Shingles

Hello my friends,

Just a question, I have cll and although it's not in remission, I have very few cll cells floating around. The last weak I had so much skin sensitivity and pain. I couldn't figure out what it was or why it seemed to be getting worse. I know it's not from exercise, I'm ashamed to say. Then this morning I woke up with blisters all over my right breast around to my back. There are bubbles in my skin very dense in patches everywhere. I rushed to the dermatologist. She said it was likely shingles and gave me anti virus medication called digital. She also told me if I had a head ache or fever to go to ER. I don't have any fever. But my head, neck and shoulders hurts so incredibly bad. These are areas not touched by blisters yet. I took my first pill and I am laying in inscrutable pain. Any advise for what to put on it, or how to bring down the pain? Or are there any concerns I should have? Or what to put on the blisters to feel less pain?

Thank you in advance for any suggestions our knowledge,

Kimsome

31 Replies

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  • Hi Kimsome,

    So sorry to hear about your situation.

    Your dermatologist told you if you had a head ache or fever to go to ER. And now you say your head is hurting very bad. Seems to me that you should do as she said, and go to ER. I don't say that lightly...

    Paula

  • On my way. Thank you.

  • I'm SO glad to hear that, Kimsome. Do let us know how you get on.

  • Still thinking of you, Kimsome... Hate to think of you lying in such pain... You might be reluctant to go to ER, but (hopefully) they could at least give you some adequate painkillers. Shingles is notoriously painful... There might even be extra/other anti-virals they can give you. And they would check to see that nothing else is going on, that might need different treatment...

    Wishing you well,

    Paula

  • Paula, you are so kind. You are probably right, but I can't force myself to get in the car. I quill if it continues. Thank you for your support. Love, kingdom

  • Sorry you have shingles I can empathize...most painful experience of my life.

    You mentioned an antiviral... not sure your spell checker hasn't got it wrong... 😳

    The standard shingles antivirals are:

    Acyclovir (Zovirax)

    Valacyclovir (Valtrex)

    Famciclovir (Famvir)

    I would absolutely go to emergency with a headache... shingles can travel down any nerve sheath including the spine and into the brain... rare... but the risk is not zero... if this is the case you need treatment perhaps with corticosteroids... this was my case...when I developed Palsy/Ramsey Hunt... and eye lid involvement.

    ~chris

  • Hi Chris, as they say, "i don't want any trouble." Just want it over. I plan on going tip ER. My doc. Just called and said to go to ER. Better safe than really sorry. Thank you for your treasure input. Thank you, thank you, Kimsome

  • I agree with Cllcanada you should go A+E given your CLL .. am surprised dermatologist did not advice it

  • I am on my way. Thank you so much.

  • Thank you for your speedy response. I a.m. Going to ER. Whoopie. You guys acted my quickly them mmm doctors. Hallelujah

    💘, kimsome

  • Glad to hear your on ya way ... Hope they get it sorted for you ASAP

  • So sorry Kimsome to hear this, I hope you get help with the pain which many here know sadly is really bad.

    I wish your post could always be visible as no matter how many times we write about the tingling unpleasant nerve pain that precedes shingles, folk are still waiting until the rash appears before seeking help. Sadly this is usually too late for the anti vitals to knock it down although they still help.

    Anyone having your well described early symptoms should hot foot it to their emergency GP to get anti-vitals which Chris has kindly named.

    Do let us know how you get on, loads of sympathy that you have this horrible reactivation of the chicken pox virus.

    Best wishes

    Bubnjay1

  • Thank you for your comment. I am not sure how the shingles post could be seen all the time but whatever I can do to help please let me know ... I was in such tingling burning sensation and if I would have known that instead of waiting for the a rash it sure would have been nice to know. Thank you again,

    Kimsome

  • Kimsome, I am sorry that you have shingles,I know how painful it can be.I am glad you have taken the advice of others an have gone to the ER.I am thinking of you.Please let us know how you make out.Well wishes Pumpkin

  • Good luck Kimsome. I've been prescribed acyclovir in the past.

  • They should have prescribed Gamaphention for the pain. Go to the ER

  • Hi Kimsome .I live inNZ and have bad CLL.(not a problem) I also have shingles -4 years now ,across my back-down to my groin and now the pain is going down my right upper leg .The Spec did not give me a vaccine before I had 42 lots of radiation for prostate cancer.I can hardly walk or hold my shorts up .I have researched the world for a cream to stop the pain.

    On the good news it sounds like to me you will get over this shortlybut and its a big but .keep away from people until all crusts have formed otherwise they migh get itespecially if the other people had had chicken-pox when they were a child.If you find a suitable cream to put on the nerve endings use it especiall at night times .Best of luck

    Chrisbee

  • Hello dear friends,

    Thank you for the kindness your have shown me in regards to my shingles.

    So, I went to ER because my dermatologist and GP said, "move it" because both a fever and headache came on strong, along with the excruciating pain of the shingles. They are now growing from my chest to most all of my back.

    I waited three hours at the ER. They were very busy, and gave me PAIN meds to bring the pain under control. No IV to hydrate which I thought would bring me great relief. No blood work. And finally no IV anti virus medication, that my doctor and dermatologist said was the best way to get it working. Fortunately , my dermatologist took blood work and swabbed it to ensure what we were looking at. She prescribed acyclovir 800 mg. To stop it from spreading and help the shingles heal.

    After my release from the hospital, at 3:00 a'm I took a taxi home, just to find my doctor and dermatologist wanted me in the hospital, maybe a different one. They called my oncologist and even with the fever and striking head ache he insist I was ok at home.

    I do not understand the issues of why or why not the hospital, maybe one of you have more insight. I was so out of it yesterday that I fell asleep during our call. I feel asleep drinking and "yes" going to the bathroom. It feels like my fever broke. So now I'm going to rest. I've never felt this pain before but at least I'm resting and with the inability to wear proper under garments I will be staying in... who knows for how long. Anybody else with insight on how long it takes to go away and why the controversy about the hospital? I was told if you got it once it will NOT come bake but from your stories, That is not true.

    Thank you so much for the encouragement and gifts of knowledge. I don't know what I would do with out you.

    Many blessings, Kimsome

  • I forgot to say that my white blood count is low, not high. It was 3.

  • Hi Kimsome,

    I'm so sorry you had such a horrible experience at the ER. Words fail me... We all encouraged you to go there, but we'd so hoped things would go better than that...

    However, as Chris has said, at least you've now got appropriate anti-virals , and you did mention some better pain relief. I never understood what you meant (in your first post) about an anti-viral called Digital. I'm not an expert, but I've never heard of that.

    Confusing that your doctor and dermatologist seemed to be talking about you going to another hospital, though your oncologist seemed to think you'd be OK at home. When you're feeling up to it, maybe you can try and clarify this, and find out the reasons for some docs wanting you in a certain hospital. Would you have got different treatment there? Would that treatment still be useful? Has any doctor suggested giving you steroids? Not easy to deal with all this, when you're in pain in the middle of the night.

    Take care,

    Paula

  • What a wonderful person you are too care so much for others. I didn't go to the hospital today. I did get pain meds along with anti viral medication. I am just laying here wondering if I should take a bath or lf I should wait awhile and just wash my hair, right now I can't imagine doing either. It's so hard with it all over my back and arm and so on.

    But I'll keep reading, trying to figure out when the pain should ease up... It really feels like a 3rd degree burn.

    Thank you again for the help.

    Kimsome

  • Hi Kim, It's very hard, not knowing how much to push yourself when you're ill. But in these early days of the shingles, I'd definitely veer on the side of resting. Even simple stuff like hairwashing can be too much sometimes. Maybe a family member could help you?

    Having said that, when you're feeling a bit better, I know that psychologically we feel much better after having a bath/shower and hairwash. Probably best not to have the water too hot though...

    I have a friend here in Sheffield who's also suffering with shingles at the moment, and she too finds it impossible to wear underclothes. She can't even tolerate trousers, and can only wear loose dresses (not her usual style at all). She doesn't have CLL, and has always been a very strong, active person, but this shingles has really knocked her back.

    You mentioned having a headache and fever... Do keep your doctors in touch with these symptoms, in case they decide you need different/extra medications or other treatments.

    I'm glad to see that you already feel encouraged by the support from people here. I know how much difference that can make - it certainly has done for me.

    Hoping and praying you'll soon find relief and recovery,

    Paula

  • Wow, I was just googling how long I should stay down. What you say makes perfect since. I was also searching for something I can wear that doesn't drive me crazy. luckily I found a very soft night gown. I am suffering for sure. Not trying to be tough at all. It hurts too badly. I haven't attempted to wash my hair yet. We'll see how it goes. Since I have wide spread shingles there isn't a comfortable spot in the bed. Thank you so much for answering the questions that are now popping up.

    You are very kind and generous to take the time. I wish the blisters would start to scab over, not to be gross.

    Best regards,

    Kimsome

  • Just wondering how you're doing, Kimsome. Is the pain easing off now? Have those blisters scabbed over?

    thinking of you,

    Paula

  • Wow... horrific encounter with the emergency services... glad you are on antivirals, relief will come... have you been given any pain medication? Gabapentin?

    In my case shingles cleared in about 10 days but the post herpatic neuralgia PNH has never left... almost 40 months now... mild pain and managable for the most part...

    ~chris

  • 40 months... I'll look that up for sure. I don't even know what post hetatic neuralgia Is at this point.

    Thank you for informing me.

    Kimsome

  • Sending a big cyber hug kimsome, at least they don't hurt. So hope that you soon get some relief.

    Sending lots of sympathy, rest up it will pass, and resting is the best you can do to help yourself.

    Bubnjay1

  • I agree, I slept a couple of hours..

    Now I'm on rest until I'm off. I still have to go to get my pro time done. Did you work though this? I just can't. I can't put on under garments. Hahaha😂😂

    Thank you again,

    Kimsome

  • It has pole axed you, I was young when I had it and did not have cll then. However I know quite a few who have suffered severe attacks as you are doing, and know just how bad it can get. Just have to rest through it and ease the pain, soft top clothes til the worse is over.

    With much sympathy, and wishing you feel easier very soon

    Bubnjay1

  • Thank you so much for the encouragement. I am laying low and praying for relief. I will be thrilled when this is over. I feel better already with your sympathy.

    Kimsome

  • Hi Kimsome

    Just to say still thinking of you and hoping it is not pulling you down too much.

    It will ease, but not easy when you are going through it, hopefully you will escape the PNH, my rash was in the same place as yours and I did not have it.

    Best wishes

    Bubnjay1

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