8 months ill and still so worried please help if you have had any of the same issues.
Posted , 8 users are following.
Iam 8 months sick and the original fatigue and horrible stomach pain and pins and needles are gone for the most part. The severe muscle pain has eased. My husband was on holidays from work recently and i felt so good the week he was off i actually thought i was at the end of this, just having him home must have helped my so much. He went back to work and my symptoms are back and i really believe alot are stress related. where i am now is my left wrist hand and arm are weak, worse some days than others you could say it comes and goes but its def weaker all the time than it use to be. The muscle in the ball of my hand on my left is also decreased i dont no if its related or if its carpal tunnel. Has anyone had this weakness and muscle loss in their hand?
less often my mouth gets tight, my speech is slurred only for a word or two last a few days and cycles around like this. my tongue feels weird but no sore throat.
And with my legs most of my trouble is also with my left. my thigh and calf muscle can pain up.and down and im still getting muscle twitches in them and in other parts of my body too.
still get floaters in my eyes and flashes sometimes. and the sunlight is still a major irritation.
if anyone is experiencing the same id love to hear from you.
Thanks
Siobhan
Ireland.
0 likes, 13 replies
vicky29880 siobhan91906
Posted
Hi, yes I have had it all, plus many more neurological symptoms, except for the slurred speech/mouth symptom... My symptoms started Feb 2018 after a flu type virus. Doctors were afwul and never really tested for mono then. I thought I was losing my mind but things do get better after 8 months. My left arm was weak too, jelly legs, I had it all..What helped me get back on my feet at month 8, was a 6 month vit b12 injection treatment because of my low b12 levels, so maybe its worth checking... Im still left with some finger numbness and internal vibrating upon wakening but not as intense as it used to be.
siobhan91906 vicky29880
Posted
Hi Vicky,
Thank you so much for the reply, its great to hear from someone. i agree about the doctors it was 3 months of weekly visits and too hospital vista for them to tell me i had ebv. You forget the horrific amount of symptoms you go through once they have eased. tunnel vision was a big one for me in the beginning. sorry to hear your still suffering at the near 2 year mark. i still have internal vibrating at night and in the morning. sometimes weird pins and needles in my back, have you had this? I also get strange indentations in my skin now and then like i have been leaning against something but i havent. They go away after awhile, do you experience this?
Thanks for taking the time.
Siobhan
vicky29880 siobhan91906
Posted
Hi again, the internal vibrating and tremors have been the worst for me. Im sure I had more than 30 symptoms when all this started that set my anxiety through the roof and even though most of them are mostly gone and I can function once again as a normal human being, this internal vibrating just hasnt switched off and I cant stop worrying about it. Like you its at night and when waking up... have you noticed if your symptoms are worse around ovulation or period? It feels like this beast has affected my homones and has caused some kind of chemical imbalance?? And yes I had the pins and needles in my back and elsewhere too.
Thanks for your reply, hope thing are getting better xx
a35315 vicky29880
Posted
Hi Vicky, what were your neurological symptoms? I've had this disconnected feeling since November and even my sense of feel seems a little compromised especially in my face
Excitedforgoodh siobhan91906
Posted
private message me if you want to know what I did.
theworriertx siobhan91906
Posted
my symptoms are literally a mirror image of yours. Ive been to 3 different neuros because i thought i had ALS or MS, or some other Neuro disease. Its been 4.5 months of you exact symptoms. Including my speech hasnt been slurred per se, but my tongue feels weaker and its hard to enunciate certain words and syllables. Even my vision has suffered from this, its the only thing ive tested positive for. Ive had numerous labs, MRIs' and spent thousands. This disease is nasty and 4.5 months im struggling really bad and its hard to cope. I cant imagine 8 months....
siobhan91906 theworriertx
Posted
Thank you for the reply. You dont no how much it means for someone to have the same symptoms. I have thought i have had much worse too the anxiety is horrific!
Sorry your struggling and it has gotten easier if thats any relief to you. If i listed all my issues from the start it would fill a book you once they have moved on you forget because its on to the new symptom. I have had a CT and a MRI aswell both clear.
Have you had much joint issues my knees click going up and down stairs and early on i loss muscle around my knees on the outside upper and inside lower.
Thank you and I hope you have some days where you feel ok
theworriertx siobhan91906
Posted
During the course of this whole thing, ive gone down such a deep rabbit hole and cant get the twitching off my mind. Ive developed severe anxiety and panic attacks because of all this. I am seeking treatment for my anxiety these days. Ive definitely had joint issues in my toes, knees, fingers, shoulder, and ive feel like i also slighltly loss muscle in my left leg as thats where i get alot of the weakness. Im still working with docs because i cannot accept this is all just EBV. Im having a hard time but nothing has been postive other than EBV test. I hope you get better as well, but i definitely have basically all your symptoms.
theworriertx siobhan91906
Posted
Just checking in, are you still having symptoms? Have you made any recovery?
siobhan91906
Posted
Hi thanks for checking in!
i feel about 85% back to normal which is huge but also a no to the question are they fully gone. Im now at a stage where i have had numerous weeks of felling back to myself and they the other day started with an arthritis pain in my left wrist again. it only lasted a day or two. My left leg and arm are still weaker than when this whole thing started 10 months ago but dome days they are perfect and its remembering not to over do it on them days because i will have a little back step bit over all i feel like i am recovering its just taking so long and having to be so considerate to your self. How are you worrier? are you feeling any better?
theworriertx siobhan91906
Posted
im still having symptoms and i am 6 months in. I started paying $20 per week for vitamin b shots and its helped a ton for energy, fatigue and pain. Its helping my body recover. I also started taking magnesium for twitching and increases for water intake.
siobhan91906 theworriertx
Posted
Hey Worrier,
How are things going? im having a bit of a set back at the moment with a lot of original symptoms. really have had enough of this now.
Neenie2020 siobhan91906
Posted
Hi, I have had all those symptoms, I find when I'm busy they don't bother me as much and I started taking magnesium. Do you ever have pain in your eye and facial pain as well as pain in your nostrils?