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Exhausted post shingles

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MsM81
MsM81

I was diagnosed with shingles 2 weeks ago. Compared to some, it was a mild case with just a small rash on my back. I caught it early and was given antibiotics which I finished last week. The rash has pretty much cleared but now I have overwhelming bouts of fatigue. Yesterday I literally couldn't move. Is this to do with the shingles and if so, how long does it take to be 100% better?

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  • CatherineG
    CatherineG MsM81

    Posted

    Thankyou Merry19451.....I am due to see my GP this week if I can get out of bed lol she did say the cocodamol could make me nauseous so will ask her for an alternative or one to stop the nausea. I'm also taking Amitryptilline  was taking that prior to the shingles for pain and depression they've upped that to 50 mgs I'm concerned as I have esophagitis and duodenitis plus a hiatus hernia am concerned that all the medication maybe making these conditions worse. Should speak to my GP about that as well. also have adhesions from ops plus a prolapse it's only recently I've managed to get of a few meds I was on felt quite proud of myself was down to only two pills a day was feeling much better in myself and then I was hit with a urine infection and what I thought was sciatica but was actually shingles. Never felt anything like this before don't know how you can put up with it on a regular basis for 20 years....it's soul destroying! My husband helps he's doing most things, don't know how I'd manage otherwise I do a little when I'm able to and that's not very often lately. Find it so frustrating having to change my whole day because of shingles. I try to take the meds I'm on as close to bedtime as I can so that I get some sleep, usually up at some stupid hour in tears take some more meds once the pain eases of I sleep for a bit this goes on all day. Appetite is poor as well the smell of cooking makes me gag living on dry tasteless stuff like oatcakes cereal toast etc is all I can manage at the mo. Husband had doughnuts last night and I couldn't entertain the idea of eating one and that's not like me. That's another thing I notice I can't tolerate sweet things it's a plain diet for the now. Managing soups that's about all that appeals to me ....find it hard to rest really I'm always thinking of things I should be doing or could be doing....I like to knit but that In itself was too much for me....I'm thinking whats the matter with me I haven't even got the energy to knit then my husband gives me a talking to and sends me back to bed to rest ...in saying that even typing on the iPad  is tiring me out , can't stand noise or bright lights either...try watching tv too and even that's draining me. Thanks again Merry19451 for taking the time to reply ...much appreciated 😊 Hope your okay must be horrible to have it in your ear. I've put myself on some vitamins and supplements to see if that helps ease things and to help to get better quicker 😊 Hope everyone else suffering from this horrible illness is getting better everyday xxx
    • Merry19451
      Merry19451 CatherineG

      Posted

      Dear Sweet Catherine,

      I have had to give myself permission to go easy on myself, to let things go, so to speak. The first episode was by far the worst, as I had no analgesics, no diagnosis at first, was in total agony, and was a single mother of a young boy. Now I have the treatment down and can help others. Photo/phonophobia ie bright lights and loud noise can be an issue with Zoster-Shingles... you are still suffering from a disease that is affecting your entire body, and few physicians appreciate the enormity of these symptoms.

      Again,

      Best Wishes,

      Merry Juliana

  • CatherineG
    CatherineG MsM81

    Posted

    Thanks Merry19451 ....got an app to see doc today he said I have PHN been given Gabapentin for that and to continue to take cocodamol and the Amitryptilline other than that he said it's a major virus that leaves you worn out and washed out he can't predict when or if it'll get better it's a case of take one day at a time and respect the illness and yourself.....he said it takes time depending on each individual case ...hope everyone else is coping okay and feeling better xxx
    • Merry19451
      Merry19451 CatherineG

      Posted

      Dear Catherine,

      I hope the Gabapentin, which is Neurontin,

      that I suggested, helps you. It truly does take time to recover from this disease. I shall be thinking of you.

      Again,

      Best Wishes.

      Merry Juliana

  • MsM81
    MsM81

    Posted

    I'm glad this thread is helping people. I can't believe it's nearly a year ago since I had my shingles! I started to feel much better about 2 months after my bout and 100% in the summer. I still get the tingling sensation at times where the shingles started but I think that's with me for life now. Just want to reassure those who are suffering now that even though it takes time, it does pass. Just be kind to yourself and listen to your body. If you're feeling run down then rest rest and rest some more. Hard for those that aren't used to not being on the go but, believe me, it's the best remedy for your body. It's a horrible virus and I hope you all feel better very soon.
    • Merry19451
      Merry19451 MsM81

      Posted

      Hi MsM81,

      I agree with you that this Web site has helped many people. I am happy you have finally recovered and are back to yourself.

      Best Wishes

      Merry Juliana

  • CatherineG
    CatherineG MsM81

    Posted

    Glad I found this website it's helped me a lot, have gone from sitting crying at all hours with the pain to dealing with it. Had a good sleep last night with the Gabepentin it was bliss. Hubby slept better too he said I was sleeping like a baby 😄 Have dropped the ibuprofen doc said it wasn't good for me because of stomach issues so am happier about that now. So instead of fighting with it I'm dealing with it. Had some spots on my temples and neck and head as well as my buttock and legs all down the left side so the whole of my left side is affected pains shooting from my toes to my head at times. Does it affect your insides as well been getting a lot of strange feelings inside its like someone poking me with electrical rods drives you nuts at times. Thanks Merry 19451 and MsM81 for your posts and words of comfort helps a lot ......hope all others suffering with this illness get the help that they need too xxx
    • Merry19451
      Merry19451 CatherineG

      Posted

      Hi Catherine,

      I am so glad you and your husband finally slept.

      Zoster can feel like an electric burning taser poking you from within. The anticonvulsant Gabapentin certainly can make a difference in taking control of the disease and your body. I am on another anticonvulsant, Topamax, which I am certain helps prevent post herpetic neuralgia.

      Best Wishes

      Merry Juliana

    • sandi01178
      sandi01178 Merry19451

      Posted

      i am sooooo glad to have found yousmile  it is now 3wks after i went to the doc for a severe case of shingles. my whole left thigh front/side/some back was broken out. i have been off work since middle of dec - #1 becuz of two protruding discs #2 i went to freeport, grand bahamas for my 3rd round of adult stem cells to treat the ms diagnosis i have had for 32yrs. so all three of these things cause nerve pain and exhaustion and i don't know what the best route is to get back to "myself". i have been sleeping 10-14hrs a day which concerns my parents who live across the street. been taking lyrica & tylenol for the disc pain....which i think helped the shingle pain to be like a bad sunburn instead of excruiciating like some people have. i have been going to the chiro for 'xtreme dizziness usually when first rising out of bed and when laying down at nite = could this be part of the shingles??? thanx for answering everybody's questions = you are appreciated
    • Merry19451
      Merry19451 sandi01178

      Posted

      Hi Sandi,

      So sorry for your suffering.

      You certainly have more than your share of issues, don't you?

      I believe the Lyrica is helping the pain of the Herpes Zoster-Shingles outbreak be less intense than it would have been. I have Herpes Zoster Oticus in my right ear every three weeks for the last 20 years. I am on Topamax routinely and know that the Topamax attenuates the pain, as it is an anticonvulsant.

      I trust you received an antiviral promptly and also received Opioids for the pain.

      I believe these factors, antivirals and excellent pain control during the acute phase help decrease the likelihood of post herpetic neuralgia.

      I get dizziness when I arise and when I lie down with each bout of Zoster. Remember, you have a viremia circulating in your blood. It is affecting your entire body. Plus, you have MS for which you're on medications.

      I also get fatigue with each bout and rest a lot. I have many other medical issues, and I have learned to go with the flow and adapt to life with humor...

      Let me know how I can help.

      I am a nurse practitioner in the States.

      Best Wishes

      Merry Juliana

    • sandi01178
      sandi01178 Merry19451

      Posted

      thanx so very much for your reply.......good to know i'm not losing my mindcheesygrin so i will just keep plugging away and hopefully be able to get back to work soon! blessings to you always!!!!
    • Merry19451
      Merry19451 sandi01178

      Posted

      Hi Sandi,

      No, Sandi, you have not lost your mind, but if you find mine, please send it to me...

      LOL... Keep your sense of perspective about you. When you have chronic diseases, it is a choice to be a victim or to overcome the obstacles the diseases create. I choose to overcome what life throws at me and keep on going and laughing.

      Best Wishes

      Merry Juliana

    • sandi01178
      sandi01178 Merry19451

      Posted

      tee hee = i'm looking for any lost minds out there.......well 'cept the dirty mindssad .......don't need anything else that needs to be fixed, but if i find yours i will send it home!!!
    • susan_g.
      susan_g. Merry19451

      Posted

      Merry,

      I broke out in tears this morning when I found this thread.  I have been dealing with shingles for 25 years and have felt very alone and just a little bit crazy.  It has been especially true lately because I am not experiencing any blisters, just the tingling and pain.  Try explaining that to friends and family.

      I have had full blown cases many times where the blisters covered my stomach and back.  I went through a period of about 5-7 years where I consistently had just one or two blisters on my back or shoulders.

      But recently, it has been very bad.  I have had three cases this last year with only 1 or zero blisters.  But the tingling and pain is extreme.  I feel that everything is directed toward my lungs and it feels as if I am suffocating. 

      Since you seem to have so much knowledge on this subject, I have several questions.

      1. Has anyone ever said that a ciropractor helps prevent outbreaks since I have heard that the virus resides in your spinal cord. 

      2. Have you heard of anyone having lasting effects to internal organs (in my case -lungs) from shingles?

      3.  you recommended taking Famvir every day to prevent outbreaks but I saw in one of the posts that a Dr said not to since it could lose its effectiveness.  Any thoughts?

      The fatigue is killing me this round, but reading these posts has helped me realize that I am not alone.  After this last round, I now know that I need to get onto an antiviral fast even if I do not see any blisters.  And I need to stop pushing myself and just rest. 

      Thank you Merry for all of these posts.  You are doing a true service to many sufferers out there. 

      Susan G.

    • Ellie1943
      Ellie1943 susan_g.

      Posted

      Hi Susan, join this very 'Merry' club! wink It's a rotten illness and no one can see or feel how we do so it does feel like we're very much alone. It doesn't take much to trigger another bout of pain and exhaustion with or without the rash. Keep posting. Best wishes, pollyanna UK rolleyes
    • Merry19451
      Merry19451 susan_g.

      Posted

      Dear Susan,

      I am so very sorry for your suffering from this excruciating disease. The pain of shingles obviously is devastating,and the malaise and exhaustion are symptoms family usually fail to understand.

      I found that taking a prophylaxis dose of Famvir did nothing to prevent the recurrent Herpes Zoster-Shingles. I am immunocompromised, however, with autoimmune diseases. There is absolutely nothing in the literature that states taking a low dose of Famvir causes a loss of efficacy. Famvir is the most efficacious of the antivirals.

      As I have recurrent Herpes Zoster Oticus in my right ear every three to five weeks for the last 20 years, I know that I will need to rest, take Opioids, use Auralgon in the ear, which is a local anesthetic with Benzocaine, and I take Topamax, an anticonvulsant similar to Neurontin. I have avoided post herpetic neuralgia in this manner. I just go with the flow. I know I get the Zoster and live within the limits, but get good pain control. I am exhausted for half of my life and have a fever, malaise, fatigue, chills, sweating, aches, generalized pains, headache, ataxia, preceding the earpain, but I know this is part of my life and go with the flow....Things could be worse...

      As soon as I have the beginning symptoms, I know to start the Famvir. In that way, I am stuck with less intense pain for only 2-3 days instead of 7 days of agonizing pain.

      I wish there was something more to be done regarding the shingles sufferers of the world. Physicians are abysmally ignorant and unaware of the pain and myriad of symptoms that accompany the disease.

      Please let me know how I can help you. As a Registered Nurse for 43 years and Nurse Practitioner in the States, my goal is to educate and alleviate the pain and suffering.

      Best Wishes

      Merry Juliana

    • susan_g.
      susan_g. Merry19451

      Posted

      Merry,

      Thanks so much for the support.  I just saw in another one of your posts that you are dealing with pleurisy right now.  I find this interesting since I had pleurisy just a few weeks before my last case of shingles.  This is why I am concerned that the shingles is attacking my lungs.

      I am ony 55 and after 25 years of this disease it is getting harder and harder to bounce back.  I am thrilled to have found this group and appreciate all the advice.

      If anyone knows of some natural ways to help, I would appreciate it.  L-lysine has helped me immensely for years.  In fact I think a daily dose is why I was shingles free for about 5 years before 2015.  Now of course it has come back with a vengeance, with 3 episodes since March. 

      I also found a list of foods to avoid while having shingles because they are high in Arginine: Tomatoes, wheat germ, brussel sprouts, cashews, grapes, pumpkin seeds, pecans, blackberries, blueberries, peanuts, chocolate and sugar.

      Hope some of this helps other sufferers out there.  I am seeing a new Dr in a few days.  If I learn anything new, I will post.

      Thanks so much

      Susan g.

       

    • karenh123
      karenh123 susan_g.

      Posted

      So glad to read Susan G's post as well as many others.  I too have had a bout of what they think is shingles but concerned that I should see a neurologist as I am one who has the painful symptoms but NO BLISTERS and NO RASH.  After 3 weeks of sufferering severe pain from my left side-arm pit area to left shoulder blade like the typical shingles band I thought I would see my MD as I was traveling out of the country. Conclusion to start Acyclovir and Gabapentin ONLY if I broke out in a rash.  I asked if I could take the antiviral this week regardless in hopes it would help and it has.  I too am seeking the natural remedies to survive this illness and have come up with Susan's information as well.  To date I still have not taken the Gabapentin and pray this moves quickly.  It has not been a month.  I wouldn't wish this upon anyone.  
    • Merry19451
      Merry19451 karenh123

      Posted

      Dear Karen,

      I am so sorry for your suffering.

      It certainly sounds like you have Herpes Zoster. I would start the Gabapentin and antivirals immediately. One can have "Zoster Sine Herpete" or Shingles without the rash. Many physicians are abysmally ignorant regarding this disease. If it is a burning pain, or tingling pain in a dermatome distribution, especially if it was preceded by flu-like symptoms, such as headache, joint and muscle aches, fever, chills and sweating, malaise, fatigue, weakness, etc, I would say it is Zoster-Shingles and use the medication.

      It can be just as painful without the rash, as with the rash.

      I hope this helps. If it is still painful, see a different physician and ask for an Opioid. Shingles is excruciating.

      I hope I have helped you.

      I am a nurse practitioner in the States. Please let me know how I can help you.

      Best Wishes

      Merry Juliana

    • Azbella
      Azbella Merry19451

      Posted

      Hi just wonder where you . I'm in Az n ca . Drs aren't so quick to prescribe on opioid , esp a new me that doesn't know you at all
    • karenh123
      karenh123 Merry19451

      Posted

      You have been a great help providing information to many.  Thank you.  
    • Merry19451
      Merry19451 karenh123

      Posted

      Hi Karen,

      Where do you live?

      As Zoster-Shingles is considered an excruciating disease, the physician may consider prescribing a stronger analgesic.

      Merry Juliana

    • Azbella
      Azbella

      Posted

      A new Md . Oops. Happy mothers days to all 💐💐💐💐💐💐💐
    • karenh123
      karenh123 Merry19451

      Posted

      Hi Merry.  I am from NH.  I am not a whiney pants and have high pain tolerance but landed in the ER today because of the perfect storm of shingles - possible reaction to the acyclovir - exhaustion and dehydration.  I don't take meds because of reactions I have so I desperately need a more natural approach.  I feel for everyone who has this dehabilitation virus. It tops the chart as Lyme and no one around here wants to treat the source or even address it sad    
    • jane97743
      jane97743 Merry19451

      Posted

      Hi again Merry, I wonder if you can give me advice please? I stopped taking the Pregabilin  gradually as I thought it was giving me double vision, briefly throughout the day, I didn't take any yesterday and i had the most awful night, hardly sleeping at all and my forehead, head and eye lid were all itching like crazy!! it all then feels sore in the morning, I took a pregabilin this morning, as I am still getting nerve pain, it's a pain you just can't describe to anyone!! The dr is ringing me today and I will ask him yet again what he can prescribe for the intense itching!! I'd be grateful for your views on this, thank you, It is now 8 weeks since diagnosis!!
    • Merry19451
      Merry19451 jane97743

      Posted

      Jane,

      Do you have double vision off the pregabalin? There are other medications such as Neurontin for the pain with an Opioid for the pain with the use of Doxepin, Atarax, or Benadryl for the itching. I would ask for a combination of Neurontin (gabapentin) Plus oxycodone for the severe pain plus low dose Doxepin for the itching.

      Let me know what happens.

      Merry Juliana

    • jane97743
      jane97743 Merry19451

      Posted

      The dr has not suggested anything for the itching, just told me to not touch it at all and to keep it moisturised! I have stopped the pregabilin as i think that was causing the double vision at times, especially if I had done any vclose work like sewing! Is benadryl for  an allergy?
    • Merry19451
      Merry19451 jane97743

      Posted

      Jane,

      The doctor doesn't seem in tune to your needs. You can buy, I believe, Benadryl AKA

      diphenhydramine OTC in the UK. It is very good for itching. Take it at night as it causes sleepiness, but the anti-itch effect can last longer. You can take 25 mg every 6 hours, but then you should not drive, operate machinery, or care for children as you are under the influence!

      He did not prescribe an analgesic for the pain, either?

      Was this an interest or ophthalmologist?

      Merry Juliana

    • Merry19451
      Merry19451

      Posted

      Internist...

      Merry Juliana

    • jane97743
      jane97743 Merry19451

      Posted

      I am on co-dydramol if I get pain but I don't really get pain often. it's more the tender feeling if I touch my head, which is caused  the nerve endings, I take one amytriptyline at night and one co-dydramol and then I sleep well, If only the itching would stop on my eyelid it wouldn't be so bad! I am seeing my own dr in a couple of weeks so I will see how I feel then, Thank you for all your help!
    • Merry19451
      Merry19451 jane97743

      Posted

      Jane,

      I hope you start feeling better, soon...Sometimes the itching is worse than the excruciating pain...I've had both, so I know.

      Please keep me posted.

      All the best!

      Merry Juliana

    • jane97743
      jane97743 Merry19451

      Posted

      Hello Merry, I am pleased to receive your reply as now I am really worried that my eye is going to start causing me trouble again, I have discomfort and slighty hot feeling in my eye, I hope the only reasion is because that is the one that keeps itching on the eyelid and maybe it is sore as I have to admit i can't always avoid scratching it carefully. I am just so sick of all this now, you'd think that 8 weeks is long enough to suffer but obviously it goes on and on as you know! I have no rash  on my forehead as before, and I still take Aciclovir  every day as advised by the eye surgeon. I was starting to feel a bit happier earlier as I coloured my hair with no ill effects as it had no ammonia or peroxide in it, I am worried though that I have this nerve pain forever in my head . forehead and eye!
    • Merry19451
      Merry19451 jane97743

      Posted

      Jane,

      When do you see the Internist! Frankly, Acyclovir is the weakest of the three antivirals, with the shortest duration of action. You may want to ask your internist if you can switch to Famvir, in which the dose is Famvir 500 mg 3x daily for 7 days when you have an episode. Acyclovir was the first antiviral for Herpes Zoster-Shingles and is taken 5x daily. It is considered the least efficacious of the three, but is therefore the cheapest price. That is why the insurance companies love it. If you start showing more signs of Herpes Zoster-Shingles returning, I would immediately restart the Acyclovir at the 5x daily basis for 7 days and see your ophthalmologist STAT. Use Benadryl at night for the itching.

      Best Wishes

      Merry Juliana

    • avey
      avey Merry19451

      Posted

      Merry, I'm begnning to understand more and wanted to know if it is possible to get isolated rash at a much later time (As in the ear or in a just healed surgical wound)?  Would the antiviral be useful when symptoms return at any time?  With my exhaustion I am now having stinging appear in various places and soon they disaapear to another area. I do not  have Benadryl available but can take Cetirizine HCL 10mg for itching.  I'm not sleeping more than 5 hous and am trying to be as rested as possible however.  Would you suggest I try to start Gabapentin which I weaned off last month as it was not effective for I knew I would have travel ahead of me.  I'm still having my abdominal upsets and eating tires me.Thanks as always. At the moment more is quiet and restful here than elsewhere.  I'd like to go to  a dinner tomorrow and really need a good rest for it to happen.  It's the exhaustion that plagues me! Have a lovely weekend and Memorial Day all on the site. 
    • Merry19451
      Merry19451 avey

      Posted

      Avey,

      Cetirizine should help you with the itching. Where was your original rash? If it is recurring in the same spot, then you should restart the antivirals at the full dosage for 7 days. The rash does not drift around the body aimlessly.

      I hope this helps.

      Merry Juliana

    • jane97743
      jane97743 Merry19451

      Posted

      Thank you, I will definitely get something for the itching on Tuesday. as when the Dr said don't touch it that is easier said than done!! Thank you for all your advice, much appreceiated! I did wonder why I have these complications because I did start the Aciclovir as soon as I had the rash, which was just 2 red marks on my forehead, and slight redness above my eye., but maybe it's just not strong enough!! This really is a life changing illness and it's so difficult to feel happy with all the problems that might go on for much longer, 
    • Merry19451
      Merry19451 jane97743

      Posted

      Dear Jane,

      You will get through this. Recovery is a process. Tincture of time is Mother Nature's way of healing.

      Please keep me posted.

      Best Wishes

      Merry Juliana

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