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Herpes Nerve Pain
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Herpes Nerve Pain

I am 39 years old and have only been with two men my whole life. When I remarried in 2005,  My husband had absolutely no idea he was carring the Herpes virus. Based on the tests, he probably got it back in his twenties (he is now 45). The doctor told us they could tell based on bloodwork if he had had it for a long time. I was with him for three years before we realized he had it. He had gotten the flu and his immune system was down even several weeks after, which is why we never knew before. There wasnt ever a time he even thought he had Herpes. I came down with the infection in Nov 2006. My doctor said afterward that she hasnt seen as many cases as severe as mine. I probably should have been hospitalized however at the time, emotionally I just wanted to be in my own home. It was by far one of the most painful experiences in my life. (and I have had 3 c-sections) Since then, my body has never been the same. I have never been a sickly person or chronic complainer. And I still dont let on when I am having pain now. However, I am very disturbed that there hasn't been more research done on some of the issues that many have complained about. Since contracting Herpes, every month, I experience some kind of nerve pain for several days. It usually lasts about 5 days or so , around my period. Its location generally is in my lower back, only on one side. It goes through the buttock and down my leg. I usually do not have any sores, once in a while I will get one or two. I also have had nerve pain in other areas as well, again only on one side wether it be a migraine , leg, arm or even in my neck. That happens less often however it is the exact same durration and  timing. I also have gotten a tiny little red dot in one eye only ( usually right in the corner on the inside of the bottom lid) while I am having an outbreak. And No, I do not have Herpes 1 or oral Herpes. I only have Genital Herpes.  I decided to write this because I have seen so many people write of similar nerve pain and All the doctor responses are very upsetting. I just wanted to let those reading this...No, You are not crazy! Herpes does cause some kind of nerve damage. I have experienced it first hand. It is very unfortunate that we have to be treated as if  there is something more wrong with us because they dont have a clue or better yet, There is no scientific information on this. I actually have documented alot for my doctor, who has been so positive in wanting to know my experiences. I am not on all kinds of medication and a person who is constantly in her office. I just deal with it the best I can and she has been willing to try some different things, such as Lyrica, for the nerve pain. I have really not talked about this openly except with her, clearly because the responses I see our beyond discouraging. I felt I needed to write this, finally, because I  am hoping it helps people like me, who are afraid to talk about it and not get the support they need or even the acknowledgement. I am hoping that one day the research will be done to acknowledge the nerve issues associated with Herpes. Until then, I wish all of you the best in coping and just know you are not alone.  Thanks!
Gabby
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11 Comments Post a Comment
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207091_tn?1337713093
Thanks for sharing your story.

Have you had the thing on your eye checked out?  If you think it might be herpes, it is vital that you get that checked out.  An eye doctor can do a simple test to see if its herpes or not.  Since ocular herpes can cause blindness, you should get it checked.  Don't panic though - ocular herpes is very rare, and is almost always caused by hsv1 traveling a nerve path to the eye, so I would be very surprised if you have ocular herpes.

Are you on suppression, like valtrex daily?  Since you aren't getting constant nerve pains, and its around your period, this would suggest the virus have become activated again, and it might help to be on suppression and see if it prevents this.

Aj
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Avatar_f_tn
Thanks for your comments. No I dont have ocular Herpes. I know it is just one of the signs I have experienced in the past. I have been tested for everything. Also I am on valtrex and have been since Nov 2006. I just thought my comments will help those who are getting responses that nerve pain isnt associated with Herpes.  It absolutely is! I hope hearing my story helps people who havent been supported in their questions and can put their mind at ease there are many who have experienced these real consequences from Herpes
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207091_tn?1337713093
Ok - I get it now.  

PHN is definitely a misunderstood condition, and it doesn't help that we don't have a lot of info on it.  There was a new study that was just released this week - have you seen it?    http://www.newswise.com/articles/view/542773/?sc=rsmn

Aj
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Avatar_f_tn
No I havent, Thank you! Its nice to see them at least acknowledging it to some degree. I hope in the future they learn more about it. It is a terrible thing, emotionally but to have professionals not acknowledge these real symptoms it just cruel. I just  finally felt compelled to write in hopes it will help someone!  Thanks again for the info!
Gabby
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Avatar_n_tn
thank you so much for posting your story! i, too have experienced a particular pain usually before an o/b.  starting at my buttocks (and on one side of my body) i have a pain that runs the length of my leg and into my ankles and feet.  sometimes there is a dull, deep, ache that is relieved by massage, and at other times it is extremely sensitive to the touch- even my clothes brushing against it is painful! i have read other posts, and some people have talked about symptoms of M.S. being similar or confused to this pain. i wish there was more information out there!
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Avatar_m_tn
you have mail.

Very intresting article too Jessi.... a little short but intresting.
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101028_tn?1348750963
the pain you describe is normal prodromal pain with herpes.  that's not phn.

grace
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Avatar_m_tn
I have the same nerve pain too and some times came with red pimble in scrotum with uncomfortable testicle after I had sex with a girl back to Auguest 2009 positive for HSV2. I done HSV IGG blood test Herpeselect W/refl  and HSV IGM many times after 3,6 and 12 months from my last contact and all came back negative and all other STDS and HIV test came back negative too. Can I have herpes with negative result ? Please help!!!!
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Avatar_m_tn
DO you feel the nerve pain all the day or go and back ?
Thank you!!
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Avatar_m_tn
I`m suffering with exactly what you are describing. My doctor tried to send me to a chiropracter! It`s been 5 days now, never been that long before. Am on 800mg Aciclovir at the moment but no outbreak. Don`t know what to do, am limping because of the pain in my foot. It`s normally fairly shortlived and on my right side, at the moment it is on the left.
Been swallowing Ibuprofen and Codeine to ease the pain but it doesn`t really work. What do you use for the pain? I`m allergic to paracetamol.
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Avatar_m_tn
Did you test positive for herpes?
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