Reoccurring shingles / strange pain

Infections
1

I am a 46 year old female who has had constant reoccurring shingles since i was 28. My first bout with them was when I was 21. I had the terrible rash on one side of my face and was very sick. Since then I get out breaks on my ear and chin. And 4 times in my eye. I have had them over 50 times. The thing I don't understand is the pain.

I get burning pain on both sides of my spine as well ass my sacrum along with horrible pain in the arches of both feet. Without a rash.

I am currently having a bout. It just popped up in only my left eye but as always the pain in my feet, sacrum and spine is excruciating. I feel awful like I have the flu.I eat very well and I am a yoga teacher. All of this helps but not enough. Doctor's really don't understand this disease. I've been to so many.. anyone have pain like this or a similar experience? I am terribly frustrated..✌🏻️

2

Hi,can you tell  me more about the shingles in your eye? I had this last March and have had really bad itching for the last few months,My eye gets very red and sore, despite various eye drops from the eye clinic.I worry about my vision in the futire if this continues,Did you have this problem?

3

YES!!! I have been having bouts for the last 3 years, but I do not always get the rash. I tend to have neck and upper back along with either a headache or a mild nausea and fatigue when the pain increases. I also eat a healthy diet. Completely avoiding chocolate and nuts, and do yoga and/or Pilates daily. I agree this all has helped, but my goal is to eliminate completely!!! I'm trying a ND's recommendation of increased daily vit c and other supplements that is suppose to fight this virus off.i am almost 2 mo into this and she is saying I should not expect changes for approximate 3-4 mo, for that is what time it takes to make shifts in your body. Note: Merry, a NP, on this site warned me that vit c over 2000mg a day and red marine algae can cause kidney stones, so I am praying I don't start experiencing that😩 I hope this helps. So sorry for your suffering.

4

PS; I forgot to say during my bouts my feet get very hot and sensitive. I am 44, and some of the symptoms I have can be related to peri menapause, so I am always confused with what is from the shingles virus and what could be do to other changes that happen as we grow older. But, it is too coincidental that my feet are always sensitive while I am either having a rash and/or neck and back pain, and tingly skin.

5

I break out on my hip and shin, I also have experienced shooting pain up my back and down into my feet. My doctor said that made sense due to it following the lines of nerves.

At one point I was breaking out once a month, it seemed to be linked to my monthly cycle.

I found that taking a daily B12 vitamin helped with the nerve pain/damage. I don't break out as much, it seems my body has begun to build up an immunity to the virus.

6

Also I rarely have a rash with my breakouts anymore, it is usually just sensitive/burning skin, shooting pain, severe headaches and nausea. I also get extremely exhausted sometimes to the point of sleeping for a day or two.

7

Hey Jane,

So I got pain and sensitivity in my eye about a month after my first bout with full blown shingles. The light sensitivity was the worse. But I also started to get blurry vusion.

I was in college and didn't have medical so I waited until I got back to go to the Doctor. By the time I went in I couldn't see anything at all in my eye. The shingles had damaged the nerves badly. It took a month of serious eye drops every two hours as well as anti viral meds to get clear it. I almost lost my sight for good in one eye. It ended up being fine.

When it's reoccurred I go right to the eye Doctor and get it taken care of.

I got in in my eye a few days ago. And the inflammation is fine now and I can see out of it again. God does it hurt tho. Sound like something you have?

8

Thank you Michelle. I tend to kick it into remission for a few months at a time. But my pain and fatigue always come back. I am always looking to understand this disease more. thanks for taking the time to reply. Hope you are having more good days than bad! 😊

9

Thank you so much for replying.

I have never been told the nerves run to my feet. And has been so confusing. That makes a lot of sense 😊

10

What do you do to kick it into remission?

11

Dear Kristen,

First, I am so sorry that you are suffering with this disease. What makes it worse is many physicians are abysmally ignorant of how to diagnose and treat the disease.

The Herpes Zoster-Shingles virus is circulating in your entire body. Your symptoms of feeling as if you have the flu is correct because the virus, except for targeting the respiratory system, gives individuals symptoms such as headache, fever, chills and sweating, aches and pains, malaise and fatigue, photophobia.

It sounds like you have more than one dermatome affected with each episode, even though there is no rash. Shingles without the rash is called "Zoster Sine Herpete."

Do you start an antiviral immediately when you have the onset of the symptoms. Which antiviral, and for how long?

Are you immunocompromised?

Are you aware of the need to follow Hi Lysine Low Arginine Diet. Google the Lysine-Arginine diet Shingles...Believe me, it helps to decrease the intensity of pain and frequency of episodes. When I would gorge on peanuts, I would pay the price....

I have recurring Herpes Zoster-Shingles in my right ear every three to five weeks for the past twenty years and twice in my right eye. The pain is excruciating, agonizing, lancinating.

I take Famcyclovir at the first twinge if pain. I am also on Topamax daily, initially for migraine prophylaxis, but I am certain that it helps reduce the neuropathic pain I experience. I also use Auralgon, a topical ear drop, which contains Benzocaine, a numbing medication. I attack the pain using three modalities, plus restrict my diet. I still get the episodes, but am able to function better and be in control of the disease, instead of the disease controlling me.

Other options for daily medications are Gabapentin, Lyrica, and Elavil, and Cymbalta. They all interfere with neurotransmitters, and some work better than others. As you have been at this almost case long as I, I apologize if this is stuff you already know.

I hope your family is understanding regarding this disease. Many people who have never had it cannot begin to understand the enormity of the pain and accompanying symptoms. Please let me know how I can help you.

Best wishes

Merry Juliana

12

Hi Kristen,

I have no pain in my actual eye, but the itching in the socket and my eybrow is terrible, somtimes keeping me awake at night,which then means I rub it more and so then my eye is even more sore!! My eyelid does get very sore too.

I was told in August to go back in 3 months, so still have a month to wait for myappointment,but if my eye is red (as it is today!) I will go to the eye casualty clinic which is open on aMOnday atmylocal hospital.. This has goneon for months now, itreally getsme dowm,Thank youfor reassuring me though about the vision, I havebeen told it is fine but worry that the longer my eye goes red the more likely it might damage my eye.I need to ask at my next appointment.

During the  time I had the shingles, I too had blurred vision and then sensitivity to light for ages! I couldn't see properly from the bad eye for almost an hour of waking, and always wear sunglasses now to protect my eyes  whenever it's bright or sunny! I have various eye drops, one is a steroid, but nothing seems to help!!!

13

Hello Merry,

I just want to thank you for all your help on this forum, it really does help to speak to someone who knows how horrid shingles is and how many problems it can cause. I'm sure others on here  are all very grateful to you too!

14

Jane,

It sounds like the shingles are trying to come out your eye but just haven't. This has happened to me. You need to go to a good opthomoligist and tell them you have reoccurring shingles. Are you on an antiviral ?

15

Jane,

Thank you, Jane

I wish I could help you more with the itching as I know how gruesome and infuriating it is not to be able to relieve it... I shall be on the look out for new articles regarding itching.

Thank you for your kind words... I try to help each person who writes in, as I know the suffering and pain.

Best wishes,

Merry Juliana

16

Kristen,

How do you decide when to start your antiviral? Sometimes I start with feeling very heavy and lethargic with mild pain and tingly skin. I know it's related to the shingles because sometimes this feeling leads to the worse pain and rash, however sometimes it does not. I can't decide if I should just start the antiviral right at the first symptom, or if that is jumping the gun???? Any thoughts?

17

Hey Michelle,

I take mine when I feel tingling. But I have other symptoms all the time. I'' really not sure what the best thing is.

Sorry 😐

18

I'm not sure how I kick it into remission. God I wish I did. I spend so much time trying to figure this disease out it's maddening.

😞

19

Thanyou Merry!!!🙏🏼

20

Thanks, it helps to know that I am not the only one that is feeling some kind of symptom a lot of the time!