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

[Night292Rec]

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.

[collegeusername]

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,

[Matt238]

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.
  

[collegeusername007]

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..

[ETS1]

I also had a long, ongoing respiratory tract infection and sinus infection that followed a severe outbreak of HSV1 on my face - and then the strange rashes and nerve tingling/prickling began. My symptoms aren't as bad as you are describing here though.

[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!!!!!!

[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.