So close to just letting go...

[hereandnow]

I'm really nearing the end of my rope. I don't know what to do anymore. I've never felt this bad in my life, this completely and utterly depressed. I am talking to everyone, seeing the Dr, therapist, acupuncture, resting, eating healthy, getting chiro, stopped sugar, caffeine, yes ALL caffeine. Only have H-2, 4 months now.

 

My body feels like a prison. The dr says I just have canker sores, but I know in my heart what's really going on. My mouth feels like I have razor blades in it. New ulcers popping up, along with around the mouth. Craziest part is, everywhere else is nice and calm/normal now.The dr's just make this sound like a stupid rash, and it's like a burning slicing hell. I have moments of time where I get some relief, mostly when I am dreaming. Then I wake up 10 times a night and have reality come crashing back down. People are starting to ask what's wrong with me, why am I so drawn and skinny. I'm trying to eat calories and fat, whenever I can. I'm not skipping meals. I'm not going on a bachelor party next month because if I drink and don't sleep it explodes. I've never been this scared in my life, and I feel like I can't keep on like this. I can feel myself starting to push my giver away, because I can't imagine a "normal" life anymore. I know I resent her on some level, even though this can happen to anyone at any time. I could deal with this "down there". But I can't even kiss, share a drink, I'm terrified to shake hands with people. I hate god, the universe, whatever for letting this happen to me. I hate everyone else who doesn't know what I am going thru. Even my dogs are depressed. They just lie around with me while I cry. 2g of valtrex a day now for 3 weeks and I can just feel that if it weren't for that, I'd be on of those nightmare Google images. I'm utterly sensitive to my body, emotions, etc. I hate that we have to convince some MD to take a swab, yet I know they feel helpless too with so few options. I have EVERYTHING else going for me, and now it hurts to smile.

 

[serendipity515]

I know it's rough, but keep your chin up. If it really is just canker sores, try Zinc supplements and cold-eeze lozenges. They're high in zinc and always healed my canker sore pretty quickly.

 

I will also say that stress prevents your body from healing, so take some time to focus on the good in your life. Walk those loving dogs, practice meditating, and forgiving yourself. You're being awfully hard on yourself. There are millions of people just like you. I am a person just like you. It sucks to feel vulnerable and that stems from shame, but you have to reclaim your power over your body. That usually starts with a mindset change.

 

You're not a leper. You have a painful skin condition. It's uncomfortable, hard to heal, but it will not harm you any further. If you're genuinely concerned about handshaking, use hand sanitizer ;) I promise you'll be okay.

 

Also, consider taking Lysine supplements with your Valtrex to help with tissue health. Stay encouraged, friend!

 

[hereandnow]

@serendipity515, thanks so much for those kind words. the mood swings right now are just incredible. a few hours of doing ok, followed by a slide down the hole again. i think not sleeping/eating/depression is absolutely what's going on. i'm taking zinc/lysine/turmeric/b complex every day too. its probably a wonder things aren't much worse. i've only had 1 tiny sore on the outside of my mouth since this 2 weeks of internal ulcers, so maybe it is just canker sores. boy, i never thought i'd pray for those. thanks again and i'm so glad i found this site.

[MMissouri]

If they are inside your mouth, I'd lean towards them being canker sores also. There are quite a few topical things you can do to help them heal. (I think alum, peroxide, baking soda, coconut oil, honey, orajel etc are some things recommended. It wouldn't hurt to try some just to alleviate the pain)

 

It's hard to stay positive when you are hurting. I think that finding some relief will help you start to feel better overall. Serendipity covered everything else I could think of to say. (I'm just getting off work, and maybe I'll think of something else when my brain recharges lol)

 

Hang in there, it'll get better.

[lelani]

All I can say too is hang in there...it DOES get better! I was feeling the same way when I was first diagnosed and it felt like my body was at war with me. Right now you need to treat yourself like you have a good dose of the flu...take care of your body and take it a day at a time. And emotionally...what you think about expands...time to take control of your thoughts. I have been through this too...and worked really hard on changing my thoughts..and believe me, they changed my reality and my pain. Every time you think "my body is a prison" say 'my body is healing more and more every day" (and use this for every shitty thought ). It might sound crazy but you have more control over your healing and you will heal. Use all those tools you already are..you are on the right track...if anything Herpes gives you a health kick in the ass! And go to the party...just don't drink and make sure you rest up before hand and the following day. I don't drink anymore and don't miss it...I have had Herpes for about 4 years now and its become a small part of my life (sometimes annoying) instead of everything about it. How you are feeling is normal...and it will pass. Sending you lots of good thoughts x

 

 

 

 

 

 

 

[HotToddyNightMO]

Absolutely hang in there. I was diagnosed in January 14th, so this is new to me. But I delt with a mouth full of debilitating "canker sores". The initial outbreak is better now (they were so painful I had to get hydrocodone just to eat or drink ANYTHING) but I just discovered a new sore on my tongue yesterday... And I have a few places on my skin (arm neck and now I think face) that look like hives... But I know it's herpes. I started taking anti-virals two days ago. I'm restless, can't sleep. Basically I know I'm new to this but I just want you to know you're not alone.

 

 

[seeker]

Ok, im going to chime in here but am somewhat short on time.

@hereandnow and hottoddy, it does get better. I was diagnosed in august but believe it was a year before that I contracted GH2.

here are some things that helped me in the beginning:

A. finding this site,

B. finding a local meetup group and talking with a member on the phone and attending a few outings, nothing like being with people who share your issue and behave normally to make you realize you will get thru this.

3. disclosing to a friend, who having been thru cancer 2x and the chemo/radiation almost killing him/ giving him heart conditions that could literally kill him at any moment put it into perspective big time!

D. developing a morning ritual where I burn sage ( not the cooking type) and give thanks FOR BEING ALIVE! and also find at least 3 things to be grateful for, even if they are repeats. its herpes not HIV, not cancer, not ebola. your gonna live!

5. sometimes not giving a fuck, (there is a thread by dancer with a link to a blog about that) yes, one of my first good things post diagnosis was getting into a moment of NGAF and being in the mall and flirting my butt off with this beautiful 21 y/o girl at a kiosk. I had her blushing, stammering and everything. I knew there was no chance, hell im 50 this year, what would I have to talk to her about after the physical part? ( best damned 30 seconds of her day btw) but it did wonders for my ego and self esteem.

now as to the mouth sores, I get canker sores from too much vitamin C ( I live in florida, its in the air here, lol). IF it is herpes its not in its native habitat so given time it should get less and reoccur less.

as to handshaking, wash your hands. if you don't have sores on your hands no problem, if you do cover them, you would with a cut wouldn't you? our hands are very resilient when it comes to infectious agents. its not the handshake that gives you a flu its touching your eyes or mouth afterwards. if they went thru our hand skin ( which is very thick and has extra "wax" for a reason) we would all have every bug all the time.

[MMissouri]

@hottoddynightmo (Nice to see another Missouri person!), Why do you think that herpes is spreading to your arm, neck and face?

 

I think you might be having the paranoia effect of H- where if anything looks odd, tingles, itches, changes color, raises, makes a noise.. it's that dang virus taking over your body. Remember, in order to transfer it to other places, either it has to be mucous membrane OR you have to have some type of opening to let it in. (Cut or something of that nature).

[WCSDancer2010]

@hereandnow

 

Honey - canker sores are not herpes... now, the STRESS of herpes may be causing them to come up, but generally they are caused by diet, stress, some gastro-intestinal issues, medications, some foods (too much pineapple will set me off).

 

http://www.mayoclinic.org/diseases-conditions/canker-sore/basics/definition/con-20021262

 

http://www.mayoclinic.org/diseases-conditions/canker-sore/basics/causes/con-20021262

 

You won't want to use Alum for canker sores but rinsing with salt water and eating a really GOOD quality yogurt (you want one with a LOT of the good probiotic cultures to restore the balance in the mouth ... I get a locally produced one that isn't over processed). Peroxide (swish) , baking soda (1 tbsp in a cup of water - swish with it) , coconut oil are all also good.

 

Believe me, I KNOW they suck (I had a HUGE one on my wedding day) but they are not herpes ... if your Dr isn't trying to help you to find out your cause (look at the Mayo article - you may figure it out yourself) then I'd go to a gastroenterologist and see if they can figure out why you have it so bad.

 

Oh - and you can shake all the hands that you want to! You are not a walking, oozing petri dish my friend!!! I have HSV1 orally and HSV2 genitally and I've had several BF's who never got either from me, raised 2 beautiful daughters and have a wonderful 3 yr old granddaughter and none have got it from me.

 

http://supporttruthanddialog.com/toilets-towels-and-touching-oh-my/

 

(((HUGS)))

 

 

[WCSDancer2010]

@HotToddyNightMO

 

Unless you got your Herpes from wrestling, those "hives" won't be herpes. Yes, you can get them there, but it's usually caught by wrestlers ... one has it on the mouth and during the wrestling, their face gets against the other person and rubs it into the skin in a very sweaty, hot situation. It really takes a lot to transfer to that area ... and it doesn't just travel through the body and pop up in other places either. Hives can come up because of stress so if you are really overthinking all this, your body may be responding with hives/acne/whatever. ;)

[hereandnow]

so have had these mouth ulcers now for 2 weeks straight...went to my GP/internist (an amazing dr) yesterday morning to have them cultured. one is irregular shaped on my hard palate and is the size of a dime. ouch. got some benadryl/lidocaine mouth rinse which literally numbs the mouth completely. finally got three normal meals down and that alone made me feel better. by the end of each day though, its hard to talk or swallow again. dr. is pretty concerned that all my blood/hormone/immune functions look normal and i am still getting constant outbreaks. just had a nice couple pop in the rear for the first time, what a delight! i do realize i am not even 4 months in, and need to be patient with my body. despite have these issues in all three areas at any given moment, today was a good mental day. saw some friends yesterday for the first time in a month for super bowl, had lunch with another old friend today. its amazing how just doing those couple things helps, and not letting yourself be imprisoned in your own home. hopefully the mouth cultures come back negative...but if not i guess i will deal again like i have these last months.

[WCSDancer2010]

Glad you got them cultured and I hope they figure out what it is. If they come up negative for everything I'd go to a gastroenterologist as it could be Helicobacter pylori, (the same bacteria that cause peptic ulcers), Inflammatory bowel diseases, (such as Crohn's disease and ulcerative colitis_ or Behcet's disease, (a rare disorder that causes inflammation throughout the body, including the mouth) ... all those are rare but given the severity of your sores I'd not mess around....

 

Glad you got the lidocaine ... I've had canker sores and know how painful they can be and how much that stuff helps! And glad you got out... yes ... staying at home tends to feed depression....

 

(((HUGS)))

[MMissouri]

@WCSdancer2010, I've read you can use alum for cankers. This is a portion of what I found:

 

So to naturally get rid of canker sores, you can use Alum Powder, a common spice found in most kitchens. Here is how:

 

Place a small amount of alum (about a size of a pea) directly onto the canker sore.

Allow it to sit on the canker sore for 60 seconds. It does not taste good, it is quite bitter. Do not swallow the alum!

After 60 seconds spit out your saliva and the alum. DO NOT RINSE YOUR MOUTH WITH WATER! Within several minutes to 24 hours the pain will disappear.

The ulcer may stay for a day or two after you treat the canker sore, but the pain will be gone. If the pain is not gone after 24 hours, reapply the alum with a second application and repeat the steps above.

 

I've personally never used it, but it might be worth a shot if the pain in unbearable.

[WCSDancer2010]

True - you can put it right on them but it tastes NASTY and will leave a very odd taste/sensation (I've got a little in my mouth when I put it on a cold sore)

 

I never tried it internally ... I guess it couldn't hurt because I DO know it works really well for my Herpes OB's. Worth a shot!

[2Legit2Quit]

For anyone dealing w cold sores and canker sores on the mouth.. After having a root canal and the place where I had one shot under my tongue causing a very painful canker sore and remember ing a friend who only had pain relied from dry sockets from wisdom teeth removal, that narcotics didn't even help; I took her advice and bough pure clove oil and omg did I have relief!!! I was in so much pain and nothing helped. Applying it twice to three times a day w a qtip didn't the tricktrick. Completely numbed it and does up the healing. Stings a bit at first and taste gross, but ad soon as you swallow the extra down you are good to go and have that taste like you smoked a clove in your mouth and relief for hrs.