Nerve pain? How is yours

[bigsusan]

Who else has nerve pain after their herpes diagnosis and how is it presenting?

I've been having it periodically through my arms, legs, and hands (tingling, twitching, stinging, cramping). Sometimes walking is harder because my feet & calves ache... even though theres no good reason for them to. Start shortly after my diagnosis early 2017 and has progressed. Valtrex hasn't helped.

I wonder if there are any other recent diagnosed people who are feeling the same? Has anyone tried a supplement or other medication that has helped with the nerve pain or other nerve abnormalities?

Edited June 8, 2018 by bigsusan

[Xmk224]

7 minutes ago, bigsusan said:

Who else has nerve pain after their herpes diagnosis and how is it presenting?

I've been having it periodically through my arms, legs, and hands (tingling, twitching, stinging, cramping). Sometimes walking is harder because my feet & calves ache... even though theres no good reason for them to. Start shortly after my diagnosis early 2017 and has progressed. Valtrex hasn't helped.

I wonder if there are any other recent diagnosed people who are feeling the same? Has anyone tried a supplement or other medication that has helped with the nerve pain or other nerve abnormalities?

I havent been diagnosed yet but i feel like ive had this nerve pain recently. Its like a burning pain in different areas all over my body. Legs, buttocks, arms, head, feet, fingers. Im not looking forward to getting tested bc i feel like i already know the outcome. 

[Puni]

Yes I have all the symptoms you mentioned, I'm GHSV1 

[WilsoInAus]

1 hour ago, bigsusan said:

Who else has nerve pain after their herpes diagnosis and how is it presenting?

I've been having it periodically through my arms, legs, and hands (tingling, twitching, stinging, cramping). Sometimes walking is harder because my feet & calves ache... even though theres no good reason for them to. Start shortly after my diagnosis early 2017 and has progressed. Valtrex hasn't helped.

I wonder if there are any other recent diagnosed people who are feeling the same? Has anyone tried a supplement or other medication that has helped with the nerve pain or other nerve abnormalities?

Herpes (meaning HSV-1 or HSV-2 here) has not been known to cause nerve issues in the arms and hands of the nature you describe. Further, herpes is not like a degenerative disease that may progressively get worse. It is highly improbable that herpes is the cause of your particular nerve pain. There are plenty of people without HSV1/2 that experience exactly your issues.

There are lot of causes for nerve pain, over 1.5 billion people in the world suffer from chronic pain. Nearly 300 million people have chronic nerve pain. Only a fraction of a percent of these are pessimistically assessed as being caused by HSV-1 or HSV-2. In fact there are elements in the immune response to HSV that also make for healthier nerve fibres!

[Xmk224]

13 hours ago, WilsoInAus said:

Herpes (meaning HSV-1 or HSV-2 here) has not been known to cause nerve issues in the arms and hands of the nature you describe. Further, herpes is not like a degenerative disease that may progressively get worse. It is highly improbable that herpes is the cause of your particular nerve pain. There are plenty of people without HSV1/2 that experience exactly your issues.

There are lot of causes for nerve pain, over 1.5 billion people in the world suffer from chronic pain. Nearly 300 million people have chronic nerve pain. Only a fraction of a percent of these are pessimistically assessed as being caused by HSV-1 or HSV-2. In fact there are elements in the immune response to HSV that also make for healthier nerve fibres!

@WilsoInAus, im reading alot of ppl with this virus are having these tingling/burning sensations in their upper body. Do you think it is just a coincidence? 

[Cas9]

18 minutes ago, Xmk224 said:

@WilsoInAus, im reading alot of ppl with this virus are having these tingling/burning sensations in their upper body. Do you think it is just a coincidence? 

Nerve pain from herpes is common. It typically would occur in the area that was infected. For example, ghsv2 nerve pain would usually be in the boxer short area although it can radiate down further. I've had hsv for 35+ years and starting with the initial OB, I've had episodes of nerve pain, perhaps 5 times a year. The pain is usually mild, occasionally moderate. It means the virus is active. The best remedy for me is simply a good nights sleep and the problem resolves in 24 - 48 hours. The important thing is not to get bent out of shape when you get it. If you do, that causes stress which in turn can make the process last longer. Just think of the nerve pain as a minor side affect. For example, when you exercise you might be a little sore the next day. But it doesn't emotionally bother you; You just kind of ignore it.

[Xmk224]

1 hour ago, Cas9 said:

Nerve pain from herpes is common. It typically would occur in the area that was infected. For example, ghsv2 nerve pain would usually be in the boxer short area although it can radiate down further. I've had hsv for 35+ years and starting with the initial OB, I've had episodes of nerve pain, perhaps 5 times a year. The pain is usually mild, occasionally moderate. It means the virus is active. The best remedy for me is simply a good nights sleep and the problem resolves in 24 - 48 hours. The important thing is not to get bent out of shape when you get it. If you do, that causes stress which in turn can make the process last longer. Just think of the nerve pain as a minor side affect. For example, when you exercise you might be a little sore the next day. But it doesn't emotionally bother you; You just kind of ignore it.

Thanks @Cas9. Im reading that ppl get these tingling sensations all over. I have them from my head to my toes basically. So im not sure where that puts me. Last night i had the hardest time sleeping bc of the dull pain in my arms. Its worse at night when im laying down. Maybe im obsessing to much at night and causing this on my own but i get these tingling sensations during the day also when im at work. But of course i dont notice it as much when im moving around. 

[Cas9]

56 minutes ago, Xmk224 said:

Thanks @Cas9. Im reading that ppl get these tingling sensations all over. I have them from my head to my toes basically. So im not sure where that puts me. Last night i had the hardest time sleeping bc of the dull pain in my arms. Its worse at night when im laying down. Maybe im obsessing to much at night and causing this on my own but i get these tingling sensations during the day also when im at work. But of course i dont notice it as much when im moving around. 

Having nerve issues ALL OVER is not typical. You should pretty much have the pain in the area you were infected and typically is not something that is constant. The pain is a sore skin (and just immediately below the skin) sensation. I guess the best description would be a sunburn. In your case, I would suggest looking in to other causes. Where is your hsv infection?

Edited June 8, 2018 by Cas9

[Xmk224]

5 minutes ago, Cas9 said:

Having nerve issues ALL OVER is not typical. You should pretty much have the pain in the area you were infected and typically is not something that is constant. The pain is a sore skin (and just immediately below the skin) sensation. I guess the best description would be a sunburn. In your case, I would suggest looking in to other causes. Where is your hsv infection?

@Cas9 i have not been diagnosed yet. Im self diagnosing myself bc of these weird symptoms ive been having . I feel like it must be genital herpes but i havent gotten any sores yet. I go to the dr in 2 weeks for my annual. 

[Cas9]

43 minutes ago, Xmk224 said:

@Cas9 i have not been diagnosed yet. Im self diagnosing myself bc of these weird symptoms ive been having . I feel like it must be genital herpes but i havent gotten any sores yet. I go to the dr in 2 weeks for my annual. 

Oh, I see. That puts a totally different light on the issue. Based on your symptoms, I would surmise that you do not have hsv. Tingling head to toe is not a symptom of herpes that I've ever heard of. The mistake you make by self diagnosing is you're wasting time finding out the cause. It could be something serious that needs attention sooner than later OR it could be something minor and you end up worrying yourself for no reason. See a doctor and start the process.

[Xmk224]

41 minutes ago, Cas9 said:

Oh, I see. That puts a totally different light on the issue. Based on your symptoms, I would surmise that you do not have hsv. Tingling head to toe is not a symptom of herpes that I've ever heard of. The mistake you make by self diagnosing is you're wasting time finding out the cause. It could be something serious that needs attention sooner than later OR it could be something minor and you end up worrying yourself for no reason. See a doctor and start the process.

@Cas9 i know but it didnt start out all over. First my genitals were on fire or had a burning sensation same as my anus. Then i had the tingling in the buttocks,  legs and feet. Now its all over. Im pretty sure i was tested for gonorrhea and chlamydia,  bv and yeast. All were negative. I do have HPV but my doctor told me i didnt have to worry and not to change anything in my life. I guess i need to stop using google...lol. 

Edited June 8, 2018 by Xmk224

[bigsusan]

On 6/9/2018 at 6:05 AM, Cas9 said:

Having nerve issues ALL OVER is not typical. You should pretty much have the pain in the area you were infected and typically is not something that is constant. The pain is a sore skin (and just immediately below the skin) sensation. I guess the best description would be a sunburn. In your case, I would suggest looking in to other causes. Where is your hsv infection?

Just a reminder that it doesn't have to be "typical" to be real... even if it happens to only 5~10% of people due to some not-well-understood/researched factor.

The pieces I've been putting together are pointing towards HSV and other nerve-related viral infections (occassionally, in some people for some reason) triggering autoimmune activity toward the nervous cells throughout the body. Many people on the BFS forums I've read up and down (BFS stands for benign fasciltation syndrome, unexplained twitching of muscles throughout body which can be accompanied by aches, stinging, and other nerve pain), have reported noticing these symptoms beginning soon after a HSV 1 or 2, epstin barr or shingles diagnosis.

So it's not necessarily that herpes virus itself is causing the facilitations or other nerve issues. Rather, an immune response triggered by the virus's infection, set off those secondary symptoms.

Finally, self-diagosing doesn't necessarily mean the person doesn't have herpes either. I self-diagnosed for 3 months before I got checked, before I ever had an actual sore (just felt prodromal feelings in various areas for a while). My positive test confirmed what I'd been feeling. Did I not have herpes those 3 months I was self-diagnosing?

Edited June 10, 2018 by bigsusan

[WilsoInAus]

20 minutes ago, bigsusan said:

Just a reminder that it doesn't have to be "typical" to be real... even if it happens to only 5~10% of people due to some not-well-understood/researched factor.

The pieces I've been putting together are pointing towards HSV and other nerve-related viral infections (occassionally, in some people for some reason) triggering autoimmune activity toward the nervous cells throughout the body. Many people on the BFS forums I've read up and down (BFS stands for benign fasciltation syndrome, unexplained twitching of muscles throughout body which can be accompanied by aches, stinging, and other nerve pain), have reported noticing these symptoms beginning soon after a HSV 1 or 2, epstin barr or shingles diagnosis.

So it's not necessarily that herpes virus itself is causing the facilitations or other nerve issues. Rather, an immune response triggered by the virus's infection, set off those secondary symptoms.

Finally, self-diagosing doesn't necessarily mean the person doesn't have herpes either. I self-diagnosed for 3 months before I got checked, before I ever had an actual sore (just felt prodromal feelings in various areas for a while). My positive test confirmed what I'd been feeling. Did I not have herpes those 3 months I was self-diagnosing?

No one is saying that the nerve pain is not real, in fact there are 300 million sufferers world-wide. However it isn't a 5-10% factor, it is either 0% or negligible.

Autoimmune activity has unknown causes. Everything happens after a HSV, EBV or CMV diagnosis. Nearly 100% of people have one of these.

No, your test in no way confirms that HSV has anything to do with your issues. In fact it is rather more important that you assume it has nothing to do with your issues lest you miss the actual cause and it be serious.

Edited June 10, 2018 by WilsoInAus

[Cas9]

6 hours ago, bigsusan said:

Just a reminder that it doesn't have to be "typical" to be real... even if it happens to only 5~10% of people due to some not-well-understood/researched factor.

The pieces I've been putting together are pointing towards HSV and other nerve-related viral infections (occassionally, in some people for some reason) triggering autoimmune activity toward the nervous cells throughout the body. Many people on the BFS forums I've read up and down (BFS stands for benign fasciltation syndrome, unexplained twitching of muscles throughout body which can be accompanied by aches, stinging, and other nerve pain), have reported noticing these symptoms beginning soon after a HSV 1 or 2, epstin barr or shingles diagnosis.

So it's not necessarily that herpes virus itself is causing the facilitations or other nerve issues. Rather, an immune response triggered by the virus's infection, set off those secondary symptoms.

Finally, self-diagosing doesn't necessarily mean the person doesn't have herpes either. I self-diagnosed for 3 months before I got checked, before I ever had an actual sore (just felt prodromal feelings in various areas for a while). My positive test confirmed what I'd been feeling. Did I not have herpes those 3 months I was self-diagnosing?

I don't think most of what you're saying here contradicts my earlier comment. I didn't say it was a certainty that it wasn't herpes, I said it's not typical of herpes. But if I had to guess, I would say it isn't because of the atypical symptoms (i.e. tingling HEAD to TOE). That's simply a logical conclusion based on the information at hand. Regarding self diagnosis, I really don't understand your comment. I didn't say self diagnosing meant that she didn't have herpes. That doesn't make sense. I essentially said that she shouldn't rely on self diagnosis as an OFFICIAL conclusion. Obviously she can come to some conclusion based on self diagnosis; That's fine. But ultimately she needs to get professional assistance to determine her issue because it could be something more serious or it could be something minor that has an easy fix. No sense stressing out that you have hsv if you don't.

[Cas9]

@bigsusan

Regarding what causes the nerve pain that often occurs in the boxer short area when one has ghsv2, my take is that it's caused by the virus directly, not the immune response. I base that belief on the following:

First, you mention autoimmune response towards the nerve cells throughout the body. I disagree with that hypothesis. Your immune system knows nothing about the virus inside the nerve cell and so it doesn't attack the nerve cells. And that's a good thing because we wouldn't want our immune system attacking our nerve cells. The immune system attacks the virus when the replicated viral particles emerge from the nerve cells at the skin surface. It is then that the virions are exposed and destroyed. So if the nerve pain was via the immune system, it should be felt only at the areas where there's an actual OB (i.e. sores). But the nerve pain can be felt in the entire general area away from the site where the sores are located. This implies that the viral activity inside the nerve cell is responsible for the pain. My sense is that the viral activity inside the neuron (i.e. when the virus becomes active and starts replicating), is an irritant to the neuron which of course registers as pain. That's my personal belief.

[Scooby2112]

I would tend to agree that the prodrome activity people have that comes slightly before an OB is a nerve irritation caused by the virus traveling the nerves to the surface.  

Generally this is also isolated to one side (the side the virus will emerge on.  

However what would cause constant nerve issues bilateral?  That doesn't sound like herpes not does whole body issues.  However I have both legs that burn from the hip joint toid thighs on the front of my legs.  

I am trying to find a new dr, as so far the Drs don't believe me because there are no signs on my legs (is rash, irritation, etc. ).  

[Cas9]

2 hours ago, Scooby2112 said:

I would tend to agree that the prodrome activity people have that comes slightly before an OB is a nerve irritation caused by the virus traveling the nerves to the surface.  

Generally this is also isolated to one side (the side the virus will emerge on.  

However what would cause constant nerve issues bilateral?  That doesn't sound like herpes not does whole body issues.  However I have both legs that burn from the hip joint toid thighs on the front of my legs.  

I am trying to find a new dr, as so far the Drs don't believe me because there are no signs on my legs (is rash, irritation, etc. ).  

I don't know your background. When were you diagnosed with ghsv2?

[HerpesDumbAf]

So is foot pain possible ? Because I’ve been getting A LOT of foot pain in my left heel and the left side of my right foot and right heel 

[Scooby2112]

12 hours ago, Savannah069 said:

So is foot pain possible ? Because I’ve been getting A LOT of foot pain in my left heel and the left side of my right foot and right heel 

Yes it's possible. The same dermatome of nerves that cover the anus and gentalia go down the back of the leg and bottom of the foot.  

[Scooby2112]

15 hours ago, Cas9 said:

I don't know your background. When were you diagnosed with ghsv2?

I am positive hsv1.  No typical outbreak, but turned positive from a previous negative (8years earlier) after a suspect oral encounter.  Turned positive 10 weeks after exposure (hsv1 - Igg = 4.5).  

[HerpesDumbAf]

53 minutes ago, Scooby2112 said:

Yes it's possible. The same dermatome of nerves that cover the anus and gentalia go down the back of the leg and bottom of the foot.  

It’s not even my legs tbh it’s just my foot, my antivirals cant stop the pain? 

[Cas9]

14 hours ago, Savannah069 said:

So is foot pain possible ? Because I’ve been getting A LOT of foot pain in my left heel and the left side of my right foot and right heel 

YES!  Upon my initial OB, which was the worst of all, the nerve pain was quite severe. It radiated down to my left foot. It hurt to put my shoe on. It hurt enough to make me limp. The OB itself lasted 5 - 6 weeks. Time wise, the nerve pain ran parallel to the actual OB. When the sores finally began to subside and crust over, so to did the nerve pain. I did have a few episodes of similar nerve pain over the course of the next year or two but eventually the nerve pain became shorter in duration and less severe.

[HerpesDumbAf]

37 minutes ago, Cas9 said:

YES!  Upon my initial OB, which was the worst of all, the nerve pain was quite severe. It radiated down to my left foot. It hurt to put my shoe on. It hurt enough to make me limp. The OB itself lasted 5 - 6 weeks. Time wise, the nerve pain ran parallel to the actual OB. When the sores finally began to subside and crust over, so to did the nerve pain. I did have a few episodes of similar nerve pain over the course of the next year or two but eventually the nerve pain became shorter in duration and less severe.

Both of my feet has pain and it’s been every day , seems my outbreak didn’t last long either but idk everything hurts from my neck to my feet 

[Cas9]

5 hours ago, Savannah069 said:

Both of my feet has pain and it’s been every day , seems my outbreak didn’t last long either but idk everything hurts from my neck to my feet 

As I said in a previous post, head to toe pain does not signify hsv. The pain I got in my left foot during a few OBs many years ago, was hsv related as I already explained. But the pain was a sore skin (or just below the skin would be a better description) sensation just like one commonly gets in the boxer short area. And, as I explained earlier, it wasn't constant, and it was during OBs. Other than the initial OB and few OBs after, which lasted for a while, my hsv symptoms are quite mild and short lived. Any nerve pain I get these days is mild 90% of time and resolved in 24 hrs. Occasionally the pain will be moderate, but still in the boxer short area. In those situations it typically takes 2 days to resolve.

Your situation may be something completely different. I don't even know if you have been officially diagnosed with hsv (1 or 2; genital or oral).

Edited June 11, 2018 by Cas9

[glasshalf]

No use in arguing whether hsv is causing it or not. Some people will say it's HSV and some people will say that hardly anything is HSV related even if you're pretty sure it is. 

The point is, you have nerve pain.  I've had it and it does feel like a sunburn and doesn't quite go away. THe best thing I've found to help is capsaicin cream.  You can find it on Amazon from a company called Rugby.  it can slightly burn at times but usually much less than BenGay or IcyHot. Just don't put directly on your genitals etc.  But I would buy a tube of it and apply to the areas 3xs/day.  The key is to do it consistently every day for about 2-3 weeks.  If it's going to work you will notice results by then and can continue applying and buy some more. If it doesn't work for you you can stop after about a month and you'll have to try something else. 

There are some actual clinical studies that explain. I posted somewhere else on here the link to it.  Make sure you wash your hands well after applying and again, do it consistently. It works quite well for me.