Burning and tingling long after initial outbreak

[hi202020]

Hi guys,

I was recently diagnosed with gHSV1 and my initial outbreak cleared up over a week ago and I am still experiencing neuropathic burning, itching and tingling all around my genitals. I don't have any signs of a second breakout, so I'm wondering if this is common and if so if it's something that is associated with the initial outbreak, and if I should expect it to go away, and not come back, or is this something that tends to stick around? I'm really curious to hear other people's experiences with this, and also I'd like to understand what exactly is going on physiologically if anyone has insight. 

I'm hoping that my first outbreak will be the last, which seems to be a good chance with gHSV1, and of course I'm hoping the burning, tingling and itching I'm experiencing post outbreak goes away for good soon as well, and just want to hear other people's experiences or even get some data as to what I can expect here.

[Michgirl73]

On 3/3/2019 at 11:53 PM, hi202020 said:

Hi guys,

I was recently diagnosed with gHSV1 and my initial outbreak cleared up over a week ago and I am still experiencing neuropathic burning, itching and tingling all around my genitals. I don't have any signs of a second breakout, so I'm wondering if this is common and if so if it's something that is associated with the initial outbreak, and if I should expect it to go away, and not come back, or is this something that tends to stick around? I'm really curious to hear other people's experiences with this, and also I'd like to understand what exactly is going on physiologically if anyone has insight. 

I'm hoping that my first outbreak will be the last, which seems to be a good chance with gHSV1, and of course I'm hoping the burning, tingling and itching I'm experiencing post outbreak goes away for good soon as well, and just want to hear other people's experiences or even get some data as to what I can expect here.

Yes I experienced nerve issues. It took up to 6 mths before it started to get better but comes and goes at times. I was on suppressive therapy for the first couple months and didn’t experience it until I took myself off. I experienced it more in my thighs and buttocks area. I pray mine don’t come back but I do take supplements to help with that.

[Meggers23]

I’m experiencing the exact same thing. My ghsv1 initial outbreak (about a month ago)  was bad sore wise and healed up quickly. It wasn’t until last week I started experiencing nerve pain, skin sensitivity and swollen lymph nodes. I ended up with a second less severe outbreak, but the leg pain was unbearable. Doing another lower dose round of valtrex helped with the brevity of sores, but I still have skin sensitivity down my thighs, up my back, and numbness in my groin.

All of it has made me really paranoid that there’s something else, so it helps to know someone else has experienced it too. I’ve seen other posts about it, especially related to ghsv1, so I think it’s normal, just awful. Hope you feel better and that this helps!

[Ellie88]

@hi202020 and @Meggers23 I just posted about this too! I’m 4 months in from my first outbreak and as soon as the sores (really tiny) cleared all these sensations began, some days are better than others, but they’re always there. I’ve tried lots of immune boosting supplements and Valtrex for 2 months but nothing seems to help. I hope with time it gets better and am so sorry to hear that you’re experiencing this feeling too. 

[hi202020]

@Michgirl73 @Meggers23 @Ellie88 Thank you guys for sharing your experience, sounds like this is pretty common. I suppose it's just the virus having made its way through the neural pathways and there is a lingering irritation there of some kind.

I'd be really curious to hear from any veterans if they experienced this and how long it took for it to go away.

Hang in there guys! I've been following a strict Paleo/Lysine diet, taking immune system support supplements, getting sleep and exercising every day as well as meditation and wim hof breathing/cold water exposure and so far I haven't had a 2nd outbreak for 2 months since the first one - fingers crossed it goes into remission for good.

Now I just have to get my head straight to get back into the dating game. I feel like I will have to date a girl for like 6 months to a year before I would trust her enough to tell her such a sensitive piece of information and that's a long time to date with no intimacy but I guess that's the new world I live in - at least from my point of view right now. In a way this feels empowering because I am going to screen heavily and only date people I feel could be a long term partner. 

[hi202020]

On 3/15/2019 at 5:59 AM, Ellie88 said:

@hi202020 and @Meggers23 I just posted about this too! I’m 4 months in from my first outbreak and as soon as the sores (really tiny) cleared all these sensations began, some days are better than others, but they’re always there. I’ve tried lots of immune boosting supplements and Valtrex for 2 months but nothing seems to help. I hope with time it gets better and am so sorry to hear that you’re experiencing this feeling too. 

@Ellie88 @Meggers23 Hey guys I hope you're doing well!

I wanted to check in on this thread. I am still experiencing the neuropathic itching and burning all over my groin. It's been about 3 months of this non-stop since my first OB.

How are your guys doing?

Unfortunately it doesn't seem like there's an end in sight for me, I've been taking 1,000mg/day of acyclivor to try to counteract it with no luck so far. I've also had an anti herpes diet, I'm taking supplements, exercising, etc so I'm doing everything I can do 😕

[ofe1818]

On 3/3/2019 at 9:53 PM, hi202020 said:

Hi guys,

I was recently diagnosed with gHSV1 and my initial outbreak cleared up over a week ago and I am still experiencing neuropathic burning, itching and tingling all around my genitals. I don't have any signs of a second breakout, so I'm wondering if this is common and if so if it's something that is associated with the initial outbreak, and if I should expect it to go away, and not come back, or is this something that tends to stick around? I'm really curious to hear other people's experiences with this, and also I'd like to understand what exactly is going on physiologically if anyone has insight. 

I'm hoping that my first outbreak will be the last, which seems to be a good chance with gHSV1, and of course I'm hoping the burning, tingling and itching I'm experiencing post outbreak goes away for good soon as well, and just want to hear other people's experiences or even get some data as to what I can expect here.

HI there! I have experienced the same thing sense my IO which was at the beginning of April. I started daily supplements and the sores cleared, but the tingling in my thighs and sensitivity of my groin and penis tip still linger. Seems like a normal thing to have happen and my symptoms do seem to be getting better everyday. I am planning to stay on supplements until the end of May and then discontinue to see what the effects might be. I am not someone who has ever taken daily meds and would prefer not to. I almost think I need to test my immune system to see what sort of regularity I might have with outbreaks so I know what the true effects are for me. Will keep this thread posted on my post IO symptoms.

[hi202020]

On 4/29/2019 at 9:02 AM, ofe1818 said:

HI there! I have experienced the same thing sense my IO which was at the beginning of April. I started daily supplements and the sores cleared, but the tingling in my thighs and sensitivity of my groin and penis tip still linger. Seems like a normal thing to have happen and my symptoms do seem to be getting better everyday. I am planning to stay on supplements until the end of May and then discontinue to see what the effects might be. I am not someone who has ever taken daily meds and would prefer not to. I almost think I need to test my immune system to see what sort of regularity I might have with outbreaks so I know what the true effects are for me. Will keep this thread posted on my post IO symptoms.

Thanks for chiming in!

It does seem like my symptoms are getting slightly better day over day. I have been doing Wim Hof breathing and using Joe Dispenza type visualization of my white blood cells eradicating the virus. I don't know if it's helping but it doesn't hurt to try. This is in addition to all the other healthy habits and diet that are recommended. I'm gonna speak to some HSV doctors/specialists to get a better idea of what is going on with this and will report back if I find anything interesting!

[Navigating this new normal]

Interested to hear if this has lessened? I also have hsv-1 and had my first outbreak a little over two weeks ago. The lesions cleared up about 1.5 weeks ago but since I’ve had lots of itching and tingling mostly on my butt cheeks (which was not where the lesions were). It also just kind of feels weird around my butt too. Not exactly painful but like there’s a fissure. I’m paranoid it’s the sign of a second outbreak and have been compulsively looking for lesions but it’s like day four of this and so far no bumps. Also I have a lot more discharge than normal (which also happened during my first OB). I’m taking suppressive valtrex. Do you think it’s just after symptoms or is this a sign another out break is coming? 

[Stunnedbythis]

3 tests IGG all negative .No obvious ob but pressure and all itching burning crawling tingling stinging. DR refused to test 3 times and finally after 3 visits agreed and it was neg. I went to other Dr for 2 subsequent IGG .even up to 9 mos. All neg.. My Dr is also the community public sex Dr. .I said its hsv ( kissed by drunk lady slobbered  actually) then 36 hrs. Tingles Severe headache nausea and intense fatigue all for 4 weeks.  

Burning tingling crawling itching stinging sense of leaking wetness along many nerves in face and top lip. Even feel tingling crawling nside eyes at times . 

They sent me to MS clinic  MRI took 18 months - follow up this Jan at 30 months.

Saliva burns at times. Often.  

Skin is tight and numb esp after shaving. 

Total nightmare as it burns itches stings crawl along entire trangemenial nerves. At 30 months of daily it's now about 70% of initial pain.

Dr will not prescribe antiviral as she says its prob not HSV and if it is everyone has it. Drugs are more dangerous to kidneys?

This has affected All of me.. was learning guitar -stopped. Worked out 4 times a week for life Havent Been in gym in 2 years. 

Really impacted my relationship choices...I backed way way off turned cold . Used to love touching and kissing..I will never risk it. DR SAID to risk it. Dont need to divulge since she says I dont have it as IGG is neg...

I had fibromyalgia in my 30s..I go into a flare at times. My glands ache all over for months but I was good and healthy for 7years prior to kiss..

I became ultra depressed and suicidal bc I was in love and I backed way out of relationship..

I still suffer the emotional.loss along with pain. Even feels like tingling hives under lips . 

All Dr I speak with are not concerned.  

Neurologist said buy a bike enjoy life.

Anyway...its been since Sept 30 2017 when a drunk lady fell on me and I stopped her fall and she slobbered all over my lips. 

Big joke. It was assault in my eyes.

Lost amazing person and my passion.

No more poetry writing   no guitar no working out..totally obsessed with getting a dr to listen.

 

Can't do Westen Blot in Toronto. Thinking of flying to Univ of Washington. No idea how to proceed to getting Westrn Blot. 

Called Univ of Wash. Then contacted multiple labs to see if they will do testing and ship. No not without original kit which cannot be sent across the border ..I did get a Dr request. But can't get kit . 

Even still that will give me a starting point after 30 months daily.

Oh and every Dr even Nuero will say these symptoms are impossible to be HSV 

So no buy in from them

I have a.Naturalpath who deals with HSV on board.. lots of lysine MitchCondroita licorice Cod liver oil vit c....after 6 weeks. Minor change.

Coffee makes it all worse. I drink 4 to 6 coffee a day.

 

That's it 

[Blue1982]

I have had tingling, burning and random pains every since my first outbreak 6 months ago. Wondering if it ever got better over time for anyone? I get the daily prodrome symptoms with no outbreak.