Am getting recurrent shingles and no idea what the cause is - fed up!

Infections
1

Hi there, I'm a 27 year old female and am on my 4th shingles outbreak in just over 13 months. I am feeling quite low about this and frankly very fed up. I am looking for some advice on how to understand what my potential triggers are, coping strategies, ways in which to prevent further outbreaks and anything else you think could possibly help me, thank you. I'll now give you the history.

I had my first bout of shingles just over a year ago. It appeared on the upper half of my left buttock and tracked horizontally outwards to the distal side of my buttock. At first I thought it was a midgey bite but when the rash began to spread I knew something was wrong. I looked it up online (as you do) and was presented with three possibilites; impetigo, genital herpes or shingles.

I went to the GP who diagnosed shingles. Presentation was inconsistent with impetigo and genital herpes, especially as it was unilateral, localised, tracking a nerve and I have never had herpes 'down there'. It was after the 72 hour period to be able to effectively take antivirals, so I had to wait it out.

Approximately 3-4 months later I had another outbrek. Exacly the same presentation and symptoms. I think this was triggered by sunlight as I'd been sunbathing in my friends (secluded) garden with a thong on - oops. Went to GP who said that shingles categorically can not appear in the same place twice, and that this was likely a herpes infection of the skin. I was confused and asked, 'so like cold sores, or genital herpes?' He said neither, and that although it is rare, it is possible to get herpes infections of the skin. He prescribed me antivirals and gave me a swab to use if I ever had another outbreak.

6 months later and along came another episode in the same spot. I saw yet another GP who diagnosed shingles again. I asked him about the reoccurring in the same place conundrum, and he said that it can happen as it's the nerve that it's stored in and follows the same path, that it can spread but will usually follow the same path; much like cold sores. He gave me antivirals.

Now, almost 4 months later here I am again. Exact same spot again, albeit slight to the right. First cluster appeared more proximal to my buttock crack (sorry, for want of a better word/phrase). As it has been the bank holiday I phoned 111 and was prescribed antivirals again. This time however, they do not seem to be working as well. I have been on them for a little over 48 hours and usually they will have slowed down and will be calming. Throughout today a second cluster has appeared, following the nerve as before. Also, this outbreak is much more itchy than previous ones.

I wasn't particularly worried about this until the 111 GP sounded concerned and asked if this was being investigated. The answer to that is no. I have done some reading and seen that a poor immune system can be to blame, but I have a pretty average immune system. I'm not on chemo and I had my annual STD test last year just before all this started which included a test for HIV and all came back negative. I do have B12 Deficiency but am having 3 monthly injections for it so not sure if that's anything to do with it?

Over these episodes I am beginning to form a picture of when I'm about to have an outbreak and am quick to act on it now. The hardest and not always most identifiable sign is tiredness about a week before. As I said I'm B12 deficient and am a university student so can become fatigued quickly, so usually assume that this is why I'm tired. Then the day before an outbreak I have a very tender left labia (feelsa like someone has kicked me in the crotch) and a swollen gland in my left groin. Tender where your bottom meets your top of the back of the leg and a really tender spot on my buttock precisely underneath where the rash appears - no generalised tenderness, just right over that exact spot. Then the itching creeps in and then the rash. Afterwards is when I realise that must be why I was so tired. Usually the rash is not painful at all and only slightly itchy. This time it has been very very itchy indeed. Still no pain but ruddy itchy!

I have not managed to use the swab from the previous GP as I have always managed to get antivirals in time and I don't realy fancy deliberately popping a blister to get a swab - I imagine that would hurt like no-one's business!!!

Today one of my friends basically said I was too young to have shingles, have had suspiciously too many outbreaks and basically made me feel like a leper and it was somehow my fault. Does anyone have any advice, hints and tips or words of comfort for me? I am well and truly fed up and feel so down 

Thank you xxxx

2

Hi Itchy,

I'm itchy, too, and in pain most of the time from post shingles nerve after effects. All of us who have had shingles and/or the nerve pain that follows feel as frustrated as you do. Unfortunately, there are no easy answers in regard to what is normal when one has the shingles virus/itching and nerve pain. Everyone reacts differently to shingles. Most doctors don't know much about shingles so it is up to us, the shingles victims, to educate ourselves about this illness. To a certain extent, one must try to cure her or himself, or at least discover what our triggers are and what techniques help ease our discomfort. I have had shingles only once, about six months ago. So, I can't help you with the reasons you have recurring shingles. But, I can say that shingles and the nerve pain that often sticks around after shingles are made worse by stress/anxiety, lack of sleep, too much sugar or improper diet, dehydration, over taxing your body and many other issues. Good luck in stopping your shingles. 

3

Hi Itchy!! I am 45 and have been getting shingles for the past 3 years!! I have heard everything in the book of what could be causing it and how it can't be shingles. Well, I still do not know "for sure" if it is because my rash (when I get it) does not always blister. Sometimes I will get a bump and the it will be gone the next day!! However, my most disabling symptoms are not my rashes. It's the fatigue, sick feeling that accompanies it (usually about 5 days before). The best thing that has helped me is diet and a very calm lifestyle. No gluten, soy, dairy or corn. Basically vegan accept for some organic chicken and wild salmon. B12 and B complex, magnesium calcium supplements. I still get symptoms, but less frequent and less intense. I hope you find more answers and most of all, relief from this horrible virus!!! ❤

4

Hi,

I feel as if my shingles has never really gone completely since getting it over a year ago, as my eye still itches badly  every single day about 3 times or more a day! I had it in the worst place. my eye, head and forehead. i realise now that the itching will never stop as the nerves have been damaged, I was told at the eye clinic that most people don't get shingles twice, but it seems that was wrong information, after reading on here that many people do!

5

First I'm really sorry that it has you down. I know the fatigue and pain can be a lot sometimes. I feel like sometimes people don't understand how much it can get you down. I've heard people say oh you're too young to have it. But in talking with another girl she had it at age 24 and I was diagnosed when I was 23 so I really don't think you can be too young to have it. I've read on these forums other girls that have also had it when they were young I'm now 36 . For me I think my triggers have been massages,stress,poor diet, and also once I went to a tanning bed got super itchy then broke out in a rash. I feel as I've gotten older I seem to get it more frequently. Like every 3 to 6 months. I am planning on doing a cleanse (next week) and trying a vegan diet because I've read so many success stories of people combating other health issues immunity issues so I'm hopeful and willing to try it. Just need my body to be healthy.

I take lysine,B 12 sublingual drops, vitamin C, and drink Calm which is great for stress ( basically its magnesium). I don't take these vitamins every day but as soon as I start feeling stressed or tired I take them and it seems to help avoid the progression of a rash with blisters.

Curious if anyone else takes vitamins that help?

6

Thank you tiffany60896. I know it's a somewhat unknown entity to most GP and the reasons behind it can be elusive; just very frustrating isn't it! I hope you recover well and don't end up with recurrence

7

Hi Shoe Lady, you sound to be going through the mill too! I hope all settles down for you. I have heard about trying different diets; vegan is something I'd struggle with I think but may try cutting out certain foods to start with. I am deficient in B12 and have to have it injected so I do wonder if this has caught up with me now and injections aren't enough/the dose isn't enough. I can't take supplements or eat 'iron rich foods' as my body doesn't absorb the vitamin. I am planning on visiting the GP again to see if there are any other investigations they can do or if it is indeed going to be left solely to me to experiment.

I hope your shingles continue to stay at bay x

8

Jane1618 that sounds terrible! I really feel for you <3 I was quite distressed to begin with when the GP told me you couldn't get shingles in the same place and that I was extremely unlikely to be having an outbreak of it again so it must be something else. I mean, I know that shingles is a form of herpes but when he poo-poo'd my feelings or theory on what I was experiencing, it made me feel quite upset. I had done my research on shingles by the second outbreak and had read that you can break out again and in the same place but he wouldn't listen. I feel better armed now to continue fighting my corner, it can just be so demoralising at times and frustrating.

I hope your eye settles down and you find some relief soon x

9

I am so sorry that you are dealing with these recurrent outbreaks. You are not alone. First, I will say that most physicians do not educate themselves enough about the virus. With that being said - you are in the right place. It is up to us to be our own patient advocate. Yes! You can have recurrent outbreaks on the same nerve. I have had those for many years. I suggest finding a physician who will prescribe a maintainance dose of antiviral medication that you take daily. While you still may have outbreaks, those will be less frequent and less intense. I take Valtrex 500 Mgs twice daily. There is also famcyclovir and acyclovir. Acyclovir does not work for me. My outbreaks are on my face. I have had it in my mouth, nose, ear, eye, and my brain - which was nearly fatal. Shingles can be dangerous, dependent upon where it attacks you. As for why does it attack you? Who really knows. I too have a B12 deficiency. Another reader here suggested that my irritable bowel syndrome could be the culprit. It could be genetic for me, as my mother and brother both have the same thing. For the shingles pain, I am prescribed gabapentin (Neurotin) which works on nerve pain. No amount of narcotics or NSAIDS will work, as these do not touch nerve pain. Many people will incorrectly assume that this is a disease of "old people" and lay persons will tell you all sorts of ignorant things. Just ignore those people. Until you have had it - you cannot intelligently converse about it. I am a registered nurse, and after having it in my brain, I have read numerous research articles and spoke with top experts in the subject here in the States. Even they will tell you - you know your own body. Find a physician who respects that, and is knowledgeable about the disease. I suggest following up with an Infectious Disease specialist. They are USUALLY equipped to understand the virus, take cultures if necessary, and correctly prescribe maintenance therapy. The only downside to this is that it is often hard to get an appointment, and getting in while you have a flare-up might be difficult. Good luck to you. Hope this helps. - Kim

10

Thank you, all I can do is carry on with the eye drops that really only keep the eye from drying out, and the gel at night, I was very grateful that I didn't lose my vision though as I do have a small scar on the cornea due to the shingles, but luckily not in my line of vision, Good luck to you too!

11

I take B12, Bcomplex, magnesium, calcium, and an essential oils blend. I eat a vegan diet (with organic chicken and wild salmon) and I have been doing so much better. I still have symptoms but less intense and less frequent and less duration. Started the vegan-ish diet 3 mo ago, so I'm hoping it will just keep getting better. Food therapy can take a year or more to reach its optimal effectiveness. I also stay clear of peanuts and almonds and limit my intake of most nuts. Pumpkin seeds are a good one that I eat. Take care, and let me know how your diet is working for you!!!

12

What were symptoms you had for face and eye? I recently started having twitching in my right eye and I'm a little paranoid. Twitching has been going on for a week now. I have bumps on my scalp on right side only.

13

Hi Itchy!

I am sorry you are going through this process with Herpes Zoster Shingles.

I would definitely recommend popping a vesicle to get a swab for a PCR. It is the most definitive test to determine whether or not it is indeed Herpes Zoster Shingles.

I would ask for the antiviral Famciclovir, first, or Valcyclovir, second, rather than Acyclovir, as the first two are more efficacious than Acyclovir.

Please Google Herpes and follow high Lysine low Arginine diet. It truly does make a difference in the foods that you eat.

Please get plenty of rest and sleep. Try not to overdo it. Avoid sunlight as that is a definite trigger for Herpes.

Try to avoid stress, if you can.

I am a Nurse Practitioner in the States and have had Herpes Zoster Shingles in my right ear every three to five weeks for the past twentyone years and twice in my right eye. I understand your frustration.

Best Wishes

Merry Juliana

14

Hi Itchy2017 I'm new to this discussion but I'd like to share. I've been suffering from shingles since my early 20s (I'm now 51). I get them on average twice a year. I'm lucky in that I don't get the severe symptoms some suffer from. They appear on my right butt cheek, roughly in the same place each time. Sometimes I only realise they're there when I'm in the shower and feel the bumps while washing. It's usually about the 3rd day I feel pain, more an itching really. I use compeed plasters to cover them and I've given up getting any meds, I just ride it out. One doctor told me you need to take anti virals before the rash breaks out but the time it takes to get an appointment it's too late. He also told me it remains dormant in the body for life and that yes it can recur. Although they don't know why. Stress is a factor and I find when I go on holiday on a long haul flight the pressure of sitting for 9 hours on a plane also causes an outbreak. I've ceased worrying about the cause and just accepted that I'm going to have this for life. I take l-lycine which I find helps with the severity.

15

Hello, Itchy. Yesterday I broke out with the usual cluster on the usual place...for the fifth time in two years. I actually had one break out on the other side, but it was minor and I really don't count it. 

I don't know why I act surprised every time this thing hits me. It's not as if I don't have warning: the aching back, the loss of balance and unexplained bad mood. But I am always thrown off guard by these terrible shingles!

I've decided to try changing my diet completely. As far as the stress component, I'm not sure how to fight that. I think I'll just power through and hope to get well quickly. That's the crazy thing about these shingles -- you never know how long they'll visit.

So, the only words of comfort I can give you are you are not alone (I thought I was the only person who suffered recurrent outbreaks). 

Andrea

16

Hi Andrea,

You certainly are not alone regarding recurrent episodes of Herpes Zoster Shingles. I have recurrent episodes of Herpes Zoster Shingles in my right ear every three to five weeks for the past twentyone years and twice in my right eye.

Please Google Herpes and follow high Lysine low Arginine diet. It has helped me by decreasing the frequency of the episodes and the severity of the pain. Some take Lysine supplements, but I prefer to just follow the diet.

I have insomnia and also have ataxia, or become off balance, preceding and during the episodes. Where is your rash?

What most of us who have recurrent episodes of Herpes Zoster Shingles have found is that if you try to power through the episodes without resting and sleeping more, you will have more recurrent episodes as you are stressing your body out.

Best Wishes

Merry Juliana

17

Hi Itchy2017,

   Just wondering if you are still dealing with shingles? I had them about 4 years ago on my left side half way around my body & used some nutrition a friend told me about. I got over the intense inner pain in 4 days & the sensitive sore pain on the skin in about 2 weeks & they haven't come back! Believe me I would not want them back. If you are interested you can read about the products at www.weluv.relivinglife.com And if you want to know what I took you can email me from that website as well. That goes for anyone who is struggling. This "shingle survivor" wants to help those who are hurting & give hope. Even as I was helped & given hope!      

   Passing the hope along!

   dawn30139  

18

Hi Itchy,

   Wondering if you are still dealing with shingles? I had shingles about 4 years ago on my left side half way around my body. I was able to get rid of the intense internal pain in 4 days & the sensitive pain on my sores in about 2 weeks. I have no scaring. They haven't come back. Would live to give you hope like I was given. Let me know if you are interested.

   Passing hope along, dawn30139

19

I Read your post And was puzzled myself at how many times you’ve been through this. First let me start by saying I am not a medical doctor so anything I say is just from experience and my opinion. Although it is very uncommon you can most certainly contract shingles if you’ve already had the chicken pox. Usually it’s commonin people in there late 50’s and up. The one thing that really puzzled me was when you said there was no pain. Unfortunately I’m going through a bout with shingles right now and I have to tell you it is one of the most painful things I have gone through. And after 7 yrs in the SEAL Teams I can tell you I have a very high pain tolerance. When you had the rash outbreak was it followed with blisters ? And by chance if you had the blisters did they go through the scabbing stage ? They started me on a medication called Valtrex and I was already in the blistering stage (3-5) days in and the Valtrex started working on the second day I was on. The other thing they say is it is very rare to get them a second time and even more rare a third time and you had already been through it four which is crazy and believe me when I tell you I feel for you this stuff sucks. Anyway I know your post is 10 months out but I’m really curious what the end result was. Did they finally contain what you had ? Did you in fact have the Shingles ? If so I hope you had a speedy recovery. Thanks for your post btw it was educating to me. Take care and God Speed ....

S.T.  O’Brien

20

Hi Sean. Just to jump in here. I am 52 years old and I’ve had recurring shingles since my early 20s. Usually twice a year. As I’ve got older the pain has become almost non existent and I only know it’s there when I bath or shower and I feel the rash. I get it on my right butt cheek. A doctor told me you have to take anti virals BEFORE the rash breaks out or they have no effect. Is also a virus that lies dormant in the nerve endings and can reactivate although reason why isn’t known. So yes it can and does recurr many times. Believe me I’ve looked extensively into this. Now I put a compeed plaster on the rash and take l-lyseine daily. Hope this helps. No I’m not a doctor either this is just my own experience