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Herpes and Neuropathy
You bet there is a correlation between herpes and pain, regardless of what the doctors say. It is a nasty virus, and I've suffered with it and neuropathic pain for years. Just recently I suffered from complete pain on my life side radiating from my neck, down my shoulder and all the way to my fingers -- tingling, muscle immobility, etc. Other times I have had severe back pain that moves up my spine in relation to the progress of an oncoming outbreak (usually on my face). Valtrex helps 99% of the time, including eliminating the outbreak itself (I get mine on my face). But in that 1% of the time that it doesn't help -- the pain is severe and breathtaking, causing sleeplessness, headaches and other symptoms. Know what you know about your body and don't let anyone, including a doctor, tell you differently.
Steve, you're absolutely correct with the correlation between herpes and neurological issues. I have HSV 2 and have experienced peripheral neuropathy several months after I contracted the virus. I've had night sweats, neuropathy, buzzing in nerves (feet, hands) , quick jolts of pain which are ALL associated with herpes because I've never experienced any of those symptoms prior to having herpes. My doctor even thinks I may have had herpes menagitis as well, but the only solution is Valtrex. It amazes me the level of ignorance in the medical field when it comes to herpes. Most medical experts claim it's just a skin disease, it's more than just that. Of course, it all depends on the individual, but it's a horrific disease. Most people that contract herpes have most of their new bodily symptoms dismissed because the medical world thinks it's just a skin disease. Hopefully a therapeutic vaccine will be on the market soon. Good luck!
shingles still stays in one dermatone and not in multiple ones. I really suspect you have something else going on. have you had emg's and mri's done?
Grace -- Thanks for your update. As you -- and I know -- more people suffer neurological symptoms assoc. with herpes than is realized, mostly b/c either the patient or medical provider forgets the association between the two.
However, you are right in that the problems usually go away with the outbreak -- which I have experienced myself. For me, some outbreaks take a while to reveal, meaning the pain associated with it is prolonged.
Yesterday my doctor reported that you can get shingles w/o the rash, which is important for other suffers to note. This can cause even more neurological problems, and he suspects I am having such an outbreak. Also, I have been to a neurologist and will see another next week.
Thanks for the dialogue. All information is good information. My goal was to help others understand that they "are not crazy" and that neuropathy and herpes can and often do have an association.
Steve
However, you are right in that the problems usually go away with the outbreak -- which I have experienced myself. For me, some outbreaks take a while to reveal, meaning the pain associated with it is prolonged.
Yesterday my doctor reported that you can get shingles w/o the rash, which is important for other suffers to note. This can cause even more neurological problems, and he suspects I am having such an outbreak. Also, I have been to a neurologist and will see another next week.
Thanks for the dialogue. All information is good information. My goal was to help others understand that they "are not crazy" and that neuropathy and herpes can and often do have an association.
Steve
neuropathy from herpes is very rare. in a small study on patients who suffered from it, they had a total disappearance of symptoms while on daily suppressive therapy.
yes indeed herpes does irritate the nerves but thankfully for most folks, it's not an issue outside of when they have active lesions present.
your symptoms you describe sound like something non-herpes related going on. I know it's very frustrating but continue to follow up with neurologists to try to get to the bottom of it. the vast majority of folks who post on the boards with presumed herpes neuropathy, over time with proper medical follow up tend to get non-herpes related answers as to the cause of them. it's doing your body a disfavor to say that it's herpes related just because a provider knows you have herpes.
feel free to pay to post to Terri Warren, the herpes expert, here on medhelp. She's been involved in herpes research for 30 years now and has contacts in some of the major herpes research centers in the US. She would be the best person to turn to help for at this point.
grace
yes indeed herpes does irritate the nerves but thankfully for most folks, it's not an issue outside of when they have active lesions present.
your symptoms you describe sound like something non-herpes related going on. I know it's very frustrating but continue to follow up with neurologists to try to get to the bottom of it. the vast majority of folks who post on the boards with presumed herpes neuropathy, over time with proper medical follow up tend to get non-herpes related answers as to the cause of them. it's doing your body a disfavor to say that it's herpes related just because a provider knows you have herpes.
feel free to pay to post to Terri Warren, the herpes expert, here on medhelp. She's been involved in herpes research for 30 years now and has contacts in some of the major herpes research centers in the US. She would be the best person to turn to help for at this point.
grace
Not sure why you want to insist that my doctors are wrong and that you are right, but you are not completely informed about the virus. But for the others reading this forum, here's information that explains why herpes and neuropathy are indeed related and why some of us experience degrees of pain in strange places -- this info was given to me by my medical providers over the years and can be found online in various medical sites: "HSV resides in the sacral ganglia located near the base of the spine. In the case of oral-facial herpes, HSV resides in the trigminal ganglia near the top of the spine. In these ganglia the virus remains protected from the bodies natural immune system and is capable of returning to the active state, though it can remain inactive for varied periods of time. It is because of this protected state of the virus that the symptoms can be treated, but the virus remains incurable....When the virus “wakes up”, it leaves the dorsal root ganglion...and travels up the spine...this is why herpes is considered a "nervous system virus" -- and hence, as it travels up your "nervous system" it can cause neuropathy/neuralgia in some patients."
Pain is associated with the herpes lesions themselves - this I will personally vouch for. But neuropathy is not common with herpes - especially not what you describe. Tens of million of folks have herpes - the vast majority will never have neuropathic pain. You should see a neurologist, not just a regular doctor.
As to the medical community being so far behind - I highly doubt you are more the expert than a medical doctor, even more specifically a neurologist or HSV expert - sorry!
As to the medical community being so far behind - I highly doubt you are more the expert than a medical doctor, even more specifically a neurologist or HSV expert - sorry!
Yes, have been to the doctor. As for such pain not being "common" -- I beg to differ. Look at all the posts here -- and in many other sites -- about pain associated with herpes. What's really astounding is that the medical community is so far behind on the topic and keep dismissing patients' commentary about the association of the two.
Such severe pain/neuropathy is not common with HSV. Have you seen a neurologist? Indeed, one should see a medical doctor, as such neuropathy is most likely associated with something much more serious, especially when it's on one side of the body (ie stroke). It's never best to self-diagnosis, and attribute everything to herpes, just because one has it. We would advise being seen immediately for symptoms such as you describe.
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