My long ongoing saga with G-HSV1 atypical symptoms, please come and listen, advice and help needed

[williteverstop]

Yeah i dont, i did try it for about a week to see if there would be any improvement, and it didnt help.

 

Im not a big caffeine drinker as coffee messes up my stomach. I do drink tea, but i tried cutting it out for about a month and it didnt seam to have an effect unfortunately.

 

Yeah im going to give that a shot, ive actually run out of sick time at work so its a bit harder to make appointments.

 

Yeah my foot pain is the worse most intense pain i get, almost like sciatica is how i would describe it.

 

 

Basically all the thinks i love are getting taken away. I used to love to hike and mountain bike. Too much movement causes me alot of discomfort so i cut way back on that. I love to drive my car which is a manual, and now even doing that for more then 30 mins gives me the horrible sciatic type leg pain....

 

this is so awesome.....

 

 

[whitedaisies]

I hear you....it took me a long time but I started finding pleasure in different things than I used to do. Like I used to be so super busy and I loved being someone who could push herself to do lots of different things.

 

Now instead of pushing myself I am takinn it slower and smelling the roses so to speak. I am travelling way more now on my own. I love that!!! Never did it before. It's fun to wander around new cities....

 

Went to Wilmington beach, North carolina which was lovely and Florida and Boston and Cape cod twice. Even went to Fenway park and watched a Red Sox game. I not a baseball fan but how can you go to Boston and not experience that!? So I make little short trips to change things up that are not too expensive. I appreciate that I can see new things.

 

I also made a bucket list. Don't know if you have one. Things I always wanted to do. And even with h I managed to cross lots off. I would suggest you make one so even when you are down, you can say hey at least I got to do this.

 

Some silly ones I had was skinny dip (lol yeah 41 and never did that lol pathetic), visit a american university (I ended up doing a tour of Harvard), travel, redecorate my kitchen, fly a kite....haven't done it in forever. Give it a try.

[2Legit2Quit]

Wow, if it's that bad, why not get on the nerve pain meds? Yes, I had a couple unpleasant symptoms on them, but I was able to resume my normal activities and go back to working out.

 

I get what you're saying though, because I'm taking a big trip to do lots if hiking in the national parks next yr and I am very nervous how it will impact me. Will my chronic fatigue be triggered again. Am I going to chafe to where I can't walk... Very frustrating. Never chafed until H.

[mp9999]

hey williteverstop, i am feeling the exact same way. super pissed who someone can walk into your life and change things forever. i've been at about 3 months right now. end of my dick is still red, purple patches, and i have a patch of red skin on my leg now too. all of which haven't seemed to go anywhere... seems like the new norm. feel itchy and tingly lots now too. if things went back to looking like they always have before except for outbreaks, i think it would help a lot mentally. but things aren't changing.. yet. i've been on this site lots, and talking to people lots about it. i don't feel ashamed or nothing like that, I'm just really disappointed. we all know things can always be worse. that being said i spend a lot my time sleeping these days ! thinking there will be outbreaks in the future is strange to think about too. anyways i read that hsv1 wasn't supposed to be that bad and that lots of people have it. seems to be worse then what i imagined

[williteverstop]

hey williteverstop, i am feeling the exact same way. super pissed who someone can walk into your life and change things forever. i've been at about 3 months right now. end of my dick is still red, purple patches, and i have a patch of red skin on my leg now too. all of which haven't seemed to go anywhere... seems like the new norm. feel itchy and tingly lots now too. if things went back to looking like they always have before except for outbreaks, i think it would help a lot mentally. but things aren't changing.. yet. i've been on this site lots, and talking to people lots about it. i don't feel ashamed or nothing like that, I'm just really disappointed. we all know things can always be worse. that being said i spend a lot my time sleeping these days ! thinking there will be outbreaks in the future is strange to think about too. anyways i read that hsv1 wasn't supposed to be that bad and that lots of people have it. seems to be worse then what i imagined

 

I'm sorry man. There seems to be more and more of us popping up with atypical GHSV1 issues. Feel free to message me so we can talk. Hopefully we can work together to find things that might help with the issues we are dealing with.

 

[VeryConfused5534]

Hello, new to the thread but was seeking help. I too have been to more doctors than I can count, and nothing has been found. After 2 years of going without sex, I hooked up with a friend over a weekend. 1 week later I started having pain, 3 weeks later I woke up with a fever and red and purple splotches all over the head of the penis (The redness extends onto the shaft a little as well). The sick feeling went away after 5 days, but the splotchy, mildly burning penis head has stuck around for 8 months. One day I had a white head right on the edge of the urethra, it had no pain or anything and resembled an ingrown hair, not blister (Needless to say I could not get to the doctor as I was on vacation). Anyhow, I have been prescribed countless steroid creams, anti-fungals, and even an anti-bacterial. My friend was tested for HSV via IGG and tested negative after the encounter. I have tested negative for all STD's, and negative for herpes via IGG at 1, 3, 4.5, and 6months (HerpesSelect I believe). All the doctors tell me is that I have "Balanitis", yet they cannot find a cause. I can't ignore the fact that this all came after sex with a new partner, and that it seems to align itself most closely with herpes. Yet the closest thing I had to blister was irregular and pinpoint small, yet the rash won't go away for 8 months. Does anyone here have any suggestions? This is literally killing my wallet, and killing my life.

 

I also wanted to add that I have an autoimmune disorder known as vitiligo, although it hasn't caused me any pain or changes in over 10 years. Also, the rash never goes away but feels much better and looks much better in the evening after I lay down for awhile.

[Leanne27]

You'v e been tested and tested and herpes hasn't been identified, so I think I would trust what the Dr's are telling you.

[fonda]

I have read everything in the thread. williteverstop, are you doing better now? My outbreak was 5 weeks ago on the scrotum and lesions on penis healed in 10 days, I have similar symptoms where my genitals burn/itch/irritate sporadically. It is sometimes all red down there when it burns and I have to urinate frequently and cannot hold it in too long. My penis glan also is spotty with red marks during certain times as well. I cannot get a full erection anymore but I am not horny anyways because of the Herpes. Thank you for sharing your stories everyone, I now have kind of a picture on the possible long road ahead for me. I am waiting to confirm if it is HSV1 or 2 with a IGG test because the IGM test was positive for both of them (done at 4 weeks after exposure). Should I keep on taking 1G of Valtrex twice a day until I feel completely normal? Thank you guys for your inputs.