Herpes Simplex and Nerve Pain

[roxyloxy]

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

Roxanne

[Tinalorene]

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.

[Being1]

Try changing your diet and/or seeing a nutritionist to help you.  Diet is a strong indicator for how our body's act.

[bumpyturtlebutts]

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.

[cg9491]

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.

[ETS1]

I also got a strange cluster outbreak in the instep of my foot, a few months after the nerve tingling/prickling started.

[ETS1]

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.

[Turtlesocs]

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

[rjamesbee]

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!