Sharing my experience - recurring shingles

I have just come down with my 6th case of shingles in 4 years and the 3rd case in the last 12 months. It always occurs in the same place on my left buttock and I have given up on the anti-viral medication as they make me feel worse than the shingles itself. I am so relieved to have found this forum because my friends and family keep telling me that there must be something else underlying that is wrong with me to keep getting shingles like this. My GP is considering the vaccination for me but the surgery have used all of their batch on OAP's so I have to wait until the new batch comes in next year!

I was a healthy fit person until I got my first bout of shingles nearly 5 years ago, now I am on my 8th bout. 4 episodes in 12 months. I have it on my shoulder and effects my neck too as I have arthritis and I am only 40 years old. I eat healthy and used to exercise when I feel well enough to but because I am having it so recurrent that I don't have much energy.

My job is stressful but I love it, I have tried reducing my hours but nothing works. I was only back at work 2 weeks and now am off again. How long are work going to put up with me. I have the aciclovir every time but doesn't do a lot to help and neither do pain relief/creams. They won't give me the vaccine as I am too young as they have done no research on it under 50 years old.

I have sort of got used to the itching and phn/pain but I am getting depressed because of being off sick so frequently.How do other people cope with stress and depression? I am being referred to counsellor so hopefully that will help. I know there are a lot worse people out there than me but trivial things are mounting and feel like they are getting on top of me. I don't have anyone close to talk to only on the phone and my partner doesn't really understand depression.

There has got to be a specialist out there in shingles that can help us all and stop this horrible disease from taking over our lives!????????????

Greetings from Canada! I am a 58 year old woman who has just had shingles for the 9th/10th time back to back. My first bout was at 8 months pregnant at age 36, a very serious case covering my chest front and back on the right side, hundreds of vesicles and wickedly itchy, then a burning pain: a cross between a scald and a bee-sting is how I describe it!! Cases 2 through 10 have been in the past 6 years, mostly in the past 4 years ranging from the top of my head to my ankle, all on the right side of my body. I also suffer from neuralgia in my face (right side) and just got over a bout of a painful ear/throat agony and sores in the roof of my mouth and gums, miserable to say the least. To date I have avoided getting in my eye, for which I am grateful.

In Canada, each time except during my pregnancy, I was treated with FAMVIR and the last two times with Elavil (20 mg Amytriptyline) for nerve pain. Lyrica is another drug that is used here commonly. The vaccine has been available for years,, it has now just been offered to patients 50 yrs old (was always 60 and older) and costs about $150 CAN, not covered by health care plans. I will get it, but have had some viral illness or another off and on for months so haven't been really immunologically strong enough. There have been side effects reported, like cellulitis at the site of injection and several people swear it has given them shingles (again) as it is an attenuated vaccine (live), but my doctor says that is impossible, so you will have to investigate further should you wish to take it, with chronic shingles already a problem.

I am so happy to have found this forum, knowing that there are others out there who have developed shingles as a chronic condition is somehow comforting!

I got my first bout of shingles 3 weeks ago around my breast,under my arm and back.i was just about to return to work when I got another eruption on my chin, it itches and tingles like mad im on a second course of acyclivir now. My doc said cause its not just on one side of my body,it's herpes not shingles, but sure feels the same. My dilemma is I work with pregnant women and don't know if I'll be putting them at risk if I return to work with this latest rash. Can anyone tell me

I am a 41 yr old male, trial lawyer (high stress). Here's my experience: 8 years ago, felt itching on base of my lower back - right side below belt line. I'm an ex-college athlete, so I was in pretty good shape (at least the girls thought so). We'll, that itching got worse and worse... clusters of blisters formed - I thought I'd picked-up something from a tanning bed. My doctor told me I had "a case" of shingles ... but, the blister attacks seem to reoccur approximately 5 times a year - usually in the same area. Sometimes, I develop a blister or two on tip of my nose and on bridge of my nose. Here's when I know an episode is about to hit: nerve sensitivity on my lower back, itchy feeling on my back, and lately - throbbing deep nerve headaches (that even Tylenol won't help), along with crawling-skin areas (like you'd feel if you had the flu) on the top of my leg. When these feelings start up, I know I should start taking my 400 mg Acyclovir (2 pills at a time). I then cover the blister-cluster area on my lower back with a large band-aid. If I catch it early enough, the blisters don't fully form, and my skin returns to normal in 3-4 days. If I'm late, the attack can last 7-10 days before returning to normal. I have never had any attack in my genital ares, so I truly believe I didn't catch this as a STD, and from what I've read, the virus is from chickenpox that lays dormant in the lower spine (which may explain why it shows up on my lower back area). I am so happy to know I'm not alone with dealing with reoccurring shingle attacks. Does anyone think that a vaccine could help me/us? (By the way, I've tried red marine algae, but it hasn't helped - only Acyclovir does - for me).

I FINALLY I FOUND MORE PEOPLE WITH THIS RECURRING SHINGLES CRAP! Although I don't live in the UK, I am desperate to find answers. I do have an autoimmune disease though. RA. BUT to know that this even happens to healthy people helps me. I got my first bout in December on my pubic hair line.. then a couple of months later I got it at the top of my butt crack. Then the past four times it has been on the top left side of my head. So right now is the sixth time. They won't give me the vaccine because of my low immunity and I'm younger than fifty. So fifteen days of a large amount of acyclovir here I go again. And I have a sinus inf and bronchitis on top of it. I also suffer from Osteopenia and fibromyalgia, ptsd, anxiety, depression and a hiatal hernia with gerd. Mine are also a little mild but each time is worse than the last. The dr had me on an everyday low dose of the antiviral too and they still came back. Thank God for y'all!

I have been suffering from recurring shingles for about ten years now. I have been told by the hospital that it's not contagious at all and can continue to work even though they did advise rest. I am a therapist and am now wary after reading these posts. I am allergic to acyclovir but have now heard of Herpid paint. Has anyone tried this? I have just had an eruption today and am quite despondent about it!

My experience sounds like Cheriya's. I too thought the muscular burning pain in my elbow was due to lifting weights and that the initial rash was some sort of insect bite...until it started to spread all the way down my forearm and the pain didn't go away. I was diagnosed with shingles 4.5 weeks ago. My doctor sent me away with calamine lotion because it was in his opinion too late for anti-viral drugs. Although I am 65 years old, I generally consider myself fit and healthy so I didn't think that this illness was something that I couldn't self-manage with a healthy diet and lifestyle. However, since then my condition has significantly worsened. The initial site seemed to heal within 10 days but then new spots emerged and spread further up and around my right arm. This secondary rash, which emerged about 10 days after the first, has become infected. Then, a few days ago my left arm erupted. I re-visited the doctor again today, who says it's not shingles because it's on both sides of my body and if it were shingles the rash would have cleared by now. I am told it's infected eczema but this just doesn't ring true for me. My questions are: Has anyone else had shingles that a) affected both sides of their body and b) where the rash evolved in several stages over 2-3 weeks? I've now been prescribed antibiotics but understand that if I've got shingles this won't help.

Shingles will only breakout on one side of your body or the other. You can, however, get new outbreaks before the old one clears up. This sounds like it is happening to you. I have been going through this for more than 20 years. As I have gotten older and under intense stress, overlapping cases have happened. Just remember to take lots of vitamin B and eat blueberries as much as you can. Many people have said that each time they get their heart rate up, they have an outbreak. Use moderate, gentle exercise.

How is your nerve damage? Can you tell yet? Please take care!

Thanks for your feedback and advice. I think it is definitely shingles and this attack certainly was preceded by a prolonged period of severe stress. But to suffer for 20 years? Poor you. The rash has been so painful and unrelentingly itchy that it's brought me to tears. I'm already paranoid about having a repeat episode! Thankfully, the arm that got infected has quietened down now, but the area is still very sensitive and I get needle sharp pains through my elbow from time to time. Nor can I seem to lift anything heavy. Presumably this is nerve damage, which may improve over time? I guess we also need more strategies to deal with stress. I walk a couple of miles a day and do some moderate weight lifting. Probably time to practice daily meditation too :-) On the plus side, I love blueberries!