Fake Prodrome or Real and Shedding?

[whitedaisies]

Well I got chronic fatigue from it so definitely yes more exhausted.

 

At this point now I am more functional at doing chores around house an barely nap in day anymore. So I am slowly getting energy bak. But I do crash if I have a really busy day. Before h I was a Wonder Woman mother of 3 lol...still mother of 3 not much of a Wonder Woman.

 

Constant burning left at 11 months post exposure. Yay! I still have various stuff going on down there but te pain is manageable.

 

It's just a mind fuck honestly.

 

Xo

[Sil88]

Let me in on the bear hugs, your misfit group just got bigger. I have the same fatigue, neuropathy and whacky immune system (usually my armpits and neck swell and ache for long periods of time without a clear reason). I get on and off lower back pain which is muscular apparently, though I wondered if it was my kidney for a while. I kept track of every symptom since diagnosis, and made it into an organised timeline for the benefit of the doctor. (as soon as they hear me listing off random symptoms , they just stamp me with anxiety)

[whitedaisies]

Welcome. So sorry you could join us BUT happy to have company.

 

Doctors don't realize that wih crazy symptoms comes the anxiety and it's kind of trying to prove the chicken of the egg. Of course we are anxious out bodies are going wack!!! But then who is to say some is from h and some is from anxiety?

 

There is no sense for a symptom diary I doubt any doctor would look at it or care to invest enough time to decipher it. If it makes you feel better....go ahead so you can see any patterns etc.

 

Immunity and ones reaction to virus or infection is very personal and depends on a lot of things/factors.

 

Reactions like ours are rare BUT with the millions of people on this planet with herpes I can't imagine it's that rare.

 

[2Legit2Quit]

OMFG!?? I CANNOT BEGIN TO TELL YOU THE RELIEF I HAVE HEARING OTHERS HAVE THE STRANGE SYMPTOMS LIKE ME!! I took great pleasure announcing to the friend today who told me maybe it was all in my head, that I have found others going through the same things as me!

 

When I told my GP, she speaks out loud as she writes, depressed. I told her I wasn't depressed at that time! My rheumatologist added fibromylgia I feel to my blood diagnosed autoimmune disorders, because of the symptoms I described from my primary ob and residual symptoms after!! She told me only shingles acts like that! Yes, shingles who is in the same alpha family as HSV 1 & 2,, because all 3 are so similar than the other 5 human herpes viruses, that it couldn't be plausible people could experience post herpetic neuralgia and itch!? I am beside myself on how ignorant the medical community is!! Try listening to your patients a$$holes, you might actually learn something!

 

Welcome @sil88 ! Please join the Island of Herp Misfits! (All in good fun of course.. Gotta laugh at what you can't control!)

 

Hahaha! I laughed pretty good @whitedaisies at your welcoming statement! Lmao! I'm just so relieved to not feel alone in what has happened to me. I really do believe the probiotic and other supplements I take at high doses, which are all required to repair the sheathing on the sensory nerves, has helped tremendously!

 

Actually, being on this other forum I was on, I was able to find more people are experiencing nerve issues, but they don't link it to their ob and/or they are mentioning it to their doctors (GPs are the worst offenders on this, and docs in Europe seem to have the most outdated medical knowledge on the virus) who blow them off and day that would have nothing to do w herpes, so naïve patients don't push it, as they are under a lot of stress and it is being under recorded.

[Danaaaaaasaur]

Welcome to our wacky group @sil88 sorry to hear you've got the same symptoms as us :(

 

Would you mind letting me know the vitamins and things you're taking to help promote the nerves healing @2legit2quit I wouldn't mind giving it a go :) x

[2Legit2Quit]

A live culture probiotic that has a coating to get passed your stomach acid was the biggest change for me in making almost all nerve symptoms go away, after adding it to my daily doses of vitamins. I take about 3xa the daily dose or more in C, D, Bs and zinc and magnesium. Most Americans are severely deficient in these and are needed for nerve health, especially the the D and all Bs. To really get what you need from the B complex, it is best to get it by shots w thiamine. Thiamine really only comes in liquid form and only way it can truly be absorbed. W out it, your other Bs are almost useless. Taking enough Bs until yiu get a niacin flush, will tell you how much you need for your body. We use all these vitamins more due to infection. Bs Ares specially needed for repair of nerve sheaths that have been damaged, which causes much misfiring of nerves.you can get like 4 B shots w thiamine for like 25-50 dollars at clinics. One a week should suffice. When we are defincient of anything, it depletes something else, which then causes depletion in other areas. There is a difference between the daily recommended dose, which is minimum and then how much you really need.

[WCSDancer2010]

@whitedasies, I understand not wanting to pass this to your partner, because you associate the experience of this as hell and that is how you identify the experience. You two are the only ones that have had it for more than two months, that are experiencing what I am as well. So that is a clear indicator z we are the exception, nor the rule. The fact he wants so bad to have it and doesn't care says a lot. I do not think you should break up w him. You cannot project your experience onto him, as if that will be his experience too. Men doesn't have a quarter of the hell we go through, so stop worrying so mu j. While I think it is admirable, you can't deny yourself love or make decisions for another grown adult. I really do think it is fake prodrome.

 

Can I get a Hallelujah and an AMEN over here???

 

I really can't add a whole lot to this as I'm not one of you "Misfits" (said with LOVE!) ... I had a few hellish spells of OB's when I was younger but no nerve issues. As you are seeing, the number of people who have your (really shitty) experience of H is pretty small and thus there are few, if any, studies on the Herpatic Neuralgia that you are experiencing I'm afraid.

 

Oh and as per your first post, nothing it TMI here... the only way to get accurate answers is to ask thorough and honest questions :) We are all adults here and we don't have to buy into the "other" stigma left by our Puritanical Forefathers (Thou shalt not discuss anything to do with SEX in an adult and mature manner).

 

I'm glad you guys are all sharing your experiences and what works for you.... and I agree that Probiotics can make a HUGE difference for some. One thing I just learned (as a heads up) is that a *small* number of people (the Probiotic Misfits...lol) detox so heavily that when they start on them that they get Kidney pain (I'm starting to date a guy who experienced that and I did some research and it seems that others experience the same thing) so I suggest that you start with a lower dose and work up to a big dose over a few weeks or months if you have any symptoms with the larger dose. And yes Vitamin B is great for nerve issues and it's water soluble so what your body doesn't need will be excreted in your urine so you don't have to worry about toxicity at normal doses .. like many things with Herpes it doesn't hurt to try it and see if it helps :)

 

(((HUGS)))

[2Legit2Quit]

@WCSDancer2010 thanks so much! I do hope @whitedaisies doesn't cheat herself out of something good and while I do understand, because I have had moments of thinking the same way and I'm sure I will struggle when the time comes, but I will have to remember not to project my experience onto others either. In fact, I tend to be a habitual projector in many areas of my life. One thing I have learned is, herpes had put a magnifying glass on my prior low self-esteem and insecurities... It is very easy to think it is all the herpes, but it is not, it was there before herpes, herpes just made me realize just how bad it was and how much in need I am of self love and acceptance. Until I resolve these issues, I will not stop projecting any of them and certainly not the herpea either. At the core of rejecting a H- partner, is us not feeling we are deserving of them to start, but w out H we may have overlooked that is how we feel. W H, it magnifies the feeling, because you not only feel not deserving, but also feel that you aren't worth the risk. Work on finding that self love, hell I will even join you on that journey, because I need it.

[WCSDancer2010]

One thing I have learned is, herpes had put a magnifying glass on my prior low self-esteem and insecurities... It is very easy to think it is all the herpes, but it is not, it was there before herpes, herpes just made me realize just how bad it was and how much in need I am of self love and acceptance. Until I resolve these issues, I will not stop projecting any of them and certainly not the herpea either. At the core of rejecting a H- partner, is us not feeling we are deserving of them to start, but w out H we may have overlooked that is how we feel. W H, it magnifies the feeling, because you not only feel not deserving, but also feel that you aren't worth the risk. Work on finding that self love, hell I will even join you on that journey, because I need it.

 

YES!!!!!!!!! Ding! Ding! Ding! We have a Winnah!!!!