2018: the year nightmares are made of!

Ears, nose and throat
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Before I start, I want to apologize for being long-winded but I have lots to say. I’ve found many comments to be extremely helpful on this forum and was hoping for some reassurance.

Since mid-June of this year, I’ve been struggling with what I thought were odd symptoms at the time and things have been slowly getting worse ever since. They include: fatigue, headaches/migraines, exhaustion, intense burning in chest for weeks on end (thymus-related?), facial numbness, horrible body aches mainly on my left side, stomach pain, heart palpitations, heat waves throughout my body, uncontrollable anxiety, back pain, and this list goes on. I’ve had five hospital visits in four months and still feeling unwell.

I was diagnosed with Mono on October 1st after weeks of uncertainty and have been out of work for two whole months. This doesn’t want to go away! Many ups and downs…two good days, then three bad, etc. I’ve had all major tests and imagining done, only to confirm all vital organs are fine; with the obvious exception of the liver and spleen. My doctor is surprised to see that I’m still suffering with so many symptoms and wants me to go to an infectious disease specialist. Does this make sense?

Keep in mind this all occurred after my dear wife passed away sudden and unexpectedly at the start of the year. So along with the grief and anxiety, I’ve been experiencing all of these symptoms and I honestly feel like I’m at the end of my wits. Are these symptoms really all Mono related? I’m concerned for my heart, but have tests upcoming. Should I really be concerned? Like I said before, just looking for some reassurance. Any thoughts welcome.

Thanks

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So sorry about your loss and the year of hell. Mono can last very many weeks or months. The older you are when you get it, the longer its likely to last. My doc said 90% recover within six months, so you’ve got some time before its time to worry. An infectious disease specialist is the appropriate referral, but theres not much they can do other than ruling out other things. Mono is a horrible torturous waiting game. Rest, relax, eat good food, and be gentle with yourself.

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I’m very sorry to hear about your wife . Yes i Believe they are EBV related . I have had most of those symptoms and a few others . I was diagnosed with EBV in March of 18 . I also have had many test run to find everything checks out okay except for elevated EBV levels . Clearly I’m no doctor but they sound like all the symptoms of mono to me . What I can tell you from my experience that this is a slow slow recovery. Hang in there as time will slowly ease this horrible virus .

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sad to hear about your loss :frowning: i do believe this is mono i had symptoms for 6 months and had to be off work for this time as the weakness fatigue was too much. i understand the uncontrollable anxiety would just wake up sobbing and freaked out for no reason, became scared of being alone and driving (recovered now).

i believe stress and strong emotions really affect the way our bodies deal with this virus :frowning: i believe your loss and emotional hardships have prolonged your recovery time. best of luck.

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Hi Izzy,

What a terrible time you’ve had, I’m so sorry to hear about your loss and just hoping and praying for God’s help and strength for you at this difficult time. And to be dealing with mono on top of that is just awful, it really is a horrible virus and empathise completely having been through a tough time with it many years ago. There is a definite connection with times of real stress and it can often happen after a stressful time in life.

I just want to offer some reassurance and encouragement that this will get better Izzy. I went through many of the same symptoms you did and was so drained physically and mentally with this virus. It took me a while to get over it fully, but I did there eventually thanks to God only. It is very normal that it can take several months to see improvement, the first 6 months were by far in my experience the most intense and awful thing - and even though it took me a few months after that to really start to feel fully recovered, got there with time and sometimes with this thing it really is just a time factor and allowing your body time and space to recover.

You’ve done the right thing by getting all the tests and things done, and remember it can be normal with mono for liver function tests to be off a little (but does return to normal as you get better) and for spleen to be affected. I had so many symptoms similar to you, including the low grade running fever, the fatigue, and all sorts of aches, pains in different areas (glands are all over the body pretty much!) and just generally feeling stunted and unwell. Sometimes doctors don’t seem to fully grasp that this thing can take an extended period to get over, so don’t panic about them sending you to see a consultant, because you will get better with time from this thing.

But please know Izzy this does get better - it doesn’t last forever and you will get through this and over it. Just give yourself as much rest and remove stress as much as possible (I know that’s easier said than done especially with everything you’ve had to deal with). But be kind to yourself and if you can talk to someone that you trust about how you feel, I was lucky to have good people around me and it made such a difference. Just getting through each day with this thing is a real achievement Izzy and don’t look too far ahead and just cope with managing as best as can and not pushing things too hard or overdoing it, but still any small thing that helps destress or with relaxation is good too - for me it was just small things like a bath, reading, having a nap during the day, going for short walk when felt able to, watching fav tv shows / films etc.

Taking vitamins and herbs really helped me a lot during recovery - a good strong multi-vitamin per day (Immunace here in the UK is a good one), higher doses of Vitamin C (1000mg-3000mg per day), a B complex vitamin (really good for energy levels and nervous system) and immune boosting herbs like siberian ginseng, echinacea and oregano. Also extra Vitamin D in the winter is good too. I’m no expert with these things of course just going on what helped me and always wise to check there are no interactions when taking different supplements / herbs or check in with doc / specialist.

But Izzy definitely want to reassure you - what you describe to me sounds like classic mono, and awful as it is to go through, you WILL get better and get over this - I truly believe that given my own tough experience and recovery (thanks to God) from this thing and reading the FULL recovery story of many other people who have been through similarly hard times with this. Hang in there and thinking of you, message any time and hoping so much for a more settled period ahead. Let us know how you are doing Izzy keep in touch, this is a really good forum to link in to lots of really good and kind people who know what it’s like to go through this and offer good practical words of advice and support.

Craig

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Sorry to hear about your loss Izzy…wow you really have had a tough year. The symptoms you have explained all sound normal sadly. The pains I’ve had in my body have mainly been on the left side for some reason. Especially my neck and legs. Any pain on the left hand side of your chest/ribs is likely to be your spleen. The virus attacks your glands, so I’ve always guess it is these that are hurting.

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Definitely agreeing Dodge, that Izzy’s symptoms sound very classic for mono, and to reassure that they don’t last forever and things do get better over time. Hoping and praying for a good day for everyone today and thinking about you all.

Craig

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Hi Izzy sorry about your wife,i can truly sympathize as i lost my hubby,well i had a string of losses including my mum my cousin and a dear friend all within 6 weeks !! terrible time and although i seemed to cope at the time i think it does leave us open to getting things like this virus because of the trauma we have been through,as Craig and everyone says it is the most frustrating brutal virus and one we will never forget thats for sure and its certainly taken me a long toime to see any improvement but thats not to say it will be the same for you or anyone else,im 18 months into it now and feeling much better than i did but not quite there yet,but dont let that dishearten you as i had ME/CFS before i got this and so it makes it a lot more difficult for me but i certainly think i am over the worst of it,like Craig says the first year is dreadful and i couldnt beleive the symptoms i got,i had 4 relapses with it in that time aswell,rest as much as you can and plenty of vitamins etc,take care and wishing you well,if you want to add me on Facebook,feel free,its Diane Randles my profile pic is of me with long blonde hair wearing a hat at a wedding,im in the UK Wakefield

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Hi Diane,

It is good to see a post from you, I hope you have been having a stable and settled period at the moment. I know you can definitely relate to the pain and hard times Izzy and others have been going through. I continue to think about you Diane and aim to keep you in my thoughts and prayers, still see such strength and courage in how you’ve been dealing with everything you’ve been through and grateful for all your kind words of help and support to me too, despite dealing with a lot yourself, shows how amazing a person you are.

Very much hoping that the Christmas period can be a settled one and it is good there has been some signs of progress and improvement - I’m still standing in belief that 2019 is going to be a year of recovery and breakthrough for you Diane, and I still believe that God has AWESOME plans for you future, involving you being fit and well and feeling free again.

Take care and thinking about you, I can add you onto Facebook too although I am not an avid user and don’t have any information on mine, it’s another way to keep in touch for sure.

Craig

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Hiya Craig thanks for your kind words and lifting my spirits as usual,ive seen some slight improvements to a few months ago still cant do much but im trying to change my mindset and tell myself that things will get better and that i can still live some kind of life even if its not as it was before,im sure come next spring or summer with some sunshine things will be even better,this is a bad time of year for a lot of people,with the dark short days and lack of fresh air and sun,i hope that your doing ok as i know youve been struggling of late and i am keeping you in my thoughts,ive learned with this ebv and ME/CFS that i have that you cant push through it and you have to take a back seat for a while and admit that things are difficult and let my body have the rest its crying out for to get into a healing state and recover,pushing through makes things worse,although a positive attitude is needed,if i dont hear from you before Xmas wishing you and your family and everyone on the forum a Happy Christmas and healthy 2019,lots of love and yeah do look me up on facebook ,i would hate to lose touch now,you will be a long time buddy to a lot of people on here God bless xx

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Thanks for the kind words and best wishes as always Diane, really grateful for those and most definitely wishing you a peaceful, stable and healthy Christmas, one of hope for recovery and improvement.

Absolutely this is can be a very tough time of year, I also find the winter hard and much more enjoy the spring when you have the light nights and full summer ahead. Hang in there Diane, you’re so right about not pushing through physically too much when in a difficult period, just listen to your body and rest when you need to rest, and remember it won’t always be as tough that better times I hope and pray will most definitely be ahead.

Yes for sure will add you onto Facebook, if you see a Craig with no picture popping up with request on yours then that’s me - will do that later today I am planning.

Take care and continuing to keep you in thoughts and prayers - trusting that God has great future plans for you Diane, hang in there.

Craig

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Izzy,
I’m so sorry about your wife. I am sure this added stress has not helped heal your body. All your symptoms sound similar to all of ours.
I am not sure if your burning chest is thymus related, but my holistic doctor put me on thymus extract to assist with my immune recovery. I am sure it has helped.
I still get dizzy occasionally. I had heart palpitations, uncontrollable anxiety, neck pain, lower back pain, irritable bowels, insomnia, uncontrollable fear, and my list goes on and on as well. Good news is you WILL get better, but you’ve got to boost your immune system back up.
If you have seen your doctor and gotten all the right test, you are doing the right thing. Have you thought about alternate medicine and supplements?

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Definitely agreeing Jen that Izzy and you and everyone on the forum is going to get fully better from this thing, and hoping, praying and believing that 2019 will be a year of hope, breakthrough, recovery, good health, peace and joy for everyone.

Vitamins and supplements certainly helped me during mono and at various other times, again just about making sure you do your research and watch for interactions with other medications and conditions, etc - but for sure things that helped me included a good strong multi-vitamin per day (Immune Extra here in the UK a good one), higher doses of Vitamin C (1000mg-3000mg per day), a B complex vitamin (I take a B100 complex vitamin) (great for nervous system and energy levels) and immune boosting herbs like siberian ginseng / echinacea / oregano. Again just my own experience I’m no expert on these things mind.

Craig

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hi craig
i know it is long time since u posted here, i was wondering how is yr life doing with full recovery you have
thank you

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Hi Joe,

Thanks for the message, I sent you a private message - doing okay thanks here and hope that you are too.

Craig