Shingles are back

Hi Myrna. So sincerely sorry you are going through shingles. Please know the myself and every person on this forum feels the same deep regret that you are having to deal with this. But please also know that you are not alone. There are many of us on this forum that do get shingles more than once, more than twice, more than a dozen times and ten times that. There are alot of good people on here that can give you sound advise, having lived with this for years. I apologize for my own delay, as I am currently going through another shingles outbreak myself or I would have responded sooner. Depending on the location of your shingles there are many at home treatments that can bring you some relief. But first, be sure to see your doctor and be put on antivirals immediately and every time you have an outbreak. Seldom will shingles just go away on its own and left untreated can become worse, leaving damage to specific nerves in your body. Shingles was once known to come only once or twice in our older years, but with the development of the chicken pox vaccine being included in our children's routine vaccinations, this younger generation no longer gets chicken pox as we did, so now our generation and those before us no longer get those minimal exposure to chicken pox as our kids and their friends would get them and pass them alone. While it wonderful that our grand children will not have to endure as we did in our youth, it has left an unfortunate and possibly unforseen outcome for many. Because we no longer get this minimal exposure, our bodies can not fight off this virus that causes shingles. This is why the numbers of shingles cases has grown rapidly and is shrinking people in the later 30's and 40's, anyone who ever had the chicken pox. In the event that your shingles does return and will most likely return since you have already now had it twice, I suggest you get with a good doctor you feel comfortable with, so you will have someone to turn to, that is familiar with your case, in the event of another outbreak. Shingles can be quite painful, no matter where it shows up on your body and unfortunately this is not a kind of pain that Tylenol or Ibuprofen will treat. Typically, only true pain relievers, opioids, are a must. This is why you need a doctor in advance that knows you and you know them, so there is no question to the validity of your request for a class 4 drug, when you are in desperate need of them. ALSO and very important, DO NOT self medicate. Keep in mind that after you have taken your first pain pill, you are typically in no mental shape to judge when or if you need another. Many shingles sufferers turn this task over to a trusted spouse and this is a wise choice. Too many have been lost to addiction already. Also, keep on hand a topical ointment like lidocaine to give some relief. There are also others here that are very knowledgeable of what foods to avoid, to keep from getting shingles. I am hopeful that your shingles does not return and will keep you in my prayers. Hope something here i've said might help you or at least assure you that you are in the right place surrounded by good people who care about others and suffer the same. Should the shingles return, please turn to this forum for support because you are not alone. You are NOT alone, friend. Take care and hope you feel better soon. ~R

Hello again

Just checking in cause I just got back from the ER!  I am so angry and upset with this doctor’s opinion!  First he was kinda rude! He told me upright that shingles are forever!  That once that virus is in ones body that is it!  He told me he couldn’t give me a prescription for an anti viral because he wasn’t seeing the blisters!  I told him they had scabbed and healed but that I wanted the prescription Incase I would get another bout in the future!  I told him that this second time it was much milder than when I got shingles the first time and it was because I took the viral meds within the 72 hours and I thank God this second time it was mild because of my quick again of taking the med!  

That doctor told me impossible because shingles would be as harsh as the first time!!  What do you think?  Is her right?  I am so tired and confused!  He didn’t give me the prescription of anti viral and said to go to my doctor because what he would give me wouldn’t be covered by my insurance!  I had a terrible day!  My husband also went with me and he was very rude with him and saw his cuts on top of his hands and said why he went after days of the cut?  He said he would treat him but next time he wouldn’t!  My husband is diabetic and I believe that wasn’t the best interest on the patient!  

Well I am here back home and I will wait till June 18 which is my appointment with my regular doctor!  

I am still thinking about the doctor’s attitude about shingles!  I know that not two bouts have to me the same!  Pls tell me what you think about this!

My heart is heavy and I am lost!  I am so unhappy with all this!  I thought I would come back home feeling better and with a prescription!  It was not the case!

Blessings to all!

Hello again Myrna. I am so very sorry for your bad day and that doctor had no right to act so arrogantly toward you. Many of these doctors are talking out of pure ignorance.

I am so sorry that I was delayed in responding to you. I did respond to your last message to me. I am hopeful that you will please go read it now and it will bring you some comfort.

As for the doctors visit you just had, i am so sorry that happened to you. It is likely that thus doctor you just saw at the ER knows very little about the shingles virus. There are many medical doctors practicing medicine everyday that know little to nothing that this new shingles vaccine Shingrix even exists. In fact, I received my vaccine from a pharmacist that looked me square in my eye and said to me "We really don't know alot about this vaccine yet." I literally answered him with a hearty "Alrighty then." and I rolled up my sleeve and took the vaccine. Based on my own experiences over these past 8 years, i would typically say that the ER doctor you just saw was talking and acting out of ignorance, being lack of information. Some of the things he said are true. Some of what he said was absolutely textbook but total garbage. It is true the chicken pox lives dormant within our bodies till it awakens to cause shingles. However, to say that your first or second or fifth or tenth outbreak will be all the same is nonsense. They are NOT all the same. Shingles can literally move to another part of your body and the intensity of your outbreak WILL vary. I can say this with confidence, having had shingles well over 100 times. So yes, this ER doctor was most likely talking based on a lack of information or misinformation but since he was such a dumb insensitive jerk about it toward you, my conscience is clear with saying he is a moron! Write it on your bathroom mirror or not it down on paper several times...it will make you feel better : )

You do need to get together with a private doctor that will specifically be treating you for shingles and he will most likely write you a prescription for antivirals to have on hand. But most importantly, you need a private physician who knows YOU, knows Myrna personally and it WILL matter to him/her when you are hurting. The last thing you need is to have to face that MORON at the emergency room again when you are hurting afraid. Also, since you are having pain without the rash, there is a good chance what you are dealing with is PHN. It pain left behind after shingles and requires a different medication, other than just antivirals alone. Your private doctor will be sensitive to this too, as EVERY doctor should be but they are not. I am so very sorry for all that's happened to you and your husband and your Mom.

Please go back and read the message I sent to you about half hour ago. It is my sincere wish that you have the best day tomorrow...and also my sincere hope that the emergency room doctor that was rude to you gets a huge speeding ticket on his way home. Karma for rushing through his treatment of human beings who turn to him in need. Shame on him!

God bless you friend. Take care : )

Thank you so much for your beautiful words of support!  I appreciate it so much!  I felt so much better knowing I am not crazy and to know there are many like me with this awful shingles!  I want you to know that I have you and many others in my prayers!  I will go back oro my doctor on June 18 and tell her all that has happened to me and tell her about a

Prescription of anti vitals so if and when I get another outbreak!  I will also try to find the lidocaine cream!  It’s hard being on the scalp with so much hair!  I wash my hair every other day to keep it as clean as possible with Baby shampoo!

It’s hard to deal with this and family!  I only have my daughter to help me when she is not in the university!  She is a great help to me and my husband!  My mom is 83 and it gets harder to aid her!  But I pray everyday for them and also so many good people!  I pray for you too like I said because your words has help me to get up and fight!  Thank you so much!  Hope you are better and we will pray so that one day we are rid of this monster disease!

Have a great day without any pain!  I will treat my PHN as soon as I see the doc in June 18!

Thx,  Myrna

Hello Myrna, I am so sorry you have had such a horrible experience with the medical system and the doctors. At least with my reoccurring shingles my doctor is sympathetic, not very knowledgeable, but very understanding and actually listens. I was just telling the other lady about my road trip and my break in and how the shingles are back, but much much less. and not painful. I am definitely going to get the new vaccine but i need to get more information regarding the length of time between having an outbreak and getting the vaccine. I really believe the Chaga tea is making this tolerable. I have been drinking it daily for 2 months. Please look into this. I also put Frankincense  oil on the patches and it works amazing. Good luck, god bless and I will be routing for you. Gayleen

You are so welcome Myrna. I hope this finds you doing better. Thank you for every prayer and please know that you are in my nightly prayers and those of my family as well. May God grant relief to us ALL from this awful thing

~Rhonda

Hi Ronda

Glad you are doing better!  I pray for you because you have suffered too much!  I tell my husband about you and your kind words!  I tell my husband that you are my angel!  I am feeling better with the diet on high lysine and low arginine!  I will keep this on for years!  The important thing is to feel better!

I will talk to my head doctor about shingrix and I will tell her about being worried about any reaction because years ago I got the flu vaccine and it hit me hard that I had to visit the ER!

What do you think Rhonda me being so sensitive?  Let me know what you think ok!  

It’s been a hard week being I am feeling better some house repairs have been accomplished!

I believe I told you about the Hurricane Maria and after almost 10 months I can say that my house is fully repaired!

This was also the worse experience ever in my life!  I thought we would die from so much sea water coming inside the house!  I thank the Lord we survived,  my mom,  daughter and myself!  I still get nightmares of that terrible September 20,  2017!  Today is the first day of hurricane season which ends November 30!  This scares me!

Well I want to be calm because it does help the shingles stay away too!  Blessings to you and all here!

Myrna 

Bless you Myrna. I am so sorry for your loss, for the devastating loss of your home from the hurricane and these nightmares you are having over it all must make for long sleepless nights. Like you, I have missed out on so many life events, from happy gatherings when someone I loved was getting married or graduating and have missed most every birthday party my children and my 3 grand children have had. I have also missed the sad events I longed to attend to allow me the chance to offer that shoulder to cry on and be that rock for someone else in their time of need. And like you, this is NOT the retirement i planned and prepared so carefully for. For all you have missed, i am truly sorry.

Before you lose all hope, as i have done on so many occasions, please read to the end of my message here for what i am sharing with everyone here today. I just included it to another person on here a few minutes ago.

Sweetie, i am familiar with the frustration you are feeling. More times than i can count, i have told myself that i'm tired of being positive, that i'm tired of pretending i'm happy or hopeful or the least bit thankful because life has dished me a huge portion of daily torture and at times, i get sick of thinking productive and i just want to throw a fit instead and scream to the top of my lungs, not caring who hears me, "WHY?" ,"Why the heck, why me and what did i do?"

This being said, let me tell you, without hesitation, from someone who has suffered with shingles for 8 years. These past 5 years being brutal and the past 2 years wondering, at times, if my heart can survive the level of pain i was in...Let me say to you that YOU HAVE EVERY RIGHT to be exhausted and annoyed and angry and scared and disheartened. We have ALL been there. If there was ever a condition to question and wonder "Why me?", shingles would certainly be in the top three. It is not a death sentence as many dread diseases are but it IS a life sentence, without parole, that kicks you when you're down and even kicks you when you're up, stealing all your joy. There is still so much misinformation out there about shingles. It doesn't help that EVEN the CDC continues to tell people that it is unlikely that a person will get shingles more than once, like WE don't exist. We DO exist and we have every right to scream and pitch a fit to be heard and seen and acknowledged and treated by healthcare providers in a humane way. I say that to say this to you...

WE HEAR YOU. We are ALL here, like you and for you and we've been brought together to this forum for the same reason you were. No one can know what shingles does to a person, unless they have lived it. It is unimaginable that a wound the size of a half dollar can bring you to your knees but it does. It is unimaginable that with no wound anywhere in sight, this illness can STILL bring you to your knees but it does. I came here to this forum for one reason. Even though I was surrounded by family who love me and care for me and hurt with me when I hurt, I STILL felt so alone. This forum took that loneliness away. I learned that I am NOT alone. YOU are not alone, my friend. We all know the pain you feel. We all know you are disheartened and want to give up at times. We all know you cry while others sleep peacefully in their beds. We also know that you didn't earn this. God is not punishing you. You did nothing wrong to deserve this. We are many and we KNOW why you cry. You are NOT alone.

Here is the part I wanted you to be sure to read in my message here to you. Honestly, after so many meds and regimens and treatments and therapies and hospital stays, I was and still am afraid to get my hopes up about this new vaccine, Shingrix. I told my husband that I didn't want another let down and to be honest these past near 8 weeks since i had the first dose of the Shingrix vaccine, my body has gone haywire. Things I didn't even want to post on here because I didn't want to deter anyone else from getting the vaccine. Perhaps, my body would have done this anyway or perhaps the vaccine caused it all, i do not know. My husband and children have almost daily reminded me of the 97% success rate and that big number took be to maybe my 6th week. Thereafter and until yesterday, i was about to give up hope. I even said it out loud on more than one occasion and i was getting angry and i had already passed disheartened a week ago. Until YESTERDAY.

I am scheduled to return for my second dose of Shingrix next Saturday on June 2nd and i still had plans to go and I will go but truthfully, I was no longer sure if it would really work for me. Again...until yesterday. I am sitting here typing this to you with shingles outbreak on my face as it has been so many times over the years. Three days ago, i was coming out of a shingles outbreak and turned right back around with a brand new outbreak beginning. What's new about this??? I am sitting here with full blown shingles that would typically mean a race to get me sedated so i could stop screaming. I am sitting here with full blown shingles but I am NOT in pain. I am awake, I can talk without crying. I have taken NO pain medication since yesterday morning. There are no electric shocks, no lighting in a bottle going on in my head bouncing around. My doctor recently started me on Famciclovir which i'm taking everyday with my 3000 mg of Acyclovir. Maybe its the combination. Maybe its the Shingrix vaccine finally beginning to work. Maybe it's both. Maybe it's neither. I have taken misc antivirals over these past 8 years and been maxed out for days and weeks on IV antiviral but nothing has helped before. I had some, not alot, but some relief from the Zostervax vaccine but it stopped working after 3 years and i was still getting shingles. Our bedroom has so many medications and is fully set up for me to be sedated at a moment's notice. It favors a hospital room. I'm not using any of the things around me. I'm not taking any of the medication that is within reach, just in case. I see my face and i HAVE the shingles but I have no pain. The only thing i've done different is the Shingrix vaccine. I have said all day today and even in my last post that i wasn't getting my hopes up but that 97% is looking better by the moment.

I will keep everyone posted of any changes and i will be honest, even if its bad news. Hope it won't be bad news but i will be honest either way.

Again, please know that you are not alone, friend. And before you decide not to have the Shingrix vaccine, give it another thought. Who knows...97% IS a huge number and we are all different. Maybe it has worked for me. Maybe it will work for you. Take care, friend. You will be in my prayers. God bless us ALL

Thank you my friend for your words!  I am happy for you that at least you don’t have pain!!!

It is working for you after these 8 years of suffering!  I pray you can tell us all that you don’t get shingles anymore!  I have nerve pain and my heart hurts as well!

My head hurts too and I haven’t comb my hair since February 2018 when my shingles started for the first time!!  Why would the CDC say you only get shingles once.......it’s a lie!!!  Look at us CDC!!!!

I can’t sleep!!  My eyes are tired and I look like a panda with these dark circles under my eyes!!

I will take Advil and try to sleep cause I am so tired too!

Pray for all!

Sweet Myrna...i am deeply sorry for what you are going through. I truly hope you will get this new vaccine Shingrix. I know it might even be scary to think about...I was terrified. These past 8 weeks, my husband and I even talked about if we had possibly made the wrong decision because I was not getting better. It got scary. But the vaccine is working. I just went another full day with NO pain. I talked on the phone today without using the speaker, which is HUGE because i've not been able to stand the phone close to my ear, much less touching it for nearly 2 years. I put my hair in a ponytail! There were times when a brush didn't touch my hair for over a week. I even cut it twice. I brushed my teeth with no pain, no lightning bolt bouncing around and bringing me to my knees. Before, I would go days without food and very little drink because it was like getting hit with a cattle prod for my teeth to touch. My children and husband couldn't kiss my cheek for weeks at a time. Many times, i literally had to have hand weights on top of blankets and more weights and more blankets across my right leg, just to ease the pain and stop the shocks that went from my knee up into my back or have my husband apply pressure till my son could get the weights and me saying I wish someone would just park a car over it to ease the pain. But the pain is gone. These past 8 years have aged me tremendously but I don't care about any of that. I just want to smile and not hurt to smile. Laugh when others laugh because something is funny. Eat potato chips or toast and i NEVER want room temperature apple sauce, warm jello or room temperature pudding EVER again.

Sweetie, what you're describing is what i was going through. Please consider taking the vaccine. Please at least talk to your doctor about it and then decide. You are too sweet to suffer. Agreed the CDC is flat wrong and i told them so the night before i went to take my first dose of this new vaccine. I don't even know who this CDC guy was i emailed but i bombarded his email account for HOURS, to let him AND them know i existed, that MANY of us exist. And i did it to make ME feel better. You have every right to be upset and even angry but WE ARE HERE.

I know you feel discouraged and you are tired. Please know we are thinking of you and praying for you. I am more sorry than the words i could EVER find to say to you because i've been where you are this night. You guys were here for me when i had gone that last mile. I was tired and i was sick and tired of being sick and tired.

We are here for you. You are NOT alone. I do hope you get the new vaccine. Yesterday, i still had the blisters but again i had no pain. Today, NO pain and the blisters are actually starting to heal. I'm still taking the antivirals every day but i've been taking antivirals EVERY DAY for years and STILL got the shingles. Maybe they got it right this time. A 97% success rate is a BIG number and since it's NOT a live vaccine, like the previous one, there is no maximum age to it and even those with heart disease and cancer are tolerating it very well. I did have a rough 8 weeks but i had the shingles when i took the vaccine and i accepted the risk because i had no choice but what i've been thru these past 8 weeks were no worse than shingles itself, just in more places and i am better now and i have been through worse with shingles itself MANY times. It took nearly the entire 8 weeks for me to FINALLY see anything to hope for but only 5 days shy of that 8 week mark and i'm getting better. Thank you for being so sweet and encouraging to me. Let us be there for you. Much love and prayer to you this night