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

[rjamesbee]

Great advice! I have been living with the nerve sensitivity for 10 years now and just take it as it is.. It comes and it passes, might be helpful to be a yoga teacher as well.. I hope people here will look for support sooner than to focus on the symptons.. It is clear enough we all have been given the Genital Herpes which puts us on a path to be conscious about making ourselves healthier people to prevent outbreaks.. I hope to find here more helpful insights on peoples experiences with the effects of lifestyles and foods/supplements on the outbreak.. I have used lysine and stayed away from otherwise very healthy nuts for a year without any effect for example.. Can be that other foods would prevent effectivity.. And I would hope that some medical experts would join in to the subject as well as they seem to lack knowledge on the subject in their clinics.. And if anybody has other suggestions on forum place where medics and patients join in a discussion please let me know! And as Yockora stated, do not forget to enjoy life and take this annoying affliction as a reminder to life consiously and healthy!

[thanksgiving]

Viruses are very difficult to understand, and I think that doctors just don't know much about it, and I can't believe that the medical community acknowledges that shingles cause neuralgia but herpes doesn't. I know this... I have a lot of neuralgia in that area and pain from you know where, also I have pain running down my inner thigh but don't know if that is from my hysterectomy complications, but I think the herpes has damaged the nerves and opened up new pathways. Probably the best thing to do is go to a good infectious disease doctor, maybe they could shed some light on it. When I think I'm coming down with it I start taking the acylovir (sp?) and it seems to help, but I have heard that if you take it every day as a preventive it can make it more frequent when you stop, or something like that, so I just start it as soon as I have symptoms, and the prodone is worse than the outbreak.

[seatown92]

I have similar symptoms as you describe.  I was recently infected with HSV1 (genitals and mouth) by my lovely gf who never told me she had this virus.  Now I have had a bad sore throat, numerous cold sores in my mouth, ear pain, lethargy, fever, and now, on day 9, I have everything except the sore throat but now I also have severe nerve pain in my lower and upper jaw.  My face is swollen, and about every 3 hrs the pain becomes unbearable.  Oxy and Vicodin don't even touch the pain, nor do NSAIDS.  Doc didn't want to go down the neuralgia route in his diagnosis of course, even though I mentioned it and he had no explanation for the nerve pain.  He just thinks it's a bad primary outbreak.  WTF!?!?  Never knew herpes was so unbelievably brutal!

[1soremouth]

I have just found out I have herpes simplex 1 virus/ I have the most painful sore inside my mouth near the underside of  my tongue and nerve pain from my ear down to my lower jaw. Have you ever had a toothache, well this feels like every tooth has a toothache. Acyclovir and have a topical pain killer to swab inside my mouth. Nothing is helping yet. Had it for a few weeks thinking it would go away before seeing doctor, but pain is so bad. Does anyone know how long this takes to heal.

[Yockora]

More and more cases of Post Herpetic Neuralgia from Genetal Herpes is being reported. Doctors are at a loss, as they think that only Zoster (Shingles) causes such pain. They are mistaken.

Many people report buttocks, hamstring, back of leg, calves, foot and back pain from genital herpes infections, particularly those that are having severe outbreaks or those that catch the virus later in life with supposedly weaker immune systems. Some report this pain lasts for years - or life. Don't despair! Everyone is different. Believe your body can heal, and it will!

Heavy doses of Valtrex sometimes relieves the pain. The theory is that the virus is active and irritating the nerves in the sacral region and distal (beyond) that point. Thus taking Valtrex at a regular and sustained dose for a few weeks at the least sometimes relieves the pain as it apparently is finally putting the virus into remission and giving the agitated nerves a rest.

REGULAR AND SUSTAINED EXERCISE AND A PROPER DIET IS THE MOST IMPORTANT THING!

Patients whom lead a sedentary lifestyle have many more PHN complaints than those that are very active. Bicycling, Running, Swimming, Jogging, and other cardio where you are using your back and legs helps tremendously. Like vascular syndrom, neuropathways may be able to re-route and repair, and regular exercise helps tremendously. Sitting on your butt all day is the worst thing you can do.  

Diet is important. Lots of sugar, and other unhealthy foods can be detrimental. Avoiding peanuts, dark chocolate, coffee, corn, and other presumed breakout foods high in argenine may help. Certainly, a healthy diet will absolutely boost the immune system.

Finally, supplements such as coconut oil, lysene, vitamin C, Vitamin D, Zinc, and Eccinacia are all reputed to help fight viral infections. Many believe they do.

THE MIND IS A POWERFUL THING!  I had herpes I since I was a kid and only had one minor outbreak on my lip during a very stressful week. Why? Because until I started to learn about the virus, I thought cold sores were a NON-ISSUE that everyone got maybe once or twice in their lives. If you stress about herpes, you will feed the virus. If you feel you can beat it, and allow your mind to control the body and relax, your body knows what to do!

Good luck! Live Well! Enjoy your life. Herpes has been around for 10,000 years. Our bodies know how to fight it. It just takes time and patience. Trust in this.

[thanksgiving]

Thanks you guys, for the info.