Oppy

Sydney, Australia

#507 Jan 3, 2013
Yes foxy lady - I usually start a break out of shingles with the nuerualga on my face, irratability and fatigue can set in (its when I want potato straw even though not hungry I realise my nerves are on edge that indicates I may have a break out. If the break out actually happens and its a bad break out its usually preceded with extreme nausea and fatigue. I get a light rash on one side of my face. Lots of stabbing pains of needles on one side. this is my 30th + bout I lost count after the 30th time over a three year period. I am 52. Energy levels improving. But mostly now inconvenient..oh and the sweats and fever and chills thankfully so far havnt had much of it other than listless sleep....

I had a break out initially due to a low immune system,iron deficient anemia low level 19 (ok now) vitamin D level low up to 32 now, and continued to have shingles as a result of trauma to the lip once with a ragged finger nail, another time by a crusty bread roll and this time I get to blame my husband again who didn't shave nearly close enough and the prickles stabbed me. Sometimes caused by emotional stress. This time I simply spent a day outing to a waterfall etc, the next day was a picnic by the river and skinny dipping, and painting. I really shouldnt. really shouldn't have let the stresses of the previous weeks get to me.

Mostly I try to keep all stresses at bay. Would rather shingles than a common cold, though find it annoying when cold like symptoms follow the shingles anyway. I teach SRE, lead a bible study group, teach craft,write, line dance, belly dance and paint. I love my life and 11 grandchildren, so despite my body producing too many histamines, my bowels causing problems,the shingles, aches and pains, other symptoms like recurring hives mostly triggered by almonds and other nuts, lactose intolerant, reflux of the osephegus - Gord - slipped disc hiatus hernia? an increase in tingling and stinging of hands and feet - specialist ruled out ms and lupus and such. I really just need to loose weight, eat better, focus on God, release the stresses and get on with life. I have found the bouts of pain less and less with each bout, some bouts no pain at all especially if they happen close together.

I hate that there is a process available to investigate cases here in Australia for recurring shingles - so I am now curious just how many bouts does one actually have to have to qualify for investigation? just how interesting a case of shingles does one have to be. how many are you from Australia?
Rosie

Australia

#508 Jan 5, 2013
Thank God I found this site! I thought I was going nuts ! I am 52 and had my first bout of shingles 6 yrs ago on the left side upper body - blisters and intense pain following the nerve line from front to back. 6 weeks off work. For 3 yrs after, doing anything strenuous with my left arm caused the pain to recur in my back a few hours later. In Feb this yr I got my 2nd outbreak - interestingly, I live in a very remote Aboriginal community in Western Australia - only 300 people - and there were 5 of us with shingles at the same time!!! This bout was not as severe and recovery time was 2 weeks. Both times I had antiviral meds. Well, this time, I didn't get the rash but the pain is the same and I am 2 weeks into this bout. Didn't get the antiviral as I was on hols so I am assuming my recovery time will be longer. No blisters this time thank goodness but had I got them, I would have rushed to a med centre for meds. I am so glad to read that others have had a recurrence without the rash/blisters! THe only thing that helps me is minimising use of my left arm, rest and more rest!
nancy paul

Gibson, SC

#509 Jan 6, 2013
please, anyone learned anything new. gone through this twice in the last couple of months. got stressed at work several weeks agao and it brought it on. the week of christmas, my nephew was killed. i have been really down. woke up this morning and have a new case. it is so painful and itching and mu whoel body hurt. i m taking the acyclovir, and tylenol and using cordizone creames. any other advic dewould be great.
Cindy McNeill

Kill Devil Hills, NC

#510 Jan 7, 2013
Oh My Gosh! Everyone keeps telling me my shingles cannot come back this quickly, and then I have my daughter check my head, and they are in there! I have been to the doctor for shingles five times, and the occurrences are getting closer and closer together. I take B-12 every day, but I am getting shingles anyway. I am going to look for the B-50.
Carol

Lakeland, FL

#511 Jan 8, 2013
Barb wrote:
This is amazing. i got my first breakout of shingles in 1983. I still get recurring shingles about 3 or 4 times a year. I can't figure out if anything triggers it or not. The pain is bad.. sometimes worse than others. Right now, I am in the healing phase of blisters. The pain has pretty much gone for this time anyway. It is always in the same place to the left of my tailbone. When its going to start the pain in my back and on my behind is unreal. It hurts just laying down. My doctor has just dismissed this with not answer saying it is very common to have recurring shingles. It has really helped me knowing there are so many people out there with the same exact thing!
I understand...read my story from May 30, 2011
Carol

Lakeland, FL

#512 Jan 8, 2013
Kate wrote:
My doctor sent me to a dermatolgust after years of reoccurring shingles. He insisted its herpes. I get mine on my lower right back. I asked how could I possibly get it there, don't know anyone with a cold sore who has kissed me there!! He says u can get it from anywhere? I am on valtrex for six months to see will this help, but sitting here I can feel the tingling and know if it wasn't for the valtrex I would have the rash plus the low feeling when I get an outbreak is on me now. Why do these so called experts dismiss us ?
please see my story from August 18, 2010. I definitely had Shingles (Herpes Zoster) when I was pregnant with my first child. The later biopsy confirmed Herpes Simplex many years later, which the doctor explained that the nerve damage from shingles compromised my immune system, thus making me more susceptible to other problems and illnesses. I hope the best for you. Does anyone know of others this has happened to?
Skitsymama

Longview, TX

#513 Jan 11, 2013
Hello all. I am so grateful I found this thread of information. I have been having recurring shingles outbreaks for the last 20 years. I have so many of the same symptoms as everyone else has posted. If there are so many people with recurring shingles, why is it such a mystery to the medical profession. I actually have three different shingles lesion sites that have developed over the years, I have two lesion sites on my lower back on either side of the midline. I also have an internal shingles lesion site, I break out with shingles in the posterior adenoids (sp?) in the right side of my neck. The pain is excruciating with this outbreak. I have been perplexed with this disease for years now. I had about 5 shingles outbreaks during my last pregnancy and it put my baby at risk for birth defects, that is frightening. On the bright side, he did not have to have the varicella vaccine because his doctor's determined that he has a natural immunity to the varicella-zoster virus. I'm just tired of this, I have an outbreak now on my lower back on both sides of the midline. This disease manifests itself in my body in numerous ways that contradict the typical symptoms, that I really wish researchers would conduct a scientific study on recurring shingles. It somehow seems so different that I wonder if it is even the same disease.
Skitsymama

Longview, TX

#514 Jan 11, 2013
Anna wrote:
I just wondered I am 35 and had my first bout of shingles when I was 28 and I always get terrible pains in my legs then the blisters appear on my leg does anyone get it on there legs as most posts were else where x


When I have an outbreak on my lower back, just an inch or so away from my spine on both sides of the midline, I have excruciating leg pain. The side of the midline I break out on dictates the leg in which I experience neuralgia. If the left side breaks out, the left leg hurts and vice versa, or both.
Barbara

Sterling, VA

#515 Jan 14, 2013
I have to chime in too and am elated I found this thread as well. I am 50 and have had recurring shingles for almost 7 years now. They used to come with my period. At first I never knew it was coming except for the slight tingle in my back then bam, incredibly horrific itching/burning and blisters. Took Valtrex for the first few times, then it didn't make a dent in the symptoms so I stopped it. Like Skitsymama, I now have the leg pain prior to breakouts and it is still centered a bit around my periods - which are now erratic due to the change in life. I get a small quarter size rash at the base of my spine - some times are worse than others. No rhyme or reason but usually the left leg gets the pain (and it is a totally raw feeling or burning feeling) and the break out is just on the right side of the spine,lower back.

I took to eating blueberries (antioxidants) every morning to hopefully curb the outbreaks and it did seem to help a bit. I went almost 4 months without any rash and it was heaven! Then we went out of the country for 2 weeks and it came back because I didn't get my blueberries.

I am in a bout now that has lasted quite a while - weeks. Before my period and now during. I felt the leg pain yesterday and overnight the rash came and it bubbly already. I use benedryl cream to control the itching and it does works. I do think if you keep yourself occupied, your mind can forget it a little. Until you use the restroom and remember...

My doctor said the vaccine will not help because this is a different strain of herpes than the chicken pox shingle. And she thought maybe when I'm through menopause, they will quit as well. So hopefully I only have 2 more years of this. Hang in there people - you are not alone!
Judy

Barnesville, OH

#516 Jan 14, 2013
Some time ago I posted my experience with shingles recurring every 2/3 weeks. Well, as mysteriously as I started getting shingles about 3 years ago, they seemed to have mysteriously stopped. I don't know what happened, but maybe it just ran it's course and is done. I'd like to think that I will never have another outbreak again, but I can't say that. I just know that I am free, at this moment, of a very annoying and sometimes painful rash on my arm.
Sooooooo thankful!
caring roomie

Concord, NC

#517 Jan 21, 2013
My roomate had his first shingle attack and spent a week in the hospital last year, he is also HIV positive, do any of you have any advice for him as I think he may be on the verge of another outbreak.:(

Since: Jul 11

Nottingham, UK

#518 Jan 22, 2013
caring roomie wrote:
My roomate had his first shingle attack and spent a week in the hospital last year, he is also HIV positive, do any of you have any advice for him as I think he may be on the verge of another outbreak.:(
As there are people on here that will be rather disturbed by what you have posted could you please just confirm that your friend was diagnosed HIV positive before he got Shingles and that he has had a breakout of Shingles as a result of his illness?

Shingles does tend to be brought on by a compromised immune system as a result of having HIV but also for many other reasons. Many on here have been asked to take HIV tests by doctors who seem to feel these two things go hand in hand. However most all prove negative as this is a strain of Herpes yet to be discovered by the medical profession and at this stage Doctors are feeling around in the dark as none of them believe that Shingles can recurr.

We on this forum are living proof that it can and not as a result of being HIV positive as most of us have been getting this from a very young age, mostly women and mostly linked to hormonal.

Just would like a confirmation from you to allay any fears of which we all have many when we get continuous outbreaks of this relentless virus.

In the meantime we cannot give advice to your friend who I am sure is being given the best medical care other than to take extremely good care of himself, watch his diet and try to live a stress free life if at all possible. We wish him well.

Kind ones

Jacky
Ronna

Salt Lake City, UT

#519 Jan 22, 2013
Nancy, Cindy, Rosie and everyone, I am so sorry you are going through this! Barbara, sounds like we all need to start with the blueberries. Thanks for the tip! I am now mixing drops of essential oils in 70 or 90% rubbing alcohol and spraying on all the places where I have PHN pain. It does work. I need to do it 4-5 times a day. I use lemongrass, birch or wintergreen, marjoram and rosewood. If you have someone who can test you or you can test yourself for an exact mixture it is great. If you want to know more about this let me know. About the shot, I got it last summer. I have been almost 6 months without a new outbreak. As I have said before, the first 2 months after I got it were NOT FUN! But I actually can imagine a real life for myself. The nerve pain is the big issue now. But I hope to never have another shingle outbreak or if I do they should be much milder.
Kelly

Bedford, TX

#520 Jan 23, 2013
mourningstar-2000 wrote:
Well it's been over a month since I've had my IUD removed. I just wanted to say that i was shingles free this month! This is the first time since i had the IUD inserted! I knew in my heart that it was part of the problem although the Dr.'s assured me they are not related. Yeah right. Here's my theory: The IUD is known in some cases is known to cause depression. I can't say that i was depressed but i differently was not myself. I had high anxiety and increased PMS symptoms, thus lowering my immune system during my menstrual cycle, creating an opportunity for the virus to present itself. It's only been a month so i can't be positive that shingles won't come back. However the outlook is good so far. i will keep you posted. The IUD was Mirena which released small amounts of hormones directly into uterus. i have not been able to find anyone else that has reoccurrences with shingles while using Mirena. Hopefully someone will present itself.
I think it's ridiculous for a Doctor to tell a patient to "deal with it". You have to trust your body. There has got to be ways to reduce the occurrence and duration of outbreaks. Doctors don't seem to have answers. If i would have listened to the doctors I would still be having symptoms. I hope this helps someone. This thread was so helpful to me. Just knowing there other people are going through the same thing helped to reassure that im not crazy or making it up. I know it my heart its hormonal. I would suggest to anyone out there to get your levels checked and share the results. Maybe we can figure what is causing the virus since the doctors donít seem to want to help.
. After reading all of these posts I am just realizing that the hell I have been living with for 3 years now- recurring shingles, nerve pain, much more- all started after I had the Mirena inserted. I NEVER SUSPECTED the MIRENA! All of this time and all of this research - how did not think of this??? Me too sister- shingles, nerve pain, valtrex, recurring issues- a mess! I'm getting a hysterectomy- I'm done. Mirena out.
Barbara

Sterling, VA

#521 Jan 23, 2013
Ronna wrote:
Nancy, Cindy, Rosie and everyone, I am so sorry you are going through this! Barbara, sounds like we all need to start with the blueberries. Thanks for the tip! I am now mixing drops of essential oils in 70 or 90% rubbing alcohol and spraying on all the places where I have PHN pain. It does work. I need to do it 4-5 times a day. I use lemongrass, birch or wintergreen, marjoram and rosewood. If you have someone who can test you or you can test yourself for an exact mixture it is great. If you want to know more about this let me know. About the shot, I got it last summer. I have been almost 6 months without a new outbreak. As I have said before, the first 2 months after I got it were NOT FUN! But I actually can imagine a real life for myself. The nerve pain is the big issue now. But I hope to never have another shingle outbreak or if I do they should be much milder.


Thanks for this! I may try to get the shot sometime - six months must be great!! Did you have shingles non-stop for those 2 months?
caring roomie

Concord, NC

#522 Jan 24, 2013
Hey I am sorry I didn't realize how that would look...yes he has been HIV positive for over 15 years but had his first shingle attack last year. I am just trying to help figure out a way to keep him healthy and was just wondering if there was a way to stop the shingles from coming on. If anyone has any helpful tips on vitamins or food regimins that would help I would greatly appreciate it. Thanks so much!:)

Since: Jul 11

Nottingham, UK

#523 Jan 24, 2013
caring roomie wrote:
Hey I am sorry I didn't realize how that would look...yes he has been HIV positive for over 15 years but had his first shingle attack last year. I am just trying to help figure out a way to keep him healthy and was just wondering if there was a way to stop the shingles from coming on. If anyone has any helpful tips on vitamins or food regimins that would help I would greatly appreciate it. Thanks so much!:)
Thank you so much for your quick response and reply. I am sure you won't know how much this has meant to a lot of people on here who when faced with this virus attacking them, some for over 20 years and constantly being asked to take an HIV test when they absolutely know in their hearts they don't really need to go down that road it does get rather scarey when someone comes on and admits they (or someone they know) have HIV and have broken out with shingles?

No matter what their sexual orientation or how safe they have been they would suddenly start to wonder if there is another way they might have caught HIV unbeknown to themselves to bring on Recurrent Shingles because lets face it we are all still not completely 100% knowledgable about HIV and how it is transmitted??? We are given to believe that it is all either by being promiscous, gay, bisexual or not practising safe sex but no one ever takes time to realise it is also possible to contract this virus through so many other routes such as blood transfusions, mosquitoes etc etc!!!

Recurrent Shingles is not necessarily about any of the above neither is it to do with HIV necessarily but it is to do with a compromised immune system in one way or another and this is how it creeps in and people with HIV have very compromised immune systems so please don't worry this doesn't mean any of you have HIV just that you need to find ways to boost your immunity to whatever is causing your system to fail of which there are many more reasons far less worrying than HIV!!!!

I hope I have put a few minds to rest!!

As always - kind ones

Jacky
CMC

Chicago, IL

#524 Jan 24, 2013
I've had shingles over 20 years..and in recent years it has moved along new nerve tracks so when I say pain in the butt, Im being quite literal. This is a virus that started at chicken pox..it can't be eliminated from the body..why Doctors chase after autoummune diseases is beyond me..a virus is what it is. Mine also breaks out every month as I assume the hormonal changes put enough stress on the body to cause a breakout. I am finally reaching peace with it..I have Ativan for the electrocution phase which is really the worst of it...this is when I turn into a real live human vibrator and probably scare people away who think I might be schizophrenic as well.( it does have its bonuses). This phase has over the years caused IBS and reflex but if I was my digestive tract, Id probably be pretty ticked off from the overstimulation too. Sometimes, I limp after a break out so I pretend Im a pirate and figure if it starts to affect my eyes, Ill even get a patch to go along with my limp.
I did start taking am adrenal burnout supplement from NewHealth Products called Stress and Adrenal Fatigue about a month ago for unrelated reasons. Ironically, my shingles has broken out twice during my period but in such a weakened state I am kind of suprised. And no itchibg or PHN afterward. Maybe these pills are adjusting my immune system enough to keep the breakout at a threat level 3 terrorist attack. Either way, my stress over them is gone...so I guess Im good either way.
Diren

Philadelphia, PA

#525 Jan 28, 2013
I'm very tired, exhausted before during and after reoccurrences, can't bring myself out of bed, any suggestions? Every year, more and more
Adam

Rancho Cordova, CA

#526 Feb 4, 2013
Anyone have a case where the lymph node hurts more than anything else? I am not sure mine is shingles as it has not be diagnosed but, I am fairly certain it is. It would be my first outbreak and I was just recently really sick when it started to present itself after recovering from the illness. I first noticed a sunburn feeling on my left lower back with subtle groin pain. Then I happened to stumble on what seemed to be two mosquito bites on my left top buttocks and one on the lower side. The one on top has spread but I can't examine it very closely to see if I can see vesicles. The bottom one remains fairly the same size. More recently, I have noticed it begin to itch subtlety and the sunburn feeling as starting to present itself on my anterior thigh. However, the pain in what id assume to be my lymph node trumps all the skin irritation by at least 5 times. Has anyone had a similar experience?

-adam

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