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

[Matt238]

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,

[halloween53]

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.

[thanksgiving]

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.

[JackR123]

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.

[thanksgiving]

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.

[Overit42]

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