[AMA] I Have Shingles & In the Worst Pain Of My Life (40/M)

I couldn't find a shingles post so here we go…

Day 1 - 4 weeks ago I went to bed and started to feel pain in my right rib. I'm fairly active so thought it must have been gym related and thought nothing of it.

Day 2 - Next morning I woke up and still had the pain but also pain on my back, still fairly mild but constant. Still thought it was just gym related because I have had back pain in the same area before. Thought maybe nerve related and that was causing the pain to radiate to the ribs. That afternoon I was flying to Melbourne for a short 3 night trip - still caught the flight. Woke up at 2am and it felt like someone had taken a baseball bat and smashed every bone body in my torso. It was the most pain I ever felt in my life. I was just laying in bed in agony, trying to somehow fall asleep as I didn't want to go to hospital.

Day 3 - Woke up in moderate/severe pain and went straight to the doctors who did a heart scan and sent me off to get a chest xray which would come back the following day. There was still just pain and no rash showing so he gave me codeine for the pain. Realised the codeine was not helping with the pain but alcohol did help. Went to sleep and woke up at 1-2 am and again the most pain I have ever felt before. It was like every bone had been smashed and I was laying on the ground in completely agony for an hour before I got tired and got a few hours asleep. This night was worse than the other before. I should have gone to hospital then.

Day 4 - Woke up and noticed some red patches and thought farkk now I have internal bleeding and went straight to hospital. One look and the nurse immediately knew it was shingles. I was put on anti virals and some stronger pain meds.

Day 5 - 14. After starting the anti virals, it started to feel a bit better. It was still a constant minimum 5/10 pain and I would still wake up a lot in pain but nothing like before.

Day 15+ Onwards - After finishing the anti virals, all the pain came back with vengeance. I am constantly in pain and have not had 1 night since where I have not woken up at least 4-5x times in agony.

The pain goes from feeling like my bones have been smashed, to feeling like someone has poured acid on my skin to there being a million bugs crawling under my skin and if I go to touch the skin, it feels like I'm touching it with razor blades. Thankfully I don't get pain from water touching my skin and have found showers/baths are my best relief.

I'm on a number of pain meds and antidepressents which can help with nerve pain. Tried 7 different creams which provides very minimal relief and all the suggested diet/supplement changes. Going to try Vitamin C drips soon to see if that helps. It's looking more like I have postherpetic neuralgia now which is nerve damaged caused from the shingles and can last for months, or years or a lifetime. I'm literally scared of going to bed at night because I know how much pain I'm going to wake up with in a couple of hours. Ask me anything lol

Comments

        • +6

          And if those don't work, perhaps try thoughts and prayers…

      • +1

        Hey mate I feel for you
        What dose of endep are you on?
        There isn’t really any reason you can’t concurrently be on lyrica

        It sounds like your analgesia is being undercooked. Feel free to PM if you’d like

        You can probably guess my profession

        • you can't get lyrica on an authority script ie. pbs rebatable if you don't try other agents and fail it first. that's redtape for you

          • @May4th: Lyrica is dirt cheap as a private (non PBS) script.

            If you’re ever hit with PBS restrictions - just check the private script fee cost first (like on chemist warehouses page). You might well be surprised

            Just know it wouldn’t contribute to your safety net as nonPBS - if that means anything to you

            • @firstpostbekind: its 16 vs 6 if you have healthcare card or pension.. probably not the case for OP but it's a big cost difference for some

        • @firstpostbekind Worked my way up to now 50mg which is still not doing anything. I believe it was just the side effects that come with Lyrica where he wanted me to try something now as harsh. But I have another appointment with my doc this week as I'm now out of the Amitriptyline and will ask to change.

      • I strongly suggest you get on pregabalin (lyrica) asap as it works much better for this.

    • +1

      Lyrica is a terrific drug for nerve pain but it can precipitate some really serious mental health issues in a minority of people. Use with caution.

      • Agreed. I had Lyrica for a really mild bout of shingles and I remembered it was the higest and most zen I have ever felt in my life. I did not want to get off it after but I knew I didn't want to get addicted. If I didn't know about addicition already I would have kept taking it.

  • -1

    Well this sounds freaking scary. Can the pain kill you? On a scale of 1-10 what would you have rated the pain?

    • +5

      Most of the day it's probably around a 6-7 but every nearly every night since I got it, I've woken up during the night with a 9-10.

      Don't think it will kill you, but what I have, postherpetic neuralgia (basically nerve damage), is the number one cause of pain related suicide.

      • +2

        Mate, I know this is a bit grim…

        But when I had shingles a while back (fortunately mild) my GP mentioned a former patient who had died by suicide from shingles-related pain.

        Please consider seeking some mental health support.

  • +1

    I had singles on my face and in one eye. Very painful!

    • +1

      worst possible location

      • +2

        I got away with only minor eye damage luckily

    • I had it on my scalp, didn't quite get to my eye. Dermatomes!

  • +17

    My dad got it on his face as well. Apart from the unbelievable pain you can get scabs inside the eye socket and he ended up with scarring.

    There is a pair of shingles shots. They are free for over 65s but they aren’t cheap otherwise. However, if you have private health insurance you can get some money back. We staggered our shots so they were in two different calendar years to get the most back from our health insurance.

    https://www.health.gov.au/topics/immunisation/vaccines/shing…

    • +4

      Who downvotes a comment like this??

      • +3

        The same people who don't believe in Covid.

        • +1

          This is why we can't have nice things.

        • Oh they believe in covid. They just think it was created by our alien overlords and transmitted via 5G so that they can castrate us with the vaccine that they also created.

    • What's the cost of shingle vaccines?

      I should check if my PHI covers it.

      • Roughly $300 per shot and you need two shots. Our reimbursement was under pharmaceutical benefits. We got $174.50 back from NIB per shot.

        • Wow, I thought it was going to be $20 like the flu shot lol

          • +1

            @JimB: Maybe we have different standards I would call $20 cheap. :)

            • -1

              @try2bhelpful: I never said $20 wasn’t cheap.

              • +1

                @JimB: Just reiterating my original comment was they weren’t cheap :)

                Got to admit the price was a tad startling but we made the choice it was much better than risking Shingles. I suspect the Government will negotiate the price down further and bring the age limit for free down as well. This is a replacement for the old Shingles vaccine that was cheap but nowhere near as effective.

                • @try2bhelpful: Hopefully Government will subsidise it.

                  $300 is quite a bit.

  • has anyone wondered why they name their stores https://www.shingleinn.com/locations/

  • -1

    There is a shingles vaccine.

    It's only free above age 65, but since it affected you so badly I would just pay for it out of pocket to avoid a repeat of that pain and trauma.

    • +2

      its about 300 bucks a shot, and you need two taken six months apart.

      qualifying for free shingles shots is probably the best thing developing an auto immune disorder has given me.

      • +5

        $600 sounds a lot less painful that what OP went through.

        • If you have extras cover you might get some money back as well.

      • I have an auto immune disorder and i don't qualify cause i'm to young still lol.

        • something shifted once i started on my new medication and i started getting offers from my health fund and my GP for all these random schemes/benefits. shingles vaccine was a requisite for the medication, i don't think anyone under like 65 gets it normally.

  • Do you have private health insurance? Or are using the public system?

    Do you think one is better then the other for this specific condition?

  • I had shingles a few years back, i had it on my head! felt like someone was constantly drilling into the back of my skull. When I got to the Dr they said it was too late to take any meds and just wait it out. Would not recommend.

    • -1

      not true medication is designed to stop it

      • +2

        not effective if taken >72hrs from onset

  • Had shingle last year. Taking both antivirals and L-lysine + B complex. Now occasionally take L-lysine as a preventable measure.

  • +1

    Had it towards the end of last year on my scalp and face. Understand your pain mate. Fortunate that it has mostly gone away with some intense sensitivity in the affected areas every now and then. Hope it dramatically improves for you soon!

  • +2
  • Nothing much you can do - lucky not in face and eyes that is the worst.
    You have to take the prescribed medication for 1 week I think. It worked for me.

    Hospitals not interested as you are not contagious - except for pregnant women.

    If anyone has had Chickenpox you have dormant Shingles. 100% guaranteed
    It will only become active in stressful times etc and it can come back!!

    GET VACCINATED NOW!!!

  • lucky u got it sorted early

  • -2

    Sorry about your condition and I hope you recover and feel better soon.

    My questions:

    • Do you regularly rotate the tyres in your car to reduce uneven wear?
    • What side of the bed do you sleep on?
    • How do you feel about the fact that the moon is ever so slowly drifting away from the earth?
    • How many species of spiders do you think you could readily identify?
  • +1

    OP got lucky that he got to a doc before antivirals cut off date post which is "wait til it subsides" kinda treatment. Had shingles in my mid 20s due to prolonged work stress (probably the hardest ive ever worked in my career) and yes, the nerve pain can get quite bad. I have no questions, just wishing you good luck on the recovery.

  • +1

    I can vouch for the medicated patches.
    If the post herpetic neuralgia continues, speak to your GP about getting prescribed some of the older drugs for depression that act as neuro blockers - I've been on low dose endep and it works well

  • +1

    I can sympathise. Went thru this last year in April, copper cold sores, thrush and shingles within a couple of months. My immune system obviously somewhat suppressed

    I found Dr Berg on YouTube and others have some decent tips. The recommended high strength vitamin D along with vitamin K2 to keep it regulated seemed to help speed up my recovery and I have maintained a dose of 5-10000IU as my levels, whilst not low, were only just above the low level marker. Touch wood it's been a year without any major illnesses.

    As always, DYOR and good luck with a speedy recovery.

    FYI, I got onto the antivirals quickly, the sores left and I had pain for about a month after then super sensitivity lessening weekly for about a further two months.

    • I actually follow Dr Berg and searched his videos for singles and started exactly what you said. I wish it did it earlier. My immune system is wrecked atm, I've had 3 mouth ulcers pop up this week also.

  • Last month, after dealing with a bad cough and fever, I ended up with shingles. My doctor first gave me antibiotics, but when I saw pimple-like spots on my face the next day, I went back, and he diagnosed me with shingles. He said I was lucky to be diagnosed within three days because otherwise, it could have taken months to recover. The pain was intense, like sharp, shooting pain, but thankfully, it's gone now. Make sure to take vitamin D (I took Ostelin Vitamin D3 1000 IU, double dose) and drink lots of water. If you start treatment after three days, it will sadly take longer to ease the pain.

  • +1

    1) Do you wish you had taken Shingrix?

    2) Why is it only free for over 65s?

    • It tends to affect oldies worse. It isn’t a cheap vaccine so there is a cut off. We don’t quite qualify for free yet but we are travelling through Europe in September/October and we decided we wouldn’t take the risk.

    • 2) cost benefit ratio.

      The rates of shingles are higher in older people, preventing shingles in a population with low % of cases (younger people) cost too much money for the number of cases it prevents - apparently.

  • Lucky its not chicken pox.. holy (profanity) does chicken pox hurt as an adult male that never had them as a child. Literally makes you wish for death. Itchy painful nasuating death.

  • shingles even the name sounds scary

    • Always made me think of housing fixtures

  • Got it when I was about thirteen. Was really itchy lines of rash on side of my/hip leg, but that was about it. Hope I don't get it again!

    Re. your AMA, my question is: When you put on pants, which leg do you put in first?

  • It was the most pain I ever felt in my life. I was just laying in bed in agony, trying to somehow fall asleep as I didn't want to go to hospital.

    How much pain can someone have experienced if the worst pain they've felt in their life wasn't enough for an immediate hospital visit??

    Snark aside, that sounds really shitty OP, good luck with your recovery. I think most people with shingles (in my experience) report pain, but i've not heard people describe it as razor blades, do you think your pain is worse than average?

    • I should have gone to the hospital those first couple of nights and think 99% of people would have. I think it was only because I was on holiday / interstate that I tried to convince myself it was nothing serious. I'm very confident that my pain is much worse than average. My background is also Army so I'm not really the type of person that exaggerates pain.

  • Well, the good thing is you should be immune to another outbreak for a few years. After which you can decide to self-fund a shingrex shot. I had chicken pox as a kid and shingles just over 2 years ago in my hip region. 2+ years on there is still constant and ongoing pain - hip/back/tailbone area. Some days it's quite bad, other days it's just a strange tingling distraction. It feels like a strange nerve pain deep inside the bone. Glad it wasn't on your face or in your eyes!

    There's not much you can do about it. Life is pain.You'll be fine - move on with life. Good luck!

    Do you use Apple/Android/Other?

  • my condolences

  • -1

    Better call Saul.
    He always helps

  • Mate - not sure where you are located, but I have experienced what you have felt as I went through this about 10 months ago. I am a 42 yr Asian male living near Eastwood area in Sydney, and had shingles on my chest and back. First, I thought it was rashes only, then after a week it hit me like a train. Worst pain ever, skin becomes super sensitive to anything touching it, and even wearing a shirt feels like torture! GP and the doctor at the emegency dept told me to just take Panadol and Nurofen…. thank goodness I found a Chinese herbal medicine practitioner and acupuncturist that fixed me. I had 5 rounds of acupuncture by the end, drank tons of Chinese medicine, and 2 months later, also 95% recovered. Now 10 months later the scars are gone too. I can't say this will work for you for sure but you might be able to give it a try. The advice I got back then is to hurry up and get the treatment done asap, as the longer it is the more damage your nerves will get down the track. Happy for you to DM me if you want to find out more.

    • Hey, thanks for the info. I'm not in Sydney but found somewhere close by with good reviews for what you mentioned and have made a booking for tomorrow. All the info I'm reading now, a lot of people swear by it, so fingers crossed.

      • -1

        That’s great to know. I know how bad it feels, and will never forget that pain. People who have not experienced it will not be able to relate. I went to the ER thinking that I was experiencing a heart attack as I could tell whether the sensation I felt was on my skin or my organ inside.

        Not to scare you but just for you to know what to expect, the acupuncture I had was not the typical ones. The practitioner used some kind of small hammer with tiny blunt needles which punctured through the skin. Then, he used those heated cups to “suck” the blood out. It’s not as painful as it sounds, but the initial two treatments were pretty painful. It took me two treatments at least to feel a noticeable improvement afterwards, so be patient! Towards the end, he tried another type of treatment which involved putting longer needles under the burner, and repeatedly poking the affected area which weirdly feels very comfortable! I’m just glad that I didn’t have shingles on my face or my butt, or else it would have been a whole lot worse…

        • My brother had it on his chest and he also thought he was having a heart attack to start with

    • +2

      not commenting on effectiveness of the treatment but typically post-herpetic neuralgia settles within 2-3 months in a young healthy person

    • I’m interested in this healing, but cannot dm you?

      • Sorry new to the forum, I turned on my DM settings now!

  • +1

    Lemon Balm helps on many levels and most people have it in their own or a friends backyard. You can buy the tea at ebay, health food stores, etc.

    Lemon balm (Melissa officinalis) is beneficial for shingles due to its antiviral properties. It is often used by herbalists to help manage symptoms associated with shingles, as well as other viral infections like cold sores and chickenpox. The plant contains compounds such as tannins and eugenol, which contribute to its antiviral and soothing effects. For shingles, lemon balm can be applied topically in the form of creams or salves to reduce pain and inflammation and promote healing of the rash. Additionally, drinking lemon balm tea may help alleviate pain and support overall recovery by providing hydration and soothing effects.

    The biggest benefit from Lemon Balm appears to be its effects on the GABA system in the body. Shingles is caused by a pre-existing virus that sits in the body and is activated when one is stressed, this is why people with nervous conditions or who under stress are much more susceptible to it. Lemon balm has properties that affect the GABA (gamma-aminobutyric acid) system in the brain, which is significant for its anxiolytic (anxiety-reducing) effects. The herb contains rosmarinic acid, which has been shown to inhibit GABA transaminase (GABA-T), an enzyme that breaks down GABA. This inhibition leads to increased levels of GABA in the brain, which can help reduce anxiety and promote relaxation. Furthermore, lemon balm has been found to enhance GABA effectiveness similarly to certain medicinal drugs used to treat anxiety, making it a potential natural alternative for managing anxiety symptoms. The modulation of the GABAergic system by lemon balm is a key factor in its ability to reduce stress and anxiety
    .
    3-4 cups of tea a day are said to be very helpful for the condition, anxiety as well as to help with insomnia.

  • I had just finished gardening and thought a spider bit me.

    Had the tingling pain on front and back of my torso. Later learnt about the nerve pathways etc and then developed a series of blisters all along the nerves.

    I must have had a mild dose. Certainly not childbirth pain.

  • Sorry to hear man. Hope the worst days are over and you’re on the road for speedy recovery.

    i recently saw a YouTuber mentioned about it and it just really shocked me.

  • Had the vaccine. No side-effects. REALLY want to avoid shingles.

  • -2

    Would you say the pain is 'worse than childbirth'?

  • +2

    Note to self: get shingles vaccine

  • I'm not a naturopath kook, swear.

    You could try Peppermint oil for skin relief - when i had Hell's Itch (nerve pain from sunburn) this is the only thing that helped along with hot showers to numb the skin.

    No idea if it will work for Shingles - but you sound desperate.
    https://www.reddit.com/r/HellsItch/comments/8xuxd6/peppermin…

  • Ain't got time to fix the shingles
    Ain't got time to fix the floor
    Ain't got time to oil the hinges
    Nor to mend no window panes
    Ain't gonna need this house no longer

  • +1

    Try a pain clinic linked to a public hospital - they see this a lot. Some use compounded clonidine and amitryptiline cream for this but you need someone with knowledge in the area to prescribe it. A pain clinic may also look into peripheral nerve blocks too (the nerve itself, or a nerve nearby is injected with local anaesthetic).

    Can also try melatonin at night, it's a powerful neuroantioxidant and easily purchased online these days.

    But I strongly recommend going to a pain clinic - your GP can refer you and they can keep seeing you until it's getting better. It will improve over time.

  • How did you get the chicken pox in the 1st place?
    Was it via kissing the chicken or some other way?

    • +1

      From the gov page:-
      "…….can cause severe pain that can last for months."

    • +1

      Please go and google postherpetic neuralgia. Please.

      • -4

        Er… no thanks. Why not comment using normal words 'n stuff?

      • -3

        postherpetic

        MessyG, take note of the word "post" in that word. OP experienced his baseball bat pain BEFORE even the rash developed. This means your comment mentioning postherpetic neuralgia, which comes after the rash, has nothing to do with this particular individual's pain. Think before you post. Please.

    • +2

      A virus can cause severe disease in one person and mild disease in another. Not everyone gets affected the same way. Hope that helps.

      • -5

        I wasn't seeking help. You've chimed in with generic nothingness.

        Obviously some people can get a mild cold and die because of other conditions they have. There's always exceptions.

        I asked "since when" does shingles result in "baseball bat" extreme pain, the worst pain of your life. It's a highly valid point, that the vast majority of shingles cases do not involve extreme "baseball bat" pain. This wasn't mentioned in the original post, but should have been. Hope that helps.

        • +1

          If that's shingles, then shingles has dramatically changed since I had it.

          Shingles hasn't changed - this comment makes you look like you're seeking help (or need to).

          "since when" does shingles result in "baseball bat" extreme pain

          I suggest you actually read the comments on this post, and use google and reddit if you're interested in the answer, which is often.

          "The vast majority of shingles cases do not involve extreme "baseball bat" pain

          Cite a study.

          If you haven't experienced Shingles as an adult, the vaccine is probably a good idea.

          A sensible comment, although if you've had shingles more than 12 months ago, the vaccine is still a good idea.

    • +1

      Google suggests that pain before the rash showing is more common than not.

      You clearly were lucky and had a very mild case.

      • -3

        "Baseball Bat" pain is not common before the rash develops. Some discomfort, soreness and aches etc, but not extreme pain like you described.

        If you can find a source that says "extreme pain common before rash developers" then let's see it. Otherwise we must conclude that what happened to you is so rare as to justify mentioning that fact, which you still have not done.

      • I got severe pain before the rash showed up.

  • I feel your pain as someone who had this several years ago, although mine presented on my right sacral regions.

    I couldn't sit for a couple of months. Going to the toilet was horrible (especially number 2) because my rashes appeared on my right rectum….

    • …right rectum? How many rectums do you have?

      • +1

        LOL my bad I meant right side of my rectum

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