whitedaisies

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! :)

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.

I know. That's what I told him. These doctors are so black and white. It drives me crazy. I am going to try to increase te dose. He only did it by a bit and see what happens. Thx

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. :)

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!!!!!

Ignorance is bliss in this case....LOL

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!

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!

No, blood tests cannot tell you where you have herpes. Only a swab can do that. So the doctor and your friend are mistaken. Blood tests tell you you have herpes and what type it is but not where it is on your body. Tell your friend unless he has a genital outbreak or a positive swab, he can assume he just has hsv1 orally, what an injustice, this poor guy thinking he has genital herpes all these years.....ridiculous!

Well, yes, its too difficult now for you to let go; I had a hard time too, I only started experiencing real growth in month 6. I was an overachiever, controlled everything in my life, every outcome was predictable, every challenge I conquered and won. Not this one adn I have it bad too, not with eth sepsis but I have disseminated herpes so I'd say we are pretty close. The key for me was a good therapist and letting go of how I got it (it was a doosey trust me); I fought tooth and nail too. At first I was choosing suicide (never would have done it but I obsessively thought of it), then I chose not to die (which is not really living, it's just not dying) and now I am on the beginnning path of living....very beginning. I hate to say it but you know what's coming, I understand cultural differences and yes, it's an obstacle, but if she loves you, it will be an obstacle that becomes an inconvenience and not a roadblock. Sure, nobody wants herpes, let's be real, but it takes a really strong person to overcome that and that's who you want....especially if you are dealing with other health issues. You are in your 30s, I think, you are still very young, have lots of life to experience, I just started figuring things out in my 40s, if you do it now, you're ahead of the game. So I have an old flame that has come back in my life that wants to have sex and I was preherpes before with him and now I am struggling too whether I tell him or not. It's no fun, but you are ahead of the game with someone you already know, they know the you before herpes, they know you well, and that may make it easier to overcome this. Take a chance, talk to her, explain what happened, and you never know. That's what my therapist keeps telling me....I keep saying, well, if I do this then this will happen and she always says, "how do you know", it may or it may not, you can't predict an outcome that relies on another person's input. You can guess, you can hope, but you can't predict. I don't know if I am going to get back with my old flame either, but my circumstances are much different than yours. So I will say to you, you seem like a very intelligent man, noww think yourself into believing you are worth someone to love you because you are, we all are and you also have had so much contact with the scientists, etc. you are that much more knowledgeable that you can explain it to her...use simple terms....show your love for her and vulnerability. Women love men who can show their vulnerability wihtout being afraid of it. You can still be vulnerable without being a pu$$y (forgive my vulgarity). So what I am saying is, continue therapy, continue your appointments to help your symptoms, continue any pain meds they reocmmend, you will inch your way, minute by minute, hour by hour to being better off as a person.

Well I know this is hard to hear but be thankful suppressive therapy works for u. Meds don't seem to work for me and some other people too. So at least you know what works. This is quite common for outbreaks to happen closely after going off suppressive Meds. Dancer always has some good advice on how to relieve pain so I would search some of her comments. This too shall pass, u will o on ur Meds again and u learned to be diligent with ur appts and prescriptions. It's really not all that bad. I don't mean to my give sympathy but Meds don't help me and I would give my left arm for them to work!!!! So I know this post sucks and not what u want to hear but get try this outbreak as best u can am ensure u have lots of med refills on hand. Good luck It will pass

Good luck and let us know what happens!!!

You can get a blood test by type. In Canada, the national test doesn't do it by type, but u can pay trough a special lab. I don't know where u life but search the Internet. But blood tests u definitely can find out by type. How do h know it's herpes if swab came back negative? Get a score now of igg ELISA test or western blot and if negative do one at 4 months and then 6 to know for sure. Yes, you could hae had oral hsv1 if u have had cold sores or u could be symptomatic. Doctors tend to no doin blood but I would request type specific test. Sorry on phone got to go but dancer will answer soon I am sure

U are a thinker my friend. Like I am. I can tell. Ha I used my friend like dancer. Anyway I am/was a thinker. Being that type makes coping with an illness like this very difficult. I am very educate as well an neurotic etc. herpes is such an emotional virus and that's why u r struggling because ur strength has always been thinking. You got to feel ur way trough this one to heal. You have definitely been dealing with lots. Me too. But I tell u a secret.....let it go!!!!! Once I started letting go I coped better. I hate herpes don't get me wrong but I am stopping the incessant thinking and learning to feel my way through life. If I could do it u cando it. Again it's only been 3 months, forgive urself for getting herpes. Happens to the best of us. I am not judging just trying to help. I see alot of me in you. I am 3 months ahead of u....not so far off tht I can't relate. All the best to you!!!! I know u can get there!!! Let yourself.

OH and check out with your doctor too kidney and gall stones. My dad had similar pain to yours and turned out to be that....weird, I know. So you just never know, herpes is sneaky though but always best to explore other avenues as well.....

I see, that is interesting..... May be if you are under a lot of stress, but honestly, nothing surprises me with Herpes...it is a tricky virus that doesn't follow by the rules but definitely I would try meds if its getting worse. I hope they help you.

Hi Angelina. I would seriously consider getting a perscription for Valtrex. Go to the doctor as soon as you can. It's really hard for your body sometimes in the beginning, nothing wrong with helping it along. I had severe leg pain withe the first few months. Herpes does travel through the nerves, it is likely just prodome and not infecting your leg nerves, but what your feeling is normal for some people. My skin never hurt when I touch it, but I did have some freaky things going on. Go to your doctor, tell him/her your symptoms, and get on Valtrex. I think if I was on it sooner, I likely wouldn't have got as bad as I did. No need to panic but get on some meds for a while. Good luck.

Oops, I was told by my oral surgeon doctor that tongue issues can also be lack of vitamin B. Maybe get a blood test done to see if you have enough of that....just a thought.....a tidbit of info.

Well, I am in a pondering mood today which beats a depressed mood or angry one. Just thought I would put this out there..... I would suggest anyone who has been recently diagnosed with herpes and/or is in the first year (and anyone else for that matter), should really consider connecting with their artistic side through the healing process. Herpes, the testing, the diagnosis, the uncertainty, the research, the cure....all so much thinking and wondering and processing of information. In order to balance, I would sincerely recommend people connect with their artistic side through dance, music, singing, writing, painting, visual arts, sculpting, gardening, fashion design....something that frees you a bit....I found this is helping me immensely through the healing process. I never thought I was artistic at all, but I am learning, there is a side to me that is....and I like it. I am not an expert but I thought I would post to help someone out there....who is struggling. Discovering new sides of yourself, and allowing yourself to express not just through thoughts and words but through art can be really freeing. Wondered if anyone else felt this way. :)

I hear you....I don't want to tell you how many doctors I have been through....I feel like I'm 80 years old, scheduling my life around doctor's appointments. Anyway, its important to get a good one so I would see an oral surgeon or ENT doctor for best answers.

Well, I will say I am not an expert but I do have HSV1 orally and I get it inside my mouth. Oral HSV2 is rare especially reoccurring but it does happen. I would say stop brushing your tongue, you may be irritating it. Tastebuds at the back of your throat are large, they are for everyone, we just never notice them. As for other taste buds on the rest of your tongue, they can seem more distinguishable....hard to tell if it is from valtrex, oral hsv2 unless you get it swabbed. I wouldn't think it's from Valtrex however, likely hsv2 or stress on the body, could be thrush too. Unless you swab its hard to tell and I would see a doctor about it to get a professional opinion.

It is therapeutic to post your story. I suggest if you feel that way that you continue writing on your own; put all your thoughts and emotions down, it will help you. No one judges here....everyone got H through some sort of sexual activity. Don't be adverse to taking drugs just because they are drugs, if your body needs it because of constant painful outbreaks then take it...always tends to help emotionally when you are not feeling physical pain....just my opinion anyway. You will meet someone, you will have children. Dancer had 2 children even though she had/has herpes. Everything is still possible for you. It may take you a while to realize it, but all your hopes and dreams can still be achieved....yes, there is something now that is an emotional and physical obstacle, but it won't be for long. Search the site, read the success stories of people disclosing. Lots of hugs.

Wow! I really like this video...thanks Dancer.

Agreed, try Valtrex, drugs are good sometimes.

OK....deep breath.....and another....and another..... I am a good Catholic girl too and I good Catholiced myself out of living a life as a human being and not as a religious poster child. I was not extremely religious but followed the teachings, didn't attend mass, but you get where I was going. You have not strayed from God....don't be ridiculous. God made you human and part of humanity is experiencing sex and enjoying it and there is nothing wrong with that at all. I got H too, just as I started letting my guard down and doing things that I previously found were "questionable", but you know what?!?!?! I was living! Finally, I was living! Sounds like that is what you were doing too and there is nothing to be ashamed of....that's why we are here to live, experience, learn! Well, you got H....sucks!! You will have to figure out how to navigate your life path with it. But it is nothing to feel bad about or ashamed of. You were spiralling out of control because you had been controlled your whole life, that's exactly what happened to me adn I got H because of it too. So I totally relate. BUt instead of hating yoruself and hardening your heart, you need to love yoruself for it. Love yourself that you finally allowed yourself to live adn explore you. And you will explore more of you as you learn to deal with H. So grieve, cry, be mad, experience all the emotions....eventually you will find some sort of peace, it just takes time. Good luck