Herpes Simplex and Nerve Pain

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!

[horsebackrider]

Hi Quix,

I have been diagnosed with Herpes Simplex II.  I am also having issues.  It appears to be typical nerve damage symptoms, but nothing showed up on 6 MRIs this year.  Now I suddenly am having several break outs.  I never really had many symptoms before.  I also have been having swollen lymph nodes in my inner thighs.  The tissue feels like a criss-cross of ropes in there, too.  My GP said it feels fibrous.  I was wondering if you could tell me where you found that they are doing research on this issue.  I searched your suggested terms, but found nothing.  My GP said that herpes pain is usually localized.  It pretty much is in my groin area, but also travels down my right leg.  I have super sensitivity in my skin which turns to pain in my buttocks, groin and right leg.  Anyone out there know of any online articles or research on this subject?

[mandylynn0621]

Omg i have had herpes for 3 yrs took valtrex quit 3 months quit had no outbreaks but several months later i started experiencing strange symptoms like numb spine or more like bruised weakness etc i thought maybe the valtrex caused it since it can cause ttp or is my body neurologicaly messed up because its fighting a virus constantly? good luck to u

[mandylynn0621]

I too have had MRI's. I am wondering if i should take valtrex or not.

[KBjj]

smc22

I suspect you have genital herpes I would advise attending a GUM clinic when the blister attack starts again they will take swabs to determine if it is indeed this, the swabs need to be taken when the blisters are wet prior to forming a scab. I have attended a Sexual Health Course where the advisors stated genital herpes only form on the genitals. However I have indeed seen a case where the blisters formed on the buttocks with associated temperature senisitivity & nerve pain. The person in question was also informed by several doctors that it was indeed an insect bite.

[aeiou1]

Up to 70% of genital HSV infections are clinically unrecognized. The majority of patients with genital herpes have symptoms and signs unrecognized either by themselves or their clinicians. A recent retrospective study on clinical presentation of the disease reported 51% of cases to be atypical (11)  (http://www.ncbi.nlm.nih.gov/pubmed/11385226). Currently, many doctors rely on the typical clinical presentation of the disease. Underdiagnosis of genital herpes because of misinterpretation of either anatomical or morphological presentations of the disease can accelerate the spread of the epidemic.

What all that means is that your doctors THINK they know herpes, but they DON'T, and more than half of cases in the aforementioned study did not appear according to the conventional "wisdom" taught in medical schools.  BE AWARE that most doctors are not current on the literature. HERPES CAUSES NEUROPATHIES in many people affected. If they tell you only varicella does that, they are wrong.  If they tell you HSV 1 or HSV 2 are not associated with neuralgia, they are wrong.  If you're putting 2 and 2 together, and you think your herpes is causing your back and leg pain and sensitivity, IT PROBABLY IS.  Keep looking for a doctor who is current on the literature and understands the neurolopathic aspect of the disease.  Ask before making an appointment so you don't keep wasting your money.  There is no good news here.  There is no cure, and opiods are virtually useless for MOST neuropathies, not just herpes. The medication Neurontin (gabapentin) may be helpful. Get plenty of rest, drink lots of water, and eat well.  Support your immune system as much as possible.

And EDUCATE YOUR DOCTORS.  If they're not suffering, they're not likely to just spontaneously look into it.  Tell them to check the Merck Manual, for pete's sake.

[nightshiftnurselady]

I have had luck taking oral zinc daily. Not only does it seem to  help prevent colds, for me it has proved to be an effective, homeopathic way to avoid outbreaks. I have had more luck with natural remedies than with prescription drugs.

[norsha1945]

I share your pain and understand exactly what you are going through.  I can't tell you how sorry I am.   just found this site and as sad as it is to hear how much pain others are in at least I now know that others are experiencing the same thing.  I have had a very severe strain of herpes II for 30 years. It has caused dibilitating nerve pain at times.  Before there was medication I got it every month with my menstrual cycle plut those other times that it just felt like showing up.  As you can imagine I had very little herpe free time. I will try and outline how it has manifested itself for me.  Horrible nerve pain throughout body just prior to outbreaks.  Sometimes this last for several days and sometimes longer into the outbreak.  I have been bedridden with pain to the extent my doctor checked me once because he thought i might have meningitus (sp) as the pain up my spine/neck and into my head was excruciating. Our nerves shot all over our bodies and herpes seems to have no boundaries.  Once medication was prescribed I started taking it when I thought I was starting to have an outbreak but unless you stay ahead of it happening it still seems to happen on a regular basis, at least it did for me. I then started taking daily doses of Famvir and once I did that I got my outbreaks down to three or so a year which was really good for me. This brings me to my current problem which I will share now.  As I said I have had this for many years and I think there is no way to know how it will affect us long term.  I don't think anyone including the doctors know either.  My current symtoms (symptoms) are very painful feet and the symtoms (symptoms) change day to day and week to week. Sometimes I can't walk on them without a great deal of pain, sometimes I can't sleep (seriously can't sleep) because they are on fire. Sometimes the pains are shooting, sometimes it feels like thousands of hot needles are in my feet......anyway you get the picture.  I am a walking advertisment for neuropathy. Diabetes has been ruled out so my neuropathy is not caused from that.  I am now waiting to get into a neurologist to have tests run but in my heart I believe that Herpes has caused all of this. I don't know what the doctor will say and I don't know if he even knows anything about herpes but guess he is a place to start. At this point the painful feet are constant although some days are better than others. This came on full force last April and has been pretty non stop pain since then. I have had extensive acupuncture and while it has helped to some degree I am still suffering so the doctor is my last resort.  I realize this was a very lenghthy posting but if anyone has gone down the doctor route and has any suggestions on how I go about getting the treatment/testing that I need I would be very grateful for any tips.

[503]

I also have extreme pain associated with herpes simplex breakouts on my face. I was kissed on the face as an infant and began experiencing neuralgia a few years ago. It is always associated with a breakout and is becoming more chronic. I am taking gabapentin (neurotin), percoset, Nortriptyline, and acyclovir daily. I still feel I have chronic nerve damage though and am having trouble convincing any of my doctors that this is what it's from though finding lots of evidence and forums such as this. I was trained in the medical field in massage school which is very in depth anatomy and pathology. I tried to figure out my pain in school which is when it started. I have had an MRI, nerve conduction test, blood tests to rule out rhematoid arthritis and lupus and other autoimmune disorders. I know this is what my pain is from and just wrote another letter to my doctor via Group Health online which is awesome). It is not muscle pain. It's deeper and more excruciating. I know what a sore muscle feels like and it's not that. I am compiling a list of articles I am finding online as well as referencing the source at the bottom of each finding so it can be looked up by whomever reads it. I will be showing it to my doctors.You should do the same and we should share research. I could go on and on, but will write more later.

[thanksgiving]

please keep us informed, I think this virus is causes more problems than we think, even in my hands. My hands as well as everything below my waist hurts. I am in constant pain, but there are times when my thighs and legs,feet really burn and hurt, and I too, hve the gut feeling it is herpes. I have constant pelvic pain, but I also had hysterectomy which I think had something to do with the influience of herpes. I eat right and get rest, and I am on medication for RA, and generalized pain, but I have always thought herpes has been a participant in the neuropathy I have experienced, but I do have a predisposition for that sort of thing, nerve and vascular problems.

[cat197356]

I two started off with pain in my neck, then it traveled to buttocks and down my leg.  My fibromyalgia flared as did my Interstatial Cystities at the same time I had a brake out of Herpese on my Hip.  So much pain.  I started taking the valtrex as soon as I noticed the blisters starting, but the pain in awfull.  Was hoping someone knew if there was anything to put on the blister to releave the pain in that area.

[thanksgiving]

I'm really sorry you are having so much pain, and I don't know what you can
put on this, but I am sure there must be something you can use for that. You might ask your doctor or pharmacist what would be good. It is funny you say you have IC because I also have that, and I have the burning really bad down my legs, and I do have some discomfort at the herpes site, but the neuropathy is worse than anything. After reading these things I am beginning to believe that my original thought on the herpes is that it affects more things than the doctors know. I now wonder if there could be a connection with it and IC. But, I have a lot of pelvic pain and I have long thought it could be associated with the herpes. I've also wondered if it could be in my vagina at times and really accesses a lot of nerves that innervates a lot of places. I've also thought that it takes up the immune systems energy trying to keep it at bay. I hope we can keep this going here because I want to hear the symptoms of other people, that is the only way that medical professionals can really know how this works.

[hopfulbutpainful]

I had been told I had genital herpes with the genital ulcers about 10yr ago I have not had any problems but lastnight I went to the er because I have leftside shoulder blade pain through my breast and it just hurts to touch but nothing is visible they (er) of course said nothing wrong take motrin it probably a pulled muscle but I just have this pain that is not going away and it hurts so bad any ideas what it could be I feel hopeless nobody is understanding the pain!!!!!!