Shingle Fatigue Duration

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I'm new to the site and I appreciate this type of support group! My doctor seems to be a good man but he doesn't listen to a whole lot of details that I give him so I thought I would ask people who have been there and done that so to speak. I thought maybe asking a few questions would be helpful for me to communicate, if there's a better way please let me know. Around the beginning of November (2019) began having a few bouts of fatigue. To best describe, it's that kind of feeling you have if your blood sugar is low, where you feel weird in your arms and legs and feel weak and shaky light-headed etc. It would come in spurts and then just go away. I made an appointment with my doctor, did blood work, everything seemed to be fine with results, with the exception of low vitamin D and creatinine levels that were a little high but he was not concerned about it so he would check that in 6 months. At the time it was usually accompanied with a stomacache and so he gave me a prescription acid reducers. Well, over the Thanksgiving holiday I had a small blister on my back about the size of fifty cent piece, right at that same time I noticed the front of my body was sore like I pulled a muscle, my wife at had shingles so she thought maybe it look like that but seem to not be concerned. The next day I had a small rash of little blisters on my front. The Monday after Thanksgiving I went to my doctor and he said that shingles and gave me 10 day supply of the antiviral to take. Please excuse the long history there but I wanted to be thorough so if anyone were gracious enough to answer my questions they would have information! Not ever having shingles before and comparing it to my wife's outbreak I considered my case a very mild one, never got any more blisters and had some pain but not over the top. So my questions are as follows: 1. Could my feelings of fatigue be traced to the shingles even though it took a couple weeks for rash to appear? 2. Is it still possible to have feelings of this fatigue come on me from time to time even though it's been a little over a month since outbreak? 3. The area on my back where I had shingles had nerve pain, and then while working I pulled a muscle in that same area, could that be related or just a coincidence? I had one of these episodes of fatigue this morning after I worked a couple hours outside physically, but they have seemed to have lessened since I originally went to my doctor about it. Thank you for anyone willing to share your thoughts I really do appreciate it! Dan

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  • Posted

    Hello!

    1. Yes
    2. Yes
    3. Not sure but I wouldn't put it past this nasty virus to cause other issues as well.

    Sorry to meet you here but glad you had a mild case. This can be so utterly horrid and last for years. I am almost two years out, very severe at the time, and still have fatigue and other issues.

    • Posted

      Thank you so much for your reply, , my wife had a bad case and I felt so bad for her, 2 years later and she still has some sensitivity where the blisters were, thank you again!

  • Edited

    Hi Dan,

    Your exhaustion, fatigue, malaise, lightheaded feeling, and dizziness that preceded your rash and pain definitely is part of the Herpes Zoster-Shingles. Those symptoms certainly can persist for months after the pain and rash have resolved.

    You also can experience pain at the rash site long after you think it should be gone.

    As your Vitamin D level is low, you should be taking Vitamin D 2000 IU daily. I find the gel caps easier to swallow. Vitamin D helps with your immune system.

    Physical activity seems to cause more pain at the shingles site, as does sunlight. You are better off trying to rest and sleep at this stage, as the nerves are still inflamed.

    I am a Nurse Practitioner in the States. I have had recurrent episodes of Herpes Zoster-Shingles every three weeks in my right ea r for the past 23 years.

    If you have more questions, please let me know. I have a huge post I can send you.

    Best Wishes

    Merry Juliana

    • Edited

      Good morning Merry, I appreciate such a thoughtful reply! After reading your post I went and checked the bottle that the vitamin D is in, and I'm taking 1000 IU per day so I will double that as you suggested. You mentioned having a longer post from earlier, I would love to read that.

      Pain in the rash site is not very bad now but I still get that run down feeling here and there, like somebody opens a valve and lets all my energy out. and then a little while later the run down feeling it will kind of go away (usually I lay down!)

      My main concern was trying to understand if shingles can cause that weakness and fatigue even two months later. With my personality, I guess I can bear things a lot better if I know that it's part of the process. the more I'm learning about shingles is that is not just a hit and run and then you move on it's something that your body has to deal with it over some time. I am very overwhelmed by your particular case of shingles that seems to be pretty rare am I correct? thank you again Merry for your post, it was very comforting, and I will pray for the both of us that we will be free from this!

      Dan

    • Edited

      Hi Dan,

      I will send my entire post on Herpes Zoster-Shingles, and will recommend that you receive the Shingrix Vaccine. It is highly efficacious in preventing a recurrence of Shingles.

      I am so glad I could help you. I believe knowledge is power. So many in the medical community are abysmally ignorant regarding the diagnosis, treatment, and management of the disease.

      If you live in the United States, and you are under 50 years old, you need a note from your clinician stating you have had Shingles, and your insurance will cover their portion. If you live in the UK, you must be 70 years, no exceptions.

      Best Regards,

      Merry Juliana

    • Posted

      Dear Dan,

      In response to your kind letter, my case is rare, but others on this forum have had it far worse. I am the type who adapts, fights to live another day, and moves on. This letter is what I have learned in response to living with disease.

      I have autoimmune disease, but did not know it during the initial few episodes. I also have breast cancer, with an excellent prognosis. I am an optimist by nature. I learn as much as I can about a disease to treat and conquer it.

      Happy Healing!

      HERPES ZOSTER SHINGLES

      I am so sorry that you are suffering from this disease. Unfortunately, there is a lot of misinformation among health professionals. Many health care professionals are abysmally ignorant regarding the diagnosis, the signs and symptoms of the disease, and the treatment and management of the disease. They loathe to prescribe opioids for the acute pain.

      I had my first episode 23-1/2 years ago in my right ear, mouth, and throat. It took three ENTs to diagnose it. It felt like I was in childbirth via my ear canal while being tased!

      I have had Herpes Zoster-Shingles in my right ear, mouth, and throat every three weeks for the past 23-1/2 years. For the past 2 years it spread to my right scalp. I have had it twice in my right eye.

      Because I suffered so much with the disease, I am extremely active on this forum. My goals are to educate, support, and advise the people. I have learned so much from many wonderful individuals on this forum. I am a retired Nurse Practitioner in the States.

      There are three stages to Herpes Zoster-Shingles.

      THE FIRST STAGE-ACUTE STAGE PREERUPTION

      Pain

      Patchy redness

      Swelling, in the dermatomal area of involvement

      Swollen Lymph Nodes, either at this stage or subsequently

      Constitutional Symptoms

      Headache

      Photophobia

      Aches and Pains

      Mild Fever

      Chills

      Fatigue

      Exhaustion

      THE SECOND STAGE-ERUPTION

      Grouped herpetiform vesicles-blisters developing on the red base (the classic finding)

      The vesicles come in crops or waves over a period of usually 5 days that typically appear unilaterally, stopping abruptly at the midline

      Vesicular involution: Vesicles initially are clear but eventually cloud, rupture, crust, and involute (shrink)

      After vesicular involution, slow resolution of the remaining

      red plaques, typically without visible

      sequelae

      Scarring can occur if the skin has been compromised by

      excoriation, secondary infection, or other complications

      Almost all adults experience pain, typically severe

      A few experience severe pain without a vesicular eruption (Zoster Sine Herpete)

      Symptoms tend to resolve over 10-15 days,

      but can last much longer

      Complete healing of lesions may require up to a month

      THE THIRD STAGE PHN

      POST HERPETIC NEURALGIA

      Persistent or recurring pain lasting 30 or more days

      after the acute infection or after all lesions have crusted (9-45% of all cases)

      Pain usually is confined to the area of original

      dermatomal involvement

      The pain can be severe and incapacitating

      Pain can persist for weeks, months, or years

      Slow resolution of pain is especially common in the

      elderly

      PHN is observed more frequently after cases

      ofHerpes Zoster-Shingles Ophthalmicus

      (HZO)

      Herpes Zoster-Shingles Oticus

      (Ramsay Hunt Syndrome)

      and in instances of upper-body dermatomal involvement

      TREATMENT & MANAGEMENT

      Antivirals

      The cornerstone of treatment

      Should be started within three days of onset of

      symptoms or rash

      Famcyclovir 500 mg 3x daily 7-10 days

      Most efficacious

      Newest Antiviral

      Valacyclovir 1000mg 3x daily 7-10 days

      Less efficacious than Famcyclovir

      Large pill

      Based on Acyclovir

      Acyclovir 500mg 5x daily 7-10 days

      Most resistance to this Antiviral

      Oldest Drug

      Cheapest drug

      Difficult schedule of 5x daily

      USE THE FOLLOWING of each class together

      Anticonvulsants

      Gabapentin-Neurontin

      Dosages must be tapered up and down

      Effective as adjunct in acute stage and PHN

      Pregabalin-Lyrica

      Dosages must be tapered up and down

      Effective as adjunct in acute stage and PHN

      Weight Gainer

      Affects moods

      Difficult to wean off due to withdrawal symptoms.

      Antidepressants

      Dosages must be tapered up and down

      Effective as adjunct in acute stage and PHN

      Difficult to wean off due to withdrawal symptoms.

      Cymbalta SNRI

      Venlafaxine SNRI

      Elavil tricyclic

      ANALGESICS

      OPIOIDS

      Oxycodone

      Codeine

      Hydrocodone

      IF YOUR PAIN IS NOT WELL CONTROLLED WITHIN THE FIRST TWO WEEKS, GET IT UNDER CONTROL BY DEMANDING OPIOIDS.

      The pain often increases markedly the second week of the disease.

      HERPES ZOSTER SHINGLES IS ONE OF THE MOST PAINFUL AFFLICTIONS OF MANKIND SECOND TO CANCER AS IT INVOLVES NERVE PAIN.

      IT IS THE PHYSICIAN'S DUTY TO HELP THE PATIENT IN PAIN. OPIOIDS STILL ARE THE BEST OPTION FOR ACUTE PAIN.

      Gabapentin-Neurontin or Pregabalin-Lyrica can help decrease the neurogenic pain when used in conjunction with Opioids

      Topicals

      Lidocaine/Benzocaine

      Found in Bactine, Solarcaine, Oragel, Salonpas

      Auroguard, etc

      Numbs the skin nerve endings

      Corticosteroid Creams OTC

      Decreases inflammation, soothes topical swelling,

      pain

      Cool Compresses/ICE

      COTTON CLOTHING

      SLEEP AND REST

      You will experience fatigue and exhaustion and want to sleep. Obey your body. You cannot power through this. Take off from work. If you don't, it will only get worse.

      CONTAGIOUS

      Remember: your exposed rash is contagious to all individuals who have not as yet had chickenpox.

      This list includes all pregnant women and their unborn fetuses. Many women do not know in the early stages if they are pregnant.

      If someone has been fully vaccinated, they are protected. The unborn child is never protected.

      Cover your rash with clothing or a dressing.

      You are no longer infectious when every last vesicle-blister has scabbed over/ dried up.

      PREVENTION of SHINGLES

      Get the Shingrix Vaccine, a two part injection, taken 2-6 months apart.

      The efficacy is 93%

      1. It is available in the US at age 50 with insurance
      2. If you have had Shingles, and are in the US, it is covered by your insurance. Have your physician write a note stating you have had Shingles.
      3. In the UK, it is not available until age 70.

        ADDENDUM the Shingrex vaccine has helped decrease the intensity of pain of my episodes, but not decrease the frequency of episodes.

      High Lysine Low Arginine Diet

      Google High Lysine Low Arginine Diet and Herpes.

      The amino acid Lysine helps decrease Herpes and Arginine triggers Herpes Zoster-Shingles.

      If you binge on chocolate or nuts, and find yourself getting a horrible prolonged shingles episode after,

      it is due to the high amino acid content of Arginine in chocolate and nuts.

      You can take Lysine supplements, but there can always be issues with drug interactions, adverse reactions, and harm to the heart, liver, and kidneys.

      I hope this letter has helped you in understanding your disease and how to care for yourself.

    • Posted

      i just wanted some more information on how the shingles can effect how you feel.today is my second week since i had an outbreak of blisters on my scalp and forehead.the first week i didnt feel sick or fatigued but at the beginning of the second week ive felt sick almost like the flu without a fever or chills and all i want to do is sleep all day.my blisters are healing up well and im on zovirex 800mg four times a day.im 48 years old and healthy but have been stressed out for awhile and i believe this is why i got them.how long can i feel like this and what can i do for exercise.i need to get out of the house because its driving me crazy.

  • Posted

    There is a lot in your story which matches mine. I have had shingles 3 times but the first time was by far the worst. Started with discomfort and mild pain, then rash appeared, then some nerve pain in surrounding areas.. Doctor gave me antivirals but said that they may not be effective as it took me some time to get it confirmed as I initially had no idea what was going on, so diagnosis was late.

    The fatigue was by far the most problematic part of the whole thing for me, and i have to be honest and say that it probably took 3-4 months before I felt completely normal again. The key is to rest and not push yourself until you are recovered.

    hope this helps

    • Posted

      thank you! yes what you wrote helps me very much, yes I wasn't prepared for the fatigue part of it all but I've noticed it is increasingly getting better over time just sometimes it hits me like a train, thank you for taking the time to reply and please know that you helped me! everyone on this site who has replied has been so helpful and I'm very grateful!

  • Posted

    I have always been fairly healthy in my life, fairly strong, never a wall flower when it came to life. This virus had me bedridden for weeks, something which had never happened to me before. I was so weak at one point that I could barely eat. I'm much better now but still have the bouts of fatigue and don't have the stamina that I had prior to shingles. Day to day life in home life generally doable but out in the world, say shopping or sitting at a sports game, can be a struggle. This is 2 years later. My body has been rumbling this past month or so and I think the shingles came back at the same place but it was very mild though it still had me in some pain, a lot of itching, and napping every evening after dinner.

    Anyway, rest, eat healthy food, take Lysine and Vit. C and D and whatever else, and be better.

  • Posted

    I know your fatigue! My shingles started like yours with lethargy and stomach ache and just feeling icky. After 10 days the blisters. Along my ulnar nerve. Cleared up, and then the real pain began. Friends said "keep pushing!" I tried, but was unable to play 3 rounds of golf a week. Could only walk 9 holes at a time, every other day, and then was exhausted. I basically let the flower beds go, doing the bare minimum. After 6 weeks of complete exhaustion went to the doctor. She said "I want you to go to bed for 7 days. DO NOTHING!" Wow, that was so hard! But I did it. Ate out, bought pizza, did the bare minimum to keep the house going. After seven days it was amazing. But the tiredness was still lurking. For SEVEN months, I did a busy day then a rest day then a busy day. I planned around that schedule. Month 8 I FINALLY had the energy to houseclean my office, do all the things I neglected inside and out.

    I'm still careful not to get tired, but I expect to play full golf in the spring, I work out at the pool twice a week.

    AND I had a blood draw for a physical. She stuck the needle in one of my HOT shingle spots that had JUST disappeared. And guess what! That HOT spot returned. Those nerves are really ragged.

    Some things I found that help that aren't listed anywhere: burn spray, Noxema cleansing cream (!), Vicks vaporub. Right at the end in October/November I smeared the sites on my arm with Noxema, and then wore a UV sleeve over that arm during the night. That also helped.

    Unless your doc has had shingles, he has NO CLUE!

    • Posted

      Wow, what a story! you really went through it, but I'm so glad you're feeling better, my wife had shingles a couple years ago, she had way more blisters than I did, but my bouts of fatigue were much worse. I have a physical job so I have had to learn to adapt like you did, thank you for sharing it really helps me, everyone on this blog has been so great... did you do anything different with your diet or supplements?

  • Edited

    My health food guru advised B6 in addition to L-Lysine. So I ordered a CoEnzyme B-Complex. That takes a couple weeks to really kick in. But it did.

    It's been 8 months today since this all started, and other then one hot spot, I feel great again. Energy is returning. BUT if I feel tired, I stop and hit the recliner. Take a nap.

  • Posted

    thanks for confirming the fatigue factor.

    this is my 8th out break of shingles in 15 years! This year ive had two outbreaks, 4 months apart. these last two outbreaks i am experiencing more fatigue than i ever had in the past. all the doctors keep saying is 'rest'...... i want to know for how long and why it takes so long to recover. the info i found in this post indicates that it varies. How will i know when ive had enough rest--- so i can be normal again?? why does exertion bother this virus?

    any suggestions will be helpful. im 3 weeks into this episode---- and am experiencing tremendous fatigue episodes. Can sleep for8-10 hours than take another nap fro 3-5 hours. just feel washed out constantly! from what this post is saying us that what im experiencing is normal. than you for that- doesnt make feel better, but the information is helpful. thank you!

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