I Have Shingles!

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My name is Natalie, On May 30th I noticed a burning, tingling pain on my upper left leg (thigh) and hip and the next day there was a bit of a rash. I went to the hospital where I was diagnosed with Singles. He put me on anti viral 800mg 5x a day. It is about day 6 now, and the rash is still spreading, all around my left leg, tight around to my back, I am in pain but no where the pain I hear people talk about, will it get worse, especially since the rash is still spreading everyday?

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  • Posted

    Hi Natalie,

    Very sorry to hear that you have shingles. I certainly know what you are going through as I had it a little over a year ago. It's hard to say if the pain will get worse or not. Everyone is different. Did the doctor give you a pain killer? I had a mild case but the night before I went to see the doctor I was in agony. Once I started on the anti viral and the pain killers I was able to deal with it and it wasn't as painful as that first night. So my recommendation is to talk to you doctor and also talk to him about getting the Shingles vaccine (Shingrix), as shingles can come back again and again. Once it goes away I think you have to wait at least 2 months before getting the vaccine. So talk to your doctor and see what he says.

    Good luck to you and I hope it doesn't get any worse!

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    • Posted

      Hello Sandi,

      Thank you for your reply. Yes, actually I had a dr's appt today and he put me on gabapentin. I only take 100mg 3 times a day. Yes, good advice thanks, I will definitely talk to him about the vaccine!! I think I got Shingles because I already have a low immune system due to a rare autoimmune disease called mesenteric panniculitislitis. Thanks so much for taking the time to reply, I really appreciate it 😃

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  • Posted

    Hi Natalie,

    Sorry you are going through this. Thankfully, you went to the doctors and it was diagnosed accurately. The pain can definitely increase markedly through the second and third week. However, as you were started on an antiviral promptly, it may not be as bad as some individuals.

    The pain depends on a lot of factors:

    Your AGE, your own body's ability to fight off the Herpes varicella virus, other diseases you might have such as autoimmune diseases, diabetes, IBD, Cancer, Asthma, COPD, your level of stress, the virulence of the virus, etc. Also, you absolutely need to REST AND SLEEP and SLEEP AND REST.

    You cannot power through this. Please take off from work. If you have small children at home, ask family and/or friends for help. I am the voice of experience. I was a 44 year old divorced single mother, was not diagnosed properly, not started on antivirals, had no help with my young son, writhed in pain for six weeks, and have had Herpes Zoster-Shingles in my right ear every three weeks for the past 23 years.

    I am going to send you my post on treatment and management of Herpes Zoster-Shingles.

    Best Wishes

    Merry Juliana

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    • Posted

      Hello Merry,

      Thank you for your reply, means a lot 😃 I just turned 45, grown kids, and yes, I have been sleeping more lately, I feel exhausted. So sorry to hear about you not being diagnosed properly nor right away, That is awful! Supermom is what I'd call you wow! I can't believe you have to go through this that many times, my heart goes out to you 😦

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    • Posted

      Natalie,

      I read that you have mesenteric panniculitis, an autoimmune disease. Are you in the UK? If at all possible, please get Shingrex. You are at a much higher risk for getting recurrent Herpes Zoster-Shingles.

      Thank you for your kind words. You and I are about the same age when I had my first episode! I also am immunocompromised. I learned what to do with recurrent episodes, and as I was poorly treated by two ENTs who thought I was narcotic seeking ( I never asked for Opioids, just a diagnosis, which they couldn't figure out, BTW), I am extremely active on this venue. I never want anyone to go through what I went through. My asthma doctor, internist, and Otoneurologist were wonderful, however.

      Hopefully, you are getting enough pain relief. Physicians are reluctant to prescribe opioids, but shingles is one of the most painful afflictions of mankind.

      Best Wishes.

      Merry Juliana

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  • Posted

    ive got the same thing without the rash . burning tingling sensitivity and numbness in left thigh. horrible lymph node pain in left side next to breast . have appt at neurologist but not for a week ... dr said with no rash hard to diagnose... think may just go to ER been suffering 4 weeks now .

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  • Posted

    I am so sorry you are suffering from this disease. Herpes Zoster-Shingles is more than a rash and some pain. For many, it can be a life-altering disease with implications for the future.

    This post is meant as a guide regarding the course, treatment, and management of the disease. It is not a substitute for the accurate diagnosis and treatment by a clinician.

    I am a Nurse Practitioner in the States. I have had Herpes Zoster-Shingles every three weeks in my right ear, mouth, and throat for 23 years, and more recently extending to my entire right scalp. I have included the knowledge I have learned from the wonderful friends on this forum.

    You cannot catch Shingles from Shingles. You can infect an individual who has never had chicken pox from an exposed shingles rash with chicken pox. The “varicella virus naïve” people would include the babies in utero of pregnant women, unvaccinated children, immunocompromised individuals, and anyone who has never had chicken pox. Remember, often times, a pregnant woman often does not initially know she is pregnant.

    Shingles is the reactivation of the varicella virus when your immunity had waned.

    PRE-ERUPTIVE PHASE

    The Pre-Eruptive Phase includes the following:

    Sensory phenomena along 1 or more skin dermatomes, lasting 1-14 days. Mine lasted 21 days before the rash appeared!

    Phenomena usually are noted as pain or, less commonly, itching, or tingling.

    The pain may be preceded and /or accompanied by the following symptoms: headache, swollen lymph nodes, photophobia, aches and pains, chills and sweating, mild fever, exhaustion, fatigue, and malaise.

    ACUTE ERUPTIVE PHASE

    The Acute Eruptive Phase is marked by:

    Patchy redness, occasionally accompanied by hardness, in the dermatomal area of involvement.

    Swollen lymph nodes adjacent to the rash

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

    The skin findings typically appear on one side of the spinal cord, stopping abruptly at the midline.

    Vesicular shrinkage: Vesicles initially are clear but eventually cloud, rupture, crust, and shrink.

    After vesicular shrinkage, slow resolution of the remaining red plaques.

    Almost all adults experience pain, typically severe. The pain is described as burning, lancinating, excruciating, agonizing, electric. The slightest breeze can set off agonizing spasms of pain.

    A few experience severe pain without a rash. This is called “Zoster Sine Herpete!” Many physicians fail to diagnose this as Shingles!

    Symptoms tend to resolve over 10-15 days, but can take much longer! Complete healing of lesions may require up to a month.

    Please note:

    Shingles can recur many times, can occur on both sides of the body (right and left) and on multiple dermatomes!

    Many physicians are unaware of the above paragraph.

    Shingles occurring in the head, ie eye and ear and scalp can cause more devastating consequences.

    POST HERPETIC NEURALGIA PHN

    Post Herpetic Neuralgia PHN is defined as persistent or recurring pain lasting 30 or more days after the acute infection or after all lesions have crusted.

    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 Ophthalmicus (HZO), Ramsay Hunt Syndrome- Herpes Zoster-Shingles Oticus, and in instances of upper-body Shingles dermatomal involvement.

    TREATMENT and MANAGEMENT

    Antivirals are the Cornerstone of Treatment!

    Famciclovir 500 mg 3X daily 7-10 days Most Efficacious Antiviral Least Resistant to Varicella Virus Easiest to Swallow Easy Dosing Regimen

    Valcyclovir 1000 mg 3X daily 7-10 days Related to Acyclovir Some Resistance to Varicella Virus Difficult to Swallow for some Easy Dosing Regimen

    Acyclovir 800 mg 5x daily 7-10 days Oldest Antiviral Most Resistant to Varicella Virus Difficult Dosing Regimen

    For those in whom the rash is still spreading, or the antiviral didn’t seem to work, you need to see your physician, NP, PA ASAP and demand a different antiviral and another week to 10 days of the antiviral. The longer duration of a continuation of an evolving rash and/or agonizing pain occurs more often with the head, and those who are immunocompromised. The virus has become more virulent in some, and can be resistant to Acyclovir.

    ANALGESICS

    For pain control of the excruciating pain that is Herpes Zoster-Shingles, you often have to combine a cocktail of oral medications and topical medications and treatments to work synergistically.

    OPIOIDS- Still the most effective painkillers for acute pain

    • Oxycodone

    • Hydrocodone

    • Codeine

    ANTICONVULSANTS

    • Gabapentin-Neurontin

    easier to wean off of than Lyrica

    with less side effects

    • Pregabalin-Lyrica

    ANTIDEPRESSANTS

    • Cymbalta

    • Venlafaxine

    • Amytriptylline-Elavil

    • Pamelor

    Please note: the dosage of the anticonvulsants and antidepressants need to be titrated up to work effectively! You need to be seen many times for evaluation of your pain.

    Often the pain of shingles increases in the second week!

    Ask for a referral to a Neurologist or Pain Management Specialist.

    OTHER MANAGEMENT TIPS

    • ICE OR COOL COMPRESSES- effective in decreasing or numbing the pain, hot showers often increase the pain.

    • Lidocaine or Benzocaine creams, ointments, sprays, patches help numb topically. You should use 12 hours on, 12 hours off, so that the nerve fibers do not become conditioned to the use and stop working.

    • Corticosteroids creams or sprays to reduce inflammation, use low potency

    • Cotton clothes light weight to allow your skin to breathe.

    • Do not wear synthetic clothes over your rash as they often do not allow your skin to breathe.

    • Cover your rash when in public to avoid transmission of chicken pox.

    • You need to rest and sleep!!! You cannot power through this disease! Take off from work! Ask family and friends for help! Exhaustion, Fatigue, and Depression usually accompany this disease.

    • Get the Shingrex Immunization

    US Available for:

    Individuals who have had Shingles

    Individuals 50 and over

    UK 70 and over

    • Google High Lysine Low Arginine Diet and Herpes. The amino acid Lysine is protective in preventing recurrent Herpes Zoster-Shingles, and Arginine triggers Shingles. Chocolate and Nuts and Legumes are High in Arginine!

    • Sunlight and menstruation also are triggers for recurrent episodes of Herpes Zoster-Shingles.

    I hope this helps you. If you are having frequent episodes of Herpes Zoster-Shingles, please get yourself evaluated.

    Best Regards,

    Merry Juliana

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  • Posted

    Your welcome

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