Sharing my experience - recurring shingles
Posted , 285 users are following.
I'm a 35 year old female and have had recurring shingles for about 7 years which occurs anything from 3-7 times a year and occasionally back to back. It is always a small cluster of itchy/stinging spots at the base of my spine and thankfully, the only other symptom can be overly sensitive skin down the back of my thighs. It is the only 'illness' that I ever suffer from - I never get colds or other 'bugs' that seem to plague everyone around me. So, the main guidelines about shingles are very general and should not discount anyone who suffers from this if they fall outside the norm for the condition i.e. over 50, poor immune system, you only get it once, spots appear on the sides, chest or face etc. as I don't fit any of these but have had tests and confirmation.
My advice to anyone else who suffers from this is - do try to get antiviral medication like aciclovir as it will minimise the frequency of outbreaks, try the coldsore patches from the chemist (Compeed is the brand I use) - they can be costly but keep the area clean and covered to prevent spreading and definitely seem to clear it up more quickly and with less scarring and, finally, try not to touch the area at all outside of treating it. I have become good at recognising the early sysmptoms and the earlier I act on it, the less troublesome it is. I have also made a connection with using sunbeds as a couple of outbreaks have occurred shortly after using one so minimise UV exposure of the area (not usually a problem when it's on your bottom!). Hope this helps.
35 likes, 501 replies
carol72074 Guest
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Aunt_Sue carol72074
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Sorry to hear of your recurring and upsetting monthly recurrence of shingles. Valtrex is not the only antiviral medication on the market, and you should discuss with your doctor the option of an immunology work up and referral. Have you tried taking Lysine? All is not lost, Try not to despair. Keep at your physician, reduce your stress and try to get enough rest. Bless you, I hope you get some relief soon.
Regards, Sue
mayj19006 Guest
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I am glad you posted your information... I have experienced almost the exact same symptoms. With the break out at the base of my spine I also get it on my left butt cheek. I too am a healthy individual, only get colds every now and again. Although I cannot help but think the breakouts are a symptom of a larger, hidden problem. I'll try the cold sore patches. Never knew they existed.
thanks
Kcs36 Guest
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Thanks for sharing, I'm 36 and I've just started to look into this I've been suffering from shingles outbreaks a few times a year for the last 15 plus years always the same spot on my lower back everytime. My dr actually told me he think I have herpes and that it just presents itself on a different part of my body and not genital. I'm not happy with the herpes diagnosis as I've never had any symptoms of the std just the shingles virus.I understand they are from the same viral family but definitely looking for more information!
drme Guest
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Stay away from the tanning booths.I got my first bout of shingles from a tanning booth,thought I had second degree burn on my butt,went to three Drs. before I was properly diagnosed with shingles.I have been dealing with this for 15 years now.i am 40.i want to share what I have learned and dos and don'ts..it affects one side of your body, usually along a nerve path, it is the herpes zoster(chicken pox) virus that lays dormant in your spine until something traumatic happens .Every bout I have gotten ( and they have gone from once every six months to once every three years) has been during a time when i have worn myself out and was stressed( this makes you more susceptible to an outbreak)and then some sort of trauma to the affected side that runs along that nerve path.Things that has triggered it have ranged from surgery on my right foot,getting a smack on my right butt cheek, sleeping in g string panties with jewels on them to sitting on a hardwood floor for extended period of time wearing pants that have metal buttons on the back pockets.Every instance starts with a weird sensation on my right butt cheek and then the horrific itching..do not scratch..if you must get relief run the shower on a high pressure setting and let that scratch the itch for you..you want to dry up the blisters as soon as you can.i alcohol wipe the affected area then apply straight tea tree oil on it wearing vinyl gloves then a large gauze pad.do not use first aid tape, when you pull it off it will leave a new bunch of blisters along where the tape was( if needed use the paper tape for sensitive skin)..it can spread..wipe toilet seats with alcohol if possible, wear gloves when cleaning the area, do not itch it under any circumstances, and it will dry up scab over and finish its cycle..it has left purple scarring but they fade over time.i hope this helps, I remember feeling helpless,embarrassed and frustrated with the the misdiagnosis and disinformation, wondering why I had to get some gross itchy rash on my ass that no one could give me any treatment or information about.. The worst was having to tell someone your with" hey I don't want to get naked with you tonight because I have Shingles"..couldnt they have at least given it a better name? I hope I helped someone who is going through this because it is a crappy thing to have to go through over and over again, but it does get better..just keep it clean, dry and try to catch it(with tea tree) right when you first feel it,don't try to convince yourself its not shingles again.keep a log of when it occurs and try to not do anything that might affect that nerve path.Good luck,you don't have to suffer for the rest of your life.oh and stay away from those vaccinations, those are bad news all around.
thinsport drme
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kaylee1394 drme
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Thank you for your help. But why is the vaccine bad? I've been wondering about that alot, please.
jane97743 kaylee1394
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jklochase Guest
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Hi all, I'm in the same boat shingles 10Xs a year for the last ten years. I always knew what it was but didn't go to the doctor until today and am trying anti virals for the first time. I'm looking forward to being more comfortable for the first time! I'm glad I found this group and it seems like this just happens and there may not be an underlying cause. I couldn't help but wonder if I had some other illness causing this to happen all the time. Besides being maybe a little tired sometimes I'm perfectly healthy. I enjoy reading everyone's posts and will be working towards a preventative diet. It's nice knowing someone out there understands as opposed to my family and friends thinking I won't shut up about that rash again.. thanks all
BlackBeauty6689 Guest
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Thanks A Million!!!
suzkpa Guest
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I am 57 and have been experiencing bouts of shingles since the year after my hysterectomy, always on my lower back. This year Ive had two much worse episodes, one in July and one Im currently recovering from. I get the post herpetic neuropathy all the time, but in proportion to the severity of the outbreak. This last shingles outbreak has been a nightmare. I was in the ER a week ago for severe pain; they gave me dilaudid. The blisters are scabbed over now, and the pain continues to run the gamit from medicated but present, to excruciating. A good part of my body from rear waist to thigh left side is numb with the outside edges dancing with different sensations. The lymph gland in my groin is numb and painful and itchy at the same time it is numb. This is way beyond what Ive ever experienced before, and Im on the couch with a heating pad after any exertion. Oxycodin is the only thing that touches the pain. I take 1 every 4 hours. It takes 90 minutes to kick in and I can feel the pain kick back in an hour before the next dose. So, for every 4 hour med I'm getting an hour and a half of semi relief. I am slowly improving. Im really, really glad to read this thread and now I dont feel either crazy or alone anymore. I am now terrified that this new level of shingles will happen again. I have Valcyclovir and my husband said he will make sure I take them at the first sign of anything. If only I didnt have neuralgia of some kind or other every day from all the previous episodes. Im afraid I'll be living on the anti-viral. Better than another trip to the ER I guess. If you read this far, thanks for listening.
david66285 Guest
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I am a 59 year old American male and have had shingles since I was 19. I guess one could say I am a professional at shingles since I have had over 100 breakouts. Its a total pain in the ass (no pun intended). On a high note its never all over my body, it comes in the size of a quarter and acyclovir knocks it out everytime. Use to only breakout once or twice a year, however in 2016 I have had 7 breakouts. Guess im getting older so immune system is getting weaker even though I am in very good health, eat organic, work out everyday, avoid arginine foods and eat lysine based foods, so very frustrated right now.
Yes stress will bring it on or over heating on a hot day. The sooner u get on the meds the better. Organic Apple Cider Vinegar applied to cotton balls and placed over sores accelerates healing. Essential oils melalucha, lavender and lemon work for me, but experiment as others may work better for your bodies chemistry.
Hopefully the studies on the Creosote Bush which is suppose to be 1000 times better than acyclovir will come forward with something soon.
Shingles by the way is a herpes based virus and yes you had to have chicken pox in order to have shingles. Dont be ashamed! I have a friend who breaks out with a big fever blisters on his lips 4-5 times a year, so he has his own hurdles to jump, but everyone can see his breakouts, also herpes by the way. My shingles are always on my right hip, by the way they say that it cant jump to the other side of your body, has never jumped on me.
Thank you for this forum guys! It feels good to express myself and let everyone in England know that we here in the states are fighting this too! Don't get down!! this will only have a negative affect on youir immune system. Keep fighting the good fight and Godd Bless.
suzkpa david66285
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Nohorse1 Guest
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I am so glad to find this place I w diagnosed with singles multiple times now I'm being told This isn't shingles, because I get smaller patches after 3 years of this but the pain is real.. I also have pain in back if head and stiffness of neck, so hard to cope with all of it since days. It helps to know I'm not crazy I wish Drs would learn more about it.
Thank you
carolyn74115 Guest
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Glad to hear someone has experienced it in same place as its unusual.
suzkpa carolyn74115
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Ive read more than once that it is a healthy woman's disease. I had a full workup this fall and except for losing some weight Im in great shape. Yet, I am bumping out a new blister as we speak, and the last one came out on 11/11/16. That one sent me to the ER in severe pain. That was the first time in nearly 20 years of shingles outbreaks it was so bad. I am kind of terrified that it is increasing in severity. I did take Valcyclovir tonight and some B-12, in the hopes the blisters wont emerge fully. I have clinical anxiety, panic and PTSD issues and I know that is where they come from.
tiffany60896 suzkpa
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I just notice your post. I, too, was very healthy before I got shingles. I like your term the shingles is a healthy woman's disease. I had no health issues before I got shingles and now the nerve pain afterwards. You mention you have been diagnosed with anxiety and panic attacks and you think that your shingles seems from those. I found this comment helpful because I have a lot of problems with stress, anxiety and panic attacks.
I think that these are making my post shingles nerve pain worse. So, I am trying to focus on controlling my anxiety and panic attacks in hopes that will lessen my nerve pain. I do think that emotional problems and anxiety weaken our systems and allow all illness and pain to worsen.
suzkpa tiffany60896
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Hi Tiffany. Thanks for responding to my post. One thing I have become even more conscious of is my diet. Im trying to lessen the carbs and gluten. Trying to decrease portions. I am also trying to avoid triggers, although that means I spend a lot of time at home. I don't mind it, being retired and a homebody. Strangely, my outbreaks come about 4 times a year, near the solstices/equinoxes. Not right on them, but something about changing seasons seems to coincide with their appearance. I haven't had another outbreak since fall, but that time the nerve damage was so severe that the healing process is taking a while and is also somewhat painful. We'd spent time at the ocean so it might even have been the sunshine. I have a kitty who doesn't understand why she can't stand on that thigh, but we make it work. I agree about the emotional problems and anxiety being their own triggers. It is a battle for me because I have a mood disorder and Feb is my worst month for a myriad of reasons. So, yesterday I melted down, and today Im hoping (praying) it doesn't trigger me. Anyway, no self-pity!!! Trying hard to keep moving forward. Art helps, in any form, to take you out of your head and into a great, healthy zone. Its one of my coping mechanisms. Plus, my baby is getting married in Sept and I want to be tip top for that! Thanks again for your response Tiffany and I wish you all the best.
tiffany60896 suzkpa
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Hi suzkpa,
I appreciate your note. It came at a perfect time because yesterday and today, I have been having a meltdown. Your mention of "triggers" makes a lot of sense to me. Since getting shingles and the nerve pain that follows, I have become much more fragile emotionally. I think long term pain can cause extreme anxiety at least it is causing me a lot of panic. Since I don't feel like going out socially because I am in pain and my energy is depleted and I live alone, I think I focus too much on my illness and pain. I had to take a leave of absence from my college teaching job so all I do now it seems is sit at home and worry--I start thinking that I will never be well, that I'll be unable to live a normal life and then all the negativity overwhelms me. Your description of "hoping and praying" that certain things don't trigger your panic sounds a lot like me.
You're right that art helps--watching films, listening to music, writing, reading and focussing on positive thoughts all help ease pain. But, it is so difficult sometimes for me to be strong and work on staying healthy every second. You are so right that diet is extremely important. I was eating tons of sugar and chocolate just before I got shingles. I have cut sugar out completely now--but it is hard to avoid sugar and carbs sometimes when I am feeling really self-pitying.
What I have to believe is that my nerve damage or pain will someday lessen to the point I can live a somewhat more normal life.
I got shingles in early November and had it for about four weeks to six weeks. The severe nerve pain didn't really start until mid Decemeber 2016. So, I guess I have had the post neuralgia for like eight weeks or so. But, it feel like forever.
I hope you feel great for your child's wedding in September. My goal is
to feel well enough to go back to teaching college for the Fall semester 2017 the end of August. At this moment, I can't muster up the optimism to believe I will make my goal of teaching college again. But, somedays are better than others for me in terms of thinking optimistically. Good luck to you. I wish you a speedy recovery.
tiffany60896 suzkpa
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suzkpa tiffany60896
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I'm not sure if I mentioned that nerve damage is incredibly slow to heal. Nerve endings grow about 1/4 inch a year...a snail's pace! I had reason to study nerves and their diseases when my first husband was stricken with ALS. We couldn't help him, but I learned a heap about nerves. Please be encouraged to know that your nerves are healing as we converse, it just takes so long that you can barely tell sometimes. I hope this helps to give you more confidence that your life will return to something more normal. My very best hopes and wishes to you that you will resume teaching in the timetable you've given yourself.
tiffany60896 suzkpa
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