I'm a 19 year old female, and have suffered from re occurring shingles. The first time was the worst, experiencing extreme pain and sensitivity and fatigue- it was wrongly diagnosed as impetigo and I was given anti viral treatment too late for it to be effective. The second time it was mild, with a smaller rash which appeared not only on my left arm but also right. This time it has come back without the rash, ofcourse I am experiencing numbness throughout where the nerve runs down my arm up into my fingers. I am also experiencing extreme depression, to be exact: isolated, depersonalisation, dizzy and sensitive to sunlight, anxious and useless, extreme fatigue so sleeping about 11 hours a night, memory loss, headaches and no appetite. If anyone feels this way I would greatly appreciate it if they let me know, so I don't feel like such an oddity! And maybe how you realt with it, when it subsided.
Hi Becca,
I am sorry that you are experiencing recurrent Herpes Zoster-Shingles, and also so young. All of your symptoms are common, especially the fatigue, need for increased sleep, depression, photophobia, malaise, headaches, loss of appetite- which goes along with the depression and viral infection, btw. Do you take antivirals when you get a recurrence? You should, as it stops the virus from replicating, decreases the severity of the symptoms, and the length of the episode.
The other suggestion I would recommend is to Google Lysine/Arginine diet. While others swear by Lysine supplements, they can be harmful to your body. I avoid food high in Arginine and eat foods high in Lysine. I love nuts, which are supposed to be healthy, right? Except that they are high in Lysine and were triggering worse ie more painful episodes, of longer duration Herpes Zoster-Shingles for me.
As you have Herpes Zoster-Shingles in both arms, I am concerned. Are you immunocompromised?
I certainly get all your symptoms, by the way, especially when I don't use the Antivirals in a timely fashion.
I have had Herpes Zoster-Shingles in my right ear every three to five weeks for the past twenty years and twice in my right eye.
I am a Nurse Practitioner in the States.
Best regards
Merry Juliana
I'm so sorry you're going through this Becca. It is not pleasant at all. Very painful and uncomfortable. I want you to know that it will get better. Don't go it alone. Make sure your family doctor follows you closely, and be sure to get established with a counselor that works with someone who is experiencing an illness and the depression that can go along with it. Be sure to surround yourself with family and friends that support you and love you. This link has helped to reassure "me" that what I'm experiencing, is part of shingles while it runs it's course. I'm heading back to my primary doctor tomorrow because I now have swollen painful lymph glands in both armpits. Don't know if I need antibiotics now or not. I had back to work Monday after being off a week and a half. It's very stressful where I work and I think I got the shingles due to of lack of sleep and being worn down. I'm trying to do happy little things for myself & that helps a lot- going to Starbucks, lunch- listening to music reading and spending time with my animals. I have even applied for a different job position where I work, which would be a lot less stress on me. There's an old saying to try and take one day at a time. Sometimes that feels impossible , so I take it a minute at a time and that really works. 😄 Journaling is really really helpful and a positive outlet as well . Hang in there. You're not alone we are all here to help you . K?😊
Becca,
Stephanie is absolutely right about seeing a counselor about the depression. It is a difficult illness to have, and then to get depressed on top of it makes it much harder to deal with....when people are depressed, they tend to isolate themselves.
It is better if you talk to a close friend, your mom, regarding this. Also see a doctor about the symptoms you have.
I am a master at Depression, meaning I have had it most of my adult life. The good news is that it is treatable. You need to make that step and talk to someone you love and trust.
Many hugs...
Merry Juliana
Hi Everyone- this forum is the best thing ever - thanks for all the advice - Merry, I wish you were here in Oklahoma City - you'd be my doctor 😀 I had a single row of spots going down each side of my body from my shoulder to my waist - they were not extremely painful, just sore to touch. My doctor said they are bug bites, shingles don't occur on both sides! I told him last week I read that they can - so he said " well I've never seen it"!! Always when I get a rash now I have face pain from the right corner of my mouth to my nose. I had this "zoster sine herpete" on my face since 2009, the first rash was on my face and occurred January this year. August 10th was the first time I had a rash on my body, now 3 weeks later August 31st I got the same body rash again, though not as many spots. There were also about 5 spots on my left thigh. I also started it with what felt like a cold/cough this last time, felt extremely sleepy. I still don't feel well. Three days ago I started feeling as if I'm going to fall over when I bend down and feel dizzy even when I turn over in bed. Today I bought some Lysine, kefir, plain yoghurt, various cheese, mango, apples, beets, salmon and potatoes - what I could understand would be lower in Arginine. Thanks for making us aware of this! I'm extremely stressed out at work and I too applied for a new job, I can't go on like this. To feel down is natural, this has been the worst year of my life, so take heart, you're not alone Becca. Hope with all this advice you'll get better and have less episodes - sorry that you're so young to be going through this! Big hugs to you all xox
Elsabe,
The smart clinicians learn a lot from their patients and go home and read. It is well-known that Herpes Zoster-Shingles can occur bilaterally, though not as frequently as unilaterally, and also reoccurs. Too many of us are living proof. It also occurs in different dermatome and is accompanied by many symptoms, not just the pain. The support on this site is great, but there is no cure, unfortunately...
Best wishes
Merry Juliana
Merry, the support is priceless! 💕
Elsabe,
You are absolutely right! Sometimes, when bad stuff has happened, the good that has resulted has been worth it, and then some!
You are a spitfire!🌸💫
Merry Juliana
Thank-you so much this was really helpful and also comforting. Wish you lived in the UK! Unfortunately I was told by my GP he doesn't like to prescribe me the antivirals more than once (?), and without the the rash this time I don't know if he will. I'm about to start university this year which I'm dreading now because of the shingles! I'm sorry that you've had recurring shingles for so long, I think I'll have to change my outlook to become more positive like yourself!
Hi Stephanie, im glad this post helped to reassure you. I also feel re assured by the fact you experience this. I was freaking out wondering why I felt so weird for a long time before it even dawned upon me that shingles could mentally be making me feel this way- I am usually a very very happy and positive person. Thank you as well for your advice, doing little things each day that make you happy certainly do help. I hope you feel better and this passes sooner rather than later, thank you for your kind words I definitely reciprocate them!
Hello Merry
I still have a sore eye and awful itching, also around my eyebrow and forehead a few times a day 6 months after shingles in right eye etc , nothing helps, drops, gel etc, is this common when people have PHN? I have no pain now though, but the itching is driving me mad!!
Becca,
I am much better at coping now than at 19 years old, because I became more resilient. I realized that I had deep rooted depression, "major depressive disorder," and have been on an antidepressant for over two decades. This followed traumatic events that led to PTSD. I was in therapy for years, but am in a much better place, now. I share this, as I like to help others spiraling down into the deep abyss, and think there is no way out.
If your physician won't prescribe antivirals if he doesn't see the rash, he is sadly out of date. I would consider changing physicians. Shingles without the rash is called
"Zoster Sine Herpete.". You need to be on the antivirals as it might stop the vicious cycle.
The other news is that there is a new shingles vaccine Shingrex by Glaxo-Smith-Kline being presented for approval to your equivalent of the FDA, ?CSA hopefully this year. Zostavax had a dismal 51-37% efficacy rate, with declining efficacy in older populations. Shingrex has been more promising efficacy rate at 93-97% by using an adjuvant. For our population of recurrent Herpes Zoster-Shingles patients, it might prove useful for you to receive the new Shingrex, when it comes out.
Please keep me posted on how you are doing, shingles and emotionally....I lived in Germany for six years working in a US Army Hospital NATO FORCES and travelled to the UK several times...and cared for your country men many times as part of NATO FORCES.
Best wishes
Merry Juliana
Hi Becca, sorry you are feeling so crappy, so young to get shingles too. I am 45 & just having my 1st ever attack of shingles coming up for 4wks now. it started with sunburn like pain on right shoulder & neck & severe dawn to dusk headaches for 5days. then a rash/spots started to appear same area. spoke to my mum & we suspected shingles so i went straight to docs same day rash started, doc confirmed shingles & gave me anti viral meds for 7days. 2days after finishing them, it came out in other places(both sides) & all over both buttocks big time. the buttocks were itchy, but the other areas were like painful sunburn. at the same time i felt like i had the tail end of flu & developed quickly a very productive phlegmy cough. i went back to the docs who examined all the areas thoroughly & said it looked like the buttock areas were like chicken pox & other areas were like shingles, he had seen another patient who presented in this way, & it is also possible to get it on both sides of body, but unusual. he gave another week of anti virals which i finish today. i am carefully checking myself to make sure it doesn't come out more like last time. today i feel really weak & exhausted, so it is normal to feel like this with shingles. i understand it is isolating as you don't want to risk infecting other people with chicken pox by socialising in any way; i haven't even seen my mum in over 3wks. i think my bout of it is due to chronic illness with bowel problems at present, so I am run down with that anyway. don't beat yourself up about having to sleep more at present hun, just go with it if you can. i can get up after a good 8hr sleep & still feel like i could have a nap an hour later. it zaps you. the first doc i saw also gave me amitryptilline to take at bedtime, which is helping with the nerve pain. you might want to ask for that if you feel you need to. I'm going to continue with the amitryptilline until a week after anti virals finish(finish today) & then gradually titrate down to none, & hope the nerve pain will have then subsided. take care hun, & hope you feel better soon. xx
Hi Merry, just a question, can a shingles outbreak be resistant to anti virals? i finish my 2nd course today & am hoping it won't start to spread again in a couple of days like it did after i finished the first lot of anti virals. i know i shouldn't "what if" as it may not even happen, but i would just like to be informed about what to do/what should be done by doc if it does spread again after i finish this 2nd lot of meds. Many thanks Merry. x
Dear Jane,
Unfortunately, this happens all too often. Did you try to get a prescription for Doxepin or Sinequan? It is a great anti-itch medication pill that dermatologists use in the States. It does make one sleepy, so you take it at night. Before I figured out my allergies to sulfites, pravastatin, mangoes, cherries, bananas..etc, I was taking it with great relief as benadryl and atarax were not helping.
I am sorry I didn't respond to your earlier email, but I had yet another bout of Herpes Zoster-Shingles...you know how that goes...I needed to think about your problem with a clear head, ie without a huge headache....
I also suggest you see an anesthesiologist who does nerve blocks. He could possibly block the nerve causing the problem. Usually, they are pain specialists.
This is all I can think of right now for you.
I hope you try the Doxepin... Google the name for the UK name. Also go to a University anesthesiologist. Give it more than one try. Nerve blocks are tricky, but totally worth it!
Please keep me posted. I am with you in that itching is far worse than the pain.
All my best
Merry Juliana
Thank you, i will look up those meds, very kind of you to help. I'm so sorry you have been ill again, hope you feel better soon! x
Dear LooLoo,
Herpes Zoster-Shingles isn't resistant to antivirals, but in certain circumstances in which the individual has a lower immunity, ie immunocompromised due to autoimmune diseases, cancer, bowel disease, taking corticosteroids, etc the patient might need a longer course of antivirals, and the Herpes Zoster-Shingles might be more severe and more protracted. Also, I find that Famvir works best for me, others find Valtrex is best for them. If the shingles is disseminated, some need to be hospitalized for IV antivirals and supportive therapy.
I am a what if person, as well... LOL
I hope I answered your question....
Obviously, if you continue to have vesicle-blisters, see your physician immediately!
Best regards
Merry Juliana
Jane,
Herpes Zoster-Shingles is part of a way of life for me... LOL. I just wanted to explain myself...I do feel for you as itching a is untenable..
Again,
Best wishes
Merry Juliana
Hi Merry. Thankyou so much for answering, & I'm so sorry to hear you are unwell with it again.
What is disseminated shingles? & is famvir another anti viral med?
Thankyou again.
xx
Also Merry, my bowel conditions mean that i have diarrea daily at least 3 times out 5-8 bm's a day. could that possibly hinder optimum absorption of the anti viral med?
xx