Hi:
I posted a few months ago about being tested positive for HSV2 (blood test last year but more precisely a swab of my sore on my middle back last February positive for HSV2) and at the same time I did state the fact that I am not getting the sore anywhere near genitals but far from it, on my back (middle and upper parts) and more strangely in the last two attacks on my right arm (middle and upper arm)!!!!.
I didn't get any decisive response last time when I asked members if anyone else with HSV2 has had outbreaks in these or other non-genital areas. So here I am back and asking again hoping that may be new people who missed my thread a few months ago will see this one and respond. ARE YOU HSV2 positive and HAVING ATTACK on your BACK, ARMS but NOT GENITALS??. Please share if you do. That I am not alone.
I am puzzled about this (my doctors were too). Not that I am complaining as I hear that genital attacks are much more painful. I am guessing this rare case is so because I didn't catch it from sex but rather skin to skin contact (rare but possible). Also I have itch but no pain at all. Another fact that puzzles me is that what triggers an attack is the actual sex itself which likely weakens my immunse system and hence allow the damn virus comes out of hiding.
Hey Kevin, I can't help with too much but can tell you I'm mid my second OB. I've got one tiny spot "down there" which was itchy and sore when going the loo but nothing much and nothing like my first OB. What I have had though yesterday and today are bumps which are like bites, insect bites or something, popping up on my lower back and tummy, upper thigh and one on my arm. Super itchy and hot and then gone in a few hours. I've never had them before so I know it's got to be related. I knew it was common to appear in the boxer short area but I know nothing about symptoms in other areas... But I am like 99% that what I'm getting is related too and it isn't solely in the genital area. It's too much of a coincidence for it not to be related.
So I have a similar things happening to me but opposite of you. I was diagnosed with herpes type 1 through blood test but my 2 outbreaks have occurred in my genital area. My doctor tells me it's type 2 but my blood test says otherwise. I'm still confused and so is my doctor.
No this is not unusual. HSV1 can a;sp occur on genitals. It is not limited to around the mouth. Likely transmitted through oral sex (if receiving from a hsv1 infected person).
Hey Kevin,
I am in a similar situation. I conrtacted HSV2 from performing oral sex. Had a terrible initial outbreak in my throat but ever since then, I have had HSV2 lesions appear on my mid and upper back, lower part of my thigh, and on my right foot. Very bizarre and doctors don't know much about this but from searching the internet I think this is pretty common. It just has to do with where the virus makes its home in your nervous system. I too would love to understand what makes it appear in many different places on myself. Im also paranoid it will show up on my genitals but have no clear evidence that that has happened and I've been positive for about a year.
I did further research and it appears when symptoms occur not on genitals then it is called ORAL HSV2. Same virus but usually strikes belly up. Apparently it is caught by oral sex not unprotected intercourse which is the case with genital HSV2. less than 3% of HSV2 cases are in this Oral category.
I was diagnosed with HSV2 on my shoulder a year ago. Could have had it many years ago on my back too. and have been on suppressive acyclovir for a year. Which has worked. Until I stop taking it!
Doctors were baffled but I know it possible through skin to skin!
My partner finds it very difficult to accept 
I have genital herpes and have had it for years. I have not had any outbreaks in years. If I feel the slightest itch I take acyclovir immediately and itch stops.
I have an area on my arm ( at the bend in the arm) that frequently starts to itch and when I scratch it small sores appear. I'm not a doctor but I believe they are a herpes outbreak. My doctor agreed. Again I take acyclovir. It Itches so bad it drives me nuts. To stop the itching I use an ice pack and put on the location until the itching stops. By doing this when the itching first starts I am able to stop the pain and discontinue any outbreak immediately. Hope this helps. It has worked for me. PS A dermatologist told me to use the ice packs.
It may not be a herpes outbreak but I treat it as such anyway.
I have had four OBs and all have been on the same area of one arm. To my knowledge, I've never had it anywhere else. The last outbreak was last month - that's when the doctor finally did a test and discovered it was HSV2. Prior to that, it was thought to be shingles.
Same situation as you Kevin. I have outbreaks on my left wrist, left armpit, middle of my back, and recently on my right palm, which the palm occurrred two years after the others. tested positive for HSV2, but it has never been on my genitals. It does itch and hurt a lot. My dermatologist seems confused by it. It seems like not a lot of research has been done on it. Pretty frustrating. I also have a lot of pain after, I think it is PHN. Good to know I'm not alone.
kevin,
ive been hsv2 positive for about 7 years now and while my initial outbreak was a tiny spot down there, since then I primarily get it on the inner side of my left elbow. happens about once a year. take lysine and eat a lot of lysine rich foods to prevent outbreaks. alcohol, caffeine and sugar are known to be the worst for causing outbreaks,
I also get it on my left inner elbow.
You can and should find someone who is accepting of it...
Hey! You are the first other person i have heard of with this issue. 2 years ago, a small rash appeared just above my left knee. Both the swab and blood work confirmed it was hsv2. Not sure when i contracted it since i had been single for years prior to my initial outbreak. I have never had genital symptoms and have had a hard time finding any information on anything other than genital. Definitely hsv2. Definitely not genital. I have been to multiple doctors to find more answers about if i can spread it sexually (even though the actual rash is not at that site), if i can autoinnoculate myself, etc. Multiple doctors have told me it's not possible to have it where i have it and to re-test, or they give me wrong information because they don't know. I was told that it can only be transmitted while symptoms are present but all the research I've found says it can be transmitted asymptomatically. One doctor assured me it will always return to the same spot and i can't get it in 2 locations, then another doctor said if i touch my knee then touch my face i can spread it to my face. They said i could have got it from the gym, but that's gladitorium (only hsv1?). One doctor said i could have gotten it from a dog licking my leg - also a different hsv. One doctor told me it was "disseminated" which it's not. So far, I've had 3 breakouts over 2 years and each occurred at the same site. I'm not sure how big of an area the virus sheds across, if it can shed at multiple locations, or if it can be transmitted through discharge even if the rash is at a different site... The doctors don't seem to know either because of the location. One website said when the virus is active it sheds through the entire "boxer shorts region", hence prodromal pains or tingling. Another says it only sheds where the rash is. I don't care where it came from, it's easy to live with, hsv is super common, I just wish there was information available for hsv2 that is not and never was genital. Does having it on my knee mean i can't get it elsewhere? Is it not sexually transmitted in my case (unless buddy has a knee fetish and wants to has a vigorous go at my knee)? What is time? Are we just space dust floating around aimlessly? What is consciousness? Can ants get Cancer? Why am i still awake at 2:30am? At what point of this abhorrently long reply do i hire an editor and illustrator? I think "shoe" should be spelled "shoo" and "show" should be spelled "shoe".
I'm so glad I came across this thread, because I truly thought I was going crazy. I have been positive for HSV2 for the last six or seven years and just recently over the past two years, Ive started to experience these break outs on my upper arms, thighs and torso, unfortunately for me it seems like this is a commonly reocurring issue, seems like I should definitely start taking Acyclovir as it has helped many of you. Thank you for sharing, I wish you all the best health!!!
hi when i first contracted herpes within few hours i got little bump on thigh within 24 hours i had 5 or 6 big blisters going from vigina to belly button .
i had flu like symptoms i got diegnoised hsv2 .it was awful psycoligicailly and bk then no internet or support groups 17 years ago .
in them 17 years ive had herpes bumps in thighs butt crack vigina belly bottom cervix mouth tounge loads big like cranker sores im sure are herpes nostrils bells palsey .
after a bit of tooth treatment my face went parilized but i was asked by hospital if ive ever had herpes .
i do yhis awful thing i like to squeeze which kills is really dose hurt to bust a herpes spot but if you do its full off puss and blood quiet bit of blood .
sometimes if squeez the one bump forms group cluster and just water liquid then blood .
im not advising anybody to squeeze its just a terrible thing i do sometimes to mine .but i actually think ive infected one on my belly bottom it hurts so so much it wont burst if i feel it its like top of a volcano with larver being blister .i can feel like circel harder shape then in middle blister filled its killing me because its swollen and been like for couple of weeks but its just not popping .
i read on google b4 if you catch it in one area it wont come out in another but thats rubbish .
it can im lucky it hasnt come on my finger tips
but it has come on other parts of my body .
including mouth and nose .
if bloods say type one its type 1
it means a person with a cold sore did oral to you or oral to them and then he or she passed it to you .
ive hsv2 and i only got it on my mouth years later but its from doing oral exctra if i swabbed my mouth with a sore it would still say hsv2
Hey Kevin!
Your case is nearly identical to mine in terms of outbreak spots! 3 years ago I contracted the virus (HSV-2) from a sexual partner and had an initial breakout on my genital area. I then proceeded to not have another outbreak for about 6 months. Then, for the following 1.5 years, I have had about 11 or 12 outbreaks in total but only on the sides of both my arms (middle of upper arm, tricep area) and on the sides of both my legs (upper thigh just under the hip). I have yet to have another outbreak in the genital area, and am super confused. I have even gotten two of my outbreaks that have occurred on my arm swabbed, and they both came back positive for HSV-2.. despite not being on my genitals! Super weird.
I also agree with you that I have an itch, but no pain whatsoever. In the days leading up to an outbreak however, I noticed muscle fatigue and a tingling sensation in the soon to be affected area (arms + legs). Super strange, but then I just take a round of antivirals (4 pills twice a day for one day) and the lesions don't seem to appear - or if they do, they're minimal.
You're right in the fact that this type of outbreak is definitely nice in that there is barely any pain.. I could not imagine having outbreaks only in the genital region.. would be very debilitating in terms of walking, sitting, etc. However, I find it super concerning/lonely knowing not many people share this same experience. Especially considering it confuses the several doctors I have gone to.
Just wanted to reach out Kevin and say you are not alone!!
Cheers
Reading through your response to the original question "Chickenfingers" and I notice I am in the same boat as you! Would like some of my questions answered but doctors never seem to understand what the issue is. I too have been told its "disseminated" or that its not actually HSV-2 and rather shingles.. however I have been tested twice and its been confirmed that its genital - despite my outbreaks being primarily based on the trunks of my arms and legs (on both sides, and sometimes even at the same time).
I'm mainly replying back to your comment as I'm seeking additional information on the topic. Did you ever manage to figure out more on this weird type and distribution of HSV-2 we both seem to share? Have you seen more doctors since you last posted this and have been steered in a more informed direction? I'm mainly curious cause 1. I don't like this feeling of "unknowingness" about whats going on in my body and 2. I want to know what I should tell my sexual partners without completely scaring them off because of this exceptionally stigmatized infection.. despite it only occuring on my arms and legs. Ay yi yi.
Also, I agree. Shoe should definitely be spelled shoo.
i think im having the same as all of you! but i was diagnosed with HSV1 in august 2020 8 months ago. initial outbreak was mild genital. but now ive been having rashes on my left arm inside elbow. my question is - how contagious do you think these areas are? i dont get fluid filled blisters, just a lot of red bumps that itch like crazy. the first arm rash was so bad that i do think it left my skin discolored. im back to taking valcyclovir daily to stop the rashes. but im still worried this area needs to be kept covered and not let anyone touch it??