Just diagnosed

Ears, nose and throat
1

Hi all,

Thought I’d introduce myself, as I’ve been reading through the forum and gained a lot of insight from it so far.

I was finally diagnosed with mono last week, after a nightmarish month of labs and diabolical symptoms that didn’t seem to make sense. But my PP has now confirmed Epstein Barr - and in my case, the second time I’ve had it (the first was when I was a teenager, and it was nowhere near this awful).

I’m past the acute sore throat and fever, but to be honest that was a breeze compared to the joint pain, muscle pain, lack of appetite, and my GOD the anxiety. I’ve never experienced anything like it, and I have to say that it did a lot for my sanity to find this forum and discover that this is prevalent amongst lots of people battling this illness. I honestly thought I was losing my mind. I told my PP last week that I was convinced I was dying and that I wouldn’t get to watch my little girl grow up.

Since the diagnosis I’ve been able to manage the anxiety a little better - I know what it’s stemming from now. But I have to say, the pain and the shaking are REALLY freaking me out. The shakes aren’t too bad at night, but there’s always this low-level ‘hum’ in my muscles, especially my hands. I also get muscle twitches out of nowhere, and have a hard time convincing myself that these things aren’t just a bigger problem hiding away beneath the mono (the paranoia isn’t very pleasant either).

Has anyone else had the dreadful shakes? I had pins and needles in my hands at the very start, but that went away. Now it feels like my nervous system is just shot. I’ve asked my PP if I should maybe see a neurologist for peace of mind.

Thanks for listening - hoping for a speedy recovery for everyone living with this hideous illness.

2

hi emma yes the anxiety with it is terrible!! i also went through a phase of being really shakey almost like that hum in your body internal jitters and pulsing… still have that feeling in my chest legs and feet at times felt it in my hands too at one point just like you… but it seems to have gotten better over the past few months still there but dont notice it like i use to ..this phase does get better!!

3

Hi Katelyn,

It’s a relief to hear I’m not the only one, although I’m sorry you’ve experienced it too. How long have you been dealing with mono? I never knew it was so destructive :frowning:

4

hey Emma! Your experience sounds very similar to mine. The anxiety was an absolute nightmare and something that I have never dealt with in my life. Even to this day two years later I still will get random anxiety attacks. Though nowhere near as bad as before. Also I have the shakes on and off throughout the last two years. I had to completely give up caffeine and that helped calm them down. I’m now super sensitive to caffeine after drinking it for 20 years.
When I get my flares or relapses it will start with that buzzing feeling in my muscles and then move into the muscle and joint pain and all over body fatigue . It’s all connected somehow. I think it’s the virus keeps flaring up and never goes dormant. I’m now going to try an antiviral for six months and see if it kicks its butt!
I hope you have a speedy recovery!

5

Hi Lisa,

Now that you mention the caffeine, I have noticed the shakes are worse after my morning coffee :frowning: I feel like the virus strips the nervous system down and agree with you that it must all be connected. I hope the antiviral works magic for you :slight_smile:

6

im sorry you have to go through this too i wouldnt wish it on my worst enemy holy cow!..next month will make 10 months for me the first few months are by far the worst!! now at 9 months i see glimpses of feeling almost normal at times some hours are better than others some days i feel like i cant do anything other days i can do more its crazy the ups and downs but thats a sign of healing and you will start to see that too i never even thought i would start seeing any glimpses of healing at all and you might be in that spot too but i wanted you to know it will happen it just takes time…i never heard of mono ever being this bad either no one ever does so i think we are all in shock here!

7

Hi Emma,

The anxiety is horrific i agree. i never had anxiety before this but my god i do now. Im 5 months suffering very similar symptoms to you and you are not alone. This page is a great help to know we are all in it together. i had internal shakes in the beginning and they are scary, they are gone now ( touch wood) i still get the random twitches in my muscles mostly my legs but have got them in my hands, neck all over really.
i also started with pins and needles in my hands and feet/legs. This only reoccurs now every now and then.
hoping for a speedy recovery for all here

8

Hi Emma,

Oh my what an awful time you’ve been going through by the sounds of it, I really do empathise having been through this virus and terrible fears, worries and anxieties that it caused me too. I just want to reassure you Emma that despite how awful this is right now, truly you will get through it and back to full health again - and that’s coming from me as someone who struggled badly with the virus and I know that it was only down to God that I was able to get through that terrible time in my life and down to His mercy I was able to get well again.

It definitely can be common to have symptoms like shaking, pins and needles and other neurological type symptoms when going through this virus. The symptoms can be so horrible to cope with, just try to take each day one at a time Emma and don’t look too far ahead - I remember how tough it was getting through a single day when dealing with the virus at its worst, be kind to yourself, get plenty of rest and remember that your body will recover with some time. I know it’s so hard to be patient when feeling so unwell with this thing, it truly is so hard, and to have it for a second time is awful Emma - really thinking about you. But I’m truly believing given everything I know about the virus from being on the forums and from my own experience that you will 100% recover and get back to FULL health with a little time - don’t panic if it takes a little time for your body to get to 100%, that can be normal but you will get there Emma truly you will and what you’re going through right now is normal for the virus although I know that doesn’t make it any easier to cope with I know. Just absolutely want to reassure you that you will get better - I really believe that for you Emma.

Taking vitamins and herbs really helped me during recovery - things like higher doses of Vitamin C (recently I’ve been reading that taking much higher doses, even 5mg or so a day, can be really beneficial), a good strong multi-vitamin per day (I take Immunace Extra on sale here in the UK), a B complex vitamin and/or Co-enzyme Q10 (great for nervous system and energy levels) and immune boosting herbs like siberian ginseng, echinacea and oregano. Also taking a good strong daily dose of Vitamin D can be really helpful too. Recently I’ve been taking some tips from a British man called Phillip Day about herbs and vitamins, his website is www.credence.org, and some videos on YouTube.

But of course be careful before starting any vitamins and herbs - check for any interactions with other medication / conditions, and always wise to check in with an expert, maybe a herbalist or a good doctor. I’m no expert on vitamins or medical matters, just going on my own research and things that helped me.

The forum here is a really good one Emma, lots of kind and understanding people who know what it’s like to go through the virus - it’s definitely a better place to come than the general internet which is as usual full of the scare stories, this forum is much more helpful and knowledgeable about the virus than most other places I’ve found online.

Thinking about you Emma and remember you WILL beat this and get back to full health with a little time. Message any time.

Craig

9

Hi Emma,

I also have active EBV again. I had “mono” 16 years ago in college. This time has been completely different. I did see a neurologist because I was convinced at one point that I had MS or ALS because of the muscle twitching and pins and needles and general attack on my nervous system. I also could not handle stress well-if I would get anxious, my body would literally start to shake like I was shivering. Luckily, many of those symptoms have subsided or become less intense, but I can tell it’s either still slightly active or my body is experiencing post viral fatigue because I definitely do not feel 100%.
Like you I saw many doctors and went many months without a diagnosis. Finally, a Rheumatologist thought to check for it.

10

Hi Emma and Katelyn,

You sound just like me, I came down with it almost three years ago and have recovered, but still low energy days that come and go, what a terrible experience it is, you really do appreciate the good days when you recover.

11

Hi Siobhan,

The anxiety is out of this world. My PP has a theory that it’s the virus stimulating cortisol, but it’s hard to know what to believe when this virus is so all-pervasive. Can I ask how long it was before your internal shakes improved? Mine seem strongest in the morning, peak at midday, and then seem to leave in the evening - so weird.

I’m sorry we’re all going through this,but it’s so good to know I’m not alone!

12

Thank you Craig, i’ve read lots of your posts and have taken great comfort in them. I’m trying to take it one day at a time and not let the anxiety get the better of me, as I know stress will just make things worse. Easier said than done, but I can definitely see that this virus toys with the mind just as much as it messes with the body.

Thank you for your kind words and advice, and strength to everyone here.

13

Hi Olivia,

Isn’t it awful? I think for me the neuro symptoms are even worse than the body/joint aches, although those aren’t a party either. Like you I’ve had those ‘oh God I must have MS’ moments, and the panic is almost unbearable, it just shuts you down. But I have to say, finding so many people on here experiencing similar things has been a great relief. I just don’t understand how there isn’t more common awareness of just how destructive and persistent EBV can be - what a nightmare!

I hope your symptoms and fatigue clear up soon!

14

very terrible oh im sure!! i dream of having more good days soon and feeling back to normal its hard to imagine what normal feels like after being sick for so long…happy you have recovered! so you are back to normal activity now?

15

Hi Emma,

Thats good to know what your pp said, it helps to understand anything about this virus it calms the anxiety for a little while anyway. I google to try calm anxiety and it makes it worse sometimes and i know this so trying to stay away from unhelpful sites and stick with great groups like this.
I had the internal shakes mostly in the mornings too. i woke up shaking sometimes and it was so scary. id say i had them for the first 3 months and they have calmed.
i have knee pain, muscle and joint pain, eye floaters, twitches, pins and needles, stomach cramps, tight throat etc etc.. most of these come and go some stay its a long road for sure.

16

Oh I know it’s so much easier than done not to let anxiety get the better Emma, I too am struggling too in my own circumstances with some pain and injuries and I’ve been not good at dealing with fear and anxiety and taking it out on ones that I love the most, it’s so hard I know - thinking of you.

Craig

17

HI Katelyn,

Yes, i have recovered, occasional down days but after being sick for so long I am just grateful to have come this far. it will happen for you too, it just takes a long time.

18

thank you for the encouragement!

19

Hi Lisa,

I call those my down days, I was diagnosed almost three years ago and recovered after a year, my symptoms are the same as yours on a down day, I am happy to have resumed my life so I will deal with the occasional down times. Each year has been better than the last.