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Forum Name: Other infections

Question: can genital herpes cause nerve damage? probs with nerve pain


 missmoo - Tue May 24, 2005 8:08 am

i've had genital herpes for about 14 years. I've always had frequent and bad attacks. i take 800mg of aciclovir daily for maintenance, but still get break through infections.

i have always had some nerve pain at the site of the attack and usually down my leg/buttocks/ankle and this feels like small electric shocks, sensitivity to the cold and very sensitive to touch in the area of the nerve pain. This normally only lasts 2-4 days just prior to and during an attack.

This particular time the nerve pain is totally excruciating, going not only across my buttocks and down my leg (causing me to limp with pain) but also up through my armpit, down my arm and into my hand. all EXTREMELY sensitive to touch that i can hardly bear to have clothing touch my skin. This has been going on for 2 weeks now and is making me extremely depressed.

i am sure i have post herpetic neuralgia (PHN) but am told that this can only happen if I've had shingles (which i haven't, but when i was 3 my doc said i had the chicken pox so badly that if i was an adult he would have called it shingles).

i have asked my doctor for pain relief from this terrible nerve pain, but have been told that gabapentin/neurontin will not be prescribed unless I have had shingles and he says it's PHN, which obvisouly he won't. I understand that a combination therapy of gabapentin and morphine is the best for nerve pain, but i can't get anyone to help me.

CAN severe genital herpes CAUSE nerve damage? i can't imagine why else i would be suffering such nerve pain otherwise.

please if anyone can give me some advice i'd be very grateful as this awful pain is getting too much and the doctors don't' want to help.
 Dr. Anthony Solomon - Sat May 28, 2005 4:20 pm

The well-known complications of genital herpes are recurrent painful genital sores and psychological distress in persons who know they are infected. Nerve damage has not been documented as a complication.

Post-herpetic neuralgia is a complication of herpes zoster, commonly known as shingles.
Herpes zoster is not the same disease as genital herpes. The former is caused by the varicella-zoster virus; the latter is caused by the herpes simplex virus.

The excruciating pain that you are experiencing in the buttocks and radiating down the lower limb to your ankle is very suggestive of a lesion in the lumbo-sacral spine affecting the lumbar or sacral nerves.

You must have an MRI scan of the lumbo-sacral spine under the management of a spinal orthopaedic surgeon. Treatment will depend on the findings. There are certain drugs that are very useful for neuropathic pain, but I do not prescribe on the internet. I am sure that the spinal surgeon will assist you in this respect. An MRI scan of the neck region is also indicated to investigate the pain in the shoulder radiating to your hand.

I am very concerned about the remarks you made that doctors do not want to help you with your present complaints. Did you consult your primary care physician? Did your physician not advise an MRI scan or referral to a spinal orthopedic surgeon?

Dr Anthony Solomon
MB BS DTM&H DIP.VEN FRSM
Consultant Physician, Tropical & Genitourinary Medicine
 missmoo - Sun May 29, 2005 6:19 am

"The excruciating pain that you are experiencing in the buttocks and radiating down the lower limb to your ankle is very suggestive of a lesion in the lumbo-sacral spine affecting the lumbar or sacral nerves."

what would cause such a lesion, and would that be a lesion on the nerve?
i did sprain/strain my sacroiliac joint about 10 years ago playing squash (racketball?) but have had no problems with it since...

it just seems very odd that during this particular herpes attack the 'usual' nerve pain has been so much more intense and also in other areas (ie. undearm). I never had these pains until i got herpes when I was 18.

For some reason my profile says I'm in the USA but I am actually in the UK and our public healthcare system would never allow for an MRI scan and it would cost me thousands and thousands to have it done privately.

i did consult with my GP but all i was given was dihydrocodeine, which I already told him i have tried, and know it does not work for nerve pain, and he jsut told me it was out of his area and to go to the genito urinary clinic, for which i have an appointment on 1st june. however, they would not refer me for an MRI either.

also i think that because i had an episode of clinical depression some 5 years ago, most doctors presume any pain i have is psychosomatic.

Thank you very much for your comments, and i will investigate how much it is to see a private orthopedic surgeon, although I'm sure i will need a referral from my GP and he doesn't seem interested.
 Dr. Anthony Solomon - Sat Jul 02, 2005 8:00 pm

Please update us with any investigations and/or treatment conducted at your June 1st appointment.

In answer to your first question, a common cause would be a prolapsed intervertebral disc, also known as disc prolapse. An MRI scan is very diagnostic of this condition or any bony lesion affecting the lumbar or sacral nerves.

I have checked with the administrator of this website about your complaint, and he is emphatic that the information you supplied is what appears in your profile. No one can alter that information. I am unable to open your profile page to confirm your complaint; if you can do so, please confirm that the location error is still appearing.

If your sypmtoms are still present, your GP is obliged to refer you to the District General Hospital for examination by a spinal orthopaedic surgeon. Under this specialist, the investigation of first choice, if indicated after a clinical examniation, is MRI scanning.

Dr Anthony Solomon
 hayley3 - Thu Aug 18, 2005 10:49 am

I have almost the same identical problem.
It runs all the way down from under my left buttock to my ankle. I can barely stand to sit on the toilet and it always happens when I have a herpes outbreak. It's more painful on the backside of the thigh and buttock, although the pain extends further down too. Excruciatingly painful. It has happened so many times, that there is no doubt in my mind that it is the herpes virus that is causing the pain. Also, since the pain starts there (prodrome), that tells me that I'm getting a herpes outbreak.
 hayley3 - Thu Aug 18, 2005 10:55 am

I forgot to add, I''ve had it for 25 years. Guess us HSV'ers need to complain more, huh.
 tcwimx - Wed Nov 30, 2005 11:41 pm

i've had herpes for about 20 years with outbreaks happening once to twice a year; lately, i've developed the same pain in one buttock, very sharp and enduring; it never goes completely away, but grows in intensity just before an outbreak; i visited a neurologist who prescribed Clonazepam ("Rivotril") which relieves the pain for about 12 hours; it's very addictive though so i only use it when the pain is really bad. it seems to me there's some research needing to be done on this issue; long time sufferers of herpes do seem to develop nerve damage with resulting pain in the legs and buttocks; i have never been injured (in these areas) so getting an MRI seems unnecessary; i was wondering----has anyone thought of accupuncture?
 cinz - Sun Dec 11, 2005 3:57 pm

I had GH for 9 years. I have the same symptons whenever outbreak happens. And recently, my Leg has no strength even outbreak is over, No nerve pain but muscle weakness and quiver
 cinz - Sun Dec 11, 2005 4:23 pm

I have had GH for 9 years. I have same symptons as described above. And more, recently, My right leg become weak, no strength to move, Mucles quiver after the outbreak. I guess GH cause neve damage. I going to see neroulogist, I will come back and have your guys updated.
 tevans - Fri Feb 10, 2006 5:52 am

I am 46 years old, female, and have had GH for about 25 years. My lesions occur less frequently now but I still experience nerve pain and sensitivity usually going down the back of my left leg and to my feet. This usually happens when I'm a bit run down or my immune system is taxed for some reason. I believe my neuropathy worsened when I had a bad flu almost 4 years ago. My immune system was really stressed because of the flu and I began to have all types of nervous system problems. I would stop breathing when I started to go to sleep, my heart seemed like it was struggling to work, I had nerve pain in the tips of my fingers, teeth and the bottoms of my feet that I'd never had before. As I was starting to get better and walking around my feet actually inflamed on the sides and I could hardly walk from the neuropathy. As my strength returned this got better but by the end of the day I could hardly stand. I went to a neurologist but he couldn't find anything wrong and said it must have been due to the flu virus and that I should recover. When we returned to the U.S. I was referred to a chiropractor and began treatments on my spine. This is what began to aleviate my problems. I believe the manipulation of my lower lumbar was what took the pain away. Now we are back in Brazil and in a city where we have no chiropractor and my symptoms are returning. I occasionally have sleep apnea again and heart pounding and am having nerve pain in my feet. The typical pain and sensitivity that I have in the back of the leg us usually helped with ibuprofen and it ususally helps diminish the severity of the GH. I believe that it was the herpes virus that attacked my nervous system while I was so sick with the flu and caused the damage, not the flu virus itself, because it persists and happens along with the accompanying nerve pain in the leg. I would recommend that anyone try chiropractic treatment for the relief of neuropathy caused by GH. I wonder too if GH virus has something to do with the MS like symptoms that some of the posters have had, muscle weakness and lack of strength.
 FUTURE_PA - Mon Dec 18, 2006 8:43 pm

I have noticed these symptoms worsening in the past 2 years...i had and outbreak last week and have been developing symptoms of MS. It started 2 years ago with the sharp pain shooting through my left buttock...down the hamstring...the back of the knee...calf muscle...heel and toes. The pain wasnt helped by ibuprofen or asprin, only the anti-viral medications would decrease the duration.

My sister got GH from her boyfriend in 1997. She has been complaining of the same severe...almost unbearable buttock, leg and foot pain. Im not an MD, but I think that we are on to something...could it possibly be some sort of HSV-2 mutation?? Is there a link between Multiple Sclerosis and GH? Could this virus be damaging the Mylein lining of the nerves..causing the immune system to attack the Mylein while trying to suppress HSV-2??? I know my hypothesis my sound strange to the MD's that are here. One more question...do any of you suffer from any allergies? I have more food allergies than anyone that I know...I think this may also play a role concerning these new symptoms. I have recently had many symptoms of MS. It stared with the symptoms you all are having...then i would have strange sensations in my left leg like...numbness, burning, pins and needles...feeling like something was crawling inside of my leg.. also random jerking of my leg.

Last week upon waking I was completely numb and weak on my entire left side from the chest down..after placing my left contact lens in I could not get it to focus...everything was blurry. My left eye has been burning for a week, I also have terrible stabbing pain behind my left eye. I have also had twitching of my eye and eye lid. I will be seening a neurologist soon. I hope someone follows up on my post. This is really serious!!!!
 need answers21 - Tue Jan 27, 2009 1:01 pm

Hi there, this is the first time I have joined any type of blog or forum...but reading the above stories compelled me to write. I am 30 years old and I was diagnosed with hsv 2 five months ago. My initial outbreak was excrutiating. I had only one lesion, but my lymph nodes in my genital area were extremely swollen, I had numbness from my unmbilical to my knees, sharp stabbing shooting pain that would travel down my upper leg. I had pins and needles in the bottom of my feet making it painful to walk, the "nerve pain" in my legs and buttocks made it extremely painful to sit, to where clothes and even goose bumps were painful. I also suffered extreme pain with urination, that I was worried would lead to urinary retention. I have had an outbreak every month since, thank goodness not nearly as painful or debilitating as the first primary outbread. The reason I am writing this is because I wanted to share the fact that I also still get "nerve pain" causing numbness, shooting/stabbing pain down my leg, aching, and its extremely painful to touch. This does not occur with every outbreak, however I do not get a lesion every time I get the nerve pain either. I know my body, and I know that this nerve pain WAS caused by the herpes simplex II virus. It is undeniable. Whether I have lesions internally or whether my first outbreak damaged my nerves I have no idea...im not sure how that works. However this nerve pain NEVER occured prior to my infection and it WAS terrible during my first outbreak and now continues to bother me occasionally. I am SO tired of visiting doctors offices and being told that herpes does not cause nerve pain such as this.....I want to know answers...how does the virus cause this??
Just a side note...I have heard that the drug tramadol/ tridural is very effective in treating nerve pain for those of you that cannot seem to find a remedy.
 healthseeker50 - Mon Apr 06, 2009 10:38 pm

First, I have been diagnosed with GHS since about 2007, although my first "tiny" lesion near the bottom of my right labia appeared about mid 2005. BUT what wasn't tiny at all was the very severe low back pain and anterior thigh pain down to my knee that came before ( it is always before !! at least with me) the show of the tiny lesion. At first I did not put the two together, NOT AT ALL and I am a highly skilled anesthesia provider. Really I had been married so long, the thought of GHS was not a reality for me......such is life !! I went to my OB/GYN showed him the spot and he said no it doesn't look like it. About 9 months later, again the pain BEFORE and the tiny lesion (for some reason my lesions do not look like what you might think, and at that point I had never seen a pustule or blister)and again not a real connect since my job is a very physical one, and agian the OBGYN said no it wasn't and suggested a biopsy (yes he is a good one). I said let's wait and see what happens over the next month. OK 3rd round.....the same tiny lesions, pain before....I started to see a pattern (I have a calender that I use to track these events) and I went to see OBGYN, and this time he agreed and we did a blood test and culture...blood test postive, culture negative ( not unusal). I was upset, and worried all the time, was this an outbreak ??? He offered me Valtrex and I have to admit it helped. Being the little researcher that I am, I took myself off the valtrex after about 9 months to see what happens. NOT a good idea. OK and this is the present time we are talking......SEVERE anterior lateral thigh, above the knee, around the inside of knee, and down to the front of my leg TERRIBLE pain, I was having to take 800 Motrin twice a day and do lots of interventions, and called a neurosurgeon friend thinking I had slipped or bulged my lumbar disk (the pain follow the L5 tract) BUT really I thought this was a pure physical mechanical event and did not except to see a GHV outbreak. he diagnosed me with L5 nerve root inflamation, put me on a steroid dose pack and I start PT in two days BUTTTTT then on the 4 th day of the predisone, a GHS outbreak and this time I actually think it looks like a more classic herpes. SOOOO now I am looking at the last few years, and I have 12 years of medical training......YES there is a clear and direct relationship. I am very glad to have found at least someone else who can discuss this and do plaan on an open talk with my Doc, but I aslo wonder does anyone know who is a leading expert in Herpes and other transmittable diseases that have the potential to affect the neuro paths and so gravely, one's life.....the tiny blisters are NOTHING compared to the pain, at least for me. Thank you for listening.....I have NEVER written on a blog before.
 BigPain - Thu May 21, 2009 2:38 pm

I have hsv1 and extreme pain in the buttocks hamstrings knees calves shins ankles bottoms and tops of my feet and leg skin.

I have had hsv1 in the genital region for 5 years. I have never had an outbreak as bad as the one I am currently experiencing nor has an outbreak ever been accompanied by butt leg and foot pain.

The pain is absolutely awful! It hurts even to have my cotton sweat pants swish over the skin on my legs. I do not have any known injuries but 2 weeks prior to this outbreak I started exercising with weights very strenuously. I was targeting the mid section including the abdominals, the side muscles, the lower back, the butt and the thighs. I did no aerobic, foot ankle or lower leg work. (actually I did use the leg press two of the ten days but with fairly light weight) I was working out between 1 and 2 hours five days a week.

I might add that I also do web development work so I sit in front of a computer all day in a chair which reclines leaving my legs almost dangling. I had thought that maybe this was cutting off circulation and causing it--but this is not a new chair and it is very new very irritating pain.

This pain is aweful and I want it to go away. Could it be nerve damage? I know hsv lives on the nerve.
 Dr.M.jagesh kamath - Mon Nov 23, 2009 10:33 am

User avatar Hello,Generally we associate shingles ie herpes zoster with severe dermatomal neuralgia in which pain is experienced along the nerve supply.As for as herpes simplex1 goes by there are a few scattered references connecting it to unilateral facial pain of dermatomal type.Recently some experiments on mice models have shown that HSV1 could cause this type of pain.I am not sure whether your pain of this severity is anyway associated with HSV1 but it could be other neurological conditions or disc related problem,the more likely cause.Best wishes.
 jessicah1 - Sat Jul 03, 2010 9:31 pm

I too have been having the same problems with extreme muscle pains but I wasn't diagnosed with Herpes 2 until July 2010 although I was having symptoms of genital lesions showing up and disappearing after a week or two and not reappearing for months. I went to several doctors over the years but they all assumed I couldn't have a STD if I had stopped having sex. I don't study medicine but I know enough to know that just because I stop having sex doesn't mean that I am automatically cured of any STD I might have caught when I was still having sex. I explained that I was raped years ago and I assumed that they tested me for everything when they did a rape kit. When I didn't get a phone call back then I thought I was fine. When the outbreaks came later then I assumed it was just some type of temporary infection. When the lesions went away I didn't think nothing of it. When they returned months later I assumed I must have gotten an infection again somehow. I began to wonder if I ever was tested for STDs after being raped when one of my two children, my daughter, started having the same problems as I was having in 2007. I thought surely there is no way doctors would not test me for stds when I was pregnant. It seemed to be a common sense thing to do from my perspective. Finally in 2009 and 2010, the doctors supposedly tested me for Syphilis, Gonorrhea, Chlamydia, Hepatitis, HIV which all came back negative. I asked for to be tested for Herpes all the time but was told that I didn't have anything to worry about if the other tests were all negative. When I finally was able to get an appointment at the time of an outbreak the doctor tested me for Herpes and it came back positive. It took 20 years to finally find out what these outbreaks were. I have extreme muscle pains all over my body including my legs and buttocks, headaches, dizziness, and problems staying asleep. I suggested to my primary care doctor if the Herpes virus is the cause for all these symptoms but she said no it wasn't. After reading posts on this site I have to disagree with her. I was always told to speak to a psychiatrist regarding my symptoms because doctors always assumed I was just under stress or depressed. I told them I had nothing in my life to be depressed about other than the fact that I was having trouble finding out what was the cause of all those symptoms.
 onegirl - Thu Jul 15, 2010 10:12 pm

I find it interesting that so many of us have almost the exact same symptoms yet the docs "aren't sure" or "haven't heard" of hsv causing these symptoms. I think that is very sad. I did a google search on these specific symptoms, not something that I just associated with!

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