Atypical Herpes Symptoms / Nerve Damage

[tiredgirl]

Hi, 

 

I’ve had Hsv (never tested, but pretty much confirmed from physical symptoms) for 18 months. I initially had a tiny outbreak on my tailbone area last year which cleared up within a few days never to be seen again. Since then I’d had no other outbreaks or issues until 4 weeks ago where my tailbone area started to tingle/buzz. Since then, I’ve had a buzzing/pins and needle sensation in my tailbone to my feet and it’s driving me insane. I’m really worried it’s nerve damage or post herpetic nueropathy and it’s making me so upset. I just don’t understand why it would happen suddenly after having the virus for so long with no outbreaks? Can anyone help? I’m worried sick and I don’t know how to get help for this as doctors aren’t taking me seriously or even noting that it’s herpes causing this. If anyone could shed light I would appreciate it greatly, thanks.

[Flowerteacher55]

Hello,

I hope you are feeling a little better since you posted!

I am so sorry you are experiencing this emotional and physical pain. You don't deserve this at all, and please know that there is hope! 

Viruses are odd beings... they can be triggered or "awoken" by different triggers, usually that place some type of stress on the body. This can include emotional stress, friction, another illness (even a cold or flu) or hormones, among other causes. 

Have you gotten a chance to get an IgG blood test to confirm it's HSV? Also, this would tell you the type of HSV it is. The extreme pain and tingling sounds like it is more likely HSV-2. 

To help soothe the nerves, try heat or ice packs. 

Also, have you noticed any other symptoms besides the tingling? Have you noticed any redness, itching, sores, or flu-like symptoms? Also, on your little bio section to the left, it says you've been experiencing Tinnitus... I also have this and it is really annoying. It is often times due to sinuses! Also, I have TMJ which causes it and it is very painful. TMJ can also cause neck and head pain and eye pain. Perhaps get checked out for that as well! 

You also mentioned vision issues in your bio. That coupled with the nerve pain and Tinnitus definitely sounds neurological, and could or could not be herpes-related. These symptoms are a sure sign that your body is under distress, and perhaps getting a general blood work panel done to see if if your levels are healthy and if your white blood cell count is up would help shed some light on what could be going on. 

Also, a spinal tap could help see what's going on, too. They aren't very pleasant but they help in diagnosing neurological conditions. 

I hope that this all helps. Please take care of yourself and stay strong. We are here to support you!

Sending blessings of health and happiness your way 🌅❤️!

Blessings, 

Grace

[tiredgirl]

8 hours ago, Flowerteacher55 said:

Hello,

I hope you are feeling a little better since you posted!

I am so sorry you are experiencing this emotional and physical pain. You don't deserve this at all, and please know that there is hope! 

Viruses are odd beings... they can be triggered or "awoken" by different triggers, usually that place some type of stress on the body. This can include emotional stress, friction, another illness (even a cold or flu) or hormones, among other causes. 

Have you gotten a chance to get an IgG blood test to confirm it's HSV? Also, this would tell you the type of HSV it is. The extreme pain and tingling sounds like it is more likely HSV-2. 

To help soothe the nerves, try heat or ice packs. 

Also, have you noticed any other symptoms besides the tingling? Have you noticed any redness, itching, sores, or flu-like symptoms? Also, on your little bio section to the left, it says you've been experiencing Tinnitus... I also have this and it is really annoying. It is often times due to sinuses! Also, I have TMJ which causes it and it is very painful. TMJ can also cause neck and head pain and eye pain. Perhaps get checked out for that as well! 

You also mentioned vision issues in your bio. That coupled with the nerve pain and Tinnitus definitely sounds neurological, and could or could not be herpes-related. These symptoms are a sure sign that your body is under distress, and perhaps getting a general blood work panel done to see if if your levels are healthy and if your white blood cell count is up would help shed some light on what could be going on. 

Also, a spinal tap could help see what's going on, too. They aren't very pleasant but they help in diagnosing neurological conditions. 

I hope that this all helps. Please take care of yourself and stay strong. We are here to support you!

Sending blessings of health and happiness your way 🌅❤️!

Blessings, 

Grace

Hi Grace,

 

Thank you for the lovely words - I appreciate it. With all of this said, I have had these conditions checked out and I think these came on due to loud music abuse and stress over the years, but thank you anyways! 
 

With reactivation, I make sure to keep my immune system in good check and when this “reactivation” occurred 4 weeks ago, I had no stressor that I could think of. I also haven’t had any redness, sore, itchiness at all - hence why I’m worried. Can this actually happened? I’m terrified. I was under the impression that HSV couldn’t cause nerve damage, atleast thats what experts say. But since browsing this forum, it feels like people are saying differently. My first outbreak was so minor I wouldn’t of even noticed it, so to go from that to full blown nueropathy when I’m a healthy person? I’m so confused and worried 😞 

I’m assuming I have HSV2 as I’ve never had any oral signs and I caught it from my long term partner when having unprotected sex once! But I am booking myself to get a blood test to get some clarity. 
 

I really just want to know if I should be worried or not? It feels like my whole body is crawling of tingling all of the time and it’s been so debilitating and has caused me great emotional and professional distress with not being able to sit down without feeling like my legs are shaking. I’m trying to stay positive and praying this isn’t permanent but it seems like I can’t get a straight answer anywhere or even knowledge as to why this is happening.

 

Anyways, thank you for your time and I appreciate your support ✨

 

[Stars-and-Stripes]

@tiredgirl do you have an update? How are you feeling? How is the nerve pain now? 

[Flowerteacher55]

@tiredgirl Hello!

I am SO sorry! I never answered 😞!!!

  I hope you have been doing well and things have been better for you ❤️ You are in my thoughts and prayers. Feel free to reach out to talk anytime!

I think that of course a little worry is okay, but you are being proactive about it and getting blood testing, so you are doing something with that worry! 

Sending love and light your way ❤️!! 

[J1010]

9 hours ago, Stars-and-Stripes said:

@tiredgirl do you have an update? How are you feeling? How is the nerve pain now? 

Also interested if there's any update on this, or anybody else thats had similar things going on.

Since December I've had a terrible time with HSV2, had the worst outbreak to date and had all kinds of weird neurological things going on too, tingling/buzzing in my legs (started in one foot) slight blurred vision in one eye.

Also had problems getting doctors to listen to me, when my GP did start to listen they suspected MS as all my bloods were normal apart from vitamin D which showed slightly low. I paid private and saw a consultant neurologist yesterday and am having an MRI scan next week.

I've had 2 full STI screenings in the last 2 years all negative results but decided to test for syphilis again yesterday as that can affect vision and nerves etc... 

[tiredgirl]

Hi all, 

 

Thought I’d reply on here. Sorry to hear that some of your are going through something similar. Unfortunately I am just getting worse and worse. 
 

I’ve had my blood done, MRIs done, all normal. No answers. Nobody will even give me a test for herpes as I don’t show any symptoms, or If I do, it’s one spot like bump and gone within a day. 
 

I have tingling, buzzing, burning in my back, legs, shoulders, arms, and face. This hasn’t stopped for months, I’m borderline suicidal at this point, I just want it to stop or atleast someone take me seriously, but nobody believes this is related to hsv, but I know it is. 
 

i now have hsv2 on my face, which has made my vision and hearing worse. I also have a constant electrical current feeling in my head, presumably where my ganglion is, where hsv is laying - same to my sacral ganglion too. I’m honestly just over it all now, I can’t seem to find any help or answers. Sorry to depress you all.
 

people really need to wake up and realise hsv can cause neurological symptoms, as my “breakouts” are literally one pimple that’s gone in a few days, but yet I’ve been left with constant nerve pain all over my body, tingling sensations, tinnitus, visual blurriness, headaches and general wellness being completely off, it’s a joke.
 

take care all <3  

[Stars-and-Stripes]

@tiredgirlmy goodness I'm so sorry.  Thank you for the update.  I've been into my 1st intial outbreak for a month now with no antivirals. Hsv2 positive IgG test.  I'm having severe constipation but I can still urinate. I literally have to take a laxative or manual removal to some extent. Sorry to be graphic here. There is numbess in anal/perineal area and the bottom of my feet. I have been using as TENS UNIT for nerve stimulation.  It hasn't helped on constipation but I do think the numbess is slightly improved,  just slightly though. I think this is what they call "Virus Related Neurogenic Bowel  Dysfunction." I've also read several testimonials of others say they think the virus shocks the body with the 1st OB and that over time like 2-3yrs the constipation/nerve damage has been about 95% better.  I pray this is true. I also read that drinking Smooth Move tea was really helpful for them.  Please keep me in your prayers as I will do the same for you!

[Bloomer]

HSV infections can cause all plethora of neurological complications unfortunately. Usually this happens during primary outbreak but some people (and I am one of them) suffer neurological symptoms even with reactivations or have permanent neurological complications even without OB's. 

Unfortunately medical community usually deny any correlation between HSV and neurological complications even though neuralgia/neuropathy caused by HSV is well documented and you can find lot of medical research about it. Currently there is no efficient treatment fot this, only thing doctors can do is to offer more antivirals and nerve pain meds. 

Don't be disheartened, lot of people get nerve pain for year or two after contracting this infection and then neurological symptoms go away and appear only with OB's. So my advice is to be patient and experiment with antivirals and nerve pain meds (of course consult you doctor always). The sad truth is that some people experience nerve pain for the rest of their life thanks to this infection. 

Eat well, sleep well, take supplements for immune support and nerve health and try not to stress too much.

I will never stop repeating that HSV is not just skin condition because it is not. It is nerve infection and can cause serious neurological complications. These are the facts. With downplaying this infection we will never have better treatments and better medication for treating HSV infection. 

All the best and take care! 

 

[J1010]

Hey all, quick update with my situation I had a follow up with the neurologist yesterday, all blood tests came back negative, MRI scan was clear. He said there is a possibility HSV2 is causing the neurological problems I'm having, he also said there's a possibility I have/had mollaret's meningitis but at this point wouldn't recommend a lumbar puncture unless symptoms get worse. I've been on Acyclovir daily pretty much since all this began in January and that's obviously the treatment for mollaret's so its very possible. 

Outbreaks are still persistent, pretty much as one heals another comes along, they are pretty mild OB's but still very frustrating as it seems to be never ending! 

Hope you're all good! 

[Stars-and-Stripes]

@J1010 the more I'm learning about hsv2 the more I realize how messed it is. The neurological complications are endless.  I'm also debating getting my 2nd covid booster shot too. All the covid shots I had were all before my newly acquired hsv2. And I've heard horror stories.  I'm wondering if they can switch you to another medicine.  Have you asked them about it? My numbness seems to be getting better but the constipation is not. I think I'll probably need to take a stool softner from now on. I just pray the recurrent OB are bearable so I don't have to take an antiviral. Thank you for updating us and keep it up. 

[J1010]

8 hours ago, Stars-and-Stripes said:

@J1010 the more I'm learning about hsv2 the more I realize how messed it is. The neurological complications are endless.  I'm also debating getting my 2nd covid booster shot too. All the covid shots I had were all before my newly acquired hsv2. And I've heard horror stories.  I'm wondering if they can switch you to another medicine.  Have you asked them about it? My numbness seems to be getting better but the constipation is not. I think I'll probably need to take a stool softner from now on. I just pray the recurrent OB are bearable so I don't have to take an antiviral. Thank you for updating us and keep it up. 

@Stars-and-Stripes I'm not sure if you've read my original post on here, my problems started last November 2-3 weeks after my second Covid vaccine, I got shingles (I've since read there is medical evidence the vaccine is linked to reactivating shingles) that cleared up and then all these problems and constant OB's started end of Dec/Jan, so I for one will not be having any more boosters given that the covid strains seemed to be less aggressive than they originally were.

As far as I know thats the only medication available in the UK but the neurologist did say to go back to the GUM clinic and ask if there's any other options available. The neurological symptoms have calmed down for me now, they come and go and are much milder than they were.

I'm staying optimistic, as although the OB's keep coming they are much milder each time so at least thats something!

Stay positive and try not to worry about it too much (easy said I know), I hope you're feeling better soon!

[Stars-and-Stripes]

@J1010 yes, I did read your previous comments about your month to month issues. That's what has me worried with the 2nd covid booster shot.  I'll just have to stew on that awhile. 

It's crazy to think that medicines available in the US are not available in the UK or visa versa. It should be available to everyone,  everywhere! 

I read other comments from another feed that they eventually calm down. So glad that seems to be the same in your case now!

Time is our friend.  So we'll just hope that time heals all wounds. 🙂🙏