Herpes Simplex and Nerve Pain

[roxyloxy]

I have had legions on my buttocks (both sides, and sometimes simultaneously) since I was about 6 or 7 years old, reappearing as often as twice per month, depending on stress level I think.  I was diagnosed with Shingles, but when I asked for a definitive diagnosis, they did blood tests (which show antibodies to shingles) and a biopsy of the legions.  The dermatologist now says they are Herpes Simplex blisters...genital herpes...not on my genitals but on my buttocks.  Now I am starting from scratch trying to figure out where the heck is the root cause of the pain in my sacroiliac joints, buttocks, and down the outsides (and sometimes front and back) of my legs...My question is this: could herpes simplex cause nerve pain the same way shingles does?  If not, do you have any ideas about this specific kind of pain?  I used to have a herniated disk, but therapy seemed to heal it, and I've had cortosone shots in my sacroiliac joints that made it MUCH MUCH worse...permanently...I'm a senior in college, a wife and mother of three, and I need to figure this out and either fix it and go to work, or get it diagnosed, and accept disability...but not knowing is driving me CRAZY!!!  Please help me.

Roxanne

[Quixotic1]

Absolutely the Herpes simplex viruses can cause radicular, persisting nerve pain.  The Simplex viruses I and II are "kissin' cousins of the Zoster virus which causes classic shingles.

They can all cause post-herpetic nerve pain and do it by the same mechanism.  After the primary infection the virus usually continure to lives in the nerve roots near the spine.  Under stress, infections, trauma, things that may suppress the immune system such as cancer or chemotherapy, and sometimes without apparent cause, the viruses travel down the nerve and erupts as blisters in the skin.  These are the classic shingles, the cold sores, and outbreaks of herpes II.

For reasons that are not well understood, sometimes those nerves continue to transmit severe pain messages even though the skin eruption has healed.  Often the pain self resolves though it may take seeks to months.  Sometimes it is very-long-lived or even permanent.  This can be devastating and even debilitating.

There is a huge amount of research being done on it and how to treat such pain.  I tried to look up some of the articles from my search.  Someof them looked very promising - very good scientific sources, but my computer is acting up and I think it needs a good cold boot.  The search words I used in Google were "post-herpetic pain simplex II"  Maybe you could try it.

I'll try to get back to you soon with more data.  Does this answer some of your questions?  Good luck, Quix

[roxiloxi]

Wow May was a long time ago, I'm sorry.  I've been moving and graduating (yay!), and haven't been on here much.  Thanks so much for the info.  I'm gonna go try that Google search right now.  I appreciate it.  Roxi

[smc22]

Did anything get resolved for you? After developing a rash on my right buttock and having nerve irritation from my right hip to my right foot,  I was diagnosed with shingles in January 2008. I took acyclovir and it seemed to go away though I still had nerve sensitivity. Then last week (Feb '08) I went back to the same doctor about what looked to be an emerging rash again also on my right buttock but higher than the previous rash (it's almost at the waistband of my clothes). That same dr. said it was just a "bug bite" and it would go away with some benedryl cream. She also had another dr. who supposedly specializes in dermatology look at it and he said it was a "bug bite" too. 3 days later the nerve pain was so bad on my right side that I had a hard time sleeping. The rash got bigger, was burning and itching plus there was sore next to it too. I went back to another doctor and was told it was herpes simplex 1. That dr. repeatedly told me that  it was NOT genital herpes despite it's location. She gave me acyclovir again and said I'd be better soon. She had no explanation for the nerve pain. Despite my insistence that it really hurt and was definately a factor, she said it was not related to herpes and that she had no idea what would cause it. Now I'm totally confused and frustrated. I went from being okay with the shingles diagnosis, thinking I'd never have to deal with it again once the rash was gone (other than some possible lingering nerve issues) - to now thinking I have herpes of some sort with no signs of a cure or any help really. I don't trust what these doctors are telling me and now am not sure if I should see my OB/GYN (in case it's genital herpes) or a dermatologist - both of whom I trust. The nerve pain is what is really the problem. I'm only 32 and despite a cold here and there am pretty healthy. So why is this happening now? I did get the flu badly right after the alleged shingles diagnosis and am breastfeeding so it's likely that my immune system is down. Right now I just want an accurate diagnosis and some relief for the nerve pain. Does anyone have any ideas of what type of doctor I should see? I also just started my period today and read that that can cause the pain to be more severe. Please help! I don't know where else to turn!

[Sandy Sims]

I too have had nerve pain--spine--from Herpes simplex.

Recently I was changed from Acylovir to Valtrex with MUCH better results.  Also Valtrex is a twice a day dose--easier to handle.  

Since both drugs are antivirals for herpes you might ask your doctor to try it?

[kmsir1234]

I also have this same pain.  Sometimes it is so bad, I have to excuse myself to go to the bathroom just to cry at work.  I feel horrible, and I can't explain to people why I am so miserable because I don't want to just come out and say "it's because of herpes".  If anyone asks, I just tell them I have fibromyalgia.  The pain goes all the way down from my lower back, to my butt, all the way down my legs to my knees.  I take Valtrex everyday, and I also started taking 100mg of Lyrica once a day.  I am supposed to take the Lyrica 2 times a day, but it makes me want to fall asleep in the middle of the day.  I have literally almost fell asleep driving twice.  
Also, my husband and I want to get pregnant so bad, but we are waiting until all of this subsides, because I don't know how I could ever make it through a pregnancy without the Lyrica.  We've now been waiting for over a year, to no avail.  I am so depressed and in pain all the time, that I just don't care much about anything anymore.  I'm trying to stay positive and am going to a Neurologist on Monday.  Hopefully something good will come out of it.  If not, I don't know what else I can do.  

[Tartarus]

Hi,

I think I may have herpes but don't suffer from a rash as such but do suffer from burning/sore armpits and have had a burning pain once accross my back/shoulder blades from pit to pit.
Could this be herpes as you guys are discribing?

[Tartarus]

BUMP!