Misbehaving Shingles or something else?

Posted , 8 users are following.

First of all, thank you for this group. I am so very sorry so many of you have this illness, but I am so weary of thinking I'm insane hypochondriac! I was diagnosed with Shingles on 6/28/17. The previous months/year had been one crisis after another so definitely stressed. I had a week of weird, painful sensations on my side, but I thought I had pulled a muscle or had a kidney stone. Then, I had flu symptoms, and mild sore throat, but the next day I had the rash on my side. Only about 15 bumps, in an area about the size of my hand but not completely clustered together. I was put on acyclivor for 10 days, and, as soon as those bumps started to crust over, I got new ones, but single ones, on a couple random places. They then added prednisone to the end of that cycle of acyc. Within 2 weeks, I was still having random spots/blisters so they repeated another 5 days of acyclivor and another round of prednisone. The month of July is still a blur, I had overwhelming fatigue, slept for weeks it seemed, and into August and September I continued to have an active, single lesion somewhere on me at all times. They put me on docyclyine in case it was Lyme, did blood work, all normal. I ache in my ribs, I have  burning pain in my heel, and random shocks and burning pain in different areas all the time. I ITCH so badly on my spine, right between my shoulder blades, but never broke out there. My gp referred me to a dermatologist but I still have to wait 2 weeks to be seen with them. Currently, I have a new breakout, and a new pattern on my chest below my collar bone and these are clustered all together LOL! This one itches worse than any of the others and is so sensitive. This is in addition to the 6 or 7 random ones on my sides still. I have not been diagnosed with any immune disorder, and I do not know what to think. Another Dr. in the same practice with my GP says all the breakouts except for the original one are NOT shingles..... it's just a coincidence. I have never had allergies or any other skin condition. I am 50 years old, under the worst stress of my entire life, but have some serious faith so I'm good, but I'm confused, lol! They say I can't get it twice, but I never got rid of it; They say it can't be on both sides, but I have pictures, sometimes my lesions are even symmetrical!; They say they don't look like shingles because they arent clustered.. but they are identical to the shingles just individual ones. If anyone has any advice, I am so open to any! Mostly, thank you for making me feel like I can share! 

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  • Posted

    Hi Skyjewel - yes it's very confusing! Sorry to hear you have Shingles. The very first Shingles episode I had was 2009. Mine aren't typical either, also more like individual spots and twice, on different occasions, I've had them in a line but starting at the shoulder blade going individually down to my hip area. Once on the right side, the other occasion on the left side. My worst pain is like electric shock pains on the right side of my face,  I first had it as "Zoster sine herpete" without any rash and only January 2016 did I get the first rash on the right side of my face. It's painful to even brush my teeth. This most recent episode last week I thought I had tooth ache by my left bottom molar and two painful blisters on my tongue on that side! On top of that I had Strep throat. Also a rash on the left side where the "tooth ache" was. Hope you get better soon! 

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    • Posted

      Oh no! I'm sorry for you, too! Thank you for replying, I can't believe how horrible this disease can be! I had a horrible toothache about the time I had my sore throat during this time, I thought I cracked a molar but it went away.. wow, it's probably all connected, this is crazy! I wish my gp would read these messages, so many people hurting! Thanks again, and hope you feel better soon, too!

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  • Posted

    I am so sorry!!! First of all, you are not crazy!!!! You have shingles and it is a strain of shingles that the docs do not know anything about. There are so many strains out there and unfortunately the docs only think there is one. I have been suffering from shingles for 3 years. I get them in different places and both sides of my body. I have chronic pain in my neck and upper back that gets worse and lessens at its own will,  and I itch randomly. I get very tired when my pain is worse and I have a blister. I sometimes get headaches and flu like symptoms, but this is also random and not with every exacerbation. You have to cleanse your body! You have to get plenty of rest! You need to nourish your body with viral fighting foods and supplements. I will pm you an name of a book to read to give you some ideas. God bless you and hang in there.❤
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  • Posted

    Hi Skyjewel,

    First, I am sorry you are going through this,

    Second, you are not a hypochondriac.

    Third, so many of the Physicians treating Herpes Zoster-Shingles are abysmally ignorant regarding the diagnosis, treatment, and management of the disease.

    You can have a protracted case of Shingles. You can have a dissemination of Shingles. In either case, you should be either hospitalized, or seen by an infectious disease expert.

    You can have recurrent Herpes Zoster-Shingles.

    You can have Zoster Sine Herpete or Shingles Without the Rash.

    You can have Herpes Zoster-Shingles in different dermatomes and both sides of your body.

    What happens most of all are condescending, marginalizing Physicians who are sadly out of date regarding any of the above and refuse to look this material up.

    I suggest you consult with a physician in another practice who is up to date.

    I am a Nurse Practitioner who has had Herpes Zoster-Shingles every three to five weeks in my right ear for the past twenty one years.

    Best Wishes

    Merry Juliana

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    • Posted

      THANK YOU! Isn't it ironic that such awful possibilities are actually signs of hope when you feel like no one is listening! I remember crying when my gp came in and said my strep test was negative. She said "That's good, though, right?!?" and I said NO! at least you could treat and heal the strep!!!" They said I just had a coincidental pharyngitis that gave me sore, burning throat with ulcers on my tonsils and my gums...... I also have insanely itchy ears but have had that all my life, i think, I can't imagine having shingles there, too. Anyway, I will definitely try to find someone with more experience who is current on shingles. I'm so sorry you have dealt with this for 20 years but I'm so thankful you share your insight and experience to help others! I am going to be proactive and research so I can share it with my gp also! Again, thank you so much! I'm so blessed to have found this site!

       

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    • Posted

      Skyjewel,

      This has nothing to do with Herpes Zoster-Shingles, but if you have insanely itchy ears, here are the possibilities.

      You could have hay fever ie allergic rhinitis, with an itchy or scratchy throat, itchy ears, runny or stuffy nose, post nasal drip, itchy eyes-sometimes, or runny nose, nasal congestion.

      Second consideration would be an Otitis externa with a fungal infection or swimmer's ear.

      Do you have Diabetes mellitus?

      Do you have any drainage from your ears?

      Best Wishes

      Merry Juliana

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