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Herpes Simplex and Nerve Pain
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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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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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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
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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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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?
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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.  
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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?
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BUMP!
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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?
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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
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I too have had MRI's. I am wondering if i should take valtrex or not.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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!!!!!!
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I had a cold and soar throat for much longer than I ever had this past spring. I had strangely red skin, particularly in the sun, and suffered fatigue. I began to have extreme abdominal pains 2 months later after having sex, including oral sex once, in a monogamous relationship with my girlfriend. Long story short, symptoms progressed and progressed and included many listed here, particularly those of users "roxilovi, norsha, 503", until my symptoms included extreme pain radiating from the groin down my legs, weakening them, to my feet, and sometimes upper body to the arms.
As mentioned, doctors had no idea and I felt terrible when my new gf tested positive for hsv1 because I was convinced for a few days in the spring it was an unusual occurrence of herpes but was assured it was not by doctors and then proceded a little over a month later to have intercourse with my new girlfriend. Antibiotic regiments, antivirals, changed every aspect of my health, etc to no avail.
Now I have constant, painful red rashes on my hands, joints, fingers, toes, lips, arms and worst of all, every centimeter of my testicles and becoming my penis as well. The rashes appear moist to the touch, and only change in appearance when they become very dry and then the skin takes on the appearance of old, finely wrinkled skin with shininess to it. Although I believe it is more the heat than sunlight, the rash worsens significantly in the open daylight (altho unchanging on my groin.) My eyes burn behind the eyeballs, and are infected as well with long red veins. My face feels tight to my skin and is often tingly and uncomfortable, almost itchy. My back breaks out in painful acne-like blisters but are just red with no white head. The thing that keeps me from going out and attending classes anymore is the chronic, debilitating sacral (nerve?) pain.
It's been 4 months of the shooting groin pain. Otherwise, I am a healthy 22 yr old, wrecked by this disease..
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College I too have the nerve pain symptoms you describe including the back acne symptoms all came after a sexual encounter that included what can only be described as a initial genital herpes outbreak. This left me with pelvic pain, sciatica pain, eye strain, burning feet, random skin outbreaks which I never had before including the back acne thing, and genital itch. I too have changed diet, gotten medication and learned as much ad I can about this. Everyone says it's not herpes but they have no answers, seems such a coincidence it all started after the sexual contact.
  
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Hey Matt, first of all please reply to "collegeusername" without the 007 bc i cant recover my password.

Of all the forums I've posted on, you seem to be the only one to simultaneously have all of these symptoms that I did, so I'd def like to continue working with you to figure this out.

From talking with others, most people do not seem to get the red rashes and back acne. My acne has completely disappeared recently, however, after what seemed like two distinct episodes of a back-acne breakout. As for the rash, is it localized to sensitive skin areas such as your hands, elbows, knees, toes, fingers and possibly face? (and of course, the groin)

Last night I had my first alc. beverage in a month probably, 3 shots of gin (which is just pre-game for a russian irish guy like myself), and by the time I came back I was in cold sweats, then hot, then terrible flu symptoms and diarrhea and cuts began opening all down my throat and it became yellow-white colored inside my mouth. This is the second time i've been super sensitive to alc, and just 2 months ago when we went to a wine tour my gf (who has various symptoms but much milder) had to be hospitalized after less than a single glass of wine! I've been drinking 2 liters of water a day and my pee is almost always yellow still. So have you too been extremely dehydrated for no reason?

Well after that episode I got really mad about this and went on a frenzied research and found this, which literally describes EVERY symptom I've had. I'm not very happy about it:

http://www.med.unc.edu/medicine/web/meningitis.htm

I'll check back in a bit,
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I've had the same symptoms for 11 weeks, after the same exposure. I cannot drink enough water in a day.
Got the girl tested with an 8-panel. She was clean except for high HSV1 titer.

I should add we are geographically close in terms of population. My contact was a college-aged female in Boston, who travels to NY frequently.

I've had a few small blisters too which a physician remarked looked like HSV, and also "cold sores" in my mouth usually lasting 3 days, worsening with worsening general malaise and getting better when it gets better. I have negative REPEATED serology for everything you might imagine.

I've felt like **** for 11 weeks now. Luckily testicular pain and gland swelling has abated. Very mild (but so worrisome) neuropathic tingling in extremities, slight fatigue, headache, and intermittent bizarre red rashes continue. Aches in my muscles too. I've read so many forum posts where people have the same symptoms and freak nonstop for a year, then just disappear (presumably they feel better) Usually it takes the body 6 months to develop an effective response to Herpes :/ it's just a sneaky *******.

I should add that early on, I felt a tingling burning on the side/tip of my penis alongside the red scrotum, and immediately began taking 1g valacyclovirs like they were tic-tacs. That made the former symptom disappear, but didn't take me to 100% wellness. I've since stopped taking it... Have you tried it? Had any luck? I actually think the absence of a main "breakout" is making this all worse. Fewer traumatized cells to present antigen, with HSV down regulating MHC.

I'm not sure this is vanilla HSV1. I think it may be an associated virus (CMV), A very aggressive strain propagating via oral sex, or some unknown hepatitis virus. I'm not optimistic about receiving a diagnosis from a physician, and so it's pretty nice to hear from other people with similar bull****, basically going on with their lives. I don't think we'll ever get to the bottom of it.

I try to exercise a lot, drink a lot of water and take vitamins. I notice a solid sweaty workout will suppress the symptoms for a day or so, and attribute any improvement I've had to that regimen.
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Hi There,

I have had all of the above symptoms except I am waking with night sweats and my hands and feet have been numb. I have too been tested for everything except HSV. like coffeeprof, I can't make sense of it...Read my posts. I am going nuts trying to figure it out. Hopefully one of us will figure it out soon enough.

Cheers lads
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I bet it is too. The doctors just don't seem to know about all these weird symptoms. I have researched about medical and health issues for over 11 yrs now and have run across so much the doctors don't know about, they just skim the surface with their limited knowledge. I do have genital herpes and have had a lot of neuropathy in my pelvic area, down my inner thighs, sometimes my hands. It all got worse after my hysterectomy, so I thought maybe it caused some kind of spreading inside of me, because I had extreme pain, burning, throbbing, vaginal pain, you name it, and it has continued. I think that the nerves have been extremely damaged by herpes, and compounded with the hysterectomy. 'The beat goes on.' I was also left with other problems that had to be repaired, so it has really been difficult, trying to figure out what is causing what and where. I had one experience that was REALLY weird it was horrific pain in my Urethra which I had never had before, and I've had plenty of U.T.I's and this was very different. Now, get this, it felt like there was a wire being forced up thru my Urethra, and I really can't describe it, but the NP didn't know what it could be, no infection, so she sent me to a Urologist and he did a Cystiscope, said everything looked fine, except a little red around the opening of the Urethra, and by the time I got to see him it was already better. I didn't even think about the herpes because I had been already having so many complications from the hyst, that it didn't occur to me it was herpes, but now after reading all these posts and thinking about it, I am 99% sure that was it. Was the first time, and last, SO FAR. It was excruciating pain! I do think that the herpes causes a lot of problems especially Neuropathy,  and fatigue.It has just been a circus with all these different doctors, and this Urologist wanted my records, of course, and he just sat there, literally flipping thru them, with no actually reading or even looking at it saying 'Um, yeah, um yeah.
Ok that's enough, sorry, I haven't read over the post lately, so I have probably already written most or all of this, please forgive, just got started, as usual. Good wishes to all, I know your pain and frustration.
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Lower back pain, mostly around what I think is the Sacroiliac joint. As a result of this it appears to cause discomfort in my leg creases of my groin - almost as though my jockey shorts are too tight along their edge in this area. - I have genital herpes. I have had it for approx 15 years. - I believe I [do] have sacroiliac and lower back problems without the virus but I also think that the virus when it starts to act up aggravates an already delicate situation. The 2 key reasons I believe that this elevated discomfort is cause by HS is: 1) I take an acyclovir and the problem noticeable diminishes within 12 hours, and 2) I have spoken to others with HS2 who also have lower back problems and they reported that they have come to a similar conclusion.
I was hoping someone could steer me to any information supporting this theory and the best way to treat it - or- if it is not the case, hoping someone could give me clarity as to what might be happening.
I was diagnosed 15 years ago (infected by a cheat wife). The first 10 year were pretty much hell, but the last 5 or so have been a lot less brutal with outbreaks now happening only once or twice a year. The first 5 year it was outbreaks almost every month.
It would be great to have a permanent cure, one that completely destroys the virus. A Cambridge Mass biotech company owned by a British company was working on one but I do not know if they continue to pursue a cure. During research they found that they were actually killing melanoma and last I knew they were pursuing that. I can't blame them because that would be the right thing to do. I think the British company has since been sold so I don't even know the company's status. I think what they ended up developing for the melanoma was called Onco Vex. If nothing more its interesting reading and it would definitely be fantastic to cure skin cancer.
(I just did a search and  think the company is now owned by Amgen and what is currently being tested has been renamed to T-Vec. It is "an oncolytic, recombinant herpes simplex type-1 virus (HSV) encoding human cytokine granulocyte-macrophage colony stimulating factor (GM-CSF) with potential immunostimulating and antineoplastic activities".)
Hopefully the scientist can take this lousy H virus and make something positive out of it. THe good news is that this type of effort witht he HV only increases our understanding of it and one day hopefully wa cure will be created.
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Yes, I have the same pain and I've come to believe that it is the herpes that is responsible. groin, thighs burning, leg and feet pain, not to mention pelvic pain.
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Hi, I contracted herpes 24 years ago and didn't have a single outbreak (that I was aware of). Then in June I changed to a different side of the bed, different sleeping position and I got a slipped disk. I sit down a lot for work and I have scoliosis so have a weakness there.

A few days later I had an outbreak with a lot of pain in my hamstring/whatever the nerve is there.

Now 4 months later I have another outbreak. This is all very odd after going so long without. In between I have had several weeks of physio for my back and the guy loves to stick his fingers in my nerves to release tightness. He also used a tens unit on me too,

I really believe that the slipped disk brought this on as that is all that changed in my life. I am hoping that the massaging and nerve poking has triggered this latest ob and now that I'm exercising again, my back should build strength so that things can settle down. No more massaging for me for a while but the nerve down my leg is a killer. I cannot let it get cold nor can I touch my groin area otherwise it hurts so much. Other times it just hurts randomly like when I go to the seated position.

Herpes is so much more than just a skin condition. I read that it can cause degenerative disk disease too from its position in the ganglia nerve.
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Yeah this thing is a mother. It's been 8 months for me now with no real answers, just treating the symptoms since testing has produced nothing. While I can say the symptoms are far better than the initial, they are no where back to normal. Sometime symptoms disappear for weeks at a time only to pop back up with no reason as intensely as they were prior to vanishing. This illness has wrecked my physically, I manage to get through the day doing the bare minimum anything more causes symptom flare. The symptoms are very much like chronic pelvic pain syndrome and herpes combined, I read hsv can cause cpps type pain though. Hoping the one year mark with make a considerable change for the better,
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Thanks you guys, for the info.
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More and more cases of Post Herpetic Neuralgia from Genetal Herpes is being reported. Doctors are at a loss, as they think that only Zoster (Shingles) causes such pain. They are mistaken.

Many people report buttocks, hamstring, back of leg, calves, foot and back pain from genital herpes infections, particularly those that are having severe outbreaks or those that catch the virus later in life with supposedly weaker immune systems. Some report this pain lasts for years - or life. Don't despair! Everyone is different. Believe your body can heal, and it will!

Heavy doses of Valtrex sometimes relieves the pain. The theory is that the virus is active and irritating the nerves in the sacral region and distal (beyond) that point. Thus taking Valtrex at a regular and sustained dose for a few weeks at the least sometimes relieves the pain as it apparently is finally putting the virus into remission and giving the agitated nerves a rest.

REGULAR AND SUSTAINED EXERCISE AND A PROPER DIET IS THE MOST IMPORTANT THING!

Patients whom lead a sedentary lifestyle have many more PHN complaints than those that are very active. Bicycling, Running, Swimming, Jogging, and other cardio where you are using your back and legs helps tremendously. Like vascular syndrom (syndrome), neuropathways may be able to re-route and repair, and regular exercise helps tremendously. Sitting on your butt all day is the worst thing you can do.  

Diet is important. Lots of sugar, and other unhealthy foods can be detrimental. Avoiding peanuts, dark chocolate, coffee, corn, and other presumed breakout foods high in argenine may help. Certainly, a healthy diet will absolutely boost the immune system.

Finally, supplements such as coconut oil, lysene, vitamin C, Vitamin D, Zinc, and Eccinacia are all reputed to help fight viral infections. Many believe they do.

THE MIND IS A POWERFUL THING!  I had herpes I since I was a kid and only had one minor outbreak on my lip during a very stressful week. Why? Because until I started to learn about the virus, I thought cold sores were a NON-ISSUE that everyone got maybe once or twice in their lives. If you stress about herpes, you will feed the virus. If you feel you can beat it, and allow your mind to control the body and relax, your body knows what to do!

Good luck! Live Well! Enjoy your life. Herpes has been around for 10,000 years. Our bodies know how to fight it. It just takes time and patience. Trust in this.
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I have just found out I have herpes simplex 1 virus/ I have the most painful sore inside my mouth near the underside of  my tongue and nerve pain from my ear down to my lower jaw. Have you ever had a toothache, well this feels like every tooth has a toothache. Acyclovir and have a topical pain killer to swab inside my mouth. Nothing is helping yet. Had it for a few weeks thinking it would go away before seeing doctor, but pain is so bad. Does anyone know how long this takes to heal.
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I have similar symptoms as you describe.  I was recently infected with HSV1 (genitals and mouth) by my lovely gf who never told me she had this virus.  Now I have had a bad sore throat, numerous cold sores in my mouth, ear pain, lethargy, fever, and now, on day 9, I have everything except the sore throat but now I also have severe nerve pain in my lower and upper jaw.  My face is swollen, and about every 3 hrs the pain becomes unbearable.  Oxy and Vicodin don't even touch the pain, nor do NSAIDS.  Doc didn't want to go down the neuralgia route in his diagnosis of course, even though I mentioned it and he had no explanation for the nerve pain.  He just thinks it's a bad primary outbreak.  WTF!?!?  Never knew herpes was so unbelievably brutal!
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Viruses are very difficult to understand, and I think that doctors just don't know much about it, and I can't believe that the medical community acknowledges that shingles cause neuralgia but herpes doesn't. I know this... I have a lot of neuralgia in that area and pain from you know where, also I have pain running down my inner thigh but don't know if that is from my hysterectomy complications, but I think the herpes has damaged the nerves and opened up new pathways. Probably the best thing to do is go to a good infectious disease doctor, maybe they could shed some light on it. When I think I'm coming down with it I start taking the acylovir (sp?) and it seems to help, but I have heard that if you take it every day as a preventive it can make it more frequent when you stop, or something like that, so I just start it as soon as I have symptoms, and the prodone is worse than the outbreak.
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Great advice! I have been living with the nerve sensitivity for 10 years now and just take it as it is.. It comes and it passes, might be helpful to be a yoga teacher as well.. I hope people here will look for support sooner than to focus on the symptons.. It is clear enough we all have been given the Genital Herpes which puts us on a path to be conscious about making ourselves healthier people to prevent outbreaks.. I hope to find here more helpful insights on peoples experiences with the effects of lifestyles and foods/supplements on the outbreak.. I have used lysine and stayed away from otherwise very healthy nuts for a year without any effect for example.. Can be that other foods would prevent effectivity.. And I would hope that some medical experts would join in to the subject as well as they seem to lack knowledge on the subject in their clinics.. And if anybody has other suggestions on forum place where medics and patients join in a discussion please let me know! And as Yockora stated, do not forget to enjoy life and take this annoying affliction as a reminder to life consiously and healthy!
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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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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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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.
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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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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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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.
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Hi how r u now. I am hsv positive, with lots of symptoms pls help...
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