Nerve pain?

[Kbh0929]

Has anyone experienced lasting nerve pain after initial outbreak?  I’m going on week 5 of nerve pain and it’s the most annoying thing I’ve ever experienced!  

[Michgirl73]

Yes I still struggle with nerve pain on and off.. it sucks.

[Elle27]

On 11/13/2018 at 6:16 AM, Kbh0929 said:

Has anyone experienced lasting nerve pain after initial outbreak?  I’m going on week 5 of nerve pain and it’s the most annoying thing I’ve ever experienced!  

I’ve had an on and off again outbreak for 10 weeks, debatable whether it’s the same outbreak or multiple, I’ve experienced nerve pain all over throughout. I am also hoping that it goes away at some point. Very uncomfortable and it gives me anxiety. 

[Kbh0929]

1 hour ago, Elle27 said:

I’ve had an on and off again outbreak for 10 weeks, debatable whether it’s the same outbreak or multiple, I’ve experienced nerve pain all over throughout. I am also hoping that it goes away at some point. Very uncomfortable and it gives me anxiety. 

That is exactly how I’ve felt.  I hope you feel better soon!  Was this after your first outbreak?

[Elle27]

11 hours ago, Kbh0929 said:

That is exactly how I’ve felt.  I hope you feel better soon!  Was this after your first outbreak?

Thank you! I hope you feel better soon! Yes it’s my first one

[Victory_in_Defeat]

Is this nerve pain in the genital region? Or does it include the lower back and legs region as well?

[Kbh0929]

14 minutes ago, Victory_in_Defeat said:

Is this nerve pain in the genital region? Or does it include the lower back and legs region as well?

It is in the genital region and also around my tailbone and the right side of my rear end.  

[Blue1982]

Hi there!

just wondering if this ever got better for anyone?

been having weird nerve, dull pain since initial outbreak in November 2019 but no second outbreak yet.

thank you! 

[Kbh0929]

My initial outbreak was October, 2018 with no other outbreaks since.  I still have some but very little nerve pain.  I hope you feel better soon!  It will get better just takes time for the nerves to heal.

[GSMom]

Yes, it seems my outbreaks stay within my nerves and never reach my skin. I have excruciating right hip, groin, buttock, and right leg pain. I almost wish I just had skin outbreaks without this nerve pain. It is awful and I wouldn't wish this on anyone.

[BonBon]

I also have nerve pain. It started March 2019 and is still going. I didn’t realize it was Herpes because I’ve only had a few outbreaks over the last few years and they only lasted a few days. This time all I had was nerve pain and no sores. I just got a very small sore in my anal area recently. I went to anal Drs, Gastroenterologists, GP. No one could help me because they didn’t know what it was. My dermatologist finaly figured it out.   He gave  me ointment and Valtrex. The sore is starting to heal but the nerve pain is still going on. It’s worse when I have stressful days, which has been a lot lately. My Dr said next step is prednisone which I really don’t want to do but if I have to I will. I just don’t know what else to do. The pain is all encompassing and is really messing with my quality of life. I get moody, mean and snappy and no energy. When I have a so called good day I have energy and feel like my life is back. But then bang stress and pain again. I really don’t know what to do. I think it’s a matter of getting the inflammation down. I’m hoping it’s not permanent nerve damage.  Has anyone had any luck with anything? What other Dr can I go to? 

[Blue1982]

@GSMom I have nerve pain in my vagina, groin, lower abdomen and right hip.....it’s so weird how it’s spread....because I’ve only had 1 outbreak in November 2019 and have had daily nerve pain since then...

it was only nerve pain in my vagina for the first 6 months and now it’s spread to my groin/pelvis/hip for the past 4 months....it’s even made my orgasms painful bc it feels like a shooting electrical pain when I climax now....

it’s so weird and not fun and I kind of wish it would just be outbreaks because then I could at least take valtrex to make them go away....

has anyone had success with their daily nerve pain going away? It’s scaring me that this has lasted 9 months...

[BonBon]

@Blue1982I have had anal nerve pain for 17 months now. It is really ruining my life. I get extremely moody on bad days. Right now with COVID  I’m home most of the time but once things start getting normal again I am going to want to start enjoying life and traveling. It’s really hard to concentrate when this is so encompassing at times. It feels like my anal area is swollen and irritated. I had one small sore recently in the 17 months and that’s starting to heal. I’ve been on Valtrex for almost two weeks. But the nerve pain isn’t subsiding.   My Dr wants me to try prednisone which I’m scared of but I’ll try anything now. I may try turmeric too and there’s an anti depressant that seems to work for people. I’m hoping it’s just a matter of getting the nerve to stop being irritated and calms down. I really hope this isn’t something I have to live with 

[Blue1982]

@BonBon I know exactly how you feel...I keep praying this nerve pain will go away but 9 months of constant pain...it doesn’t feel like it’s going away.

i just started vitamin b complex and I’ve been taking vitamin c for a while and will start fish oil again....I also might start nortryptiline which is supposed to help with post herptic neuralgia....i hate medications but I’m desperate for relief at this point.

and I completely understand when you say you feel moody when you’re having a bad nerve pain day because that’s how I’ve been too....it can totally ruin my entire day.....

I really hope we both find relief!!!

[BonBon]

@Blue1982 is nortryptiline the same as amitriptyline? It seems these things have worked for people. I’m to the point where I’ll try that too. I don’t like heavy meds either but nothing I tried has worked. Some days aren’t bad and I think maybe it’s stopping and then I have a stressful day and wham! When I’m on vacation it seems to go away. So it really has to do with stress level. When mine started last year my daughter was getting married, and my husband was retiring. Even though those were happy events they were stressful. I also have a mom in a nursing home I have to deaL with. And then COVID. I lost my business and like everyone else it’s been hard.  So constant stress. My body is so wound up.  When it started I thought it was hemorrhoids and went to recital drs and gastroenterologists. I tried creams, ointments. I spent so much money trying to figure it out. Then after a year the sore came  out and  I went to my dermatologist who gave me Valtrex pills,which never had to take, and ointment to put on the sore. The sore is getting better but the pain not so much. Now, as I mentioned, he wants me to try prednisone to get rid of the inflammation. I’ll talk to him about that. But after this I don’t know what other Drs to go to. I guess my GP can give the anti depressants or whatever those pills are. And turmeric is supposed to help with inflammation. After that I don’t know. I am so scared I’ll have to live with this forever. What kind of Drs have you tried?  

[Blue1982]

@BonBon yes you’re correct, amitriptlyne and nortryptiline are both antidepressants that are said to treat nerve pain as well.

i have also noticed that my nerve pain is much more obvious when I am stressed out...I’m a high anxiety person to begin with.

the nerve pain got worse at the start of covid in March.

i have been to 3 doctors and 2 gynecologists....they seem to have little knowledge on HSV nerve pain and seem to think people only experience pain DURING outbreaks which isn’t the case for me.

i have started pelvic floor therapy, and because of the location of my pain (vagina, groin, lower abdomen and right hip) she thinks possibly a hernia...but I know this is nerve pain from HSV, none of this things ever happened prior to my first outbreak.

i have tried 3 sessions of acupuncture and found a LITTLE relief from that but it was temporary...maybe a day or two of relief and that could be because it lowered my stress level.

although acupuncture is supposed to help nerve pain so I’m going to continue that.

people seem to say “stress vitamin b complex with vitamin c and zinc” by Nature Made is good for nerves and I just started taking that about 3 days ago. 
 

fish oil is also supposed to be very good for inflammation, as well as ginger and turmeric.

my acupuncturist recommended CBD gummies with ginger and turmeric in them...I’ll probably buy those next time I see her.

i really really really want antidepressants/meds to be my last resort because I really don’t like antidepressants but I’m getting to my breaking point with the chronic daily pain....I’m sure you understand.

i sometimes drink Lemon Balm tea because it’s supposed to be good for HSV.

if anything, this HSV has made me evaluate my life and look at being healthier and managing my stress (started doing daily yoga).

but it has taken a HUGE toll on my physical pain and sex life. 

[BonBon]

@Blue1982 boy can I relate. I take fish oil but that hasn’t helped. I am a high anxiety person too. My body started getting into a constant stress level a few years ago. Everything stresses me. My work, worrying about my kids, too much going on at one time. As I’m getting older I can handle less. I go to bed too late and sometimes don’t get enough sleep.  And then it’s a vicious cycle because this causes stress so I get stressed from this.

I was thinking about acupuncture but I hate needles. And it didn’t seem to help you a lot. I haven’t thought about CBD but that might be something to try. I would also like to try other things before anti depressants. I looked up the side effects of them and they don’t sound good. And I like to have a cocktail sometimes and you can't taking that. I wonder if they are something that makes it go away and you can get off it or once you go off it will come back.

I’m thinking it’s inflammation though.

If there is something to relieve the inflammation that should help. I feel like mine is inflammation because it feels swollen and throbs. The itching and burning is pretty much gone.  I tried a little Advil but that didn’t help. Maybe taking that for a few days might help. 

Has any Dr suggested prednisone? It makes sense that might work because that lowers inflammation. I’m thinking mine started and since I didn’t know what it was I did nothing. It got my nerve inflamed. Maybe if I had started the Valtrex earlier maybe this wouldn’t have happened. 

You gave some good suggestions. I’m going to try the vitamin B stress complex and tumeric. The tumeric needs to have black pepper in it to help with the effectiveness. And I’ll look into CBD gummies. I might try the prednisone first. If that doesn’t work I’ll try the natural things and if that doesn’t work I guess it’s going to be anti depressants. 
 

I also need to re-evaluate my life. I started to mediate and exercise but not everyday. I’m going to try and not get upset at everything. And start doing healthier things mentally and physically. 
 

What kind of Drs do you suggest seeing for  this? I’ve run the gamut. Maybe a neurologist? I’ll work with my dermatologist until he can’t help me. 

I’d like to keep in touch if you don’t mind. I think it’s good to have people to bounce ideas off on.