Shingles, is this normal? And can I workout?

Hi Joe,

This is one time in which exercise is contraindicated. The more exercise and activity, the worse the pain and inflammation with Shingles.

Where exactly in your head is it?

I have had Herpes Zoster-Shingles in my right ear, mouth, and throat every three weeks for the past 24 years, plus my right scalp the last two years. I also had it in my right eye twice.

You cannot power through this disease. If you try to train for your cycling event, your shingles will get the better of you. You can end up with Post Herpetic Neuropathy PHN, or recurrent Herpes Zoster-Shingles.

You also need to get the pain under control. Clinicians are stingy with Opioids, but you really need it for this, as if the pain isn't controlled well within the first month, you are at a higher risk of having PHN. Believe me, I know this. Also, as it is in your head, ? trigeminal nerve, the risk for PHN is greater.

****You need to get your Shingrix vaccines.

I am a retired Nurse Practitioner in the States.

Best Wishes

Merry Juliana

Hi Joe,

As the lesions are on your scalp, I found that the following helped me:

Bactine (contains Lidocaine to numb pain) topically to area.

Flonase (contains corticosteroid to reduce inflammation to nerve endings) to area.

I used these two ingredients together 4-6 times daily the first two days, then tapered down. This helps with the burning on your scalp.

I also was on a medication similar to Gabapentin-Neurontin.

I also have used Oxycodone for the acute headache pain as the pain was excruciating.

I am on Venlafaxine, an SNRI antidepressant for the pain, as well.

Hi Sunni!

While I know you must be in terrific shape, the Herpes Zoster-Shingles virus doesn't care and is spreading misery all over your body. The smartest thing to do is to rest and sleep. Any activity or exercise stresses your body and can increase the pain, exhaustion, and other symptoms. The pain starts to peak in the second week of the disease. You cannot power through this disease. There is some reason your immunity has waned, and it is often stress.

Sunlight can often trigger the Herpes Zoster-Shingles virus.

I am going to send a letter with more complete information regarding Herpes Zoster-Shingles. There is information regarding diet, as well.

Also, please consider getting the Shingrix Vaccine.

Best Wishes.

Merry Juliana

Hi Sunni!

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 are loathe to prescribe opioids for the acute pain.

My first episode of Shingles felt like I was giving birth 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 24 years. For the past 2 years it has also spread to my entire right scalp. I have had it twice in my right eye.

The third ENT finally diagnosed it correctly.

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, often burning or lancinating

Itching

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 ofHerpes 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- Used in the UK

Difficult schedule of 5x daily

USE THE FOLLOWING: one 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

Can be difficult to wean off due to withdrawal symptoms.

Duloxetine-Cymbalta SNRI

Venlafaxine-Effexor SNRI

Amitriptyline-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 for Ramsay Hunt Syndrome etc

Numbs the skin's nerve endings

Corticosteroid Sprays Creams OTC

Decreases inflammation, soothes topical swelling,

pain

Cool Compresses/ICE.

(DO NOT USE HEAT-CAUSES MORE PAIN AND INFLAMMATION)

100% COTTON CLOTHING soft & allows the skin to breathe!!!!!

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, Shingrix 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.

It is my hope that this letter has helped you in understanding your disease and how to care for yourself.

Best Wishes,

Merry Juliana

Hi Merry.

Thank you for all your informative posts. This has helped me tremendously. My shingles started the weekend before Thanksgiving 2019. I had been to the dentist a week or so earlier. On that Saturday, I felt that I had a problem with a tooth...and, I actually called my dentist to make sure they would be in town during Thanksgiving just in case I needed to come in. However, the next day, that pain subsided and my face felt a bit tingly...I had no clue what was going on, but thought maybe it was some sort of sinus infection. It was nothing major seemingly, and I knew nothing about shingles....nothing. Little did I know that things were changing quickly, and that my life would be summed up into "life before shingles"/"life after shingles"...or, maybe it is "still shingles".

My lip started breaking out with what I thought were cold sores, and sores inside my nose, and inside my mouth-roof of my mouth and upper gums...and just a few sores along the back of my tongue... so I went to the local walk-in clinic to get immediate attention. I was prescribed Valtrex and prednisone. I remember such headaches and my face felt as if it were dripping....just like something from a horror story. I kept researching--knowing that doctors offices were closed for Thanksgiving...but I did get in to see an ophthalmologist right after Thanksgiving weekend. He noted that my shingles were confined to my nose, mouth, face area to my lower eyelid. My shingles are on the maxillary branch of the trigeminal nerve-right side. By December 7, the outward sores were all but healed, but those in my nose---so sore. And, I kept waiting for the numbness to go away....and I kept waiting...and I still am waiting. And, the itching...I have tried so many things to help. My dermatologist recommended Eucerin calming cream...which helps for a minute or 5...I have ordered all sorts of creams and potions. I have read your responses to Sunni...and I, too, enjoy dark chocolate, tea, coffee, nuts ...I have tried to lighten those and eat more fruits after learning about lycerin and argenine and foods from you. Almost all foods are uncomfortable to eat...I always feel much better after I brush my teeth after eating. I feel that the shingles are still active...but some say they are not active, and that I am experiencing neuralgia from the shingles, and that my nerves are damaged. I just wonder if you know...I am so sorry for the years you have suffered...it is all so disheartening. I have a large family...lots of little grands who live nearby. I love to spend time with them, but sometimes this numbness of my nose and upper lip and the burning in the roof of my mouth gets to me...foods bother me so. I turned 60 November 10 this past year, and had never thought about the shingles vaccine. And, with my condition now, would I even get a vaccine? I don't know if my shingles are still active, or if it is neuralgia, or both. And, does it ever go away? My dermatologist and dentist say that usually within a year, the neuralgia goes away. But I keep reading otherwise. It's so distressing, really. But, I do not like to complain. I know it could probably be worse...so, I hate to not be thankful that I am somewhat okay. My husband and family tell me that there is no appearance that anything is different by looking at me-but I think the right side of my face is still puffy or swollen. I just feel that doctors and dentists don't really have a clue. I have learned more by researching myself...and through your posts. Thank you very much for sharing your knowledge. I wish you the best.

Debbie,

I am so sorry to hear your story. It makes me nervous what might be in my future also. My doctor said that it is very important for me to get the shingles vaccine as soon as my case has healed. That it will prevent future breakouts. I am only 44 years old. But she can work with my insurance to get my vaccine even though I am under 50 years old. I recommend you look into that.

I will pray for you to get relief from your nerve pain.

best wishes,

Sunni

Thanks so much for your reply. I will definitely look into this...to prevent future outward breakouts is major. I know my outward shingles are healed. And, luckily, I do not have outward scars. I just wonder if the shingles is still active in my body, or if the numbness of my nose, upper lip, and uncomfortable feeling in my mouth is just from damaged nerves. I don't know who really knows.

Praying for you, too...you are so very young to experience this. Wishes for you to recover completely and live a long, fulfilled life. debbie

Dear Sunni,

A piece of chocolate will not trigger Herpes Zoster-Shingles. Nor will one nut. If you have excellent will power, that is fine. However, if you consume handfuls of nuts, you may be triggering recurrent Herpes Zoster-Shingles. It is the ratio of Lysine to Arginine that is important.

I am concerned you have vesicles on your eyelid, your forehead, and below your eye. You need to see an ophthalmologist to rule out any eye involvement. Please call today STAT.

Please let me know what happens.

Best Regards,

Merry Juliana

Hi Sunni,

FYI: That is called Hutchinson's sign, and know, that you don't need the tip of your nose involved to have your eye involved.

I am so happy your eye is not involved

Best Wishes,

Merry Juliana