Shingles Support Group

Herpes zoster, colloquially known as shingles, is the reactivation of varicella zoster virus, leading to a crop of painful blisters over the area of a dermatome. It occurs very rarely in children and adults, but its incidence is high in the elderly (over 60), as well as in any age group of immunocompromised patients.

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CeeCee4 12/08/2018

I have had three bouts of shingles. I am 35 years old. First one in 2009 and the worst one. It came back every 4 weeks for 4 months. No doctor diagnosed me. I went in when I first got it is was in so much pain went to urgent care told the doc I was dying maybe meningitis he laughed at me and said it was just a virus and go home sleep it off. Rash came less than 1 week later told my obgyn at yearly appt he said just a virus. Rash on left chest small

Got shingles in 2014 this time went to primary Doc got blood work and sure enough shingles. Never felt the same after this one. Rash left lower back small

Oct 2018 shingles right neck small rash I felt like shit for 2 months went to Doc and said help I feel like I have been hit by a mack truck. Weak tired joint pain I couldn't run anymore right knee very painful it traveled to my right hip and coccyx as well then shingles broke out 1 month after I saw Doc

I have had two episodes to where my higher lumbar area like L2 and down went numb and one time I fell. It feels like a nerve impingement I am.currently awaiting mri xray came back normal.

Doc prescribes valtrex 500 MG daily for 1 freaking year!

Anyone else with repeat infections? Today I hurt so bad right down to hair follicle to the tips of my toes achy I started crying in the middle of the store and had to leave I couldn't take the achy pain.went home took ibuprofen and a valtrex and I'm better now. It was totally shingles pain

I'm at my wits end. Any insight would be helpful, please. I'm tired of paine lethargy weakness. I just want my body back

kitts2 12/11/2018

Hello. I have shingles across the left side of my back, shoulder and halfway down my arm. For the past two nights I have gotten a total of 2 hours of sleep. The remaining hours I have been up pacing or sitting on the couch crying. I've never had any pain like this in my entire 48 years of life. I have had my husband take so many pictures of my back and I look through them and cannot believe this is causing me so much misery. I tried a lidocaine patch and 200 mg of Gabapentin. Patch made it sting even worse and I don't think the Gabapentin touched it. Why can't there be something to help with this. I am petrified of another night tonight in the agony. I don't know if people who have not had shingles before I could even imagine something so awful. I wonder if people think I'm crazy when I tell them how bad it is.

CeeCee4 12/11/2018

I'm so sorry your suffering. I have been blessed in one way that my 3 bouts have only been a 4 inch circumference on my left low back right neck and left chest. It's the total body aches head to toe that get me crazy. The repeated infections has be concerned. Why am I getting shingles so much? Is there an underlying cause? Is valtrex 500 MG daily for 1 year safe? So many questions not enough answers

senecablue 01/21/2019

Yes I have had repeat shingles and feel totally crappy in between active episodes. Found an infectious disease doc who said Yes it’s chronic shingles. I got the new vaccine shingrex. Felt horrible for a week after the second shot then slowly better and now four months on all symptoms very muted. I was on Valtrexcdaily for five years until the vaccine. I hope you can find a good doc and maybe try the vaccine.

CeeCee4 01/21/2019

Thank you for responding I see a neurologist next month and then I'm going to go to infectious disease Doc if he can't help me

CeeCee4 01/21/2019

If in don't have any other underlying immune issues I'm gonna ask for the vaccine

Chetallica 09/25/2020

Anyone see a pattern of post breakout fatigue that is seasonal related? Had the breakout in May, cleared by June and have had some one and off muscle and joint pain. But now that Fall is upon us, feeling worse and worse.

Angie6667 10/28/2020

Hi, I am writing about my daughter. She is 34 and over the past 2-3 years has had repeated bouts with shingles. She got the 2- dose vaccine, second dose about 8 weeks ago. Now, she has gotten shingles again. She says it's the worst case she's ever had. Rash isn't that obvious but she has severe back pain.. any thoughts? Thanks

Purplekitty70 03/31/2023

I’ve had repeated cases of shingles since 2007, that case was not diagnosed as shingles for several days after onset of pain then mild blisters right ear, face and side of head. Late diagnosis caused PHN post hepatic neuralgia and permanent nerve damage in my 8th cranial nerve. I’ve since had multiple bouts with shingles ranging from mild to severe. Now I’m am trying to over one of the worst bouts I’ve ever had with extremely painful blistering in my scalp, migraines and all over fatigue. I’ve not had the shingles vaccine as my previous primary care advised against it. I’ve since got a new primary who wants me to get the vaccines once I’m over this bout. I’m extremely nervous about getting the vaccine as I’m afraid it will cause shingles or won’t be effective against future shingles. My doc says it will shorten and lessen future reoccurrences? How is your daughter doing this long after gettIng the vaccination? Did it help her with fewer and not as severe of bouts after the vaccination? Thank you in advance

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