I had no idea that it's very common to get strep with mono.) I got a 8 days of amoxicillin and the kind of burning sore throat feeling went away but still I was left with that sharp pain on one side. I'd lost a good amount of weight between October and Christmas at this point from the hand foot mouth disease followed by this never ending throat pain and the flu. I went back to the same ER in the first week of January and by now I am an anxious mess because I cant understand how I could have this severe of a throat pain for so long. My fever was 99 both times at the er and I'd been super tired and run down and felt mildly feverish those few weeks on and off. He prescribed more antibiotics and i was starting to have side effects from them and decided no I'm not taking these I know this isnt strep. Monday I decide to go to the urgent care that had very promptly diagnosed my hand foot mouth disease months earlier. By this point my anxiety had crept up to insane levels. I am anxious and have health anxiety to begin with and being so sick for so long with no answers was taking its toll on my fragile mental health. This week I'd had 2 night of drenching night sweats. I'm not sure if it was the mono, anxiety, or I read it was also a side effect of the antibiotics I had taken. Night sweats are a huge trigger of anxiety for me bc I had them when I was 20 really bad and didnt know I was having nocturnal panic attacks, convinced myself I had a deadly disease. It was a bad time. And it did the same thing this time. This was the icing on the cake. So I'm at this urgent care in tears telling this dr everything that's gone on, that I googled s**t and was convinced I had throat cancer or lymphoma. He says let's take blood and do a mono test. He came back in 30 seconds later and said my monospot was instantly positive and he said I had very classic symptoms of mono and to expect to feel unwell for at least another month. He did a full blood panel as well and called 5 days later to tell me that good news, besides having mono (which blood showed was out of the acute phase but had not entered recovery phase yet) my liver and spleen enzymes were perfect and my white blood cell count was perfect and I was lucky that despite some sy symptoms I had a milder case of mono. You'd think this would be enough to calm me but no. My nervous system had literally lost control at this point. I was googling so much stuff convinced they got it wrong and I had lymphoma. I had TWO thermometers and for 4 days I took my temp obsessively, convinced I'd be having fevers. I was having mini panic attacks all day. I was waking up startled, sweating and having awful nightmares almost every hour all night every single night which was fueling my panic. I felt sick to my stomach with worry and couldnt eat and kept losing more weight thru January and everyone telling me how skinny I looked was adding to my panic that i had cancer. I was keeping it all in and finally broke down crying to my husband and my mom ..I was exhausted from not sleeping, my stomach was a mess if I did eat I'd have to run to the restroom. I had begun to have anxiety just looking at my bed from waking up in sweaty panic every single night, multiple times so now I dreaded bed time. I knew I was having anxiety but I also had this dark sad feelingI couldnt tell if it was depression or what, I didnt laugh, I felt very disconnected from my twins and my husband, but not as deep as depression but just emotionally flat. My mom said you need to call a therapist now. I found one but had to wait another week and a half to see her. During this week and a half I started using a cbd/hemp oil and melatonin for sleep. It helped a bit, I was slightly calmer and only waking up in a hot sweaty anxious state once a night. Yesterday was my first session and I was shocked when the therapist said what I went thru with being so sick and the length of time to be diagnosed and all the worry and panic I went thru, is considered TRAUMA and I am suffering from what they call an acute post traumatic stress response which can lead to full blown PTSD and she thinks I was headed for a nervous breakdown! I told her I did feel like I had gone thru trauma but I didn't dare say it bc it sounded silly to me. Surely trauma has to be more severe but she said trauma is personal and to someone with anxiety and health anxiety, this WAS my definition of trauma. I was so relieved I cried right then and there. She said pardon my language but you basically got mind fd by these doctors telling you wow you're very sick but we don't know what's wrong, and it was just a mental and emotional downward spiral. Last night I was able to eat and enjoy dinner. I fell asleep quickly. I didn't wake up for many hours and when I did I wasnt sweaty and I wasnt in a panic. Just knowing what was going on instantly helped me. I am going to do weekly therapy for at least 4 months to fully get over this hopefully. I know this was long and I hope if anyone is experiencing similar issues, maybe the trauma of this illness has done the same to you and it could help you heal. Everyone on here has been an amazing source of support and encouragement and I am glad I found this community thru all my googling which I am now staying off google!!

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14 Replies

  • Posted

    jenna i can relate to your story so much...

    for months nobody knew what was going on with me and i would get anxiety just looking at my bed and at night. i also had strange nightmares, this half awake half asleep state. but i agree with you that your experience (mine too) can totally cause someone to feel traumatized. i am recovering but still always scared of it and just wishing that awful part of my life would dissapear from my memory lol!

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    • Posted

      Omg I developed such a fear of my bed bc of the sleep issues..nightmares, insomnia, waking up an hour after falling asleep hot sweaty and my mind in a panic! It's been rough. It really affects people.

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  • Posted

    I cant get over how similar our paths have been. My mono story is about the same...4 visits to the doctor before being diagnosed.

    I too had severe health anxiety about 5 years ago when I had an injury that they could not diagnose. I was sent to every doctor under the sun, and at the end it was a muscle strain. I was sent to a breast doctor for possible breast cancer, neurologist, orthopaedic doc.. .many more. I felt so alone and scared during that time. I remember thinking I was having a nervous breakdown and honestly almost admitted myself to the hospital. I was scared to leave the house, ride the metro, or get on a plane. I had lost weight because I was so nervous that I wasnt hungry. i laid awake every night stressed. it was by far the worst time of my life thus far. The doctors threw anxiety meds at me but I wanted to fight this without meds.

    Like you, I went in for counseling. I wasnt crazy about the first counselor so I went to another. swear, she saved my life. I saw her for almost a year and she walked me back from the edge. She armed me with tools to help my anxiety in the future.

    When I got mono, it brought back a lot of anxiety, especially since they didn't diagnose me correctly for a month. Luckily, I only had about 1 week of severe anxiety. Even now, I still wonder if something worse is going on, but I'm keeping the anxiety in check for the most part.

    Long story, but I want you to know you are doing the right thing. this counselor will help you now, and to deal with this again in the future. You will be so glad you did this for yourself.

    I'm thinking that I might need to go back, just to reinforce what I had previously learned. Your story just made me realize this.

    Im so glad you posted this. it makes me realize I'm not alone, and I hope that by telling you this you also realize you are going to make it through this and come out better on the other side.

    Here for you!

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    • Posted

      Hey Jen / Van,

      Just wondering how you are both doing at the moment, very much hoping things have been more stable and settled for you as I know things not been at all easy for you this last while.

      I'm believing that this is going to be year of hope, breakthrough and healing for both of you.

      Craig

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    • Posted

      Wow. Such similarities that is crazy. I am so glad you went and saw a therapist too and you should again, its such a great help in the times where we arent helping ourselves. I am feeling better just from seeing her and finding out all those feelings i was having were from the trauma of the situation. I was close to checking myself into a mental health facility bc I couldnt cope with the extreme anxiety and then on top of that, most of what I was experiencing was the acute stress disorder symptoms and I didn't even know it.

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    • Posted

      I'm glad that you are finding the therapy helpful Jenna, I'm also seeing a therapist at the moment for issues I've been going through this last period with back pain and losing job and just a tough time in my life. It has helped me too, it is a great help if you can find a therapist who is compassionate and that you get on well with. You are doing something really positive to help yourself at this tough time Jenna, so take heart from that and you're showing courage and strength.

      Still thinking about you and believing that you are going to get fully better from this awful virus over the coming period. Hoping for a good weekend ahead.

      Craig

      P.S. One alternative therapy I've found helpful for aches and pains and different things has been Bowen Therapy

      P.P.S. For help with relaxation and sleep I've found Chamomile and Cayenne Pepper very good herbs to take lately

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    • Posted

      Craig,

      Right now things are good. I've had normal energy levels most days and have been working out about 3 days a week with no negative consequences. I've been sleeping much better, but some nights are still not great. No recent night sweats. I've got some other weird stuff going on with me and I'm not sure if its mono related. I've got an appointment with the doc next week. Fingers crossed all is well.

      How have you been?

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    • Posted

      What else do you have going on?? I want to start working out again, I am 8 or 9 weeks since developing mono. Normal blood, liver and spleen. Energy almost back to normal. Am I ok do you tbink

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    • Posted

      Hard to say. I'm around month 6 and have been back to a normal work schedule for quite awhile . I tried to work out about 2 months ago and regretted it. I did a light work out and immediately felt exhausted after. I ran a fever and stayed on the couch the rest of the day.

      I found that at first it took all my energy just to work and was exhausted by the end of my work day. With time, I had more energy after work.

      If you feel at all tired, I'd give your body more time.

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    • Posted

      Hi Jen,

      That's great to hear things have been much more settled for you at the moment, hoping and praying things can continue to improve and that the other stuff going on can settle down and that the doctor can help with this.

      I have been doing not too bad also, although today I'm having a bit of a wobble and just trying to settle myself down hoping it's just a tough day and that things will pass and settle again.

      Hang in there Jen and still keeping you in my thoughts.

      Craig

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  • Posted

    Hi Jenna,

    Thanks you for taking the time to share your story, and your words really are heartfelt and the pain and suffering you have been going through comes across and I just hope and pray so much that you can have a much more stable period ahead and that the symptoms of this virus and the awful trauma you have been going through can heal more and more each day.

    You have definitely been doing the right thing by going to therapy, it's not easy to do that when not feeling up to it and I know I needed the help of an occupational therapist and friends / family too when I was recovering from mono, it helped a lot and meant so much and couldn't have got there without this help.

    Jenna remember you have been through an extremely draining time both physically and mentally and just to try and be kind to yourself, and do remember that mono does get better and that you will get through this time and get over this whole awful traumatic experience.

    Just wanted you to know I'm thinking about you and think that you've shown real courage to come on the forum and share your story / offer advice / encouragement to others when things have been so tough yourself - and to move house in the middle of all that and be a mother of young babies I can only imagine how tough things must have been.

    And most importantly - remind yourself every day (even when it doesn't feel like it's the case) that you ARE going to make a fully recovery and that what you've been through at the moment is the worst phase and that things will get better from here. Believe me things do get better with time with this thing Jenna, I thought I never would but just so grateful with God's help only was able to get there - and you will too - 100% believe that.

    Craig

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  • Posted

    Jenna,

    I am in the same boat. I keep constantly checking my temp and feeling myself for lymph nodes. I am fully convinced that I have lymphoma despite the fact that I had a full blood work up and everything came back normal. My lymphocytes were on the last number of the normal range and that has been freaking me out!

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    • Posted

      Hi Madison,

      It's so awful to go through these worries, take heart that you've done all the right things you've got blood tests and everything and believe me Madison mono can be so intense and awful it makes you think something else is going on when it is actually only the mono. I went through similar worries and it was awful, but please be assured that with mono you will get better and will get through this - it just takes time sometimes unfortunately but absolutely you will get there, and of course don't hesitate to check in with the doc again to discuss any fears / worries, and hoping they can put your mind at rest. My blood tests were all normal too after the initial test which diagnosed the mono, even though I was still feeling so unwell at the time I had them done - this is normal Madison and remember things will get better and you will get back to full health again with a little time. Thinking about you.

      Craig

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  • Posted

    I still am paranoid about it too, even with great blood work. My mono was so mild by the time I was tested around 6 weeks into having it, my liver, spleen an white blood cells were all perfect in blood work but still my brain went crazy. My health anxiety went out of control, I just started therapy and when she explained most of what I am feeling now is the stress response to all the anxiety and not some mystery undiagnosed illness I am doing better. I still panic a little tho I have a bruise on my leg and I'm freaking over that. Its a stupid bruise it does not mean anything serious is wrong but my brain has now wired itself to freak out so I'm hoping the therapy will help. Mono really does an emotional number ...I am worse off from the emotional effects of it than physical now!

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