Spine

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i have been dealing with EBV since January going through numerous crazy symptoms.. now i have this weird feeling going up and down my spine almost like a tingling and tight feeling along with only parts of my limbs feeling weak and numb at times its not all day everyday but when it appears it scares me so bad. has anyone else had this weird feeling before? i have been scared this past week once again because of all of these new things popping up.

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  • Posted

    Hi Katelyn,

    So sorry to hear that you have been going through an awful time with EBV this year. I really do empathise having went through a tough time with the virus a number of years ago. Like you, I struggled for an extended period with it, it took about 10 months for me to see a real breakthrough and turning point - I'm not saying that will be the case for you but want to reassure you that you will get back to full health again and not to panic that it's taking a number of months, because this is normal. There is good health and full life again after mono - believe me Katelyn I struggled to see that when going through it but your body will fight back from this and you will feel much better - and my experience was that those first 6 months were the worst and God willing you won't have to face anything as intense or severe as that again.

    That sounds so frustrating the tingling and tightness you're having in your spine and limbs, hoping so much this settles down soon Katelyn, I remember having all sorts of aches, pains and low grade fever throughout my body, so it can be very common to get all sorts of strange pains and symptoms that you wouldn't even normally associate with the virus - it can affect so many areas and what is a bothersome symptom for one person could be different from the thing or things that really bothers another person going through it I've come to learn.

    Hang in there and remember Katelyn you will get through this and back to good health again - taking vitamins and herbs helped me a lot during recovery, just let me know if you want a note of some of the things that helped me in this respect and I will post, I have posted it on a number of threads before so you might already have seen it!

    Craig

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    • Posted

      not too sure what happened i had typed a long message back to you but it seemed to dissapear? but i just wanted to thank you for your kind and encouraging words it means alot you truly seem to care for everyone on this forum. I do believe God will heal He already has healed in so many ways i know hes not giving up on me or anyone else going through this right now. its a tough thing to go through but i believe it will make us stronger people.

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  • Posted

    Hi

    i myself have been suffering from limb weakness, my left arm is weaker compared to my right, plus i cant bend the top of my left thumb, my index finger was the same but has recovered slightly, what weakness are you experiencing?

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    • Posted

      hi james, my experience this past week has been the numbness feeling on the outside part of my right arm and down the side of my left leg starting from my knee all the way down into my ankle and top part of my foot. its almost like the feeling of your foot falling asleep but in the arm and leg it is a very strange feeling. expecially laying down i feel it worse like i wont be able to move my arm and leg but then i try and i can surprisingly. it has made me worried because my spine kind of has the same numbness skin crawling feeling as well

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    • Posted

      If you look back to around march i think it was i had the same numb tingling feeling in my face only on right aide the outside of my right arm and outside of my right leg only on that side it was pretty weird feeling but that actually only stayed a week or so for me and passed.

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    • Posted

      it started on january 3rd with me almost passing out and i was dizzy for a few days... then it went away and i was normal for 2 weeks then bam all of a sudden the throwing up started and since then i havnt been normal i think it was january 28th when that happened so almost 6 months now... have gone through months of dizziness ,shortness of breath so bad, fast heart rate bad anxiety and couldnt eat much lost my appetite i had lost weight and that lasted for a good while felt like i couldnt walk around without feeling like i was going to pass out or collapse.. went through short periods of headaches and severe joint pains muscle weakness so bad i could barely do simple tasks.. all of that has gotten better over time now its the weird tingly feeling stuff and numbness going on... i cant keep up its always something once something gets better another thing gets worse

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    • Posted

      wow I dont know what i would do without this forum i am happy to see that others are going through the same issues as me or else i would be searching google which is horrible to do thats what i did in the beginning and i scared myself even more until i found this..its such a horrid thing like you truly feel like you have something much worse...how long have you been sick for?

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    • Posted

      I was super tired in like August-November and didnt know why i kept working thinking it was nothing because i had been working a lot trying to get a house and married . I got to duck season where i was missing a bunch of sleep and i guess stressed out from work. Then the tiredness got worse and i was hunting in Arkansas 8 hours from home got really dizzy nauseated heart rate and blood pressure was high and for the next three months it was nausea couldnt eat lost 20 pounds headaches body aches weak could barely go to the bathroom i would be out of breath and tired. Just going to the doctor was a hassle for me i went to all kinds of doctors and specialists trying to figure out what was wrong and ended up being diagnosed with mono. I had all kinds of sensations numbess headaches body aches abdominal pain and i still am tired with headaches nausea out of breath but it is better than it was and i got my appetite back so i can eat a lot better now. I am just waited to get everything back to normal i guess. It is moving so slow but looking back dec-march i couldnt get off the couch hardly and now i am back at work which is hard but i can make it through the day. Some days easier than others.

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    • Posted

      oh gosh i dont see how anyone could work through this you are a tough cookie i had to drop out of my college classes and i had just started working at a day care i could not physically pick up kids and run around i have just been trying to recover.. your symptoms sound alot like mine just trying to get up in the beginning out of bed i felt like i had got hit by a bus truly looking back at how far ive come over just 4/5 months ago im amazed but yes i know how you feel, its like you feel better than the beginning but just still horrible

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    • Posted

      Yeah i actually quit my job as an iron worked i missed three months of that during the acute phase and now i just started a new job yesterday working for the mill i worked at for 8 years as a contractor. I still am weak and always tired and mostly feel bad but i hope this new easier job helps me some. It will be way less physical and strenuous. How old might you be i am 28 and have never really been sick before especially not something like this. My anxiety which i have never really had before has gotten so crazy i am scared to do anything and am constantly checking my symptoms and freaking out which also scares me more which in turn freaks me out even more. My new wife just tells me to calm down it is nothing bad and i need to stop thinking it is all these different things and stay off google but it is so hard to do with all the symptoms and and constantly feeling terrible. I pray we all recover soon. I am so ready to get back to my active life. They tell you to try to be happy and upbeat it will help but i am an out going person that almost never sits still. I constantly am golfing fishing hunting some sort of activity and for 7 months that has been completely out of the picture just riding around the golf course watching makes me tired and feel bad.

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    • Posted

      wow i hope it works out for you the switch i think was a good choice for sure. i just turned 20 in february i would always get like colds and stuff but never anything this severe before i truly have never experienced anything so horrid in my life. ive always had anxiety before because im pretty shy but not to this extent i have had a couple of panick attacks through all of this but it has seemed to calm down some i do get anxious still but not as bad like there was a phase when i woke up scared and had to sprawl out of the couch all day long trying to control my breathing it was a horrible phase but it did pass now i kind of just get scared with new symptoms but not have panicks like before im able to get through the days even though they are still rough. its really hard because your loved ones dont actually know how you feel you cant ever relax or calm down because all these weird things are going through our bodies right now and its not little symptoms you can just shake off its scarey stuff

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    • Posted

      Well mine hasnt passed and it makes me think heart or lung problems but they have done ct scans x rays and such saying both or fine but that doesnt really make me feel better as i still feel short of breath.

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    • Posted

      i understand how scarey it is i believe anxiety does makes it much worse than it is its just a scarey feeling believe me i completely know what you are dealing with i had that for months i just think everyones body is different and you pass certain symptoms at different times than others i truly believe that yours will go away i never thought mine would but it did

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    • Posted

      i know how that feels i had a phase where i had such bad anxiety i pray that it goes away soon for you...ive read about others going through bad anxiety too and that has never been the case for them before getting sick i believe its just a part of this virus because it attacks your nerves

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    • Posted

      I am working on the not worrying thing but you know how it is. It is hard to not worry and thing more is going on when you feel so terrible with so many symptoms. Such a bad time to be this sick with a new house and recently married. A lot on my shoulders that i dont want to give up let go or spoil just because of a virus. My right arm and leg numbess and tingling came back today i guess because i talked about it. Such bad luck lol

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    • Posted

      im so sorry i understand thats alot to have going on all at once i know how scarey it is you try not to think its something else but you always do ive been thinking that way the whole time and its emotionally draining i pray that your numbness and tingling goes away again too im dealing with tingling in my legs and feet sometimes hands i havnt felt the numbness today though but my spine is still feeling weird too. i actually just got back from the doctors i switched because my other doctor wasnt very comforting.. this one told me that the other doctor didnt do all the bloodwork to see what type of EBV i have so once they get results back i have another apointment to see what it is... i know me and you have gone through similar things so i will let you know what results are just to help you out too

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    • Posted

      my results might not be in till next week some time just letting you know but how are you today? my back has that sore tingling cold rush feeling around my spine was wondering if your numbness has gotten better

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    • Posted

      this is a crazy virus i cant keep up i hope those symptoms get better for you. i have recently started getting headaches too again towards the beginning nothing would help but now taking motrin seems to be helping the headaches if you havnt tried pain medicine lately maybe try that again if you havnt i didnt think it would help but it did these past few days

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    • Posted

      I take a tylenol sometimes it kind of helps but i try not to take as much medicine as possible. Like you said in the beginning nothing helped the headaches but it seems to help a little more now but they are also not constant anymore.

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    • Posted

      Hello Kateyln / Josh,

      Just wanted to write a word of encouragement today, to let you know that you will get through this horrible virus. I remember how badly I struggled with it and how wide and varied my symptoms were, and the terrible and awful worry and anxiety too - it truly is an awful thing to go through and just wanted you to know I was thinking about you both and just to reassure you that truly you WILL get better and try not to panic, it is normal that it can take a little while to get back to full health with this thing as it's such a nasty and debilitating virus - but you will get back to full health again, I truly believe that given my own struggles with it and recovery experience and reading the recovery stories of so many people who went through a hard time with it for extended periods too.

      Katelyn it can be very normal with this thing to experience numbness, tingling, low grade fever going up your spine and whole body - just hoping so much this can settle and it's always worth checking in with the doctor and hoping so much they can reassure and put your mind at rest.

      The worry and anxiety is just awful - this virus often tricks you into thinking something else is going on because it's so intense and so many wide ranging symptoms. I remember thinking 'Surely ALL this can't be coming from just mono?'. But it was and it got better, thanks to God only. God is the great healer, hang in there guys, I know it was only down to him that I was able to get through this as I was so down and weary after a period with this thing too, and I believe that God will bring healing to you Katelyn and to you Josh - hang in there and just remember to look after yourself, get plenty of rest and just take one day at a time. Even if things aren't brilliant today, remember that this is just temporary in the grand scheme and that with some time you will get through it and back to health again.

      Thinking about you both and hoping for a settled and better weekend and week ahead.

      Craig

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    • Posted

      ok well i just bawled my eyes out reading that lol you are so comforting i appreciate your encouraging words it means alot and i know josh will appreciate reading that as well.. the doc called back today to let me know i dont have any swelling of spleen or liver! praise God for that and then he will call back later once he goes over my bloodwork to see if this is just EBV or what type it could be

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    • Posted

      oh ok i guess thats what it means im still confused about it too the doctor mentioned something about CMV but i tested positive twice already for EBV I will let you know what he says though

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    • Posted

      or maybe he ment he was checking to see if it formed into one of those other viruses too? ive been confused about all of this idk if you can have more than one or just one or the other

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    • Posted

      thats exactly what i was told, high numbers to a past infection of ebv. from what i read there are lots of viruses that can cause a mono like illness such as toxoplasmosis , CMV, Epstien barr, rubella etc. i think the testing for ebv is a bit hit and miss or its very good at hiding from tests as a lot of people on here have said the same about their results

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    • Posted

      i wont pretend i understand it lol i just know a lot of peoples stories ive read say their tests only point to a past infection and they still feel sick. whether thats because its a similiar virus, an unknown virus, the tests arent up to much , or its some kind of post viral syndrome i dont know. theres lots of different opinions. i do know ive never felt anything like it in my life

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    • Posted

      oh my goodness! i am so sorry youve had to deal with this for so long..im sure you have gone through crazy symptoms like alot of people on this forum. what are your current symptoms?

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    • Posted

      Hey Katelyn,

      It's really good to hear that you don't have any swelling of the spleen or liver, that's an encouraging sign for sure. Oh I remember only too well how tough it was to live through this virus and want you to know Katelyn that there is an end to it and it doesn't last forever, even though I know it doesn't feel that way at the time.

      Hoping that the blood tests too can offer some reassurance that the symptoms are coming from EBV, which I'm sure it must be by the sounds of it. Hang in there Katelyn, you are going to get through this time and remember God is on your side!! He wants you well and if it takes a little time for full recovery don't panic that can be normal with mono but truly truly you will get there with some time! Message any time and thinking about you.

      Craig

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    • Posted

      I know it can be so confusing when they mention so many different names of viruses and things. My understanding is that mono / glandular fever is in most cases caused by the EBV virus, but there is also a virus called CMV too which is very similar and also causes mono.

      Craig

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    • Posted

      thank you craig, i think the results come in sometime next week im pretty sure it is EBV ive tested positive with high numbers twice already but it never hurts to check again i guess it is a super scarey thing to go through

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    • Posted

      Oh it is very frightening to go through Katelyn, hoping that the blood tests can reassure you and put your mind at rest, let us know how you get on with them.

      And it can be normal with blood tests for EBV too that it only shows up in the first few weeks or early stages as positive - often blood tests after that show normal but you can still not be feeling well - so if that is the case don't panic it's very normal and your body just takes a bit of time to recover, but truly it will recover!

      Hoping for a better week ahead and remember you will get through this and back to full health again - this does get better!

      Craig

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    • Posted

      hey josh just wanted to say the doctor called back and said no active virus showed up and he had checked for 3 different kinds i think...but i have an appointment monday because he wants to talk about things and see how im doing he may be able to explain more in depth of what the bloodwork shows if this is the acute recovery phase like ashley had explained i'll let you know what he has to say about all of that!

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    • Posted

      Well no matter what i hope to see you feeling better and back to your normal life very soon. I am down in the dumps feeling awful feel like i can not do anything without feeing worse but one day i will be better. I just have to continue to try to work and make it through every day.

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    • Posted

      i know this is rough josh i have been down in the dumps lately too i hope that you get better and we will its just going to take time. im happy we have this though so everyone on here can comfort one another it may not help physically but it helps mentally if i wouldnt have found this forum i would be freaking out even more than i already am...i pray that you have better days i know thats gotta be rough working but just remember like Craig told us it wont be forever josh we can get through this even though its tough at the moment

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    • Posted

      Hey Josh and Katelyn,

      Just wanted you to know I am thinking about you both today. Noone can truly understand the pain of going through the mental anguish and all the fears, worries, panic and anxiety that the longevity and intensity of this virus can bring.

      Having to cope day after day feeling so beaten up and just unsure of when things are going to turn around is the most awful experience, and I wouldn't wish it on anyone - and it's so hard too when some people don't understand either because it is an 'invisible' illness in that you might look okay on the outside but they don't know how truly awful this thing makes you feel physically and mentally.

      But absolutely I want to encourage and reassure you that there is FULL recovery from this virus - it is so frustrating that it takes a little time for most people but just take one day at a time, don't look far ahead, today's challenges are enough for today and be kind and understanding to yourself - and remember that God is in control, He is the great healer and He is going to pull you both through this and bring you back to full health, I really believe that, so hang in there and thinking about you today. Remember too if you can talk about how you are feeling to someone you trust and that you know will be supportive and compassionate, that is really important too - dealing with these feelings on your own is too much for anyone to bear. The forum here is great and a great way to chat but also it's important to talk to someone in person too, be it a family member, friend, doctor, minister, occupational therapist (an OT helped me a lot during recovery). And remember you're not alone - God is there with you every step of the way, even when it doesn't feel like it, He is there and is for you and wants you well again - that will happen!

      Message any time and hoping for a stable and settled day today for you both.

      Craig

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    • Posted

      Also Katelyn and Josh....if you can do something you enjoy to try and lift your mood and spirits a bit, it doesn't have to be something that takes a lot of energy, even if it's just seeing a friend, watching fav tv show / film, having bath, reading, listening to music, listening to relaxation videos on You Tube - finding something to give you distraction, even if just for a little while each day, can be really helpful I found. Going for a short walk each day helped me, but whatever you feel able to manage - listen to your body and be kind to yourself - you deserve to do something nice for yourself as you've been going through such a tough time - and remember things will get better!

      Craig

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    • Posted

      hey josh how are you today? i just wanted to tell you i got back from the doctors and he said my case is an extreme case my IGG numbers where through the roof and im in the recovery phase of it with severe inflammation still in my body...he said when you get it bad like this your body resistance is low but over time your body will fight it off...he gave me steroids to take to speed up recovery and said its very helpful in severe cases like this....josh i just wanted to tell you that you will be ok the doc gave me a peace of mind because he said when your numbers are so high even if it doesnt show up as an active virus you will still be feeling like crap for months afterwards because its not like normal mono at all!

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    • Posted

      yeah i have that too sometimes i will feel ok and some days i feel horrible... has the breathlessness gotten better for you? i sure hope so that was one of the worst symptoms for me...at least you can see some improvement in feeling ok sometimes instead of horrible 24/7 thats a good sign...im not sure what my igG numbers where in the beginning but the recent one shows 128 so it came down alot apparently

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    • Posted

      oh yeah i felt winded just trying to walk to the bathroom or trying to cook food i thought i had something wrong with my lungs ive read other people saying they had bad breathlessnes also...and then when i had the bad anxiety it made it worse too just know if your still dealing with that you arnt alone it is a part of the virus

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    • Posted

      oh trust me i understand i miss going to school and work so bad and having a good time with your friends and family..we will get better it just takes alot of time with this unfortunately but every time you get discouraged just look back at how far you have come over the past few months thats what keeps my spirits brighter each day because idk about you but the beginning of all this i truly felt like i was dying now just being able to handle and do more things than the beginning of all this is a blessing even though you dont feel 100% yet

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    • Posted

      yeah you are right at one point i could not get off the couch breath sleep eat or even think about doing any sort of activity including barely walking to the bathroom i am glad thats over

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    • Posted

      same here that was a living nightmare...i had bad insomnia too towards the beginning because the fast heart rate really scared me i also like you could barely get up and walk just to make myself food or go brush my teeth i remember trying to squeeze toothpaste out of the tube was hard for me to do...like just the little simple things you take for granted...its insane how ill this virus makes you

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    • Posted

      Still thinking about you Katelyn, you are a blessing to the forum here encouraging everyone. Hoping that you feel stable and settled today, remember things will get better!

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