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Jacky Nottingham England

London, UK

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#62
Nov 3, 2010
 

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inpenna wrote:
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I know how you feel. Shingles take a lot out of me now that I'm older. I'm 55 and I don't think it's hormonal. Prior to menopause, I had outbreaks and I thought it was nerve related from the inflammation from menses. The older I get it seems to have an effect on my bladder too. I currently have low back and leg pain and lesions. It's the worst outbreak I've ever had. I've been so tired for 3 days that I've hardly left the house. I have reservations about the vaccine because I'm afraid that will just suppress the virus, like the Valtrex does, which is practically useless.
Hi there,
Please trust me I am more certain than ever now that it is hormonal and here is my reason which for once was told to me by a doctor who himself has had shingles and actually wants to help!! I broke down in tears in his surgery because quite frankly I couldn't take anymore and I am a really strong person in both mind and spirit but I had had enough!! Through my tears I said to him that the only reason I had been looking forward to my menopause would be so that the shingles would go away along with my monthly's!! He said something I hadn't even considered and that was: "why on earth would you think that they would go away? You are more hormonal now than ever!!" Well, why didn't I think of that?? I honestly believed I would be free of it all but it has got worse as I have gone deeper into menopause.
It is interesting that you say it is affecting your bladder because I too am getting the same. At first I thought I had an infection because I now seem to get a stabbing pain in my back around my left kidney. I started to worry about that and had tests which were inconclusive but I always get the feeling that the pain might go if I go to the loo but when I get there I can only manage a teaspoon full if that. Again this all flares up when I get shingles.
As for the vaccine they will not give it to you anyway because it is only for people who haven't had shingles to prevent them getting it in the future and as for all the anti virals my doctor was completely honest with me, they only mask the problem they will never cure. I always found the lesions would not arrive but I would still get all the symptons and it is the symptons that are so debilitating, the lesions I can cope with!! I am interested in your diet? Can you tell me as honestly as possible about your eating pattern and please tell me about what you like to drink i.e. spirits, beer, wine and be as honest as you can it may help all of us!!
Jacky Nottingham England

London, UK

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#63
Nov 3, 2010
 

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dkay wrote:
My Dr. just Rx'd Acyclovir 800 mg 5 times a day which I am having much difficulty getting all 5 a day down as it is killing my stomach and up until today thought it was helping but the burning and stinging is not good today. She also gave me Lyrica but I can't take it as I cannot even function coherently the next morning after taking it. My Dr. wants me to get the Shingles vaccine after this bout goes away but I am very leary thinking it might throw me back into another case. Does anyone else have any experience with having taken the vaccine and how does if affect you if you have repeated outbreaks ?
Hi Dkay

About 20 years ago when this all started happening for me I was sent to a specialist who confirmed shingles and put me on Acyclovir 800mg 5 times a day for 10 days (you are only supposed to do it for 5 but he told me they wanted to blitz it out of my system) Well it did absolutely no good whatsoever apart from give me IBS so if you are suffering with stomach problems I would be tempted in your position to come off those although by now you hve probably finished the course. Who knows it may work for you but to be honest most people I have spoken to said it does absolutely nothing apart from mask the condition for a while and give them terrible stomach problems!!!

Now you have had this you must take plenty of Live Natural Yoghurt to help increase your gut flora otherwise you will suffer for the rest of your natural!! If you cannot eat yoghurt or cannot tolerate dairy you should start a course of dairy free Lactobacillicus Acidopholus.

As for the vaccine it is only available to those who haven't already had shingles to prevent them getting it in the future. It is not available to us unfortunates who are suffering terribly!!

Please look at vitamins and see a good nutrionist but make sure it is someone who doesn't want to pump you full of dairy or wheat as these are food products that cause tiredness and you dont need that as shingles does enough of that on its own! I am not an expert but these are the things I have found out over the past 20 years trying to help myself where the Medical Experts have failed!!

Kind ones!!
Bev

Beamsville, Canada

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#64
Nov 18, 2010
 

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Interesting....I take L-lysine everyday. Although it doesn't completely prevent and outbreak they are definitly mild. Also, I avoid arginine-rich foods such as chocolate, legumes, and nuts, especially peanuts. I drink licorice tea during an outbreak...which helps.
I hope this helps
dkay

Waynesville, NC

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#65
Nov 18, 2010
 
Thanks for all the helpful information everyone. I too have recently discovered L-Lysine and I think it is definately helping as my symptoms have subsided quite a bit altho I'm trying to figure out dosage amounts as it gives me a few side effects if I take too much. I am wondering how much L-Lysine do you take a day during an outbreak. I have the Super L-Lysine tablets that contain 1500mg of Lysine along with Vit C, Calcium, and other natural ingredients to help fight the virus. I am breaking them in half and taking a half a tablet about 3 times a day along with some Ativan. I am not sure when or if they are going to go away as I am experiencing yet another very stressful family health situation that could get more serious as time goes on. I too read about avoiding chocolate, and nuts so have been avoiding those. I would like any input anyone has about dosage of the Lysine, etc. I appreciate this forum. It's good to know I'm not alone.
Carol

East Haven, CT

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#66
Nov 19, 2010
 
Carol wrote:
this is indeed very interesting that, like Jacky just wrote, there are so many of us women suffering with the same odd symptoms. Some doctor needs to recognize this as a problem!
My doctor said he wants to do bloodwork when i am actually having an attack. I feel it coming (migraine for days and it's almost the 7th), I will report back if I can get an appointment and any answers.
I would like start by saying that I really do like and respect my doctor and have always appreciated how he is straightforward...

I just saw him after a tick bite, and yes, I now have Lyme+Shingles. Yay me! At any rate, I was talking to him about my monthly shingle problem and he basically said that he is sorry and I am going to need to learn to deal with it. He said "it is herpes afterall, and there is no cure for any herpes".(I much prefer to never refer to it as herpes because of the STD kind) He said we could do valtrex but it never really works for me or look into l lysine. Finally, he told me that he too has recurring shingles every few years and has really found nothing helps him either, he is my age mid to late 40's.
So discouraging!
mourningstar-200 0

Ann Arbor, MI

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#67
Nov 28, 2010
 
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 don’t seem to want to help.
3232_in_VA

Chesapeake, VA

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#68
Dec 12, 2010
 
Shingles is the worst, especially since I get the rash on my face, in different areas on the face depending almost every time. Have had recurring shingles for years like most of you. I'm 36 and a healthy guy. I've done the lysine, B vitamin, stay healthy regimens. Regardless, it comes back over and over. However, I've got it under control enough to where the rash doesn't get enough of a chance to emerge. I get 90 count Valtrex prescriptions. Take one a day pretty much to prevent... However, all of a sudden I'll get the tingly / itchy / hot sensation somewhere on my face, and I know what's next. I rush to the mirror, see a red area where I just scratched... then I hurry and take another 1 gram Valtrex tablet, and try to relax. The tingly / itchy / hot, slightly red area on my face begins to subside. I've averted an actual outbreak. Tomorrow's another day...can I beat this battle with the Shingles trying to emerge? I've been 95% successful in preventing actual outbreaks. Even with the one valtrex per day, my face starts tingling at least every two days where I have to take an additional pill. But my goal is to prevent this painful, ugly, and embarressing rash from putting a major damper on every aspect of my life. So I've kept this beast in the closet for some time doing the 'preventative' instead of reactive way. Just taking lysine or B, isn't enough for me. With no cure, I feel at least somewhat in control of the situation...as long as I have my bottle of Valtrex always in reach.
jesskazen

Fall River, MA

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#69
Dec 14, 2010
 

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you should seriously be tested for HIV, I dont understand why you would refuse a test that could possibly be the cause of your issue.
foxxylady wrote:
Hi there I feel for all of you. I have had shingles now for 20 years and I relate to all of you and your comments! Mine like taterbug's started from the stress of my mums illness, her eventual death, moving house, losing two dogs, having my second baby all in the space of one year!! Then I thought I'd been stung b a wasp on the left cheek of my backside but hey ho after 2 years the rash kept coming back slow at first but then to coincide with my periods and was eventually diagnosed as shingles. I was 36 when all this first started. I have been on aciclovir for the past year but it only took the rash away and to be honest I can cope with the rash its the dreadful viral symptons I cannot deal with i.e. dreadful depression, want to cry, numbness in hands, legs, feet, toes and even my throat and tongue goes numb and yes I understand all your fears when they do tests and on several occasions doctors have asked to do HIV tests on me which I have been horrified by because I do not put myself in that bracket and have therefore said I don't want to be tested for that because I am 100% certain that's not my problem but people with HIV do present with a type of shingles rash how scarey is that??? I cannot believe that there are so many cures for minor problems and yet after all the years that shingles has been around the medical fraternity still dont have an answer for shingles and take it with a pinch of salt that its just another regular illness that people get and get over it but actually there are some of us that cannot get over it and it's very, very debilitating!!!! It seems there is nothing out there that can get rid of this illness, I have tried everything from de-toxing then blasting myself with good vitamins to boost my immune system, homeopathy, normal medicines from mild anti-depressants to help the pain to anti-virals but nothing works!! The crazy thing is I never catch flu or colds my immune system is really strong with things like that but for some reason it just wont pick up on this virus!! If someone out there has found something that helps I would be eternally grateful for their advice because I am so scared of what this is doing to my body and my nervous system as each year passes as I get older my ability to be strong and deal with it is dwindling fast!! The doctors and consultants I have seen over the years have always told me that recurring shingles is incredibly rare but they are wrong I have met so many people that are suffering with this I think it is a 21st century disease that is spreading faster than they think!!
Annie

United States

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#70
Dec 19, 2010
 
Karen wrote:
OMG…this has been so helpful to me. I am 54 years old. My shingles started on the right side of my backside, near the tailbone approximately 12 years ago. I do believe that they began to appear after having surgery to remove a piece of my hipbone for a cervical fusion of C4, 5, 6.
• The outbreaks became a regular monthly occurrence. Just as they were healing they were reappearing.
• October 2009 I had a fall and fractured my wrist which required surgery to remove the radius and ulna bones and then replace them with rods, plates and screws.
• By Christmas time I could not keep anything in my stomach. The nausea and vomiting were terrible and the shingles started appearing on my arms, legs and chest. Then the canker sores started on the inside of my left cheek along with cold sores that cover my lips. This continues to this day. Nothing is helping to heal these symptoms at this time.
• I now have that feeling in my throat that you describe along with “heaviness” or constricting tightness on my chest that I at first feared was a heart attack.
• I also have lost the ability to “taste” food.
I cannot add any more to the excruciating pain and the numbness; you all have covered that pretty accurately from my perspective.
Karen-

I had my neck fusion too but they didn't use my own bone. Then just two months after the surgery I had my first bout of recurring shingles! Do you think we may have contracted something during the surgeries? I too am getting the sores all over my body, not just in one place and in a line. I had my surgery in a different state but since moved to same area as you.

Annie
Lisa

Hemet, CA

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#71
Jan 5, 2011
 
Last month I called the doctor for a refill of Valtrex and she ordered blood tests. I went and had my blood drawn right when I was smack in the middle of the outbreak without taking any medication. I thought for sure something would show in the blood and I would get some meds to fix this. Sad to report blood work was fine.

Funny thing, not sure if anyone else has this, My husband feels ill and run down before I get shingles. Sometimes he will call it before I say anything. Anyone else have a spouse that has sympathy symptoms? My husband will get the same raging headache I do. He never breaks out though.
3232_in_VA

Chesapeake, VA

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#72
Jan 12, 2011
 
Is anybody else taking Valtrex every day to prevent shingles outbreaks? My doctor has me taking one in the morning and one at night to help prevent my battle with chronic shingles outbreaks. It's been working thankfully. Haven't had an actual outbreak in a while.
jacky nottingham england

UK

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#73
Jan 12, 2011
 
3232_in_VA wrote:
Is anybody else taking Valtrex every day to prevent shingles outbreaks? My doctor has me taking one in the morning and one at night to help prevent my battle with chronic shingles outbreaks. It's been working thankfully. Haven't had an actual outbreak in a while.
hi there. I have never taken valtrex is this an anti viral? What I would say is that most things I have tried and I have tried plenty, do stop the outbreak of the lesions but do not take away the symptons. Also make sure that there are no side effects if you end up taking long term. There are no drugs that will cure shingles but only mask the condition. However, if it makes life more bearable for you stick with it!
dkay

Waynesville, NC

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#74
Jan 13, 2011
 
I believe my outbreaks are definately related to stress as I was just getting better " over" my second bout of shingles symtoms ( no outbreaks) in 8 mo and now my back is burning again in the same spot but am now experiencing another very stressful situation as my father has been diagnosed with myeloma who had a second round of shingles about a little over a year ago and still has an active lesion and after affects.I am now afraid that I may have it as well as repeated bouts of shingles is a definately precurser for myeloma. I am going to my family MD on Mon to see if she will test further for this problem. The risk factors for myeloma include a family member that has had it and since I can't figure out why I keep getting a recurrance of shingles, I am frightened my immune system may be starting to get compromised by possible myeloma. I had a dermatologist tell me the only time he had ever seen someone get shingles a second time they ended up having myeloma so now I"m scared for me as well as my Dad. Does anyone else that has had repeated outbreaks of shingles have myeloma or am I just freaking out unnessarily yet again ?
Jacky Nottingham England

Mansfield, UK

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#75
Jan 14, 2011
 
dkay wrote:
I believe my outbreaks are definately related to stress as I was just getting better " over" my second bout of shingles symtoms ( no outbreaks) in 8 mo and now my back is burning again in the same spot but am now experiencing another very stressful situation as my father has been diagnosed with myeloma who had a second round of shingles about a little over a year ago and still has an active lesion and after affects.I am now afraid that I may have it as well as repeated bouts of shingles is a definately precurser for myeloma. I am going to my family MD on Mon to see if she will test further for this problem. The risk factors for myeloma include a family member that has had it and since I can't figure out why I keep getting a recurrance of shingles, I am frightened my immune system may be starting to get compromised by possible myeloma. I had a dermatologist tell me the only time he had ever seen someone get shingles a second time they ended up having myeloma so now I"m scared for me as well as my Dad. Does anyone else that has had repeated outbreaks of shingles have myeloma or am I just freaking out unnessarily yet again ?
I don't know what Myeloma is and to be honest I have had so many reasons thrown at me as to why I get recurring shingles I really have to say I don't want to know because with everything I hear I get freaked out and that then causes me to have another bout so I think what you say is true that stress can be a big causer as I have had many many huge stressful moments to deal with in my life that has left me this way and I can honestly say that in my moments of true happiness and busy times in my life where I have felt fulfilled this dam disease doesn't take its hold on me. However, as soon as I start to get ill again I start to read up on it and hear frightening things like this and this then sets off my worries and concerns which I notice are the precursor to more illness and more shingles. I have now learnt not to do that anymore and to try to be positive. I have had just about every blood test ever and they all come back negative to the point where my doctor cannot understand such a fit woman walking into his surgery worrying about feeling so ill!! It is a mystery to me, it is a mystery to the medical fraternity but please please please.....if you are concerned that this relates to your dads illness go get checked and put this out of your mind for the sake of your own health. I think you will find you don't have this but please keep us all posted.
kdk

Columbus, GA

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#76
Jan 14, 2011
 
Hi all,

I'm so glad I found this forum! I had my first outbreak when I was in kindergarten, it was on my upper cheek, right side of my face. A couple of weeks later I had chicken pox, mild case. Throughout school I had outbreaks same spot. Sometimes really bad, sometimes mild. The summer of my senior year in high school I had a severe case of mono and relapsed at the end of the summer, ended up with a heart murmur, tonsillectomy, and scarred lymph nodes from it. In college I had a severe outbreak-facial that resulted in a seizure...the great advice/treatment I got in the emergency room was to take my Darvocet and Acyclovir and never tell another dr. the seizure happened. A few years later right after having my first child I had shingles on my left arm and still have numerous scars. A couple of years later I end up having Coxsakie virus(hand,foot, and mouth virus) at the same time as my 1 yr old...apparently I never had it as a child.

I am now having mild outbreaks-facial, the week of ovulation, the week of my period I have blisters on my scalp and the week after around my ears. I have been diagnosed with autoimmune thyroiditis in the past two years, I've had migraines weekly since bringing my first son home from the hospital.....my question...have others had similar multiple exposures to multiple types of this virus like me and do you think it causes autoimmune problems? Any info appreciated...I'm so tired of the pain and fatigue...heck, I can live with the pain...
Jacky Nottingham England

Mansfield, UK

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#77
Jan 15, 2011
 

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jesskazen wrote:
you should seriously be tested for HIV, I dont understand why you would refuse a test that could possibly be the cause of your issue.
<quoted text>
I found your comment very very insensitive!! If you have been following any of the issues raised on here you will realise that most of us are normal people who have suffered this wretched disease for some 20 years or more and some since as young as 2 years old. Do we all have HIV?? Most of these sufferers are well into their 50's like myself and have led good healthy lives.......so we all have HIV do we? Surely we would all have full blown Aids by now or be dead!!

I think before you go spouting a comment like that you should read a bit more first and digest and don't act like doctors who haven't got a clue what is causing this epidemic and neither do they have the resources to research it leaving people like us to find the cause and relief through others.

You probably meant to help but trust me I am a very intelligent woman and like many others on here, I know when to go for tests and when not to and in this instance I have been told by top physicians and doctors that I am not presenting shingles in the same way as a person with HIV.

A comment like yours can be very worrying to many very healthy people on here who are unfortunate enough like me to suffer shingles but not be able to get over it and a lot of this is due to women's lowered immunity during menstuation, menopause, pregnancy and others with extremely stressful lives.

Read thoroughly, research, then comment but be gentle you could cause yet another outbreak amongst an already stressed out community!!
Jacky Nottingham England

Mansfield, UK

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#78
Jan 15, 2011
 
dkay wrote:
I believe my outbreaks are definately related to stress as I was just getting better " over" my second bout of shingles symtoms ( no outbreaks) in 8 mo and now my back is burning again in the same spot but am now experiencing another very stressful situation as my father has been diagnosed with myeloma who had a second round of shingles about a little over a year ago and still has an active lesion and after affects.I am now afraid that I may have it as well as repeated bouts of shingles is a definately precurser for myeloma..........
Hi dkay I answered this post once but forgot to add that there is a huge possibility that your fathers outbreak was due to the Myeloma coming first and lowering his immunity and at that point he had an outbreak of shingles. Shingles usually appear when the immune system is very low so therefore my advice to you is that the shingles were a result of his illness and not the cause.

I hope this helps........
Erin

Keller, TX

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#79
Jan 21, 2011
 
I am like so many of you. My shingles first appeared 5 years ago when I was getting married. I had it while pregnant with both of my children which was very scary. I had an outbreak during every semester of exams during law school and now that I am studying for the bar I am getting an outbreak every few weeks. My outbreaks often coincide with my period but not always. One solution I am going to try is having a Mirena IUD inserted. I had one before i was married and since it stops your mestrual cycle I am wondering if it will decrease the frequency of shingles. I have also started getting urinary tract infections coupled with the shingles which is pure misery. This is sucha cruel virus because it strikes you when you are down.
Michelle

Columbus, OH

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#80
Jan 22, 2011
 
hollyheart09 wrote:
I am 34 yrs old and I have been getting shingles since I was 13. As I get older the outbreaks seem to get more frequent. I have another outbreak now and the pain was so unbearable I went to the doctor for the pain. She is going to start running tests on me also. I am scared to death. My doctor seems completely baffled by this. I get an outbreak at least 10 times a year now and on both sides of my body around my waist. Keep me posted on what happens with your tests.
Hi, I'm 40 and have had recurrent outbreaks of shingles for the past 10 years. The 1st one was the worse. I kept getting them every time I had my period, and I know stress was a part of it. Over the years, it has diminished some. My dr put me on 500mg of Valtrex everyday. Since then, I may only get 2-3 a year. Then last week, I started having major pain in my right side, rib cage area, and back. I thought I was having a gallbladder attack! The pain was awful. I have been a recovering addict for 2 years now, and could not take anything for the pain. Yesterday, I woke up to the blisters, and realized it was another shingles episode, not my gallbladder. For the past week, I have had high anxiety, very moody, feeling depressed, etc. That is what shingles make me feel like. It sucks not knowing if there's anything else wrong. My bf thinks im crazy, and wonders why "I" get them and he does not. He thinks I'm a hypochondriac! It sucks because he doesn't understand. Well, I wish you the best with your tests. I've heard that stress, anxiety, and a lowered immune system will cause an outbreak.
Julie

Birmingham, UK

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#81
Jan 24, 2011
 
Hi everyone,
I really can't bare the thought of anyone else suffering as I do constantly (I am 50 year old women and have had the virus for most of my life). Like most of you doctors have never been much help and even when a couple of years ago The constant stomach and leg pain prevented me from doing anything (tears where just running down my face consatantly from the pain) I was treated for gynea problems (they fitted a myrena; now removed) and told me I had hurt my back until an MRI a year later showed nerve damage. I kept asking them if it could be shingles and was just made to feel stupid. I now of course know that I am not alone and whatever the docs say I know its not uncommon. I have 3 siblings and we are all pretty much the same just with me being 8 yrs in front of my sister. Her suffering much as I did then. everything has got much much worse over the last 5 years.
The worst of it is that I often don't get a rash just all the symptons. I am in the middle of compiling a medical history as really I have never had any other illness. When I have finished it I will post it along with everything I have tried just in case anyone finds it useful. As an afterthought I to have been asked about HIV !!!
Best wishes to you all and to evryone who like me feels at the end of their tether....Hang in there x

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