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
daryl86518 Guest
Posted
I am currently 47, a veteran of the first Gulf War and have had recurring shingles since the late 1990's. Other than genetically predisposed to high cholesterol, blood pressure and triglycerides rarely get sick and have no other health problems.
daryl86518 Guest
Posted
I am currently 47, a veteran of the first Gulf War and have had recurring shingles since the late 1990's. Other than genetically predisposed to high cholesterol, blood pressure and triglycerides rarely get sick and have no other health problems.
lauramcg1993 Guest
Posted
Hi everyone!
I am 23 years old and I think I have been suffering from reoccurring shingles since I was in high school!
None of my doctors have been able to give me a dignosis and have treated me for impetigo, herpes simplex virus and have gave me numerous creams which have never helped to clear any flare ups!
Eventually I have been to see a dermatologist who wanted to test my next flare up which has taken 6 months to appear! Typical after having a flare up 5 times in 6 months prior to my appointment.
Anyways went to get it tested the other day and the nurse that was doing the test asked me if they had ever said to me about it being shingles? Never has a anyone said to me it's shingles. But after reading this discussion I am beginning to think otherwise cause all my symptoms are similar!
I know when I am getting a flare up cause if it's on my thigh, arm, finger, face I get unbareable pain for days before the red mark appears then followed by the cluster of blisters which is agony for days until they begin to go down and start scanning over.The dermatologist said he didn't think it was HSV cause I was getting it in so many different areas.
Can't believe that after all these years and all doctors I have seen it's took one nurse to see it and pin point the problem. Hopefully I will get some results through the door soon and get this diagnosed eventually!
In the meantime any advice would be great that could help me
thanks!
Likespink45 Guest
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Reoccurring shingles is the absolute pain of my life I can tell you! And the worst of it is the GP's are so uneducated, well the entire medical profession is. I literally have to convince everyone that it's shingles. It's crazy! Like everyone else, symptoms the same and my old doctor who was amazing has recently retired so I've left with a bunch of muppets who look at me like I've said something stupid like: I've had shingles 50 times in the last 7 years! The truth is that is the case. I've just had two episodes back to back in less than two weeks, awful 😰😭. Like you all, I know my triggers; sunbeds, alcohol if any of you haven't worked that out yet, lack of sleep, stress etc and a new one I've worked out, nylon or tights which is hopefully not affecting too many men🙈😂.
I have been shingles free for a week but not pain free because after all this time I'm left with PN terrible nerve damage
It's lovely to hear that there are more of you out there. I always knew I was pretty special, although I never quite imagined it would be in the 5% or tj population that suffers from reoccurring or chronic shingles.
We have to laugh about it hey.
Thanks for listening x
Ochio1234 Guest
Posted
Over 12 years, I have had numerous recurrent episodes of Shingles on the top of my head under my hair. It was not diagnosed correctly because out of 11 Dermatologists, an infectious disease Doc and Pain Management Doc ALL said it couldn't be Shingles because it is on both sides of the midline of my scalp and as they say "Shingles are usually on one side of the body" (NOT). So I was never treated or assessed properly. When the excruciatingly painful deep rash did not go away after a YEAR ... a Dr. friend suggested I get a biopsy. After full assessment ...the biopsy showed only as active Shingles (a year later). I continue to experience a resistant attitude" every time I see a Dermatologist. The rashes remain long periods of time and don't heal quickly ... the scabs are so DEEP.
After that first outbreak 12 years ago, I have had maybe 4-5 outbreaks and they last months ... awful. I have had to take lots of prescription pain meds which aren't that helpful for nerve pain. My state has just passed a legal medical marijuana law and I have been taking it. It seems to be helping a bit, but am told that it can take months to take full effect.
So YES ... it can recur AND it can appear on both sides of the body. Any Dr. who disagrees with this is NOT keeping up with medical findings.
I am 65 years old and otherwise very healthy. I am NOT immunocompromised. Stress is an absolute trigger ... I have had to work very hard to keep stress down. Sun is another trigger ... plus heat. A few hours in a kayak WITH a hat on was enough to trigger months of misery with another outbreak. In Fla., just sitting outside under a covered roof made it start flaring up. So this Fla. gal lives in a/c and always wears a hat.
The antiviral medications do not seem that powerful for me but I take them anyway. On the maternal side of my family there is a predisposition to Shingles ... but otherwise, they live healthy lives into their 90s. When I explain this, Doctors seem to "get it" that I have a genetic weakness and this is the cause.
I have pursued many options and practitioners with little help. I've spent a ton of money and problem still remains. My hope is that the CDB in the legal medical marijuana will build up in my system and not only resolve the pain ... but strengthen my resistance.
I googled what is a natural oil that is closest to skin oil. My poor head is so dry and damaged. Jojoba was the consensus. I bought organic jojoba oil (Made by Badger products) ... and have saturated and softened my scalp with it on for 2-3 days. It is very soothing.
Likespink45 Ochio1234
Posted
I feel your pain. I really do!
The pain from shingles is awful and you are right heat and sun is a major trigger along with stress. In he last 7 years, the longest I have gone EVER without an outbreak is 6 weeks. Reading everyone's posts on here makes me feel so much comfort. I sometimes feel so alone and it's so hard for my family and friends to understand. How can these small clusters of spots cause SO MUCH PAIN. My legs (s) are on fire, tingling, shooting pains and I can hardly walk on days when the flare is bad.
Not sure what we can do to ever make this better.
I take amitriptalyn, Topamax and that helps with nerve pain and tramadol which isn't good I know but I struggle to cope with the pain some days. Apart from that I take over the counter meds. I've tried acupuncture with some success. Sauna is a big no no
I've tried exercising and if I get the balance right it can be good. If I do too much it hurts. Too little I hurt.
On a positive, I'm not alone 👍🏼
hermagan Guest
Posted
I am going crazy! I have bee having recurrent shingles more than 20 times for the past 10 years!. It started with once a year then twice a year then 4 times a year till recently I had 3 outbreaks in past 2 months. It is always on my left arm. The skin doctor that I have been seeing for so many years keep telling me nothing can be done except to just avoid being stress. I couldnt take it anymore and dont't know how else I can reduce my stress. Took a drastic measure by resigning from my job that I had for more than 10 years. All the doctors I visited said tt no point for me taking the vaccine as it is obvious my body do not build any antibody to fight against it. Can anyone please please please help me??
Likespink45 hermagan
Posted
I really feel your pain. It sounds very similar to my situation. Sometimes there is no reason for a flare up. Stress, poor sleep being unhappy and arguing with my partner can bring on a flare.
Also wearing tight clothing, tights as I said in my post and also hot baths.
It's a minefield it really is. I've been taking magnesium, calcium and zinc as well as B and D vitamins and I've gone 2 weeks without a flare. Fingers crossed this is all helping me. Not sure if that's the reason but after reading about it this is what I've found
Sending a hug
Xx
david66285 hermagan
Posted
I am a 59!yr old male and have had shingles since I was 18. Have had over 100 breakouts in that time. Broke out 7 times in 2016 up until then twice a year was normal. So I figured my immune system was getting old and worn out. This year I have had One breakout so I thought I would share what I have done.
1. Stopped drinking alcohol during week, just on weekends.
2. I do deep breathing exercises morning and night.
3. Make sure u get a minimum of 8 hours of good sleep.
4. In the morning I take Zija XM, 30 mins later I take 1000 mg lysine. I make a green smoothie with kale, spinach, turnip greens, avocado, apple and ginger. Then have 2 organic eggs on quenea.
5. Work out everyday at lunch including 20 mins of cardio. Builds immune system.
6 stay off arginine foods and get on lysine rich foods. Google it!
If a breakout occurs apply essential oils lavender, tea tree, or lemon with a little coconut oil. Organic ACV is a good topical also.
Get on acyclovir immediately. The sooner the better. It's cheap and works! Be sure to take whole subscription!
Shoe_Lady david66285
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david66285 Shoe_Lady
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charlotte02730 Guest
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I am a 26 year old female who has been suffering with recurrent shingles for the past 7 years. I was wondering if anyone here has experimented with herbs for this condition? I recently discovered lemon balm (Melissa Officinalis) can reduce the severity of outbreaks and prevent it from recurring (have a look at some of the published academic papers on this). Has anyone else had any success with herbal remedies? I am worried about develping a resistance to Acyclovir as i have to take it so often...
Shoe_Lady charlotte02730
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david66285 charlotte02730
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Ochio1234 david66285
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I found jojoba oil to be much more enriching than cocoanut oil. Organic. I Googled what natural substance is most like skin oils ... and jojoba was the overwhelming response. Very soothing. Some can be quite greasy so cover with bandage so you don't smear it places you don't want it to go.
david66285 Ochio1234
Posted