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

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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 cry

Thank you xxxx

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  • Posted

    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. 

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    • Posted

      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

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    • Posted

      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.

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  • Posted

    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!!! ?

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    • Posted

      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

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    • Posted

      Hi Itchy, although this is an old post I just came across it and I would not think that 3 monthly injections would be enough to correct a B12 deficiency. I heard that you need injections a lot more often than that initially to correct the deficiency, and 3 monthly would barely maintain an existing level.  This could be your problem. Both low B12 and low D3 levels are apparently related to shingles because both of these are related for immune function.  If you are inside a lot and don't get much sunlight you would probably be low in D3 too. 

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  • Posted

    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!

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    • Posted

      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

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    • Posted

      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!

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    • Posted

      Hi jane1618

      I have had shingels for 1 year now. I too got it on my forehead and around my eye .Also the nerve inflamation never left. The area around my eye has permanent burning itching sensation. My doctor prescribed a drug called Gabapentin this has helped me greatly to deaden the sensation. I only take it when it gets bad , typically when I get tired , stressed etc. Suggest you ask your doctor it may help smile

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  • Posted

    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?

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    • Posted

      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!!!

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    • Posted

      Hi I was looking through the shingles posts trying to find out as much as I can from people that have its stead of what text books have to say.  My husband started getting shingles a few years ago 

      He thought it was a kidney stone then a spider bite. He wasn't on our area and was away at work with no doctor. He went to the pharmacy for a ointment and the pharmacist said it is shingles. 

        He never had it before and didn't know what the symptoms are. The pain he said was terrible.   We looked online to see what he could do and many people were saying to take vitamins to halt it and if you think it's comMing back then take vitamins to stop it from getting a start. Once it's to the point he had it (days maybe a week ). The vitamins can't make it go over night but reduce the duration. 

        The main thing is to take them at the beginning of what you think might be shingles. 

      The virus lives in your spine and affects the nerve endings. It follows the nerve when it start to flare up.  B-12 is important for the nerves!  1000 mg 3 x a day

      Vitamin C for fighting infections but at a higher than normal dose

      1000 my 3-5 x a day

      Lysine. I don't remember the dose but I think it is 3000 mg a day in divided doses   After the out break is over maybe a week or so. Don't take that high of a dose

      Zinc.  I think this should only be taken at the RDA amount

      We recently found that olive leaf extract is good for this. So o made a paste with raw honey and applied it a few times a day with tea tree oil also in the mix 

       

      You can take olive leaf capsules also. A company named olivus is supposed to have a very decent product. 

       My husband keeps all of these vitamins and his travel bag and he tries to keep them with him because when he works away he works in extreme heat with very little sleep and long hours that seems to be a trigger that pushes it into another outbreak but lately it seems just as he starts running low on the vitamins he gets a call to leave ASAP   Then he doesn't have hints and when he gets an outbreak it's too late to take vitamins. It does help but it has to be the first tingle in his kidney the first sharp shooting pain through his back the signs are there if you've had it. 

      If you make a paste with raw honey it has to be raw unfiltered honey with all of the benefits. Other honey doesn't work. It is messy so it's got to be covered and you sort of can't go to work with it on. But if you take the capsules at the first signal that it might be shingles you can avoid the worst part from happening 

      Also Argenine some how is connected with Lysine and have to be in balance. And nuts contain high amounts oF.Argenine 

      Do not eat foods with high arginine. Has a connection. But foods with higher Lysine are good to keep it away

      My husband is afraid of the vaccine because of what he read on side effects. So this is what he does. 

      I came on this site to try to find out if why I thought I had could be shingles but everything says you cannot catch shingles from anyone so it made me really wonder but the more I think about it the more I think it is shingles with out the blisters

       Last summer my husband came home from work and said he felt like he was getting a kidney infection or a kidney stone and I mentioned that's probably the shingle starting up and he said it can't be I don't think it is I told him to start taking his vitamins and he doodled around and didn't start taking them for about two days by that point the blisters had started to appear so I made the honey mixup with the all of leaf extract  and started giving him his vitamins men are not really into taking care of them self they just seem to not take their vitamins and you have to make them. I think it's a manly thing like they're too tough to get sick but once he has the blisters he's in pain so. Anyway I had started rubbing the honey mix on his blisters a few times a day

       I did not wear a rubber glove and at some point I wandered could I catch it but everything I had read says I cannot so for a few days I rubbed the honey mixture on his blisters 

      Maybe a week later I felt weak and tired with a headache. I sat in the chair all day too sick ish to do anything. But I didn't have anything that I could at was wrong with me. Then I noticed my face hurt on the one side. Like a person punched me and my eye and in my ear deep down and the facial bones were very sore. My face slim was too tender to touch and my hair hurt exactly down the part in my hair only on one side. If you can imagine your hair hurt. No one would probably believe me.  But th skin and hair was very painful.   I had no itching no blisters 

      No appetite and aching.  In a few days I noticed large pink patches on my face but under the skin  but not blisters.   Nothing made sense and the sr we use isn't all that good. He's not one to listen and seems vey clueless but he's the one I could afford with no insurance.   After more than a week it made sense   Pain only on one side terrible pain hair hurt skin hurt fever share shooting pain in my ear like shingles pain that my husband described.    I started taking the vitamins that he uses and I know that it lives in your spine so in the area of my spine that is close to my face. Upper neck. I applied essential oils that are known to kill bacterial a and viruses. Do terra make good oils.  Now brand and Hopewell essential oil.  The days I applied the essential oil the next day the pain would be very much less then a few days later I would forget to apply them for two days and it all would come back.  My days are full watching the grandchildren so I need to take better care of myself. But it was making some kind of sense    

      It eventually went away but I have a feeling I'm dealing with this again.  But pink patches and no shooting pain. Just pain in my face bones 

      Sick feeling

      Fever

      Tired beyond

      And eye pain. 

      Well I wish you luck and I hope this helps you.  Terrible when patients need to help each other rather than the Doctor helping. So many don't listen

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    • Posted

      Hi Apache. You can catch shingles from someone but the only way is by touching the blisters when they’ve burst and starting to heal. So if you put the honey on without wearing gloves then yes you could’ve caught it. Hope this helps. Helen. 
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    • Posted

      Dear Apache,

      If you never had chickenpox, you can catch chickenpox from the blisters of someone who has Shingles. You can never catch Shingles from someone, as Shingles starts only from the virus living in the person who already had chickenpox.

      I would add Vitamin D3 2000 IU daily to your husband's and your medicine list. Many people are low in Vitamin D3. You need D3 to build your immunity. Since I started D3, the frequency of the shingles episodes have decreased.

      I also believe in raw honey for all my skin lesions.

      Best Wishes

      Merry Juliana

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