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

[cat197356]

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

[thanksgiving]

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.

[503]

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

[norsha1945]

I share your pain and understand exactly what you are going through.  I can't tell you how sorry I am.   just found this site and as sad as it is to hear how much pain others are in at least I now know that others are experiencing the same thing.  I have had a very severe strain of herpes II for 30 years. It has caused dibilitating nerve pain at times.  Before there was medication I got it every month with my menstrual cycle plut those other times that it just felt like showing up.  As you can imagine I had very little herpe free time. I will try and outline how it has manifested itself for me.  Horrible nerve pain throughout body just prior to outbreaks.  Sometimes this last for several days and sometimes longer into the outbreak.  I have been bedridden with pain to the extent my doctor checked me once because he thought i might have meningitus (sp) as the pain up my spine/neck and into my head was excruciating. Our nerves shot all over our bodies and herpes seems to have no boundaries.  Once medication was prescribed I started taking it when I thought I was starting to have an outbreak but unless you stay ahead of it happening it still seems to happen on a regular basis, at least it did for me. I then started taking daily doses of Famvir and once I did that I got my outbreaks down to three or so a year which was really good for me. This brings me to my current problem which I will share now.  As I said I have had this for many years and I think there is no way to know how it will affect us long term.  I don't think anyone including the doctors know either.  My current symtoms are very painful feet and the symtoms 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.

[nightshiftnurselady]

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

[aeiou1]

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

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

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