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Anyone....words of encouragement....please

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Well, today I am on a downer...actually was doing pretty well this morning and then this afternoon started with nausea and nerve pain in my neck and head and inside my mouth....also, still have the vaginal burning and leg pain. I am just exhausted about the pain. I have handled the emotional part of diagnosis....done....handled the getting on with life with herpes....ok, just started but progressing well.....why won't this nerve pain go away?


I just want to cry and sob and I know I shouldn't feel sorry for myself, but I just can't take the pain anymore. I can't see an infectious disease specialist because my two doctors think the pain is in my head and from stress and isn't real. I can assure you, this pain is real...and yes, maybe it's made worse by stress. I just want it to go away for a week, a month, so I can feel normal again....Good thing is I never get sores that really hurt, they just itch for like an hour and then its done...I guess I am lucky that way, but I would trade it for horrible sores that come and then go for long periods of time!


I feel dejected because no one can do anything for me and antivirals only lessen the burning, but don't take away any pain or pimples or nerve pain....and there are no new drugs that are close to being on the market and no cures in sight, if at all. I just want to weep!


I just can't believe it's manifested this bad in me; and I really feel sorry for myself; I finally know what I want out of life or am starting to know and I am stuck because the pain is sometimes horrific and I can't even think about a relationship, I am scared to touch anyone because I don't know what's just nerve damage pain or prodome or what?


I am scared, as every month, it infects a new part or strikes a new nerve and all I hear is, no herpes can't do that and I just feel stuck. I cannot imagine this. I am scared that it will affect my organs. I just feel helpless today.


I was hoping some of you out there, anyone, can lend any words of encouragement, really anything....I just can't imagine living my life like this all the time fearing human touch, in constant nerve pain....and on top of that, being contagious. I just don't know what to do anymore.


Please help!

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Screw what your two doctors think - have you been tested for anything other than H? All over nerve pain can be a whole lot of other things. I'd go see a Neurologist if it's all nerve pain ... or an infectious disease specialist at least ... get tested for Vit B deficiency, MS, Diabetes, etc. Anything that can cause all over nerve pain. if they find nothing, maybe anti-depressants are worth a try ... I'm not crazy about them but I used them for 6 months once when I just needed to get my head screwed back on straight. And if it *is* in your head, the anti-depressants and maybe anxiety meds for a few months may help your brain to chill out and get out of the cycle.


Sorry you are having a bad day..



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Well I have been on antidepressants since May, no change in symptoms, in fact, I have gotten worse.


Went to neurologist, told her about herpes, said no, can't happen, doing an MRI this week-end to see if its MS (looking for lesions in the brain)....I suspect will come back with nothing.


Checked B12, fine.


Diabetes, don't know yet....I will look at blood test, maybe they missed that one.


Am I really hoping to have some other horrible illness? I already got herpes, can I imagine something else?!? Wondered also if it was herpes and shingles but I have had chicken pox as a child and so any blood test is meaningless, already have antibodies....no typical sores for shingles to test for so I will never know.


I feel like this is just a bad dream and I am going to wake up and have my old life back. OK, it wasn't the greatest, but I had my health, I had my kids, I was oblivious to my wants and desires and needs but I think I would trade it at this point to be emotionallymiserable and have no pain.


And what hurts the most is I know this sounds weird, but I just want to lie naked beside a man who truly loves me in bed and he just holds me and says everything is going to be ok. But I don't have that and this is the time I need it the most. I was always strong for myself and everyone adn now I need someone to be strong for me. It's my turn!

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There are antidepressants that also help with body pain - you may need to try a different one ....


I wouldn't wish it on you to have something else but having an answer is better than dealing with something that doesn't seem to want to end. Best to just make sure that all the other avenues are covered.


And I hear you on wanting someone to hold you. But maybe this is going to be when you find out just how strong you are ... which will put you in a healthier place when someone DOES come along. AND, you never know who will come around the corner tomorrow. I see people on here all the time who had given up - are in the same place you are now, who suddenly meet someone and it all changes almost overnight.


So don't give up hope. Stay strong. (((HUGS))) friend :)

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Yes, I am on Zoloft which is supposed to help with body pain. Doctor upped my dose today to see if anything will improve. I am hopeful, but realistically don't expect anything. I am doing therapy...eating better....I am exploring all the other avenues, but I just keep getting roadblocked. I am being persistent, but in the end, I have little control whether a doctor believes me or not.


My psychiatrist is really cute, so maybe it will be him around the corner.....LOL....actually through this whole process, I really managed to get really cute doctors, really weird!!!! At least it made the poking adn proding a little enjoyable....HA!!!!


Thanks Dancer. I am trying my best....hard too, have 3 kiddies home for the summer, they are still young and they want mommy to bring htem here and there and don't understand why I am sick and I am doing more with them but some days I just want to sleep and stay in bed.


Ah well, today's a bad day, hopefully tomorrow will be better. Helps to vent on here thanks for being there. I like coming to this site, I found out or my therapist helped me find out that I really enjoy learning about people and figuring them out, what makes them tick, why they do what they do. Met some men in my life (that want sex, yes), but that I also find really fascinating. Discovering things about them (not having sex yet...or at all for that matter) but through conversation and discussion I am finding really fun right now. And I am writing lots about sex, maybe it will be a romance novel....got one of the guys to read it..he liked it.....so to speak....LOL... maybe I found my true calling.....at least I can laugh about it....now! Tomorrow I will cry about it...UGH! Needed 2 therapy sessions this week, only got 1!!!!!

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Ok - I'm not a Dr but I'm not sure that Zoloft is the right drug for pain ... my ex hubby was on that and I have to say he had a bad reaction to it (he started stuttering and sometimes loses his ability to talk ... a very rare but not unknown side effect) so I'm not a fan of it anyway. If it doesn't work, I'd switch ... this article talks about post-herpatic pain from Shingles, including the anti-depressants they recommend for it.




Sometimes it takes a really big kick to the system to get us to start to learn about US .... and care for US ...


And I'm with you ... too bad I'm so old (I am NOT going back to College AGAIN) or I'd go into psychology too ... people FASCINATE me ... but I think that school would not have helped me to see people the way I do now .... that we are all human beings, being human.... that we are ALL F*cked up.... and it's ok ... because we are all beautiful in our f*cked-up sorta way....LOL


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Thanks for the article, I will bring it to my next appointment. I have noticed I have random twitching to mouth, tongue, nose, fingers, legs, involuntary and it happened around the same time he upped my dose, he says it isn't a side effect. I don't know if its a side effect or the post herpetic neuralgia from herpes or shingles or what?!


I definitely love noticing the humanity in people, their f*ck ups, so to speak, I spent my whole life trying to be perfect, no mistakes, but in the process of making no mistakes, that was my mistake....LOL....if that makes any sense. Anyway, I am embracing my humanity and others around me. Really cool thing I learned as a child of abuse (minor incident with a random stranger....really only included touching...so not that bad, but affected me emotionally nonetheless)....I found that people who tend to have a real trauma in their childhood....a big one that affects their innocence, they tend to become extreme overachievers.....that's what I did and that's what these men did. Just shows how sensitive the human psyche is and how your path can be soooo affected by your experiences.


Anyway, thanks Dancer for always responding. This morning not in much pain...maybe rest helped.



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I have tremors and involuntary twitching and I do have muscle cramps it's hard to tell if it's my herpes or post herpetic neuralgia or te Meds and I have explained to dr and he seems to think its stress. That's bullshit excuse me. I am stressed bc I have pain not the other way around. Anyway I will see if this increased dose does anything and then I will ask we start switching me at te next appt.


I hate Meds. I have never taken any my whole life but I have to now and I just can't seem to find the right ones. Dr asked me when I plan on going back to work and I said when u and my other drs can figure out what Meds will work so I can function. U damn idiot!!!


Ahhh anger. It's good sometimes.

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hi whitedaisies. i am so sorry to hear about your troubles and frustrations. i have just been reading back through some of your posts and our situations sound strangely similar. i have not yet gotten a positive diagnosis and still cannot confirm if i am h+, however i am dealing with this same nonsense with doctors etc. i am now on my 7th week of nerve blockers (gabapentin) am now at 1200 mg a day because my 7th doctor in 5 months, a neurologist, wanted to "give this medication a try" since there is no indication of anything else. we did an MRI too which was "inconclusive" and not covered by insurance i might add. :( sure doesn't sound like the anti depressants are a good alternative either per your account. I'm sorry is all i can say to your discouragement.


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Thank you for responding...helps to know there is someone out there with similar issues. Can I ask,...why do you think its herpes? What gave you that indication if you can't confirm you are h+...just curious, because I had such a horrific time getting diagnosed...wondering if you had the same and why they are leaning towards herpes.


THanks for your post! Any little bit helps!




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hi!! so here goes...

no sex in my life for four years (yikes) at almost 40. had one STUPID hook up which was with a condom most of the time on feb 14 this year. ever since then...and almost constantly, i have had really crazy symptoms. the day after this hook up, i lost my voice and got a cough. not typical for hsv but suspicious. i was put onto antibiotics four days later for a sinus infection. about three weeks later, i began having some burning/irritation in my genitals. went to obgyn and was screened for "all" std's with blood work and cultures and was diagnosed as having a UTI. no typical UTI symptoms, but was treated nevertheless. at this point, the symptoms just continued. primarily burning skin feeling in my buttocks. there were never any blisters, rash, nothing that pops up when you search for what the symptoms would be. the burning was primarily around my anus and all over butt cheeks and it felt to me that it was my skin. CONSTANT. typically all day and night. so it began...OB said i was fine and he referred me to dermatologist. first derm says nothing going on, nothing visible and he couldn't help. gave me steroid cream and said stop using soaps. went to GP who did first HSV test (9 weeks after sex) which came out negative. he gave another type of cream and suggested a different derm who said same thing as first derm. gave another type of cream. grrrrrrrrrr. like you, i was upside down in the mirror every day...5 + times a day. occasional "pimples" on butt cheeks but were there and gone within a day. finally there was a bump and i called the derm and was able to get right in that morning so she could check it. she looked and said it was just a pimple of sorts likely from my workout pants. we are now at 15 weeks so she sent me to get blood work again for hsv test and it was again negative. so now here is my status...SUPER sensitive butt area. just feels tender all the time. anytime i sit with pants on and a crease is created by my pants or underwear it just feels extra irritated. my butt hole is another story...still very irritated and burning. ALL THE TIME! so back to GP who now refers me to neurologist. she does all kinds of tests for my nerves which come back normal. tells me to stop lifting heavy weights etc and starts me on nerve blocker pills and sends me to MRI. follow up ordered in one month. during this month, i again get a pimple thing and rush in to planned parenthood (since they are the said experts on this stuff). she does yet another exam, tells me there is NO indication of hsv but informs me that i have hemorrhoids (news to me!). she doesn't do any culture of the pimple and doesn't order a test but is very reassuring that it is not hsv. in the meantime, back to the neurologist who suggests i have had shingles with no rash, the MRI is inconclusive, i am upped dose of the pills and this is where we are today. i am two days past the 5 month mark, waiting patiently (or not) for the six month mark to test again.


such bull s*#t. i am SO over this all. like you have said, i feel like all the doctors think i am crazy. whenever i google my symptoms, there is no other answer and the timing is just too ironic. i can not imagine what else could be the answer. i have NEVER had any of these symptoms a day before in my life. i am athletic, healthy, eat well and now have a constantly burning butt. what gives??? so when i read your posts, i just can't help but think the stories are far too similar. aside from it being irritating physically, it makes me snappy with my child, and i just am pissy. i HATE this.

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@chrymar and@Whitedaisies


From what I can understand, "Rashless Shingles" is not uncommon but typically presents as one sided pain usually wrapping around the side of the body and it will typically respond to anti-virals - at least enough to let you know you are on the right track.....

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  • 1 month later...

Omg... Reading both white daisies and chrymar's posts.... I am in the same boat! The only diff is I got a positive hsv2 result which I just got a WB to confirm since it was still considered low positive. I have no lesion or sores on outside and outbreak on the inside (cervix) ... Been checked out by 7 doctors with 10 visits in the 5 weeks all the nightmare started.

Only my left leg burns/numbs/ tingles and especially noticeable at night when I am in bed... The burning is also in the vagina area but only on left side. My left butt cheek is sensitive and in a bit pain at times... Lower back tail bone feels sore and burning!!!

I thought these are prodome but never accompany with actual outbreak. I feel this almost everyday for. 5 weeks in addition to now a BV and yeast infection!

So this is also interesting that I am 39 so close to both of your age ( not sure if this is the mid life crisis calling?) .

So I am actually going to make an appt with the neuro this week as the burning/ tingling/numb left leg is pretty annoying at night that I have to keep changing position to relief the sensitivity. Maybe this is rash less shingles? If I go back to my infectious disease doc (she is also my primary) she may think its in my head as she already suggested I go to a therapist. I visited her 3 times in less than 1.5 weeks bc I thought I was having a outbreak and she also know my other many visits to other doctors. I know this is not in my head and also my groin area burns too.... But the only thing I don't think its linked to herpes is the fact of 5 weeks! I mean normal outbreaks at least get a few weeks off right?! Anyways... I am sorry about ur pains but glad to know I am not the only one!

Once I get an appt with neuro, I will let u guys know what the doc says .... Hope to find some sort of relief soon for this issue!

God bless, S

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So I am actually going to make an appt with the neuro this week as the burning/ tingling/numb left leg


That's a good idea, because it *could* be a pinched/compressed nerve. I get clients all the time with these symptoms and it's usually either the sciatic nerve (aka Sciatica if it goes down the back/side of the leg) or the Femoral Nerve (aka Meralgia paraesthetica if it goes down the front of the thigh/leg)

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