Sharing my experience - recurring shingles

Im 53 female, and have been suffering recurring shingles 55+ bouts over a 4 year period on my lip. I have m anaged on most ocassions to get medication within 24 hours. shingles has been activated by physcial trauma such has ragged fingernail, husband not shaving close enough, crusty bread all breaking the skin and within 30 mins i am down with shingles. Stress also has been a contributing factor. Shingles range from mild to severe to the point of my face not being recongisable because of the distortion of swollen blisters etc

I have suffered recuring Headches and neuropathic pain along with sometimes sever bouts of Nausea that would almost collapse me leaving me unbalanced. Tngling, burning rash sensitivity, on rare occassions fever, then at other times night sweats and chills, sensitivity to light and touch, muscle pain usually associated prior along with the bouts of nausea, CF. appetite will swing from loss of appetitle to nervous eating and binge craving, insomnia, postherpetic nuralia, irrational nervousness anxiety and fear with some bouts.including depression in that period, where I normally would not suffer depression

The last 2 years have been experiencing skin infection around the lip, as well as scarring and R rash

I have been taking lysine, doubled does of vitamin D where indicated low as prescribed by specialist, B12 etc which has helped in some limited measure

Previously I had been suffering iron deficient anemia that would normally require blood transfusion given that my reading was only 19 and had lived this way thinking it normal for most of my life until a blood test confirmed the anemia to date have not been told there is a link, though the anemia fixed via iron tablets, green leafy etc, and a hysterectomy.

I am now developing recurring bouts also of dypsrhodoshia? small blisters that would cluster then join together both on hand and feet

I hope to be seeing soon the Infectious diease Control, Microbiology unit at the local hospital to see if they can shed any light. I dont get colds or flus, nor have had any in over 20 syears, though I do get recurring sinus infection which quickly develops into bronchial then phnemonia causing me to be hospitalised

I can always tell now when coming down with shingles when I send hubby out for potato straws to munch on to alleviate the sensation of nervousness. Like the time coming back from our lovely Anniversary renewing of vows I couldnt possible be hungry as we had a lovely full breakfast and asked him to pull into a petrol station to pick up some potato straws, sure enough 30 mins later I was having a break out. oh and irratability is another symptom.

My life tends to fit around the shingle outbreaks, just when I think I have it licked, another outbreak and the whole cycle starts again

Im active, I walk, swim, linedance, teach, write, create, sing, have a great social group I don't have time for shingles, and yet? Im hoping the USA? injection might come to Australia as I heard it is coming in 2014.

Yes like you havnt suffered cods or flues in yhears and seem resistant to them other than sinus infection and shingles....as I have less cold like symptoms with shingles in many ways prefer it to the common cold....IMO

Hi, (comments from Chris again). Sorry to advise, that I get re-curring shinges and also my fair share of colds and viruses and sinus infections. So maybe the fortunate immunity that some have to other viruses is not linked to shingles. My hunch is that this is a extraordinarily resistant virus that follows its own course, and may be only marginally responsive to the diet, stress levels, behaviour and health of the host. It is evident that there are exceptions to every symptom and feature listed in medical descriptors of this disease. We amateurs and doctors alike are finding it elusive to pin-point predictable pattterns and causes of repeating shingles outbreaks. It is probably in the virus' interest to find healthy hosts who can survive its occasional invectious outbreaks. The unpredictability of outbreaks makes the shingles virus extra hard to avoid and fight. That makes the likelihood that others will be in contact with the infected person more likely - increasing chances that the disease will be spread.

I am generally healthy woman with no bad stress habits except a tendency to work too hard. Of interest is that this recurring form of shingles seems to afflict women more than men. That suggests a hormonal link. From a young age I have suffered very bad menstral pain and I am often tired from managing, hiding and working through this for a few days. This may account for being run down - but I have never noticed the timing of a shinges outbreak to be linked to my period. I have noticed that the weather is often hot during an outbreak - but that may be a coincidence.

I have stopped looking for patterns. There is a danger that we could read too much into coincidences and one off accounts. This can lead to much wasted time, money and energies. I doubt whether the natural therapies will have any answers other than to eat healthy food, reduce stress and take expensive suppliments. They tend to flog unproven or disproven therapies. If they had a reliable cure, it would be well known. Beware reading too much into annecdotal case stories. What applies to one person may not be typical of most or your own body. But it is interesting reading others' stories. I shall try the ice-pack and the cream next outbreak.

I have had about 10 outbreaks over the past 30 years and usually returned to work with visible sores. My managers frown on absence of more than 3 days for any cold or flue type disease - so I am used to being at work feeling and looking ill. In my experience no-one has ever previously caught chicken pox from me, and no-one was evidently anxious about my health or the infectiousness of shingles to others. I could not say the same for colds and flues. However, on this recent occasion, my workmates researched the disease on the internet and became alarmed at the ugly photos and about the described infectious nature of shingles. A health alert was posted to 100 work sites and I was ordered to stay home - because I must be very run down and infectious. So I got the well deserved week of rest that I needed. Maybe public awareness will be a good thing? Do you think people may be over-reacting to shingles these days?

I'm 52 and got shingles for the 1st time 4 1/2 months ago. I had them on my arm, hand, thumb and forefinger. They started under my thumbnail. I have had 2 c-sections and have never experienced pain like that of shingles before. The pain was ridiculous to put it mildly. Was on percoset every 4 hrs for the first 3 months. I'm just now starting to use my thumb again. It is still very sore and still swells which I can't really understand. All I know is I'm not sure if I can physically handle that kind of pain again! Wouldn't wish it on my worst enemy!

I am 36 years old about a week ago I felt some slight pain in the pad of my left thumb. Now, a week later I have red/purple very painful blisters there. Needless to say it progressively got to this point so I went to the Dr today and he told me I had shingles. I originally thought that could be the case as I have been under quite a lot of stress lately and honestly this isn't the first time I've had something similar in nature happen to my thumb. Over the years the pad of my thumb will get sore at times way way way in the tissue, a few days later little blisters will form under there then they will discolor somewhat to a light brown maybe tan and everything will go back to normal. Never have I had it get this bad before. My problem/question is this: people think I'm crazy and tell me I'm wrong because it's "been said" that you only get shingles on your trunk and neck area. Has anyone else suffered with this or could this Dr and myself be off base here?

I've heard of people getting shingles in many other places that just on the torso. I've had shingles 5 times over the last 2 1/2 years, and always starting at the same place............above my right eyelid just under my eyebrow. It first starts with pain, then gets red..... starts to blister and swell and spreads up and down the right side of my face into my hairline and onto my neck. As you read through the other postings you'll see it can occur almost anywhere. Hope this helps.

Hi Pepperniki - I too have shingles recurring on my right thumb. Definitely shingles. I keep my anti-viral tablets in the cupboard to take as soon as feel that typical prickle sensation. Currently am on Week 2 so the blisters are darker and healing up. You're not alone!

I'm so happy to have found some other people that are like me. It makes me feel less alone. I'm 45 (from Australia) and have had shingles for the last 11 years. The recur every 6-8 weeks and to be honest, I'm fed up with the situation. There is a huge misconception that people should only get them 2-3 times maximum so assumptions are made that I couldn't possibly have shingles again. It's just comforting to know that there are other people that understand my frustration and pain. My family are wonderful however because I constantly have shingles I'm not sure they truly understand how tired and sore it makes me. Best of luck to everyone in this situation.

I can't believe I found this forum. I have been suffering from shingle for 27 years. I am 49 and live in the United States. Everytime I talk to a doctor they think I am making it up. I have 6-8 outbreaks a year. Sometimes they are mild and sometimes the nerve pain is so intense that I can't hardly get dressed but there is really no sympathy from anyone becuase they really don't believe me. I keep the prescripion of Valacyclovir HCL (Valtrex) with me at all times. I have not had the vaccine shot yet but I am getting it this week. I don't have a lot of hope that it will work but it is worth a shot. I have heard that someone could catch chickenpox if exposed but no one I have been around in the last 27 years have ever caught chickenpox from me. I never take off any time from work (no one would believe me if every other month I was taking off for a shingle outbreak) even though some times it is really unbearable.

Hi all, please don't give up on finding a doctor who understands this new form of shingles. It isn't the new outbreak of shingles that hurts so bad it's the PHN. When you are calling ask them if the doctor deals with PHN. If they don't know what that means then you're really in trouble. Post herpetic neuralgia is the damage your nerves go through with shingles. that is what causes the burning clawing pain. On another Topix forum alert website that I am on for shingles, years ago had a man say what the pain was like for him. He said it was like being kicked in the head repeatedly with an army boot. My husband read that and then understood but it was not in my head.

just remember to eat your blueberries, spray the painful parts with bactine, take your d3 and your B complex daily.

I'm a female, 57, from Tucson, Arizona USA. I was curious once again, as to what information was available for recurring shingles suffers and low and behold found this forum... as I'm having a attack right now. I thought I was the only one...never meeting anyone who had these symptoms. Reading info about weakened immune system (HIV or cancer) etc. which is not me or simply people having one time event usually middle age or older..

I have experienced recurring shingles for 27 years. A minimum of 4 times a year, however, since I moved to the sunshine state from Iowa USA 3 years ago I have had an episode maybe twice a year. Emotional stress contributes to the outbreak, I feel.

The cluster of blisters started 27 years ago 4 inches to the left of my spine, on lower back (also on a childhood scar) and was about the size of a thumbnail. Over the years, it has moved to... right on my spine, 6 inches above my butt crack and now the size of a US silver dollar. Still painful, oozing, for many days with surrounding areas also painful. As in hypersensitive nerve endings.

I now associate that tired run down feeling (like your coming down with the flu) as being part of the symptoms as others here have felt the same way. I thought I was overdoing it again.

Many years back when they first came out with the shingles vaccine I asked a pharmacist about it. They said they weren't familiar with recurring shingles and weren't sure if it would prevent more or give a full blown episode (Uncle had one time shingles from waist to knees....complete lower torso. VERY PAINFUL took months to recover). So I haven't pursued the vaccine.

I take vitamins + (B-complex) ,try to walk at least 3 miles a day, get plenty of sunshine, 6 hours sleep minimum and try to relax and be happy.

I LIVE WITH IT! And hope I never experience a full blown episode like the Uncle.

I received the vaccination last Thursday and woke up today with an outbreak. I am a little disheartened but I think I will wait and see if they will be a mild outbreak before I take the antiviral drug. I have desided not to call my doctor because she seems less than concerned about my outbreaks. I will be looking for a new doctor this year. I will make sure that I ask about the PHN

Please don’t freak out about your vaccination. I broke out in 17 different places the 5 weeks following my vaccination. They were smaller (size of a lemon or less) and not as painful as a normal outbreak. But the best part was that they didn’t seem to cause much nerve damage.

After that, I do believe that my outbreaks have been less the past 18 months. I actually went 5 months with NO NEW SHINGLES! It was great! I have had outbreaks for over 20 years. I stopped counting how many with the 40th outbreak. I am happy to report that I have never had shingles on my right leg below my knee, or on my right arm below my elbow. Those are my only PHN free zones. I think my easiest cases with the least amount of damage were in my mouth.

Just please remember to eat your blueberries every day and take lots of B-vitamins. Still after all these years, my go to for help is Birch and Marjoram essential oils applied on new areas but mostly just where ever the PHN is acting up.

My big happy thing is that after going to a new pain management Dr. here in Bountiful, UT, I am driving again!!! Hadn’t been able to drive at all for 13 months. I have not driven on the freeway yet…baby steps.