• Profile photo of damiensmomdamiensmom
    Member
    #171204694742

    I got shingles of the eye. It was so painfull I can tell you it felt like shards of glass being pushed threw my eye lids from the eye its self. I was screaming in the emergancy room it hurt so bad. I had no idea at that time was wrong. they gave me these drops numbed my eyes totaly. but they couldnt send me home with any and they told me to go to an optimoligist. I did and he asked me had i been under any stress lately. Well ya Damien had been in icu with a collapesd lung on the ventalator. I didnt tell him that but I was so suprised he asked me that. He said its rare and brought on by extreme stress it took over a month before i could go in the sunlight with out covering that eye.before i could see with it again after 2 months. I thought id never see right with my left eye again. Itwas the left eye only. I never heard of shingles and I thought hes full of it but I looked up on the internet and sure enough. It was a real thing. I can say I never want to stress that hard again

    Profile photo of dyzadyza
    Member
    #171204694735

    A friend of mine got shingles when she was 15, cant remember any reasons why, steroids or whatever, but I do remember she was off school for 8 weeks, six of these weeks she spent lying on her front as the pain was unbearable.But i suppose thre is different degrees of shingles

    Profile photo of EnergyGalEnergyGal
    Member
    #171204694734

    I hope you get stronger each and every passing day.

    Profile photo of sue35sue35
    Member
    #171204694731

    Thank you all for all the kind and informative responses

    I am on my fourth day now and although the pain is getting worse the blisters look better I think. I am midly worried that my ear hurts but the blisters are on my abdomen so I don’t think I have to worry about it going to my ear. I hope. I am also on Vicodin which I take at night but it sure does make me loopy!

    Thank you all!

    Sue 24w/CF

    #171204694712

    As far as anything that I have learned in school about shingles and also the way we practice at work is.. You can not get shingles unless you have had the chicken pox, and shingles is not contagious to anyone who has had the chickenpox.

    If you have never had the chicken pox and then you were exposed to shingles, you are at risk for the chicken pox, Shingles is a secondary infection that you can only get after the chicken pox is in your system,

    Chicken pox is a member of the Herpes family, I think it is called Herpes Varicella, or Herpes Zoster varicella, either way it is a virus and it lays dormant in your dna,

    Now if you are immuno compromised, you can get chicken pox again if your antibodies are low enough, I have had the chicken pox and it was before I was on steroids so my body had the chance to make antibodies against it, so I am protected from chicken pox, even though I am still immunocompromised.

    Anyway that is my understanding of what I was taught.

    Jennifer

    Profile photo of AttyMomAttyMom
    Member
    #171204694711

    I just had shingles in January. the pain and the number of sores can vary from person to person. My husband had them in 2000 just after our son got the chicken pox vaccination.

    With him, he had many sores on his upper shoulder area on his back and chest. With me, I had only 9 sores on my lower left abdomen. It was a week before I experienced any pain. the pain I got kept me up all night. When I went to the dr the next day, she confirmed my suspicions. (Which my husband had had too…but didn’t want to scare me!)

    The pain last for a week with me…about 10 days for my husband. They gave me Valtrex (a herpes medication) 2x/day for 10 days. The sores dried up in about 4 days. Only 2 small scars remain (but keep in mind, I usually scar easily…so you may not) I also had a prescription for Vicodin which I tried to only take 1 of at bedtime, but one night took 2…which made me very loopy the next day! lol! I think I took the Vicodin for 5 days after which I was able to use Tylenol only for the next few days.

    Shingles are certainly no fun…I wish you a mild case. Also, unlike the chicken pox which you will not get again once infected, shingles can reerupt. My aunt had them 5 times. Now, however, a vaccine exists…which I am planning to ask my doctor about the next time I see him.

    Wishing you a speedy recovery!

    Profile photo of goingupgoingup
    Member
    #171204694633

    MY FATHER PASSED AWAY FROM SHINGLES SPREADING TO HIS BRAIN AND
    TAKING OVER LIKE THE PLAGUE…. THIS WAS IN 1987, AND FROM WHAT I
    STILL HEAR TODAY, WAS A VERY UNUSUAL
    SITUATION….

    Profile photo of BethBeth
    Member
    #171204694560

    I just got over shingles last month. The pain wasn’t so bad just like a sore muscle for a few days and then it itched pretty bad but I don’t have any pain now. I was also worried about scarring but you can’t tell that I had it at all. My friend also had it at around the same time and she had no pain at all through the whole thing just an itchy rash. Hope this helps.

    Beth

    By the way neither of us have CF just lots of stress in the past few months.

    Profile photo of sue35sue35
    Member
    #171204694559

    Thanks for all the info guys! So for those who had it the pain is going to get worse? I have some blisters now but not a lot of pain. is it possible for it to just stay like that pain wise? \

    Thanks again

    Sue 24w/CF

    Profile photo of candiebar76candiebar76
    Member
    #171204694547
    As the other poster said you can only get shingles if you have had chicken pox before

    I actually got shingles at the age of 18 when I was in the hospital for premature membrane rupture (pregnancy). I had never had chicken pox although I had been exposed several times. They said I may have been just a carrier or had a resistence to them, but at the age of 25 I got them. The immunization that most young people get protects from chicken pox, but not against the associated diseases or infections that effect you after having them.
    Candace

    Profile photo of lilmac7lilmac7
    Member
    #171204694529

    I had shingles a couple years back, cant remember exactly what if anything they gave me for it, all I know is that it hurt badly( I’ll get into what it felt like in a bit) and I remember using lots of Calamine lotion to help with the itch and help dry it up. I believe mine was triggerred more so from stress and the docs said the same thing as my health was quite fine for a good while before that and I wasn’t on anything that could have triggerred it either. At the time I was going through alot of stress at the job I had and things were really getting to me, then one night I got this itch on my side that just wouldn’t go away and it was so intense I couldn’t ignore it. First after scratching it just turned to a red area on my side, then through out the night in my sleep I must have scratched myself to bits and by morning it was little tiny blister looking things forming, I thought it was some sort of bite. I went to work and it was really bothering me then I lifted up my shirt to show a co-worker who I confided in and she said I should go to the doctor ’cause it looked like shingles that a relative of hers had at one time, and she knew the stress was getting to me because she was the one who I would vent my frustrations to. Sure enough the doc said it was shingles and he made me stay home for some time because he said I needed to relax and also that people that never had Chicken pox before could get chicken pox from me while I had it.

    Anyway just to let you know what my understanding of it is, it is basically the chicken pox virus becomming active in the body again. What happens is that when someone gets Chicken pox the virus remains “dormant” in the spine(central nervous system). Most common triggers are stress and weakened immune system. Once it is “triggered” unlike chicken pox which can cover the body it only travels on nerve endings so most common places for it to show up is on the sides, back, chest(I think), head and face. It is rearer but very dangerous for it to come on the head and face as that indicates that it can go to the eyes and cause blindness and I think I’ve also heard in rare cases it can cause problems for the brain and sometimes even lead to death, but again that’s very rare. Now for what it felt like….because it travels on the nerve endings you can immagine, shooting striking pains going from the blisters toward the spine and very sensitive, if it was touched I could feel the shooting pains travel along the nerves, nerves that before I had no clue were even there. Mine came on my side, only one side too thank God! At first it wasn’t that bad pain wise, but as blisters became full blown instead of tiny things that you’d really have to look good to see that they were blisters, then the pain came!

    Anyway hope I helped and my advise is stay home and relax, use calamine lotion or something that’ll help dry up the blisters and relieve the itch because when they get to the stage that they hurt the last thing you want to do is accidentally scratch it! And if you notice anything coming up on the face or head get to a doctor quick!

    Profile photo of anonymousanonymous
    Member
    #171204694501

    My friend had shingles when she was 16. It was after a bone marrow transplant so probably due to the steroids. I hope you feel better!!!
    Katy

    Profile photo of anonymousanonymous
    Member
    #171204694493

    My husband got shingles. I know others who have been on steroids who have gotten shingles.

    As the other poster said you can only get shingles if you have had chicken pox before. Many young CFers have never had chicken pox so maybe that’s why she hasn’t seen in so much in young folks.

    Shingles stink. Even after it has cleared you can be left with pain.

    Profile photo of coltsfan715coltsfan715
    Member
    #171204694467

    I have never had shingles myself, but have heard as well that it is related to Chicken Pox.

    I found this site with some info.
    Shingles Virus

    It would make sense that if it affects those with weakened immune systems that CFers could be susceptible, so long as they have had chicken pox … especially with how often many are on steroids.

    Also to let you know … a friend of mine got shingles in high school (we were 16 and 17 at the time) … she had lyme disease which I guess may have triggered it. I don’t remember the specifics about it, I just remember her getting it.

    Lindsey

    Profile photo of EnergyGalEnergyGal
    Member
    #171204694457

    Since you are not a transplant patient I hope you can get over this pretty quickly. Just take great care of yourself and do not worry as that is not going to help you. I believe Shingles is a virus related to the herpes, chicken pox family. This is just off the top of my head so I am not certain. Take the drugs they give you and relax and do whatever you can to get over this.

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