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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
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1282678 tn?1275186261
I too have had MRI's. I am wondering if i should take valtrex or not.
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Avatar universal
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!
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147426 tn?1317265632
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
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Avatar universal
I just found out what my condition is from a friend who is a former nurse and nurse administrator. It's called "Herpetic whitlow." It's a secondary infection that follows a primary infection with either HSV-1 or HSV-2. Do a search on the term and you'll find lots of places that talk about it, such as this one:  https://www.skinsight.com/skin-conditions/adult/herpetic-whitlow

I don't understand why some of you were being seen by doctors who didn't know what this is. The one thing that it says that ISN'T true in my case is that re-occurrences are rare, but so far I have had one every year after the first one. It also says that the re-occurrences are generally milder than the first one, but this one was more painful than the first one was, even though I was able to get it to retreat after a matter of days and weeks, whereas the first episode took a full year to heal. The thing that is scary for me is that it can become another disease that affects one's brain, called herpetic meningitis.

Antivirals appear to only be effective if taken beginning within the first 48 hours after the infection begins, which is usually before the blisters appear.

It also appears to be highly contagious and one can infect other parts of their own body if they touch themselves with infected fingers. I think I may have spread the virus to other parts of my body because I didn't know this, but so far they have not erupted into an actual infection. They just feel irritated and itchy, and what I am doing for the infection on my fingers seems to be helping to keep those other parts from becoming full-blown infections.
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Avatar universal
I developed peripheral neuropathy around 3 years ago from Herpes Simplex, but thought it was an allergic reaction to an insect bite because it looked like one when it first emerged on the little finger of my right hand and I always react a LOT to mosquito and spider bites, so I thought this was a new kind of bite because the redness and swelling spread to my other fingers and then to my toes. The book I had about poisonous insects said that only antihistamines would help, as there was no antivenom for this, so I found I got relief by taking massive amounts of Vitamin C (with bioflavanoids) around the clock for about a year or so. Fast forward to around a week ago, and the damn thing came back with a vengeance. This time, the old site flared up, but I had a new lesion on the tip of my right index finger that was even worse. My husband had a herpes breakout on his lip around the same time, which is when I made the connection between my situation and herpes.

We had successfully treated herpes with topical treatments (we used acyclovir at first, but I don't like using drugs and we have been getting good results with Quantum Lysine+), so I recommend that as the first step to get relief from the pain wherever there is a visible lesion. The second thing we did was to totally change our diet to eliminate all foods with high amounts of arginine and that prevented future outbreaks for a while.

We eat a "primal diet" with only grass-fed beef and lamb (very high in lysine) as our protein sources and it was so successful at preventing outbreaks, I stopped lysine supplementation and that was fine for a while, but then we started eating dried coconut (very high in arginine) as a snack, and this outbreak followed.

Now that I know the connection, I have been getting immediate relief and healing by taking 1000 mg of lysine four times a day for two days and am now back down to 1000 mg two times a day. I stopped eating the coconut for now, as it is the only food we eat that is high in arginine, but I intend to go back to eating some WITH lysine supplementation once this outbreak has fully healed. Lysine has to be taken on an empty stomach, so I take it first thing in the morning with my probiotics, and then either an hour before dinner and/or either just before bed or during the night when I get up to go to the bathroom.

Once a herpes carrier, always a herpes carrier, but you CAN starve out the bugger by changing your diet. We don't eat anything high in arginine except the coconut (we don't do chocolate because of the caffeine and theobromine in it, which makes us too wired), so I just bought some more lysine and expect to keep taking it for life. I prefer capsules to tablets because I don't like the materials used to make the tablets.
Helpful - 0
1 Comments
Thank you for sharing. I am aware of everything you have suggested but not everyone is. Great info. The best of luck to both of you toward keeping your herpes in remission.
Avatar universal
Yes. Herpes Simplex Virus often causes back, nerve, and leg pain as the nerves associates with a breakout are inflamed. In fact, it can make muscles ache just a the flu does depending on the nerves effected.
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Avatar universal
Use Mellissa essential oil aka Lemon Balm ..it will shorten duration of and over time reduce outbreaks everywhere barr genitals ..for that use the Lemon Balm cream..available in USA. Pray to God..help will come.
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Avatar universal
What is the email i am sick in my stomach just found out
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1 Comments
Just saw your comment wondering what you just found out ive been reaching this myself because i have terrible stomach pain when i have a break out
Avatar universal
Really interesting to hear everyone's experiences with this. A few months ago I started getting a tingling feeling all around my vulva. This went away after a month or so, however a couple weeks later I developed a severe acute burning pain (vulvodynia) on my left labia. This got worse throughout the day and worse sitting down, it lasted in total around 6 weeks and was torturous. The vulvodynia has now gone (changed my diet, upped the vitamins, did some physical therapy and a homeopathic remedy), however in the last few weeks I have developed a burning pain running down from my buttocks to the back of my knee, and sometimes (rarely) to my ankle. It is not bad enough to affect walking, however its taking its toll on me mentally and seems ever present, especially when walking.

I have never had a herpes outbreak with lesions, however recently a doctor mentioned that all of this nerve activity could be from herpes II. I was wondering if anyone has experienced such nerve pains/issues in the genital region and thighs that also never had an outbreak? I'm aware that many people that have herpes II are asymptomatic, however it seems a strange to have nerve pains and no outbreaks? Maybe it is unrelated
Helpful - 0
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Genital herpes blisters can form inside the vagina and near or on the cervix. Genital herpes can also form inside the opening of the anus. This might be what is taking place.
Avatar universal
What did you find out from this?  They won't say this is herpes, but it sure itches, dries out, cracks & hurts like it.  
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Avatar universal
You are the only person I've ever seen mention anything about the feet. The pain in my lower buttock and legs is so uncomfortable but i too have been suffering from SEVERE Foot pain. Never would have thought to put the two together.
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1580703 tn?1651904887
is it dangerous to treat HSV1 VZV with valtrex because it may cause brain damage and hearing damage?
well it seems some studies say that my hearing loss may be from a HSV1 breakout.  I went on 6 days of valtrex and it cleared up the infection, I don't know if I should repeat the 800mg 3x course for another week.  I think I seemed to regain my hearing clarity on some days on the medication??
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Avatar universal
I need help what did you do.
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Avatar universal
I was admitted to the hospital for meningitis in 2008. When I was discharged I had developed a (what I thought at the time a bedsore) it healed and I thought nothing of it.  I also began having sacral pain at that time.  I thought this was due to a fall awhile back and was aggravated by passing on my back for six days in the hospital.  I had an xray done and I did have a fracture.  The discomfort and someone pain never went away.  Sitting or driving was very uncomfortable.  And when i sit it feels like I am sitting on bubble wrap. I have a mushy popping sensation at my coccyx with pain. Message helped a little, but it has not gone away all these years Since the hospitalization I have had several 're-occurrence of the lesion in the same place.  I thought ok, it's shingles, it wasn't bad. A bit itchy and some pain. I am having an out break now and decided to do some looking on line for help.  And I find that it is HSV2 not shingles.  I accualy had a positive test and the doctor never called me about it.  And it can cause aseptic meningitis (BTW 2 spinal taps came back negative while in the hospital) and what I or we may have is sacral herpes.   I spoke with my doctor and he looked at me like I had two heads when I explained what it thought was happening.  He said I had a pyonidal cyst.  I made him take a culture anyway.  And am waiting for results.
But I am so glad to know that I'm not crazy or alone.  Now I just have to find a doctor that will help.  If not ill try homeopathic therapy.
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I am fairly convinced I have been having some version of recurrent aseptic meningitis, that began a few months after the nerve tingling/prickling/pain first started. My balance was way off, then my eyes started going blurry, I felt like I was dissociated from my body, and I had numbness in my left leg and left arm - it is scary. Have turned up to hospital a couple of times but have not been admitted as the symptoms subside while waiting to see a doctor. Not sick enough to be in hospital, but at times not well enough to be walking around going about daily life. Mid January this year it was all hitting me hard, now it's late March and the symptoms are still around but not as intense (i.e. my eyes will blur for 45 mins and I feel like I might tip over, but then it calms down), so I'm just hoping it's gradually lessening on its way out.
Avatar universal
My name is Wayne Marsha, I am here to give my testimony about a doctor who helped me in my life. I was infected with HERPES SIMPLEX virus in 2010, i went to many hospitals, churches for cure but there was no solution, so I was thinking how can I get a solution out so that my body can be okay. One day I was in the river side thinking where I can go to get solution. so a lady walked to me telling me why am I so sad and i open up all to her telling her my problem, she told me that she can help me out, she introduce me to a doctor who uses herbal medication to cure HERPES SIMPLEX virus and gave me his email, so i mail him. He told me all the things I need to do and also give me instructions to take, which I followed properly. Before I knew what is happening after two weeks the HERPES SIMPLEX virus that was in my body got vanished . so if you are also heart broken and also need a help, you can also email him at ***@**** OR ***@****
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Avatar universal
I have had HSV 2 for 25 years. When it first happened I had blisters all over the vaginal area. Incredibly painful. Nothing like that ever happened again but I have been very frustrated in not always knowing if and when I am having an outbreak. Now I have lots of nerve pain from the Labia and buttocks and back of the leg. I am very athletic so I never know if it's from riding my bike too much or lifting weights but I'm feeling now that it's been the herpes causing all this nerve pain.  I had several injections at the site which felt great when it was numb and helped for a little bit but eventually came back.  I very rarely see blisters though and it has moved from one side to the other side of the vaginal area. Nothing has been more frustrating trying to understand it and not pass it on.  It is difficult at most to try and have a relationship. The leg pain is driving me crazy and I have tried valtrex without a lot of luck. Maybe I need to take more and start taking it daily again.  
Helpful - 0
Avatar universal
Take zinc orally and echinacea! both available from your chemist with no presciption needed. This helps a lot of people who exhibit nerve pain as a symtom of herpes and lessens the outbreak time significantly for some. My partner takes it daily and it stopped him from having regular outbreaks. I hope this suggestion helps!
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Avatar universal
Hi how r u now. I am hsv positive, with lots of symptoms pls help...
Helpful - 0
Avatar universal
Its encouraging to see I am not alone. The nerve pain today from lower back on the right side all the way down my right thigh has been awful. I'm 49 and was walking around at work like an 83 yr old. I was diagnosed 8 years ago about 9 months after having sex for the first time in 2 years. Since then my immune system has gone hay wire. I have been diagnosed with rheumatoid arthritis, mixed connective tissue disease and already had hashimoto's (auto immune thyroid ) disease. 3 years ago, (after not having sex for the prior 4 years,) with two suspicious tiny skin tags appearing near my anus, I went to the doctor and was told (without a biopsy) that I had HPV. He didn't believe I had not been sexually active. Well, now that has spread somewhat. He acted like it was no big deal and gave me a scrip for some cream that he said would clear it right up. NOT!!!!! I've tried every remedy I can find. Everything I use affects the Herpes and causes a flare. Two weeks ago after a colonoscopy and endoscope  I was told I have gastritis. I googled it and found that its an inflammation of the stomach lining and can be caused by Herpes and can become quite serious.
I'm exhausted most of the time. I hurt most of the time. My feet burn so bad at night it keeps me awake. I have been divorced for 21 years and have no one to talk to about any of this. I work two full time jobs and take online classes. I'm not letting this defeat me in every area, but it has killed any hopes of a social life or marriage ever happening.
The first 4 years it was one tiny spot about the size of a pin head. Always the one spot. it never spread. Never a blister or a rash or anything typical but it was swabbed and confirmed as Herpes. (Not typed) They said that wasn't necessary. Now I have a larger area on the other side just in the last six months that is only visible as a reddened area that's very sore. I only know it is the herpes because of the horrible nerve pain on that side. I think many people ignore the symptoms and go undiagnosed because they don't see the hideous blisters and sores you see when you google pics on the internet. I am afraid of what the future holds with possible complications from age and a compromised immune system. I am so tired of being alone and turning down every guy who asks me out but I just can't put myself through the shame of having to tell them and I really couldn't mentally handle the responsibility of passing it on to someone else and them having to deal with horrible virus that has no cure. If anyone knows of any anonymous support groups I would really appreciate it.
Helpful - 0
Avatar universal
Try changing your diet and/or seeing a nutritionist to help you.  Diet is a strong indicator for how our body's act.
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Avatar universal
I am female, have had genital herpes for about 25 years. I won't blame the guy I got it from, since we both were horny and not thinking. I have had sores in my vagina (outer part) and eventually a few showed up on my butt, I assume because of wiping (so graphic I know!). Whatever strain I have had, was never a large number of sores at one time. I always have tried to medicate ASAP. I think it is called a "prodrome" that is a change in the body that tells us we are about to break out. My diagnosis was confirmed back when by a doc who did an actual biopsy. (BTW - there may be a dating site online for herpes positive people). I read once that herpes may show its face in response to something in lentils, which happened to me, so I stopped. I believe I also react to something in dark chocolate - probably whatever it is that dogs are allergic to. I react only when I have had too much. I always try to have acyclovir around so I can start treatment as soon as I sense a problem, and this has worked well.

I'll leave a few tips below, but the point I am trying to make here is that I have, like others, had a strong sense that the herpes has caused me long term damage. I've had pain in my hips that was diagnosed a year ago as bursitis. But that diagnosis did not account for all of my pain. I have also had pain in what I would describe as the groin area, sometimes feeling very specific, and other times more generalized. I have felt that there are several things going on, and that herpes damage is one of them. But I don't think if this as part of an outbreak. I don't have other herpes symptoms such as sores or tiredness. When I have felt sores coming on and been on medication, it hasn't, to my recollection, improved the pain I have in the groin area.

It seems to me that since Shingles, chicken pox and the herpes we all seem to be experiencing are related, it is ignorant for doctors to act as though they are certain that there is no long-term damage suffered as a result of herpes. AND I THINK WE SHOULD ALL BE WRITING TO THE Surgeon General or national Institute for health asking that they study the problem. I still have a few years left, and many of you have more than I do. There are gazillions of herpes sufferers who would benefit either from a drug that intervenes to prevent long term damage or which addresses it once it has been acknowledged by the medical profession.

Side note - I really feel for you who have more inexplicable viral symptoms. Have you checked about psoriatic arthritis? That has rashes and pain as well.

A couple of things I didn't see above  - one great way to treat an outbreak is to soak in a warm/hot bath. A bath with salts or oatmeal (it is something they sell at pharmacies). After the bath, dry off and throw the towel immediately in the wash, and wash it on a hot temperature. If you can't do that immediately, segregate the clothes into a bag and label it, then clean later. If you have sores on your back, you probably need to do this with sheets etc. Two, a hairdryer is a great tool. After soaking, if you can do it yourself, use a hairdryer to apply hot air to the sore area. Don't overdo it. A couple of minutes then a pause, then a couple more minutes then stop. Don't cover your skin up immediately but okay after a few more minutes. Third, wear clothing that will not cause you to sweat too much. Light cotton clothing works for me. Tight latex clothing, or leather, would be terrible. Your skin needs and wants to breathe.

I think other hints have been written about above. The best way to deal is to keep yourself in tip top shape and to be ready with medication to start at the moment you sense the virus is raising its ugly head.

Long-term treatment? Well, I'll see what happens. Had some blood work drawn and I should find out tomorrow if anything shows up like rheumatoid arthritis. Maybe I have also a slipped disk or something. Any of these things would certainly put my body into stress - the pain I am in certainly does. It is a vicious cycle. But so far, I refuse to put myself into a category of lifelong suffering that won't abate.

Wish you all, all the best!
If you haven't gotten health insurance, make sure you get it before the 15th.
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Avatar universal
I find it "exciting" to find that so many "share my pain". I do not intend to sound mean, and am so sorry for your unfortunant experiences. My outbreaks began in 1995 after a trip to a tanning bed. I had a cluster of blisters break out on my left buttock & along my sciatic nerve. I felt very ill, feverish and extremely tired. I went to the doctor and was told I had shingles. The blisters did not spread as in typical shingles. Over the years, I have had many, many outbreaks. Always on the left side of my upper buttock, along the sciatic nerve until several years ago when I, surprisingly, began have a series of 1 to 3 blisters outbreak on the instep of my LEFT foot, on occasion. Now,18 years later, I have more frequent outbreaks every month, sometimes 2-3 times in 1 month. The blisters are always on the upper left buttock, along the sciatic nerve and occasionally on my right foot instep. I have constant post-herpatic neropathy and neuralgia down my left leg during these outbreaks. I still have the feeling of being "sick" and very tired. My doctor did finally tell me, "this is not shingles, it is Herpes Simplex, kind of like atheletes get in shower rooms." This kind of made sense since mine began after a tanning bed visit. I have not been able to find much information on this type of affliction. I am now on total disabilty because of this disease and the after effects along with a severe degeneration in my entire spine, predominant in my lumbar-sacral spine. I cannot help but feel the virus has invaded my sciatic nerve and my spinal column. Of course when I say this to a doctor, I get a blank stare. I pray for you all the get relief, I have not been able to. I took Acyclvair for awhile, and it helped. However a few years ago, it began giving me severe vertigo to the point I could not stay errect. I will share with you: I found that when I had lesions breaking out, Campho Phenique worked awesome in helping the blisters to dry up quicker. This is a staple at my house. Good luck to you all.
Helpful - 0
2 Comments
I also got a strange cluster outbreak in the instep of my foot, a few months after the nerve tingling/prickling started.
Have you ever had intravenous acyclovir? The vertigo you describe (which I have been having also) sounds like one of the symptoms of Recurrent Aseptic Meningitis - they used to call it Mollaret's Meningitis. Some case studies online have said that the intravenous antiviral, as opposed to the oral acyclovir can cross the blood/brain barrier and get into your spinal column/meninges and potentially help the condition.
Avatar universal
Have any of you tried taking Lysine 1000mg every day? All evils of the Herpes virus family NEED an amino acid called Arginine to replicate. Most of us get plenty of Arginine in our diets, esp. from tree nuts- including coffee and chocolate. I know big drag!!!
Any way the amino acid Lysine is shaped very similarly to Arginine. In the virus' rush to replicate against your immune system (it's generally an opertunistic virus) it will often "grab" Lysine { bunch of RNA/ DNA replication stuff} by mistake. Thus it functions as a stop mechanism and cannot reproduce. Granted nerve damage is a sucky thing and can take years to heal if at all. But stopping the outbreaks is Primary to any pain management attempts.
I did my Pathology Thesis on the Herpes virus' it is the most prevalent virus 'family' in the human race with estimates of 3 in 5 of us carrying some form of it. So don't let doctors shove you off.
Good luck
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5608246 tn?1370850737
by the way.. when other men experience actual herpes outbreaks on the genitals under the foreskin it very well may help to have a circumcision carried out.. My own belief was that the skin would get thicker without foreskin and eventhough my medic would only agree that the healing process would be easier in the open air my outbreaks almost completely moved from the genital area to the buttocks.. The infection shows more but is way easier to heal!
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