Sharing my experience - recurring shingles

You really touched on my situation.  I'm 63 female and have fibromyalgia.  That condition has a lot of disease states under that umbrella called fibromyalgia.

My skin as my immune system is so compromised began to break out in what dermatologist described as folliculitis.  Small red bumps that burn and itch. Scale.  Starts with a small head sort of and mine don't clear up.  Feels as if I'm being burned by a candle lighter or a small

Blow torch.  Fire directly applied.  Painful!!! Then along comes something on my right shoulder/back shoulder skin area and left shoulder about 6 weeks ago, saw dr 4 weeks ago general MD.  He was certain it's shingles!!! Wow.  Started me in Gabapentin 3 x's a day 300mg ea.  Now it's been 4 weeks of healing of those 1st shingles but about 4 days ago I feel I have new spots in new areas nearby to the first area.  I see dr Wednesday.  I wasn't sure was I crazy.  Are these new ones albeit some are small painful suckers, shingles???  deedee5

Hi everyone! 

I have gotten the same type of itchy rash on the left side of my lower back for about 7 years. No doctor has ever diagnosed me with anything and tell me that it is hives or a rash from anxiety. But I’m convinced that I have shingles. The rash does not cause me much pain unless I itch it a lot. It is just extremely itchy and tingly the whole time I have it. It always starts out as a small itchy bump that looks similar to a mosquito bite and then otherbumps appear. Sometimes I get the rash multiple times per year. It never causes any extreme pain but it’s always so itchy that I can barely stand it. Ive learned to live with it and I know it could be much worse. But I’d feel so much better if the doctors would diagnose me. The last time I brought it up, they said that it couldn’t be shingles because I’m too young and it shingles only happens once. But from everything I’ve read on here, obviously that’s not true. Does anyone have any suggestions on how I can get a doctor to diagnose me? Or if I don’t have shingles, any other ideas on what it could be? Thank you!!  IMG_2439.HEIC

Hi , 

Reading your posts It’s comforting to know I’m not alone . I contracted chickenpox five times over my childhood and into my teenage years each time was worse than the previous esposode. After contracting the virus again when I was 13 weeks pregnant with my daughter I decided after she was born I would pay for a vaccine as it wasn’t available on the NHS . It worked for 10 years I was free , until two years ago I developed shingles which traveled from my injection site down my left arm and leg after being plagued with reoccurring shingles for two years for some reason my body doesn’t recognise the virus . I’ve had the shingles vaccine 1 year ago still continued to contract it. So tomorrow I’m going for a chickenpox vaccine again it kept me chickenpox free and shingles free for 10 years . Medical professionals have told me it won’t work but they have also told me you only have chicken pox once and shingles is rare in someone my age . Clearly my body has its own ideas xxx

I've had it 4 or 5 times and have it now.  Mine doesn't look like the pictures I've seen.  It's always 1-4 blisters, nickel size or quarter size.  They look like a burn. 

Hi, 

Just wanted to add that I have also recurrent  Shingles. I get a headache about 4 days before, as well feel extremely tired. I don't worry about it anymore so much, I have researched every site and published medical research. In my case I was lucky to used DMSO for other aliments, and this is the only fix that worked for me. I used the roller 99 % DMSO gel, and the next day it’s all flat and dry. No Cluster that gets worst. Very little is needed. You rub it and have a wet face cloth in case it feels that it burns. But it kills the virus, and like I mentioned it it completely dried up and dark like a heeling open wood on your knee when you were a child. No more itching, but you know it is still there. I never, ever scratch it. It takes longer to completely fall, but I have no scars. I also get cold sore on my lip instead of a cold or if I stay in the su too much. So DMSO prevents it when applied when it itch. I no longer spend money on other products that hardly work or help.

I hope this will help someone who si plagued by shingles. I honestly think it happens when I over do it. I thin that my Immune system is low,  but I get these two annoying things instead of colds

I easily get the flues or food poisoning , as well I don’t absorbed vitamins as the majority of people. That is the only thing I have noticed differently.

Lynn

What is DMSO gel?

This forum thread hits the spot on many of my subjects. Recurrent with both sides involved.... sciatica and tender skin on back of thighs, fatigue and malaise, no immune disorders i'm aware of. I've had it over a dozen times in the past 3 years. I have found that the food triggers are the most prevalent cause... with stress, UV, and skin rubbed too much from clothing are the worst in that order of prevalence. The Lysine/Ariginine ratio is what I do to best combat the outbreaks and it's when I fall off the wagon and eat the things I shouldn't and the perfect storm shows up with a mix of stress and skin abrasion...then I get the bumps (many common foods that are VERY hard to avoid when eating in social settings,etc) and I always think I have a bug bite and it's always the shingles, I'm finally starting to 'get it' and realize that the bugs don't love me but the zoster virus sure does. I use the Acyclovir and it helps it to go away faster but it's the fatigue part of the deal that's hardest.I have all 3 kinds of herpes and really feel that there is somehow a connection. Just a gut feeling... and no I don't really tell people anymore - except my husband and he's sweet about it but doesn't really know what to say or do to help. Anyway, I hope this helps to validate another victim's syptoms and feelings of frustation and agony..... and urge them to consider contemplation about looking up the Lysine/Arginine ratio aspect of self help. I was eating ALL the wrong things and it's not that I don't like the better foods just didn't know it made a difference. Now I do. 

Just know you are not alone and you're not crazy and your doctor just hasn't been informed yet so you must be diligent to insist that they look a little further into the idea that it's not necessarily fitting in the nice little box they've had it in for years. This forum shows that to be true in an instant. Thanks for listening - hope it helps ! 

I want to share my recurrent shingles story. Mine started after a long labor with my 2nd child (he was "sunny side up" - which meant his head was beating against my low back during labor). I noticed the first sign in 1991. I went to the doctor, who suggested an anti-viral oral medication, but I couldn't take it and breast feed - so I declined. For about 10 years, I had occasional outbreaks... but then the outbreaks started occurring more frequently, and the symptoms of fatigue, nerve pain and low grade fever would get worse as the years progressed. I had tried valtrex, which i was unable to take because of "side" effects, and I had also tried acyclovir during outbreaks, which would help, but then the outbreak returned. I finally found a naturopathic neurologist who advised me to take acyclovir daily to keep outbreaks from happening, and increase the dose if/when i had an outbreak. I did this for 3 years, and have finally been off of acyclovir for many months and am outbreak free. During the 26 or so of shingles, I tried many, many things... including homeopathic remedies, diet change, alternative healing methods, prayer, etc., etc. It had begun to affect every aspect of my life, I could not exercise without having an outbreak. I gained weight. My energy was always low. My adrenals were shot. Getting the treatment I did, thanks to the doctor who FINALLY believed me and helped me, I feel like I'm getting my life back. I can take walks without worry of outbreaks.

Hello there, I am now 57 and my first out break was when I was 40 years old. I have countless outbreaks of shingles, sometimes 2-3 times a year. I have taken the antiviral medication for two years with no lessening the outbreak intensity or frequency. My first outbreak was on my right thigh hip and tummy. The area less ones each outbreak till it became 1 cluster on my upper right but cheek then more recent my upper but crack. I have less outbreaks now due to diet Controle of low argeniene food- chocolate coffee ect and more Lysine fresh foods. I take supplements and build up my immunity also. Saint johns wart is very helpful on antiviral and the nervous system. Stress is a big go sign for shingles and lower back tension. Hope these are helpfull as they have certainly slowly turned my life around to having Controle over this sole distorting condition.  

Healing in nature.

All,

Have had overs 100 outbreaks since I was 19 yrs old. I HAVE BEEN TOLD BY 3 different Doctors that it was shingles. Finally I went to a specialist who told me it was herpes Simplex 1.  I said what?!?! He said that cold sores do not always break out on your lip as my breakouts always occur on my right hip, but there is always just one the size of a quarter in almost the same place every time.  We always hear that shingles only comes once, this explains the 100 breakouts that have occurred in my life. Same treatment as shingles.  Hope this helps. 

I'm a 13 year old girl and I first caught shingles march 2017 when I was 12. I have it for the second time right now. Both times my right arm and torso are affected so you can get it in the same area. There is no specific age for shingles. However it is more common in senior citizens but you can catch it at any time. I have never had the chicken pox before, but I have been vaccinated for it. Because of that, I have determined that if you have any contact with the chicken pox or shingles virus, either you were infected or not, you are eligible for shingles.

Hi I’m new to patient.info . I’m Hal . Twice in 2016 I had shingles, mine always started with night sweats & high fewer for 3 days. , then a few days of itch before I would break out. I was diagnosed with stage 4 leukemia the 1st of Nov.  That explained my weak immune. Cemo started by mid Dec. which made shingles come back even worse . After being  told I probley had 5 years to live I did a lot of research on alternative medicine. I kept coming up with two fruits that kill cancer & and are antiviral.  Granabana & Tamarind. I did not believe what I been reading. But I had nothing to loose. I killed my cancer eating Granabana, 4 days in a row . I now make a smoothie 3-4 days a week mixing my 2 fruits .  I buy tamarind  & Granabana  frozen pulp by Goya mix with organic carrot, apple juice .  I also drink a little bit of beet , carrot,  apple juice  , with a tablespoon of apple cider vinegar, mixed together every morning ,  I killed my leukemia, I don’t think it is even possible. For me to ever have shingles again ,  I don’t believe I can even get the flu . Besides cutting surgers from my diet , except natural surgers from fruits and juices & only organic .  My diet did not change. I no longer believe the pharmaceutical’s is a healthy choice.  I killed leukemia, , my spleen was 3” oversized , it took maybe 3 months to get  it to normal. And no more shingles. I don’t believe everything I read . But everything I done worked for me . 

As a nurse, I realized I needed antiviral medication to reduce the severity of shingles. I was prescribed Acyclovir 800 mg three times daily, along with antibiotics, anti-inflammatories. and pain relief. However after eight days I had to cease the Acyclovir as it was making me terribly sick. By that time it had completed its purpose, as the blisters had already crusted. I still have a red rash on which I use Calamine Lotion. The hot weather doesn't help! I have also started a diet high in Lysine and low in Arginine, which I'm hoping will bring healing. I discovered that this illness can be quite debilitating, and exhausting. Now that the blisters are longer active I am managing to do basic tasks such as shopping, very basic housework, etc, but the next day I feel as weak as water! I would agree that Lysine is an important part of the puzzle, and is likely to prevent future attacks. But I also believe that one of the most vital factors is a healthy immune system. I was recently given a drug (via injection) of six-month duration, and it had the most sinister side-effects. One of the most important of these is the lowering of immunity. Sure enough, only two weeks after the injection was given, I had my first ever outbreak of shingles! That, plus the other serious side effects of the drug I was given (Prolia) have resulted in overall weakness and serious  debility.Turning this into a positive (with difficulty!), I have been warning others of the serious consequences of (a) lowered immunity, and (b) the use of Prolia. Together they make a dangerous cocktail!! I now have to wait for nearly a year before the Prolia is no longer in my system. Praying that the side effects will stop, and that I can get through this experience with my sanity (and health) more or less intact!!