Post herpetic nerve pain - any tips?

[Ellie88]

@Blue1982 @BonBon I’m going on 5 months completely pain free so after one more month I’m going to start weaning off slowly to see how my body responds. I’ll definitely keep you posted! 
 

On a separate note, I’m also taking the following supplements my naturopath has me on to promote healthy nerves and a strong immune system. 
 

EGCG SAP

B-Conplex SAP 

ALA SAP

Vitamin C - 1000mg 

Theracurmin - 120mg 

[BonBon]

@Ellie88 at least the pill doesn’t make you groggy during the day. And I think it is inflammation but if we can get the inflammation to go down, hopefully the nerve isn’t damaged, than maybe the pain will stop. 

I do have some good news for me. The day I wrote my post I had a really bad day with it. That was Friday. On Saturday I felt like I had turned a corner and my pain was down a lot. And for a couple days it wasn’t terrible. Yesterday another bad day but not as bad as others. I texted my Dr and he said to keep taking the Valtrex for a couple more weeks and to make an appt with him for two weeks and if I’m not better by than we can talk about prednisone. I was really worried this would never end. But today has been my best day so far. Almost no pain. Just a little tingle. No pressure feeling. My sore is still there but it’s healing so I’m hoping once it heals my pain will stop. I’m not getting my hopes up completely because I’ve been fooled before and I will need to stop taking the Valtrex. But I’m starting to see a little little at the end of the tunnel. 

Since I didn’t take the prednisone yet I can’t answer. If in two weeks the pain is gone I will cancel my Dr appt too. 

I’ll stay in touch and let you know how it goes in a couple weeks. 

[BonBon]

@Ellie88 glad to hear you’re out of pain too. Are those brand names to the supplements? I’ll look into them. 

Hope your pain stays away...

[Ellie88]

No, those are the names of the vitamins. The brands bio clinic naturals, natural factors, and NDH 😊

Glad to hear you’re having good days! 

[BonBon]

@Ellie88 well I spoke to soon. I had a stressful day today and the pain is back. Not as bad as before but that irritated swollen feeling is back. It definitely goes with stress, no question. And when this happens I stress more because as you said I worry this will go on the rest of my life and I really can’t stand it. There are going to be stressful days, you can’t avoid that, especially now. I think it’s inflamed and the stress inflames  it more. I really hope the nerve isn’t damaged and that’s what’s causing it. I don’t know what kind of horrendous test you’d need to go through to find that out. If you are pain free then it sounds like your nerve isn’t damaged. 
 

My plan is to do the pills as my dermatologist said. Go to him for my appointment. See if I should take the prednisone. If that doesn’t work then I’ll see  about going to a neurologist to see if the nerve is damaged. Or I’ll see if my GP can prescribe what you’re taking. If you have been out of pain than that must work. 
 

Can you remind what Drs you went too? I know you said the naturopath gave you the supplements but who is prescribing the anxiety meds? 
 

I’ll also look up those supplements. I was going to take a stress B complex, and turmeric anyway.  I also really need to make some life changes. Getting more sleep, exercising and meditating. But with everything going on with virus and life stuff  I have been a ball of nerves. I can’t shake it. I think that’s what’s keeping this thing alive. 
 

I hope we can all find peace. It sounds like you are in your way.  

[BonBon]

@Ellie88 @Blue1982

I wanted to ask you both what does yours feel like? Mine was itchy, burning, pin prick feelings and then pressure, inflamed and swollen feelings in my anal area. The itchy, burning dvd pun pricks are gone pretty much. There is always a sensation there but when it acts up I feel the pressure and swollen feeling. 
 

Ellie88 I read again what your naturopath said about the nerve not turning off when it’s inflamed/damaged. That’s why I’m thinking if the inflammation can get calmed down it will stop. That is if the nerve is not fully damaged. But if you were  able to get it to stop with the pills then it doesn’t sound like it’s damaged. And if I get it to calm down when I’m not stressed then I’m thinking it’s not damaged it just needs to stay calm. But then again if your naturopaths theory is that if it’s damaged it doesn’t know how to shut off then what? 
 

I also wonder if someone can study this. We can’t be the only ones with this issue with HSV. 

[Blue1982]

@BonBon my pain started in my vagina, felt like sharp pain, almost like a tear...burning, tingling, itchy....after 6 months the feelings spread to my lower abdomen/right hip.

feels like random stabbing, pulled muscle, ramping, sometimes burning. It’s really weird.

when I started having painful orgasms 4 months ago, everything felt fine until the moment of orgasm and then instead of pleasure it felt like a sharp shooting electrical current to my lower abdomen on the right side.

ultrasound showed nothing 

[BonBon]

@Blue1982 did you have any sores? I think I mentioned this before but my first outbreak was maybe 10 years ago. It would start with a little tingle and then a sore would come out. I’d put the cream on and in a couple days it would be gone. It was a none issue. I got a couple in my anal area and a couple in my vaginal area. But I’ve only had a few outbreaks. This one started in my lower back area and spread just to my anal area. I didn’t have a sore until a month ago. The sore is very small. This one is a really weird outbreak. It’s also taking a long time for the sore to go away. I think or hoping once the sore is healed my pain will lessen too. Because when I press the sore  that is where the pain radiates from. 

I feel so bad that your pain radiates like that. Are you sure it’s HSV? 

As I also mentioned when I have a bad day I get so moody. It zaps my energy because all I can do is think of my pain. On the good days I get happy maybe it’s going away and I get energy and remember how it felt to not feel it. I do have to say the pain is getting less and easier to control. But it’s not all gone. 
 
I really do hope we all find some relief from this. 

[Blue1982]

@BonBon I’ve only had one outbreak internally (vaginally) that was 9 months ago and they swabbed it and it came back negative for HSV2 so I’m assuming it’s HSV1.

i took valtrex when I had the sores and they went away quickly. 
 

but since then I’ve had the pain. I’m hoping to get a blood test for HSV1 in two weeks. But I heard blood tests can be unreliable.

i haven’t had an outbreak since...doctor said visually it looks like herpes and I had flu-like symptoms the day before the outbreak, so I’m assuming it’s herpes too because I don’t know what else causes sores like that. 
 

im really hoping the pain goes away too! My body has felt like constant nerve pain since the outbreak. 

[BonBon]

@Blue1982 I thought if the sores happen genitally it’s HSV2. HSV1 is cold sores. I had blood tests and have  both. I never had a cold sore though. 
 

Does yours get worse with stress? That really triggers it for me. 
 

I really appreciate talking to you ladies. It helps. Maybe we can exchange emails or something so we don’t have to keep posting all this . But either way we can keep in touch because we can exchange things that might be working. And how it all works out for us. Talk soon... 

[Blue1982]

@BonBon HSV1 can be genitally too, I got it after my boyfriend performed oral on me. It tends to be “less severe” than genital HSV2 because HSV1 favors the mouth but it’s been horrible nerve pain for me rather than frequent outbreaks.

i really hope this all calms down eventually, it’s really impacting my life in every sense.

 

and yes mine totally flares up way more when I’m stressed!!!

[BonBon]

@Blue1982 got it...if I knew for sure the nerve wasn’t damaged and it’s just a matter of finding the right thing to make it go away I’d feel a little better but just the thought of this possibly never going away is what is scarring me. Right now since we really can’t do much because of COVID. I don’t feel so bad staying home and dealing with it. But eventually I want to go out again, travel live life and if I’m in pain it’s hard to do. But actually when I go out or go on vacation it gets less or goes away because I’m less stressed. But I don’t want to live life fearing it will hurt. It seems now it’s every other day and the pain isn’t as bad. So there may be some hope. 

i also don’t know what other Drs to go to if my dermatologist can’t help me. 
 

It’s frustrating and expensive dealing with this 

[Ellie88]

@Blue1982 @BonBon

Hi ladies, 

Sorry I’ve been MIA. It saddens me to read of the pain that you’re in. It’s one thing dealing with the stigma and mental/emotional piece that ties into this virus, but the constant pain just adds a whole other layer to the mix. 

Last week I came of of the amitriptyline (weaned for past 3 weeks) and within two days the pain returned after being pain free for 6 months. For me it’s sensations of skin crawling, raw, itchy and burning. I unfortunately contracted it in two locations, on my neck and vaginally. After spending a week with a local Hawaiian man on vacation and not having been intimate for a year I thought why not? Well, lesson learned. We used protection but he gave me a hickey and performed oral which is how I contracted it. I’ve only ever had the initial outbreak down below which was 3 tiny bumps. I received a swab and two blood tests which all came back negative/inconclusive and when I had my second outbreak on my neck I tested positive for HSV1.

I spoke to a physiotherapist last week who suggested I try acupuncture so I’m going to try that next week. Apparently they target the nerve that the virus lays dormant in. I figured it’s worth a try before jumping back on amitriptyline for another 3-6 months. Ive experienced such terrible withdrawal symptoms all week from the med so I’m feeling quite discouraged at the moment. 

I hope you’re both feeling better 

❤️ 

[BonBon]

@Ellie88it’s been awhile. So sorry you’re still dealing with it. Luckily my pain is pretty much gone with doing nothing. It kept putting the  viral ointment on for a few weeks. I don’t know if that helped or the sore just healed but the pain subsided slowly. Last week I got another small sore and it just burned. I put the ointment  on and it healed in a couple days. I just needed the sore to heal. I still feel a little itchy at times and some pressure but it’s very slight. I think it’s still not totally gone but my pain is almost non existent. I am so grateful. I think mine comes from stress. I have a bunch of stuff from stress. So I’m adding this to the list. 

I didn’t know you could get it on your neck. So the guy you were with had a cold sore and you got sores from that? 

I know people who have had acupuncture and helped  with all sorts of things. That really might work for a time so you don’t have to take the pills. It’s too bad the pills helped but you had such a bad withdrawal. That’s why I was reluctant to take pills for it. I’m wondering why if you had no sores before you still had pain. I was concerned that the pain was going to stay even after the sores were gone. But it seems when the sores healed the pain went away. I think I have a scare from one though. That was the one that gave me the most pain. I hope it’s not just dormant and it starts again but for now it’s ok. 
 

Please keep in touch and let us know how the acupuncture works. I hope it starts to go away completely for you. I understand how horrible it is. 

[Turtle]

Hello all, 

I have had nerve pain everywhere in my body for 3+ years now. I have tried everything, acupuncture, chiropractic, neurologists, naturopaths....all have cost me lots of money. I recently read the books by Dr. John Sarno about the mind/body connection to chronic pain. It all makes so much sense, especially since stress makes it worse and vacations or spending time with my kids or yoga and meditaion makes it go away. I have had a lot of trauma in my life as well as lots of stress...as we all have. Trauma can be big or small but the mind still processes it the same. My herpes diagnoses was the final straw I guess and to avoid all the emotions of that and past traumas, my brain decided to give me nerve pain to distract me from processing all the emotions I've suppressed. There seems to be a lot of science behind it and I've been working at if for over a week now and I have no pain generally with some minimal episodes that I can get under control pretty quick. 

I HIGHLY recommend looking into his book as well as the many other mind-body resources. Nichole Sachs has a great podcast and I believe a book as well. 

I feel very liberated now...not only physically, but emotionally from a lot of stuff! I so hate what the negative stigma of having this virus does to people! 

Peace. 

[BonBon]

@Turtlethat’s a lot of good information! I totally agree that a lot of it comes from stress. I honestly have a really good life. Not a lot of problems. Just normal things. Work, older parents issues, and now the virus stress. My issue is we have anxiety issues in my family and we don’t handle any kind of stress well. I can’t take to many things going on at one time. When my youngest was in high school I was busy with work, school activities etc. I was always rushing and had lots going on in my head at once. That caused my herpes to come out at times. It also caused me something called LPR. That’s stomach acid that goes in the throat and causes burning mouth. I have tried so many things to get rid of that. But as you said when you do calming things like vacation it all goes away. I do find that. When I was in the throws of herpes pain last year I went on vacation for 10 days and I barely noticed the pain. Also my LPR goes away. If I go out and have a nice evening it mostly goes away. That’s when I put it together that this all must be coming from stress or too much going on. Now with the limitations of going out my things are worse because I’m home more and concentrating on the pains more. I have tried to mediate everyday and that helps some. But paying attention to breathing through the day helps too. With the herpes pain when I’d focus on the pain it would intensify. So that is why pain intensity would vary through the day. Right now it is there very slightly. Mostly a little itchy and a little pressure but I barely notice it. I know it’s not totally dormant yet but I have really tried to not pay attention to it and I think that helps. But when the pain is intense it’s very hard not to pain attention. So now I’m trying to work in my LPR. I am going to look into the books and people you posted. I’d be very interested to learn more. So glad it helped you. I hope it keeps working for you! I think this stuff is very common but with the stigma a lot if people don’t talk about it 

[Turtle]

There is so much research into stress and the way our brains store it and process it. We can learn to rewire our brains and it really isn't that hard. I constantly am telling myself that my body is healthy and whole. I also "yell" at my brain to stop giving me the physical pain and that I want to feel the emotions behind all my experiences. I do this every day on my drive to and from work. I have actually accessed stuff and find myself crying in my car...and I'm not a big cry-er. I have always had to be the strong one who took care of everything. After these episodes, I amazingly feel so much better. I find that when I access abuse I have gone through, I get extremely nauseous, but then the anger comes.  It's weird but it's working. 

There are many youtube videos out there also that delve into the mind body connection. I hope you find something that resonates with you and can help! 

[Turtle]

The one main thing I have learned from all my research into the mind body connection is that our nerves are not damaged or being destroyed or inflamed. The brain is sending less oxygen there to make them hurt, just like it does to people who suffer more muscle pain in their backs or shoulders. The first step to feeling better is really believing that your nerves are fine, they are healthy and your brain is just using them to keep your attention on the physical so you don't have to deal with the mental stressors that it has deemed too dangerous for you to handle. But of course we can handle the stress and anxiety and past traumas and you should ask your brain to stop bypassing that. I know it sounds weird and woo woo. I am a science person first. John Sarno spends a lot of time explaining the neuroscience behind it all so that is what won me over. The mind is an amazing thing! This stupid virus has been around for thousands of years and is helpless and useless and does not deserve any attention...let it stay dormant forever. I visualize it being trapped and dying from lack of oxygen! 

hugs 

[BonBon]

@TurtleWow! I am really a believer in this! I always believed a lot of it is in the mind. I mean we do have the virus but our minds can control how we react to it. That is a good visual of it dying off from lack of oxygen. I have gotten into a habit of shallow breathing. Shallow breathing in itself causes anxiety because it makes your brain think something bad is happening. It’s like the fright or flight situation. The stomach also gets affected by all this too. I have gotten myself into bad habits. This bad bout of herpes came out last year when my daughter was getting married, and my husband was retiring. It was good things but a lot of life changes which I’m not good with. I haven’t been able to get my body to calm down since then. So my herpes got bad, and my LPR got bad. I just feel everything worse when I shallow breath and think too much. I also get it bad when I work. I work out of my house but when I get crazy busy it gets worse. And now I have a new thing. My teeth hurt. I had to get some dental work and I was nervous going to the dentist because of covid. So my jaw started getting tight and it’s hurting my teeth. I went and found out I have some periodontal issues. Nothing major just some things I need to do. But it stressed me so much my mouth hurts from thinking about it. With my LPR I keep thinking I have something physically wrong that’s causing it but I’ve had a bunch of things checked out and nothing is wrong. So I do believe if you can break the cycle you can reduce some of the pain. But right now, as I said, with covid  and being home so much it’s hard to reduce stress. I’m going to look into the things you suggested! Thanks so much and keep in touch in the post 

[Turtle]

Hi Bonbon, 

I"m a dental hygienist and so much dental pain and periodontal issues are also stress related, especially due to grinding. Try a night guard and warm compresses. Work on deeper breathing, that is what works so quickly for me.  Our mind is making all the stress we are exposed to into too much of a big deal of life and death when it is not.  I constantly tell myself that I am safe while deep breathing. I never believed it would work for me because I was too far gone, not worthy, etc. but it does!! Stress also makes our body chemistry more acidic which makes it easier for viruses to live, hence giving HSV an easier way to replicate and come out....don't let it! I have to have some minor hand surgery next month and I'm curious to see if I can keep it together haha and not get stressed. It's now becoming interesting experiments instead of overwhelming stress.  I also use the tapping method to change my stress levels also and it works pretty quickly too. I think I like it more than just straight meditating because it gives me movement to concentrate on. 

Keep on keeping on and remember that you are safe!