Keep getting shingles

Posted , 7 users are following.

Hello, I'm new to this community. I stumbled across this forum when searching for others with similar problems.

I first got shingles when I was 10 or 11 years old I believe, didn't get it again until I was about 13, and have been getting it 2-3 times a year, if not more, I'm now 22 (male). So I believe I've had it close to 30 times.

My whole life, I've never heard of anybody getting shingles like I do. When googling, I always see articles and videos claiming it's incredibly rare to get it twice, how rare it is for young people to get it, how it always stays on one side of the body and in one area. None of this is true for me.

I've had shingles in 5 different areas total, 2 different areas on the right side of my neck/top of shoulder, 2 different areas on both the left and right side of my mid back, and occasionally directly over the center of my lower stomach.

The outbreaks on my neck and back usually come with deep muscle aches, intense itching, burning, tingling, they usually take about 2-3 weeks to go through the full cycle, they have varied a great deal in intensity, they are usually contained to about a 4 inch diameter, it is usually spaced out every 3-6 months.

The outbreaks on my stomach were larger, and were accompanied with severe flu like symptoms that left me shaking with extreme body aches, fever, unable to get out of bed for days, on top of the usual symptoms.

The only pattern I've realized, is that if I get a sun burn on my neck it's very likely my shingles will outbreak there. Even then, I still get outbreaks in that neck area without sunburns. The other 3 locations I have no idea what triggers them.

I don't have insurance, I have no access to health care of any kind... just can't afford it. The only treatment I use is dabbing tea tree oil on it with hopes to dry it out. The only time I saw a doctor was when I was 14, they took a sample and confirmed it was shingles, I was never told I had any auto immune disorders, but I'm not sure if they checked for any either.

At my age, with how sporadic and frequent my outbreaks are, I have great anxiety that it will one day damage my organs, or eventually will break out on my face damaging my sight or hearing.

I know there's not many solutions for this problem, I appreciate anybody taking their time to read, Just feeling hopeless.

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  • Posted

    Good morning Nick! I don't think I will be of much help other than to offer a prayer for you. I do not understand why someone so young has to be going through something like you are! And I am so sorry. I have a grandson your age and love him so much and it saddens me to think that it could be him going through what you are.

    I came down with shingles two years ago and I have had the nerve pain every since on my back right shoulder. It stabs and burns always and wears me down. When I got shingles I was fortunate enough to have insurance and get medicines right away. I have also had the newest shingles vaccine to hopefully keep me from getting an outbreak.

    This is a really good forum that you have found here and I do feel that others will reach out to you here. I remember a nurse on this forum reaching out to me with valuable information. Please hang in there and know that you are loved.

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  • Posted

    Hi Nick, just read your post and really feel for you! I have only had shingles the once..a few years ago..and that was from my scalp down right side of my face..eye,nose in mouth..to jaw. Worst thing Ive ever had. Tried everything to ease the burning etc but nothing seemed to work. I try hard not to get stressed as supposedly that doesnt help. Its not always possible of course. Ive been left with PHN which for me is a constant reminder that i once had shingles but i live with it knowing things could be a lot worse. With the amount of times youve had shingles Im not suprised you suffer with anxiety. Just knowing its possible to get it again makes me feel a bit anxious and Im not old enough at 65 to get the jab. Have to be 70 here.There is a nurse practitioner called "Merry" on this forum who often gives people lots of good advice regarding shingles who may be able to help you. She has had recurring shingles for many years. Sorry to read you're feeling hopeless. Never give up hope. All the best.

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  • Posted

    Dear Nick,

    I will be posting later this morning, but to give you encouragement, there are positive steps you can take to help prevent Herpes Zoster-Shingles.

    May I ask where you live?

    I am a retired Nurse Practitioner in the States

    Merry Juliana

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    • Posted

      Hi Nick!

      Do you take Antivirals when you have an episode? Are you aware of Federally Funded Clinics for the underserved? Usually, you pay by sliding scale.

      HERPES ZOSTER SHINGLES

      I am so sorry that you are suffering from this disease. Unfortunately, there is a lot of misinformation among health professionals. Many health care professionals are abysmally ignorant regarding the diagnosis, the signs and symptoms of the disease, and the treatment and management of the disease. They loathe to prescribe opioids for the acute pain.

      I had my first episode 23-1/2 years ago in my right ear, mouth, and throat. It took three ENTs to diagnose it. It felt like I was in childbirth via my ear canal while being tased!

      I have had Herpes Zoster-Shingles in my right ear, mouth, and throat every three weeks for the past 23-1/2 years. For the past 2 years it spread to my right scalp. I have had it twice in my right eye.

      Because I suffered so much with the disease, I am extremely active on this forum. My goals are to educate, support, and advise the people. I have learned so much from many wonderful individuals on this forum. I am a retired Nurse Practitioner in the States.

      There are three stages to Herpes Zoster-Shingles.

      THE FIRST STAGE-ACUTE STAGE PREERUPTION

      Pain

      Patchy redness

      Swelling, in the dermatomal area of involvement

      Swollen Lymph Nodes, either at this stage or subsequently

      Constitutional Symptoms

      Headache

      Photophobia

      Aches and Pains

      Mild Fever

      Chills

      Fatigue

      Exhaustion

      THE SECOND STAGE-ERUPTION

      Grouped herpetiform vesicles-blisters developing on the red base (the classic finding)

      The vesicles come in crops or waves over a period of

      usually 5 days

      Skin findings that typically appear unilaterally, stopping abruptly at the midline

      Vesicular involution: Vesicles initially are clear but eventually cloud, rupture, crust, and involute (shrink)

      After vesicular involution, slow resolution of the remaining

      red plaques, typically without visible sequelae

      Scarring can occur if the skin has been compromised by

      excoriation, secondary infection, or other complications

      Almost all adults experience pain, typically severe

      A few experience severe pain without a vesicular eruption (Zoster Sine Herpete)

      Symptoms tend to resolve over 10-15 days,

      but can last much longer

      Complete healing of lesions may require up to a month

      THE THIRD STAGE PHN

      POST HERPETIC NEURALGIA

      Persistent or recurring pain lasting 30 or more days

      after the acute infection or after all lesions have crusted (9-45% of all cases)

      Pain usually is confined to the area of original

      dermatomal involvement

      The pain can be severe and incapacitating

      Pain can persist for weeks, months, or years

      Slow resolution of pain is especially common in the

      elderly

      PHN is observed more frequently after cases of Herpes Zoster-Shingles Ophthalmicus (HZO)

      Herpes Zoster-Shingles Oticus

      (Ramsay Hunt Syndrome)

      and in instances of upper-body dermatomal involvement

      TREATMENT & MANAGEMENT

      Antivirals

      The cornerstone of treatment

      Should be started within three days of onset of

      symptoms or rash

      Famcyclovir 500 mg 3x daily 7-10 days

      Most efficacious

      Newest Antiviral

      Valacyclovir 1000mg 3x daily 7-10 days

      Less efficacious than Famcyclovir

      Large pill

      Based on Acyclovir

      Acyclovir 500mg 5x daily 7-10 days

      Most resistance to this Antiviral

      Oldest Drug

      Cheapest drug

      Difficult schedule of 5x daily

      USE THE FOLLOWING of each class together

      Anticonvulsants

      Gabapentin-Neurontin

      Dosages must be tapered up and down

      Effective as adjunct in acute stage and PHN

      Pregabalin-Lyrica

      Dosages must be tapered up and down

      Effective as adjunct in acute stage and PHN

      Weight Gainer

      Affects moods

      Difficult to wean off due to withdrawal symptoms.

      Antidepressants

      Dosages must be tapered up and down

      Effective as adjunct in acute stage and PHN

      Difficult to wean off due to withdrawal symptoms.

      Cymbalta SNRI

      Venlafaxine SNRI

      Elavil tricyclic

      ANALGESICS

      OPIOIDS

      Oxycodone

      Codeine

      Hydrocodone

      IF YOUR PAIN IS NOT WELL CONTROLLED WITHIN THE FIRST TWO WEEKS, GET IT UNDER CONTROL BY DEMANDING OPIOIDS.

      The pain often increases markedly the second week of the disease.

      HERPES ZOSTER SHINGLES IS ONE OF THE MOST PAINFUL AFFLICTIONS OF MANKIND SECOND TO CANCER AS IT INVOLVES NERVE PAIN.

      IT IS THE PHYSICIAN'S DUTY TO HELP THE PATIENT IN PAIN. OPIOIDS STILL ARE THE BEST OPTION FOR ACUTE PAIN.

      Gabapentin-Neurontin or Pregabalin-Lyrica can help decrease the neurogenic pain when used in conjunction with Opioids

      Topicals

      Lidocaine/Benzocaine

      Found in Bactine, Solarcaine, Oragel, Salonpas

      Auroguard, etc

      Numbs the skin nerve endings

      Corticosteroid Creams OTC

      Decreases inflammation, soothes topical swelling,

      pain

      Cool Compresses/ICE

      COTTON CLOTHING

      SLEEP AND REST

      You will experience fatigue and exhaustion and want to sleep. Obey your body. You cannot power through this. Take off from work. If you don't, it will only get worse.

      CONTAGIOUS

      Remember: your exposed rash is contagious to all individuals who have not as yet had chickenpox.

      This list includes all pregnant women and their unborn fetuses. Many women do not know in the early stages if they are pregnant.

      If someone has been fully vaccinated, they are protected. The unborn child is never protected.

      Cover your rash with clothing or a dressing.

      You are no longer infectious when every last vesicle-blister has scabbed over/ dried up.

      PREVENTION of SHINGLES

      Get the Shingrix Vaccine, a two part injection, taken 2-6 months apart.

      The efficacy is 93%

      1. It is available in the US at age 50 with insurance
      2. If you have had Shingles, and are in the US, it is covered by your insurance. Have your physician write a note stating you have had Shingles.
      3. In the UK, it is not available until age 70.

        ADDENDUM the Shingrex vaccine has helped decrease the intensity of pain of my episodes, but not decrease the frequency of episodes.

      High Lysine Low Arginine Diet

      Google High Lysine Low Arginine Diet and Herpes.

      The amino acid Lysine helps decrease Herpes and Arginine triggers Herpes Zoster-Shingles.

      If you binge on chocolate or nuts, and find yourself getting a horrible prolonged shingles episode after,

      it is due to the high amino acid content of Arginine in chocolate and nuts.

      You can take Lysine supplements, but there can always be issues with drug interactions, adverse reactions, and harm to the heart, liver, and kidneys.

      I hope this letter has helped you in understanding your disease and how to care for yourself.

      Best Regards

      Merry Juliana

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  • Posted

    Thank you Georganna, and Debra for the kind responses.

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  • Posted

    hey nick can you send me an email at

    Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

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