Shingles are back

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Hey friends. I was up for 2 days, feeling positive this last outbreak, since having first Shingrix vaccine was easier than ones before...and it was. But I guess it (it being shingles) decided I didn't get beat up enough first go around, so it's taking another swing. I don't know...maybe this is normal. Maybe its just going to take more time. Wish I had more positive words to share & don't want to bring anyone else down. Pain is rising, eye is swelling, can't eat again. I'm somewhere between crying and anger. Anger at what??? I don't know that either. Guess I just want a life like others have, to be without all this. I know others have worse and God bless them and all. I missed my sons Awards banquet. This stinks!

Per Merry Juliana's advice, i contacted my doc to change me to different antiviral than the Acyclovir i've taken all these years.

I'm tired, friends. Not giving up but real tired. You guys take care. Praying for you all

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  • Posted

    So sorry to hear of your troubles. I have had reoccurring shingles for 3 years, since I had my knee replacement. i usually have a break out approx every 3-4 months, however if I get sick, or any extra stress, it can occur again with out warning. I really relate to the feeling really Tired, especially when very few people really understand what kind of tired your talking about.....i'm tired of being tired, tired of the pain, the sleepless nights....etc etc.....Winter is the worst, as I live in northern Canada. Winter is 6 months long and the shingles is worse during this time. 

    I pride myself on being a very positive person and I am very proactive in finding solutions. I have tried various anti viral medications, all sorts of vitamins and eat very very healthy. I find that the Lysine and eating clean helps the most. I force myself to walk a lot, even when I don't feel like it and try to laugh every day. I also have been drinking Chaga tea and really really believe that is helping too.  In other words, you are not alone...keep plugging away and one day maybe there will be an answer. P.S. for pain, I find tramodol helps for the bad days as well as CBD oil. Good luck and I will keep on praying. Gayleen

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    • Posted

      Thank you Gayleen. I'm sorry you are suffering too. Thank you for your words of encouragement. I've heard many great things about a special diet to avoid the shingles. I would like to give it a try myself to see how it performs for me. If I can stay well long enough, that is my full intent. I'm going thru another outbreak, after only having a day of relief. I was at my doctors office, seeing him today about changing my antiviral to a different one. While there, I had a full blown attack in my eye and face and had to get a shot for pain to make it back home. It wasn't a pretty scene and my screams were surely heard in every part of that bldg. I have a wonderful doctor, who after helping to relieve the pain, him knowing I was feeling so embarrassed pushed me, himself, in a wheelchair, out the side door, to our vehicle. I am so blessed to have a doctor who also cares about preserving my dignity, in addition to treating me physically. I've been taking Acyclovir every day, 3000 mg a day for near 5 years now and today my doctor added Famciclovir for me to take in addition to the Acyclovir, to be weaned off the Acyclovir gradually. I am hopeful thus extra dose of antiviral will give me an extra boost and get me past this hill i'm climbing because right now, it would appear I'm losing ground, not gaining. I've already had my first dose of the new shingles vaccine Shingrix and looking forward to getting my 2nd and final dose on June 2nd. Fingers crossed and looking for a miracle. Thank you for the advise on pain meds to treat. Right now, i'm taking Dilaudid and Amitriptyline. Hoping this upcoming dose will allow me to have my life back and without all these pills. I am willing to live my life in antivirals if need be but I don't feel like I'm living with all the pain meds keeping me in a fog. Trying to think positive and see this new shingles vaccine IS our miracle cure and trying to hold in to that happy thought until I'm proven wrong. I enjoyed your positive post and will do on the keep plugging away my and smile all we can. Best medicine EVER. Hope you a peaceful night fee of pain and the best of dreams. You take care friend and thanks again for your message. Sweet of you

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    • Posted

      Hi Gayleen

      I live in the island of Puerto Rico after living all my life in New York City

      I had shingles 4 months ago for the first time and I went to the doctor before the 72 hours and started on the anti viral!  After five or six days the blisters started healing and became scabs!  The thing is I got them in my scalp which is hard because of the hair!  I wash my hair every other day since that time to keep it clean!  I use Baby shampoo too

      Well after those 4 months I have had one blister and it heals!

      My daughter is always checking my head because it’s been very itchy and some pain at tines!

      Yesterday my daughter saw the little blister!  It makes me depressed and I feel tired of this! 

      I am not alone and this forum has kept me informed and many are in the same situation!

      I would like to know if this virus has an end!  You say you are dealing with this for two years now!  Do the blisters come out too and how many times in those two years have it reoccurred?

      I pray for all to be well!  This is hard and tiring!  I cry at night and I can’t sleep well!  I have been up since 1:30am

      Let me know how many times in those two years you have had bouts!  Thxs

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    • Posted

      Hello

      No one here believes me that shingles can have many out breaks!  I had shingles in February for the first time!  My mom and sister got it just once and they were done and never had a bout!  They feel tingles but that’s it!  After nearly 4 months a got another blister on the same place as before,  my scalp!  My daughter is the one that checks my head and saw that yesterday I had that small blister and I panicked and she is the one that helps me through the day!

      No one here except a friend got shingles on his scalp 

      I had anti viral on time for 7 days!  I thought that would be the end of it but I was not because I have that little blister and I pray that is the end!  I hear that you have had repeated bouts!  Will this never end for us who are suffering?

      Here they only give you anti carol once and med for pain I take Tylenol or Advil!  Sometimes I fell my entire head numb!  Is it ok to take viral meds for such a long time?

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    • Posted

      Holy Moly, you are sure on a lot of antiviral medication. I do know another person that is a friend of my sister who also takes it daily. I'm not sold on the idea, as I believe your body gets used to it, much like various other medications. However there doesn't seem to be an alternative.....figures. I have been prescribed valacyclovir 1000mg twice a day for 7 days for each break out, not continuous. I have a continuous prescription which I fill when I know a break out is going to occur. Mine seems to start with feeling fatigued but magnified x100, with lower back pain, like being kicked by a horse....I'll check in mirror and there will always be a patch on my lower back. This has been on going for just over 3 years. I am very fortunate that its only every 2-4 months. More frequent in the winter. I have been told that I can't get the new Shingrix vaccine until I haven't had a break out for 1 year. So my plan is to do whatever it takes to see that happen....lol  

      I know for sure that diet has helped and I continue to see improvements. Yes, i still have bouts of eating the wrong things, but hey who doesn't...lol That's when I really know that a clean diet is the answer. Sugar and processed foods make the pain far worse. Taking Lysine is a must! Sleep is crucial so I now take Trazadone nightly. Amnitrypline isn't effect for me anymore and I gained a lot of weight when I took it. Since my knee replacement and the eating right, I',m finally getting back to a proper weight. I have quite severe arthritis so I will require my left knee replaced in a year or two. I also get shots for my neck, for degenerative disc disease. etc etc.....lol I think there is a correlation between a lot of our health issues. 

      Meanwhile, as I still have to work full time, I need to find happy moments to get me through all this, so I listen to good music, all the time....try to watch mostly happy shows, or english detective series, do crosswords and other puzzles and only have friends who are positive influences. I still exercise as much as possible as natural endorphines are healing. I also drink the Chaga tea, I really see a difference in my energy level. I make sure I have tramodol and CBD oil when the going gets tough.

      I plan on beating this stupid disease. You take care as well and I will keep you in my prayers, hey it can't hurt....lol

      WelI better get off my butt and get ready for work......Have a super day! Gayleen

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    • Posted

      Hello Myrna,

      Sorry to hear about your suffering. Shingles suck!!!! No one really gets it, unless you've had it! And if you have reoccurring shingles, it can feel like you are living a nightmare. It's important to know your not alone and not going crazy. Now in saying that, you must plan for a battle! This disease doesn't seem to have any guarantee's so we must ask questions and look for what works for us. Fortunately this site has lots of good folks who have tried many things and there tends to be some similar treatments that are effective. 

      Getting on an antiviral asap is the first step. It is usual to have a 7 day prescription taking 1000mg twice a day. Some sufferers of reoccurring shingles take various forms continuously. I have a continuous prescription, but only take for the break out. I have been getting a breakout every 2-4 months for just over 3 years. Stress definitely is a key component. However, one can never really anticipate the unexpected. In saying that, I chose to keep quite busy, stay fairly active, eating as clean as possible....meaning stay away from sugar and processed foods....it really does make a difference! Take your vitamins....especially Lysine and B12, I eat a lot of fruit and veggies, but if you don't, take more Vit C. If you are not sleeping and if over the counter or health food items don't work, then take medication. I take Trazadone for sleep and I don't have side effects, but if you do, find something that works, as sleep is very important. I work 2 jobs. Full time at a alternate high school, and casual with seniors on weekends. For pain I take tramodol, but that is for bad days. I suffer from arthritis and have had a right knee replacement and need a left knee one. I also get shots for my neck as i have degenerative disc disease....other things too, but i try not to dwell on the negative. I keep moving as much as possible. I listen to my favorite music from late 60's early 70's, do crosswords and puzzles. I have 2 beautiful granddaughters who make me laugh and warm my heart. 

      When you have a lot of pain and feel hopeless, You have to find happiness and laughter. It is the only way to fight your way back!!!! I make myself get up and find something that will make me smile everyday, or I think i would have lost my mind....or have I ...lol lol Like I said on bad days, I take tramodol and CBD oil. on good days I start out with my vitamins, some advil and a tylonel. I do some stretching and off i go. Which reminds me, I gotta do that soon, as I'm off to work. Take care my friend, many blessings and I will say a special prayer for you....can't hurt..

      Have a super day! Gayleen

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    • Posted

      Hi Gayleen. Yes, I agree it is a large quantity of antivirals for me to take every day. In the beginning, I only took antivirals when I had an outbreak but when the outbreaks began to come more often, I was prescribed a "low dose" regimen to take daily. As you said, your body does adjust over time, so the dose has gone from low to 3000 mg Acyclovir a day, everyday, and just last week, my doctor added another 1600 mg of Famciclovir a day to hopefully back this down and get me to my scheduled vaccine date next Saturday on June 2nd. I read that you were told you could not get the new "Shingrix" vaccine till you are shingle free for a year. This I find very puzzling as the CDC and most docs and clinics are pushing this new vaccine, even for those who had the first vaccine Zostervax. If it were me, I would get another opinion on that. I am not a doctor but this is the first I'm hearing this because my shingles comes so often, I had to ask. Because this is NOT a live vaccine like the Zostervax was, the CDC has even said that they have found no research that suggests taking it during an outbreak would be detrimental but naturally, you would want to feel as good as possible any time you go in for any vaccine of any kind. I've been told from my doctor, his partner in his office and two different pharmacies that so little is known about this vaccine, except that it has a high 97% success rate, so many (their words) in the medical profession don't have the answers to many of their patients questions but there is a site on line directly from the CDC that answered every question I had on it and also all of the research findings. Because of this, I would definitely get a second opinion on this before fully deciding to wait an entire year. Not to panic you but because I didn't meet the minimum age requirement for the old vaccine Zostervax, it took years for me to finally find someone who would give me the vaccine. It gave me some, not all, but thankfully some relief for 3 years but the long delay left me with permanent nerve damage to my fifth cranial nerve and trigeminal neuralgia. Please know that i'm not advising you to do anything your doctor says no to because he may have a reason but I have to know the reasoning behind his advisement, myself. From the depths of my heart, I say this....I don't want ANYONE to EVER again be left with the nerve damage that I live with daily and it could have been avoided. I am back down in the bed with shingles again and i can say with confidence that nothing will keep me from having that vaccine next Saturday. With a 97% success rate, i will be there when they open for business. My hopes are high. My hopes are high for us ALL. You are all in my nightly prayers. Take care.

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    • Posted

      Thanks for all your advice, and sharing all pain and suffering. You are a very strong person to have endured so much pain and suffering. Please let me know how and if this new vaccine works and I will be marching over to my doctor.....lol    Meanwhile I took a few days off to take my sister, who is battling cancer on a road trip. I was so glad I spent the time with her, however it was a lot of work and when we arrived at our location I noticed I had a patch already forming on my lower back...lol lol figures......thank heavens I had packed my anti viral ...just in case. I managed to be outbreak free for almost 3 months and the real good news is it's not that painful this time and I'm not as exhausted as usual, even though I had to drive 7 hours to Sun peaks. I'm home now and apparently had a break in while I was gone....fortunately the student I had watching my place called the police immediately and they arrived within 10 minutes......figures....I haven't left town in years .....lol Well I'm having a drink and writing to you....got to put this in perspective and sometimes it is not easy. I Firmly believe the Chaga tea is what is keeping the pain at bay and the outbreak small....please check into this for your self. Have a great week, and many blessings. Gayleen

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    • Posted

      Hi Gayleen. Wow! Talk about putting it to the test! You had everything but the kitchen stove thrown at you. Lol. Bless your heart. You know i'm not Lol'ing about all you've been thru and definitely not about the rash. Bless your heart times ten! That person that broke into your place should have to face you during a shingles outbreak. They would hit the straight and narrow double quick by the time you finished with him. Get a hit in from us too. Ha!

      Awesome to hear that your outbreak is not as bad this time but so sorry it there at all. I almost hate to give you my news with all you've been thru but do want to fill you in on what's been happening. I just spent ANOTHER day with NO pain and the blisters are even starting to heal. It was so odd that i wasn't having any pain even though the rash was visibly there. But another thing i took note of today was that the blisters are also not following their normal progression either. You know it normally runs a cycle before it begins to heal over. But mine are actually backing down and getting lighter in appearance. This morning, i had 5 clusters on my face alone. By mid-day, i could only clearly make out 3 of them. Now they are all getting lighter in appearance. Its almost freaky, like they are going back in, not that i'm complaining but after 8 years, i could just about tell you what stage was what and what was next. Now, it's different. Granted, it took nearly every day of the 8 weeks to show ANY improvement. In fact, my husband and i were even questioning if i had messed up but i am in NO pain. I put my hair up in a ponytail today. I talked on the phone, with it to my ear. I just ate a potato chip and its nearly 3:00 in the morning, which was always my normal bad time. I would've joined you in that drink if i weren't still on so many antivirals. Ha! I will be trying that tea you suggested though. Thank you. I'm planning to stay on the antivirals and i'm due to go back this coming Saturday for my final vaccine and i will be there, for sure. Not sure if it will go as badly as the first but willing to take that chance, for a chance of never getting shingles again. I am so hopeful this continues to be good news i can give. I hope this for us ALL. You take care friend and keep smiling. I will keep you posted. You are in my prayers. Feel better sweetie

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    • Posted

      AWWW thanks so much for all your kind words and for thinking of me. I too will be waiting to hear about your success with the vaccine. My doctor is really great and I'm sure if he know that it is working for others, he will be more likely to let me have the vaccine prior to not having a breakout before the one year is up. I am so happy to hear that you are having some small successes and are able to return to a few normal tasks that most people take for granted. I will also keep you in my prayers that your success continue and that one day you are free of this debilitating disease. Best wishes and good luck my friend! Gayleen

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    • Posted

      Thank you Gayleen. Everything is happening so fast now and for first time in long time, it's ALL good.

      I go back for my second dose this Saturday. I will keep you guys posted how its going.

      I hope your doctor will prescribe it for you. Tell him its the new vaccine "Shingrix". It's so new, many docs haven't had the time to do much research on it. But the CDC has posted all the research data on line for public view. Very easy to access. And THIS is supposed to also help with the PHN. I can say it IS helping with mine. Day 4...NO pain and no pain meds

      I will keep you posted. Please let me know when you get the vaccine. Take care sweetie.

      ~Rhonda

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    • Posted

      Thanks Rhonda! I'm so happy that you are finally experiencing a few pain free days! I now have hope that this life altering disease may be coming to an end. I'm back at work after my trip with my sister and unfortunately have to deal with the fatigue of this latest outbreak. However it's not as bad as it used to be and I'll double up on the vitamins. Just having hope if a successful vaccine will renew my strength. I have an excellent doctor so once I see how effective it is with others, I will go and get it. Have a super day my friend! Gayleen

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    • Posted

      Hi Gayleen. Yes, I afraid to get my hopes up at first, especially after nearly a full two months and zero change but then it started working in a BIG way. I'm scheduled to have my next dose tomorrow. I'm a little nervous and really hope it doesn't put me down on my back again but it will be MORE than worth it, even if it does temporarily put me down, if these shingles will be FINALLY gone. Fingers crossed and prayers for you my friend. Prayers for us ALL.

      ~Rhonda

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    • Posted

      Hello Rhonda 

      It’s saturday and today I finally got out and I did wear a little makeup!  I felt better today even thought I had a little blister on the side of my scalp!  It’s been like two months since one also appeared but small too!

      My daughter told me it was small and flatten almost gone!  

      I wanted to reach out to you to see what you think?  Could it be

      possible that the bouts be lesser each time?  I am following the diet in high lysine and low arginine!  Like I said before I will keep this diet till the end!  

      How are you feeling and have you had lesser bouts too?  I am praying for us all here and I am glad for this form and for your kind support to me and others!

      May we have our lives back and be happy again with our children and grandkids!  My grandson graduates June  27th from the university and I want to go!  I pray I have a clean scalp without anything nor pain!!  We want our lives back to normal that is all I ask for in my prayers!

      Blessings 

      Myrna

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    • Posted

      Hello Myrna. Sorry for my delay. I see that i have many messages and will answer everyone as quickly as i can. Thank you for checking on me. So very sweet of you.

      Please forgive me that this message will be brief as my sight has not yet completely returned in my right eye and I don't have my strength back yet.

      I took a rough turn after my last post but doing much better now. I don't want to discourage anyone from getting this vaccine because it IS working and i have NO regrets. My side effects would have probably been mild had i been able to take the vaccine doses while i was shingle free but i could not. I accepted the risks and i don't regret.

      I had my second dose on June 2nd and i have not had an outbreak or needed anything for pain, nor sedation in 5 days.

      I will write more when i am stronger but please everyone....go get this vaccine Shingrix and please be sure you get both doses, as prescribed.

      I am anxious to tell this awful virus and these past 8 years a sound goodbye and get my life back, my family's life back. We are blessed and I am blessed to have all of you in this wonderful forum.

      Love and prayers to you and to all. Take care friend. I will post again soon.

      Everyone PLEASE go get this vaccine Shingrix. It DOES work.

      ~Rhonda

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