[Does it ever get better]

How are you doing now

[Burning and inflammation after outbreak is gone]

Burning itching stinging crawling numb every minute for 30 months  now no relief.. sometimes gets very emotional. Lost a very close person over this .

[Was dumped by potential love interest after giving him ghsv1, and struggling to get over him and wonder what could’ve been]

Much love for you...virtual hig

[Herpes is ruining my life]

So how are you doing now 

[Fibro and herpes]

On 9/7/2019 at 8:57 AM, Justina said:

Does anyone have experience with both fibromyalgia and herpes?

and... herpes is now in a NEW location for me. Has anyone had it spread to a different location and kinda have the similar symptoms to the first one being as painful?

I've had hsv1 since I was 16, I’m 33 now and my outbreaks have always been mild and almost never occurred. But now lately I believe from the Fibro and all the stress I’ve had them more frequently and now a new location.

Me - had fibro or chronic fatigue in 30s for 3 years.. slowly came out of it but always got flare ups. DR said they dont believe in it. Now at 56 and got HSV in 2017.  

Itches burns tingles stings crawls on almost every facial nerve every minute of every day.  DR is zero help.

My IGG is negative 3 times. Can't do western blot in Canada.

Lost a relationship because I backed away as it was heating up . I love her so much that I want the best for her. 

She doesn't know I was assaulted when drunk women kissed me when she fell on me. 

I used to write love poems..  last poem I wrote was " my new found friend - loneliness"   

My lips feel like footballs and bugs crawling under face as it itches as we speak..its every minute for now 30 months.

I can't even tell what emotions are based in reality or " wonder " in terms of what ever is going on.

I feel like something is living inside me.

Even eyes have crawling sense 

 

 

[No sores, constant irritation for 2 months]

On 12/24/2018 at 6:15 PM, blurneworder said:

I’ve had the same problems and continue to have them and more.

Any and all tests come back negative for me.

Me as well ..daily for 30 months 

[2 years of constant herpes outbreaks please help]

On 9/6/2019 at 3:04 PM, TreeHugger44 said:

Hi everyone. 35 year old Female and I have GHSV as diagnosed by my doctor even though all my IgG tests are always negative. We are both convinced it is herpes as is another doctor but my lesions don’t have a lot of fluid to swab and I am scared to go off antivirals at this time to test accurately. 

Anyway, I kept thinking it would get better and it doesn’t. I am having an outbreak so painful now I want to scream. I have been taking Valtrex 1gm daily for 5 months with zero relief and sometimes I take 2 1gm pills a day during an OB. I do think it has helped decrease the severity of outbreaks (bumps are smaller and less blister like but still lots of then all over my bump and sometimes thighs or public hair line) but not frequency. 

Anyway, is it normal to have outbreaks basically every week?? Like I had one early August which I thought was finishing up only to get worse Aug 12. That cleared up and led to another one Aug 24, and now Sept 6 I having a horrendous one. What do I do?? Try switching to a different med? Is my herpes resistant?? I am a single mom so how will I ever date again?? It feels like disclosure is a non issue when you don’t even have 2 symptom free and or bump free days to have intimacy. That would scare someone off for sure. To top things off I get tons of itching and burning in my nostrils and chin too and a sore throat to boot. Like I can’t live like this, it’s intolerable. 

Anyway just looking for suggestions and support, thank you so much!!

Very similar here...

[Herpes is destroying my body and now my life is done...Thanks for reading!!!]

On 8/11/2019 at 7:53 PM, anonymousone said:

I contracted H about 5 years ago through a series of events as part of a downward spiral of my life. H was the final bow on a life that went from reasonably successful to an utter disaster. (No illegal things involved)

Just to provide some quick background info:

• H altered my body chemistry -I had strong body chemistry as a child. (I started using deodorant at 6yo) I was able to finally get it under full control in my college years through a change in diet, staying clean shaven, using an occasional hospital grade wash, and a prescription strength deodorant at night when the weather got over 70 degrees. Since I contracted H none of these things work. My underarms are still fine. The connective area between my crotch and my genitals smells terrible no matter what I do. I have always been sensitive to smell so this has taken a toll on me to the point where I hate myself.

 

• H altered my genital and my ability to lubricate before sex -My genitalia NEVER feels normal as in cool and comfy (as it did pre-H). It always feel low-grade inflamed or sticky (I'm very sensitive). I use DMSO liquid to kill the low-grade sensations. However, I can't wear certain fabrics anymore. I was also a faucet during sex prior to this and now I'm closer to a desert. I have had sex since my diagnosis, as an FYI, but I gave up sex completely a few years ago. I no longer enjoy it.

 

• In the past 2 years, H was transferred to my eye and now my entire face  -I dont really have strong symptoms so its always been hard to tell when I have an active outbreak. I dont want to get into ALL the details but the spreading all over my face is as a result of skin needling. My outer eyelids burn like hell. The doctor cant see anything in my retina or cornea. Despite how many times I've gone to the Dr. I believe its under my eye and in the corner (the pink parts). My under eye area gets very puffy and asymmetric. The Dr's won't confirm H as my eye diagnosis but it responds to an onslaught of antivirals so I've labeled it as duck because it walks and quacks like one. There were doctors that I had to beg for antivirals to treat it. Now I started lying just so that I am able to keep a full prescription on hand when I need it.

 

• In the past 2 months the herpes bumps stay on my face all the time. They are not patchy red blisters but little fine skin colored pimples on my cheeks. Noone would probably know if they saw it. I have seen a couple of physicians for other ailments and none of them ever questioned my face. (Just so you know.) The reason I know its herpes is because it itches like hell just like the patch on my inner thy and has the same unassuming characteristics. Drs are always skeptical when I tell them its herpes because they are used to seeing red splotchy pus filled bumps and mine have never looked anything like this. Its been a nightmare trying to get proper treatment from health professionals!!

 

• I've always gotten compliments on how young I look despite being over 40's. I always got carded while out with younger friends who didnt get carded. I used to get dermatologic skin treatments on my face because my skin has been acne prone since my teens but now those treatments irritate my face. My face looks gross now and when I smile it has developed light lumpy folds due to the uneven texture of my skin. I splash DMSO on my face to stop the itch and I feel like it may be damaging my skin because it sometimes burns like hell (I rinse it off when it does).

 

• I started sleeping with socks on my hands in case I itch something at night without knowing it. I also use material as a barrier to itch myself during the day then wash my hands frequently because I am paranoid about spreading it any further. However, despite me being careful. A small itchy bump is popping up in random places. Like my wrist, arm, neck, the back of my hand, my breast, etc. I mix lysine and lemon juice which sometimes soothes the skin and the itch but the bumps on my face still dont go away. Most other areas do.ything

 

• I never had to worry about my diet before it spread all over. I cycle between pescatarian, vegan and vegetarian. But now that it has spread I am hypersensitive to everything. Any trace of arginine, chocolate or sugars (artificial or natural) sends my face into a tizzy! This level of restriction is too much especially when considering other areas of my life suck.

 

I was depressed before H and it got much worst after H. Now forget it! I lost all of my friends except one. I haven't worked in over 2 years. (I'm not here to discuss my depression. I am in treatment and it hasn't helped! This is just background info for my post. Please stick to the topic of H.) As a result of all of this, I dont think I will ever marry.

I fear touching people as I dont want to spread it to anyone. I have told previous partners about H before it spread allover and it wasnt a big deal to anyone except for one idiot that got dumped with the quickness. But now that its everywhere, who would ever want to deal with someone who's a walking herpes disaster?? I wouldn't!!!

I also don't feel like I will be able to have children as I fear passing it to them in the process of normal daily care. All I picture is myself wearing elbow length gloves and putting mittens on the kids so they dont accidentally touch me. 

I come from a background of trauma. I have been on my own since mid teens. My only wish EVER was to have a loving family (husband, etc.). And now that I'm in my 40s with all of these problems I know that will never happen. That was my only reason for surviving since my teenage years.

I've tried to look to see if theres any kind of plastic surgery (lower bleph) or skin treatment (peels, etc.) but since my outbreaks dont seem to go away on my face I don't think I'm a candidate.

At this point, I've given up on life! Wouldn't you??

------------------------------------

Please dont offer any empty platitudes. I'm sure you mean well but It won't help. No offense to you. I posted this on the off chance that someone had any experience with a rare case as severe as mine. Anyway, I doubt this will get much response especially with the preceding line I just typed, however I just thought I'd give it a shot in case anyone had any info that could help. Thanks!

 

P.S. - For those who have H and are trying to adapt. Be thankful because it could be a lot worse! I'm sure there's no one here that would want to be in my shoes. 

I'm 56 and daily itch pain crawl and more over entire face. Every second for 2 yrs. Finally I am dealing with a Dr. But naturalpath that has had successes with ocular herpes and progressive face herpes. I talked with a professor of Nat path last yr that was one of her professors. He was awful and she is wonderful. She also has herpes. I only say this because after having all dermatologists reject referrals 6 and the Nuero saying buy a bike enjoy life with community sex health dr saying its dermatitis and IGG being neg . Yet symptoms say otherwise . Can't do westen blot in Canada.

Nat path says she has had.successes. I am following the protocol but only 4 or so weeks in..she is changing my bio film and immune system. 

Finally I have hope. Maybe wont be perfect but improving would be good

.

Also may consider a nutritionist that has 4 autoimmune issues of her own tackled. So may try incorporating diet. But need to find right person not just right profession 

 

Be well...much love 

 

[What're your triggers for herpes outbreaks?]

On 11/22/2019 at 7:44 AM, Clarity said:

The only thing I’ve identified is stress. The kind when you can feel the cortisol pumping through your body, your heart is racing, your hands are shaking, your mind is laser focused on that one thing that really pushed you over the edge. 

I like coffee and work shifts so coffee helps ..some coffee types right away

[Burning and tingling long after initial outbreak]

3 tests IGG all negative .No obvious ob but pressure and all itching burning crawling tingling stinging. DR refused to test 3 times and finally after 3 visits agreed and it was neg. I went to other Dr for 2 subsequent IGG .even up to 9 mos. All neg.. My Dr is also the community public sex Dr. .I said its hsv ( kissed by drunk lady slobbered  actually) then 36 hrs. Tingles Severe headache nausea and intense fatigue all for 4 weeks.  

Burning tingling crawling itching stinging sense of leaking wetness along many nerves in face and top lip. Even feel tingling crawling nside eyes at times . 

They sent me to MS clinic  MRI took 18 months - follow up this Jan at 30 months.

Saliva burns at times. Often.  

Skin is tight and numb esp after shaving. 

Total nightmare as it burns itches stings crawl along entire trangemenial nerves. At 30 months of daily it's now about 70% of initial pain.

Dr will not prescribe antiviral as she says its prob not HSV and if it is everyone has it. Drugs are more dangerous to kidneys?

This has affected All of me.. was learning guitar -stopped. Worked out 4 times a week for life Havent Been in gym in 2 years. 

Really impacted my relationship choices...I backed way way off turned cold . Used to love touching and kissing..I will never risk it. DR SAID to risk it. Dont need to divulge since she says I dont have it as IGG is neg...

I had fibromyalgia in my 30s..I go into a flare at times. My glands ache all over for months but I was good and healthy for 7years prior to kiss..

I became ultra depressed and suicidal bc I was in love and I backed way out of relationship..

I still suffer the emotional.loss along with pain. Even feels like tingling hives under lips . 

All Dr I speak with are not concerned.  

Neurologist said buy a bike enjoy life.

Anyway...its been since Sept 30 2017 when a drunk lady fell on me and I stopped her fall and she slobbered all over my lips. 

Big joke. It was assault in my eyes.

Lost amazing person and my passion.

No more poetry writing   no guitar no working out..totally obsessed with getting a dr to listen.

 

Can't do Westen Blot in Toronto. Thinking of flying to Univ of Washington. No idea how to proceed to getting Westrn Blot. 

Called Univ of Wash. Then contacted multiple labs to see if they will do testing and ship. No not without original kit which cannot be sent across the border ..I did get a Dr request. But can't get kit . 

Even still that will give me a starting point after 30 months daily.

Oh and every Dr even Nuero will say these symptoms are impossible to be HSV 

So no buy in from them

I have a.Naturalpath who deals with HSV on board.. lots of lysine MitchCondroita licorice Cod liver oil vit c....after 6 weeks. Minor change.

Coffee makes it all worse. I drink 4 to 6 coffee a day.

 

That's it 

[Getting herpes late in life]

I was 55 ..now 57....i have PHN symptoms every second of every day for 25 months...I lost the love of my heart and in that my heart has finally gone numb..I am not who I was ...Fun loving kind energetic.....stopped the gym stopped guitar and stopped writing poems..   i play hockey just to push through..I am in pain and fatigue constantly.....Coffee and shaving make it worse...I have to shave...

[Is anyone else sick all the time?]

After being kissed ..wet french kiss ..by a drunk woman in a bar that fell on me in my chair...I was drinking water and had just stopped to see friends for 5 mins...she lathered my face....yuk....

Got the tingles in lips, then stinging and pressure but nothing actually broke out..it pressured up then slowly subsided over a week...but at the same time ...

Severe headache and fatigue for 5 weeks, extreme nausea in abdomin for 6 weeks...and contant burning itching crawling tingling now throughout entire face which itches or burns daily for now 25 months...Dr says it wont kill me and that its mostly a mental thing....

No medication offerred...no other Dr..can be sought due to Canadian medical rules.......unless i ditch this Dr....i dunno anymore.

 

I lost the love of my life and my heart went numb 

[For anyone with constant daily irritation and itching]

Could i have this from.a kiss....i too have tested negative with type specific IGG . I cannot do a western blot in Canada....I have almost given up.....my nerves crawl tingle burn itch sting all along the trigenmenial nerves and all along top of lip ..daily....no outbreaks but raided blemishes that dont break...pressure 

[For anyone with constant daily irritation and itching]

Yes daily on my face for 25 months now

[Does it ever get better]

I have constant nerve pain around my face daily for 25 months.....every second ....burn itch sting numb wet tight sore...constant never ending pain....  From a french kiss by a drunk woman I didnt know who sat on me at a bar...and smothered my face in her wet sloppy kiss...

I was physically ill for 6 weeks....fatigue headache neck pain nausea...and face pain which has continued to creep.....Herpes is Greek for creep......

So so so depressing....Dr will do nothing for me except tell me I wont die

But I am already dead...

Saliva burns too 

[Someone died relating to this sad story of mine]

Ive had prodrome for 16 months test neg. After assault.( kiss) ...and lost a partner because i need to protect her...im am devastated ..and in pain every single day for 16 months......never stops somewhere