[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

  • +47

    Do you own any eneloops and if so, how many?

    • +41

      Yes, 2 x 4 packs of both AA and AAA

      • +13

        Hi mate, I was in the same boat like you just about a month ago. I had shingles about three years ago and I knew what it felt like. I mentioned it to the doctors, but the doctors still gave me opioids, Which are not effective painkillers for shingles as it’s NERV pain. Anyway, Long story short, What worked for me was topical nerve patch on the site of pain. It worked like magic straightaway. It’s available over-the-counter in chemist (Nervoderm Lignocaine 5 Dermal Patch
        ). This patch is specially design for this purpose. The silly part is, it was not prescribed by Dr. I had to go figure it out myself. I haven’t read the whole thread. I’m sorry if someone’s already advised this to you.

        • +1

          I would like to know how both of you contracted shingles? Any theories? If not, did the doctors give you an idea of how you got it?

          • +5

            @serpserpserp: I have had chickenpox as a kid. And once you have had this viral infection, the virus stays dormant in your body and gets “activated” causing symptoms when your immunity is down.

          • +1

            @serpserpserp: you only get shingles if you have chicken pox when you was younger, if you never have chickenpox you can't get shingles
            it also depends on each person body, some people have chickenpox and never get shingles

            • +1

              @MrMarket: if you had chicken pox as a kid you can get shingles once or multiple times as an adult, its usually a patch of chicken pox looking thing on the abdomin, its very fkin painful and you just have to fight through it, they say it activates from stress

      • -3

        is it herpes? like STD?

        • Shingles/Chicken pox is part of the Herpes family of virus'. Herpes Zoster is the name of it.

  • +8

    Got weed?

    • +14

      Funny enough, getting a pen tonight to see if it helps.

      • +2

        how did it go?

        • Barely noticeable difference and it's from a good source. I'm thinking of trying drops.

    • helps dramatically with skin problems

      • Helps with skin, do tell me more. Cbd or smoke?

        • even hemp stuff. mostly products that have been in other countries but only slowly getting released in Australia.

  • I'm sorry to hear that, it sounds awful!
    Have you had tests to see how well your immune system is functioning? I've read elsewhere that shingles can emerge when it's compromised.
    Are you changing your diet as to not aggravate possible neuralgia? (eg alcohol)

    • +2

      I had blood tests done around 5 months ago and everything was good. My lifestyle / eating habits is already much healthier than most others but I'm going to keep improving on it. I did have a lingering cold right before I got the shingles so my immune was down. It's common for stress to cause shingles when you're already unwell, but I wasn't under any. I'm not a big drinker but will be more wary of my intake.

  • -4

    The way you are describing the associated pain is much worse than shingles would give you unless your tolerance for pain is very low.

    Did you have chicken pox as a kid ?

    • +5

      Yes to chicken pox. I believe you can only get shingles if you have had it.

      My tolerance to pain is very high. There's obviously going to be degrees of severity. I've read a couple of comments on reddit from females saying their pain was on the same level as child birth.

      • +5

        I was lulled into a false sense of security by others who had had mild doses of shingles. The younger you get it, usually the milder it is. I’m 61 and got it about 6 weeks ago. Rash on upper breast, armpit and upper back. Excruciating pain down to the tips of my fingers. Couldn’t wear a bra for a couple of weeks. My doctor advised Soov burn spray from the chemist. It’s got 2% lidocaine in it. It was a Godsend as the painkillers don’t work well. The pain is slowly getting better. My armpit is the most painful area still. Apparently we are immune from getting Shingles again, however, have read many accounts of people getting it more than once. The vaccine is still an option, though comes with some health concerns so do your research and make your decision from there. Good luck.

        • +3

          You are certainly not "immune from getting shingles again".

        • +7

          Apparently we are immune from getting Shingles again

          No you are not immune, can reoccur many times. Get the vaccine.

        • +1

          Had the vaccine with minimal side effects. Just felt a bit rundown and a sore arm. However, as you said YMMV.

          Looked at what my dad went through with getting shingles on his head and went “no way”.

          • @try2bhelpful: At what age did you get the vaccine? Did you pay for it yourself?

            • +2

              @ippy: I was 62 and did pay for it myself. It was $300 a shot and I got $174.50 per shot back from my NIB extras cover under pharmaceuticals. After watching what my dad went through with Shingles on his head I wasn’t going to risk the next couple of years waiting.

              I personally think the Government will negotiate the price of the vaccine down and bring the free age down as well. The thing is how long this will take. It is all about the appetite for risk.

    • +1

      I've read a thread on ask reddit on the worst pain you've ever felt and shingles came up a lot

      "Shingles. Had it on the upper left side of my back and wrapped around to under my left boob. The pain is at a constant 9 with no waves of pain, just constant pain. It goes all the way into your muscles and nerves so it’s not just a superficial pain. It felt like a red hot poker was being dragged across and stabbing me with it. "

      • +3

        I've read a thread on ask reddit on the worst pain you've ever felt and shingles came up a lot

        If you haven't had kidney stones you haven't had pain.

        • Have you had shingles and kidney stones to be able to make the comparison? I've had kidney stones and been curled up on the floor of the shower, weeping in despair at the ceaseless pain but still couldn't make the comparison with bad shingles. Everyone experiences pain differently.

    • +2

      Shingles can be absolutely debilitating pain. Yes many people have it mild to moderate pain, but it can be absolute agony.

  • +9

    so it's fair to say, it aint saul goodman

    • +2

      There isn't enough evidence to imply causality. This is consistent with TGA findings.

      I did have a lingering cold right before I got the shingles so my immune was down

      OP stated the above, this is the most likely reason. Obviously it's not definitive.

      • +14

        But what if you really want to believe it is covid vaccine related? What does your modern “evidence” based medicine have to say against a deeply held want?

        • -5

          What if you really want to believe it is NOT covid vaccine related because the covid vaccine is safe and effective?
          Well at least you would fit right in with the Ozbargain crowd.

      • +6

        This is consistent with TGA findings.

        Whilst not arguing they are wrong in this case, after having dealt with GPs, specialists and the TGA itself a lot over the last few years, I wouldn't trust its conclusion as far as I can kick them. For the simple reason that they won't list something as linked until it is reported, and its not reported until the TGA links it. No-one is reporting things to them. Their conclusions are based on under-reporting. When it came to COVID vaccine adverse events the TGA didn't do any pre-preparation of the medical profession to look for vaccine adverse events, so the level of ignorance out where the patients go to their GPs and ask for diagnosis and help was mind boggling. Everything that might be a vaccine - any vaccine - adverse event was simply written off as something else that didn't respond to treatment when it was treated as being something else.

        Every time I see a new specialist on some other matter they want to know my medical history, they don't have a clue outside their own little area of specialty. But that doesn't stop them thinking - like all smart people and experts - that because they know a lot about something, they know a lot about everything. I don't claim to know much about medicine except what I've bothered researching thoroughly because I have or might have had it. But you can't tell them that means you know more about that particular thing outside their area of expertise than they do. That's not an auto-immune condition. Well, everyone else but you thinks it is. You've got something. No, I don't, I've got something else altogether. You can't have had that, because its always fatal. (That was GBS by the way.) Rubbish, it killed only one of the 173 Australians officially acknowledged by the TGA as having got it as a result of the COVID vaccination. Its really tiresome when you just want to tell them your medical history that they won't accept they don't know everything about everything.

      • +1

        I got Shingles after the flu vaccine. Not saying they are definitely connected, but worth a thought.

        • I got shingles a few days after my daughter got her chicken pox vaccine, which I took her to get. That was about 16 years ago. I think it took a couple of weeks for the pain to subside.

      • TGA findings

        Apparently TGA is funded ~90% by corporate pharma money

        • -5

          Source? Articles say the opposite.

          Do you think they should be funded by the low and middle class?

            • -5

              @lando54: I would argue fees and funding are two different things with different purposes. I can see how mixing them two up can work for Maryannes agenda.

              Do you "fund" your Uni when you did your Bac degree?

          • +2

            @Ughhh: When someone is going to write This is consistent with TGA findings.,
            but unaware that the 'consistency' of the findings, is heavily influenced by money,
            do you think saying "source?" and then say "articles say opposite" without citing sources is not ironically amusing?

            It's like the PM saying "RayGun is having a go."

            Besides, you were all over this thread — https://www.ozbargain.com.au/node/849523/comments — where it was mentioned, several times, that the TGA receives ~90% corporate, pharma money.

            • -2

              @whyisave:

              without citing sources is not ironically amusin

              Would like me to cite you the dictionary meaning on funding vs fees?

              where it was mentioned, several times

              Yes, by you and you only. I didn't realise you were a fact machine who deserves all the attention.

              I think you're still confused as to what my argument is. You justkeep going on and on about 90%.

              You never answered my question, did you fund your uni?

              • @Ughhh:

                Yes, by you and you only.

                Not only by me, but mentioned also by others, and I have no idea who they are either.

                You never answered my question, did you fund your uni?

                You never asked me, but that should not be the reason to neg someone, because I have never negged you nor anyone.

                Besides, you asked what seems like a rhetorical question
                about low or middle class people funding TGA (?!?)

                • -2

                  @whyisave:

                  You never asked me,

                  Ah dude, yeh I did, the comment after that…. I'm convinced you're just deliberately being silly now.

              • +2

                @Ughhh:

                Source? Articles say the opposite.

                Care to cite the articles that say the opposite?
                Here's the TGA document on their funding. https://www.tga.gov.au/sites/default/files/2022-09/2022-06-3…

                I would argue fees and funding are two different things with different purposes.

                Maybe different from a dictionary definition.. but that doesn't change the influence and corruption caused when the majority of their money is from the industry they are supposed to regulate.

        • +6

          Apparently TGA is funded ~90% by corporate pharma money

          Most of our regulators have shifted from taxpayer funded to industry funded through "fees" for applications. It never should of happened.

          This has had the effect of making the regulators subservient to corporate interests.

          The most recent & glaring example of this was with the appointment of John Skerritt, the former head of the TGA, as a director of the peak group representing the pharmaceutical industry in Australia.

          https://www.medicinesaustralia.com.au/media-release/professo…

          https://www.medicinesaustralia.com.au/about-us/who-we-are/

          It's an absolute scandal. Can you imagine the pharmaceutical industry appointing someone from the regulator that actually did a good job whilst in the TGA? No, of course they wouldn't. Skerritt is a bought bureaucrat, one of thousands.

    • +4

      Note that VZV reactivation is a well-established phenomenon both with infections and with other vaccines (i.e. this adverse event is not COVID-19-specific)

      Unless they just had a covid vaccine (which is pretty uncommon for a 40 year old these days) it's likely another infection or vaccine.

      In other words, why do you bring up the vaccine and not that covid itself might have caused it?

    • +19

      Damn all the people who got shingles before 2019 must've time traveled to 2024, got a covid vaccine and travelled back in time!

      • +2

        Unlikely.

        • +1

          Username checks out.

          The problem with the build-up of flux energy was solved by the flux capacitor,
          allowing time travel to the future, as well as the past.

      • -6

        Yes, because there wasn't other vaccinations around before then, how narrow minded are you?
        You might want to actually read the article before writing something so stupid.

        • -1

          Hey I'm just following the trend. According to Gnostikos, covid vaccine is the reason why op has shingles, no other is suggested as the reason. Perhaps you may want to respond and inform Gnostikos of that as well?

          How blind must you be to not see that? You might want to actually read before writing something so silly. It's probably the covid vaccine impacting your ability to see and sense of humour.

    • +2

      Covid attacks your immune system. It’s more likely you would get shingles after numerous bouts of Covid than the vaccine.

    • +1

      Here we go. It's mid-2024, 95% of Australian adults had 2 doses, if there were genuine side effects we would know.

      • -4

        People who don’t understand statistics, if nothing else.

    • -4

      great post Gnostikos, unfortunately mostly 'heads in sand', NPCs at OZbargain

    • +7

      I also know a guy who got the shingles in 2012 because of the Covid vaccine.

      • +1

        You can always catch the Pre-2020 "side-effects" because "side-effects" were not invented after 2020.

        If someone did not take the EMERGENCY-AUTHORIZATION untested jab,
        and got a side-effect, you have ruled out the jab as a possible cause.

        If someone did take the EMERGENCY-AUTHORIZATION untested jab,
        which has the exact listed 'side-effect' in the paper insert that comes in the packaging,…then all discussions need to rule in, the possibility of the jab as a cause.

        • -2

          Absolutely! I caught a cold several months after the untested jab. Coincidence? I think not.

          • @pulpfiction:

            I caught a cold several months after …

            if the cold is a listed 'side-effect' (as shingles is) in the paper insert that comes in the packaging of the vial,
            then you have to rule in, the possibility of the jab as a cause.

            Possibilities and probabilities are 2 different things, because a probability of >0 is a possibility,
            (eg. impossible and improbable have different meanings).

    • Herein our data suggest mRNA COVID-19 vaccination is not associated with increased rates of VZV reactivation.

      Source

  • -1

    Every time I see a new specialist on some other matter they want to know my medical history, they don't have a clue outside their own little area of specialty.

    At least they know how to spell.

  • Did you have chickenpox as a child?

    (I didn't)

    • Yes

    • I never did. Now I know if I get it as an adult that Shingles is very likely.

      • +1

        If you never had chickenpox you won't get shingles.

        But chickenpox is very bad as an adult so get the chickenpox vaccine asap.

        • -1

          If you never had chickenpox you won't get shingles.

          No you can get shingles from somebody else that has shingles.

        • But chickenpox is very bad as an adult

          I heard that if you get mumps as a child,
          then you don't get chickenpox or something like that.

          • +1

            @whyisave: Well I did have the mumps.. so maybe I'm all clear?

            • +1

              @elgrande: No mumps is caused by a different virus, unrelated to chickenpox.

          • +1

            @whyisave: I had both, and recovering from shingles now

    • +4

      Have you had the chickenpox vaccine? Might be worthwhile if not, chickenpox is brutal as an adult. I think most kids get vaccinated for chickenpox these days so depends on your age.

      • Thanks, I'll look into it.

  • +1

    I had mine 3 years ago at 33, yes very painful. Took 1 week off work

  • +10

    See a doctor immediately if you get a rash on your face. Shingles near the eyes can ruin your sight.

    • +7

      those generations of kids that went through natural chickenpox infection

      and survived.
      Lets ignore the possible increased deaths due to chickenpox prior to vaccination and just mark it up to survival of the fittest.
      https://www.scientificdiscovery.dev/p/13-the-success-of-chic…

      and there's studies showed increases in shingles prior to vaccination, eg random google scholar example
      https://www.tandfonline.com/doi/full/10.4161/hv.34426

      • -4

        and survived.

        Both chickenpox & measles were always considered "generally mild diseases"* in the pre-mass immunization era for kids in the first world.

        After introduction of mass immunization campaigns, the generally mild diseases were suddenly transformed into potentially deadly illnesses that must be eradicated. As usual, there is no consideration if the "safe & effective" vaccines are actually causing more harm than good…..because the populations belief in vaccines must be maintained at all costs.

        *the Siedler & Dettmann study mentions this in relation to chickenpox.

        • +9

          Both chickenpox & measles were always considered "generally mild diseases"* in the pre-mass immunization era for kids in the first world.

          https://www.who.int/europe/news/item/28-05-2024-joint-press-…

          German Measles.

          In pregnant women the virus infects the placenta and the developing fetus. Infection by rubella virus is characterized by a transient rash. Joint pain and arthritis rarely occur in children, but may affect up to 70% of adults. Rubella virus can be found in nose and throat secretions and urine from 1 week before to 2 weeks after rash onset, although infants with congenital rubella may excrete the virus for a year or more in pharyngeal secretions and urine.

          Congenital rubella syndrome is caused by infection in early pregnancy; from just before conception and during the first 8-10 weeks of gestation rubella infection may result in multiple fetal defects in up to 90% of cases, affecting many organs and often results in miscarriage or stillbirth. Infants with congenital rubella syndrome that survive may face serous developmental disabilities.

          Don't know if you have kids. If you do I pity them.

    • +5

      My suggestion is people stop looking at your junk links and actually go to reputable sites. I know you find people doing proper research is offensive. YouTube videos are not scientific research. These diseases ravaged native populations who hadn’t encountered them before. That drum of yours is really not well built.

    • +1

      Actually getting chickenpox would create stronger immunity than being given the chicken pox vaccine. But then you are actually getting chickenpox.

      Do you think this is a better outcome than preventing most children from getting chicken pox in the first place?

      You are just spreading pointless fear with no logic. You haven't worked out on your own that the benefits outweigh the harms and instead assume that nobody knows about them? There is a coverup? What you are spreading isn't false, it's just irrelevant.

      This is your argument applied to driving:

      Did you know that driving your car has a risk of a fatal crash! I will not consider any alternative and if those alternatives are safe, I will ignore how dangerous riding a bicycle on the road is, all I will do is keep spreading fear about car crashes. Large corporations make money selling cars. We aren't being told the full story about car crashes. Scary right?!

      • -1

        Do you think this is a better outcome than preventing most children from getting chicken pox in the first place?
        You are just spreading pointless fear with no logic. You haven't worked out on your own that the benefits outweigh the harms and instead assume that nobody knows about them?

        In SBOB's post above, they linked to this substack: https://www.scientificdiscovery.dev/p/13-the-success-of-chic…

        In that article, they make the claim: "They are highly effective. With two doses, they reduce the chances that a child would get chickenpox by 95%, or severe disease by 99%, over the next 10 years." With a link to this study as reference: https://www.sciencedirect.com/science/article/abs/pii/S14733…

        In that study, what most pro-vaccine advocates skip over, or at least do not consider fully, is the rate of serious adverse events (SAE's). In this study, which keen observers might note, was funded by GlaxoSmithKline (& 2 of the authors of the study, including the lead author were GSK employees), the SAEs were reported at a rate of about 15% in each of the three groups studied. About 700 out of about 5800 infants. All groups got a vaccine, one got the MMR, one got the MMRV & another got the MMR+V.

        Out of interest, I was able to dig up the research article in its entirety. I had a look at what they wrote about the SAE's, & as I expected it was nothing but lip service. They stated "None of the serious adverse events reported in phase b were considered vaccine-related by the investigator, and none were fatal." This is a standard response, ie. we decide if the reactions were caused by the vaccine. The only table in the article related to SAE's was table 3. It was labelled an "overview". Eight rows only, a mix of rashes, nervous system disorders, febrile convulsions, bacterial infections & the like.

        Based on the pathetic nature of the SAE reporting in that trial, it is my view, they probably hid harms.

          1. What are the adverse effects of chickenpox infection and at what rate do they occur?

          2. Why must I accept that the independent investigator is inept just because you say so?

    • +2

      2 years ago, my wife was sent to the eye and ear hospital in Melbourne by our GP, she was diagnosed with shingles at 41 while pregnant with our 3rd kid. The nurse took one look at her and and asked "Pfizer?", we thought it was just to ask which vaccine my wife took for the hospitals records. When we confirmed she had taken the Pfizer vaccine, the nurse responded "Yep, we're seeing a lot of these".

      We asked the doctor later and he confirmed, they were seeing a higher than usual number of cases of Pfizer patients in their 30's and 40's developing shingles.

      This came from the hospital, we'd never heard that there was any correlation to shingles or anything else prior to my wife getting sick and are generally pro vaccination, but had we known there was the risk and that we were trying for another kid, we would have asked for an alternative vaccine.

      • +5

        Most people had Pfizer. It's like saying

        "Water? When we confirmed she had drunk water before, the nurse responded "Yep, we're seeing a lot of these".
        We asked the doctor later and he confirmed, they were seeing a higher than usual number of cases of patients who'd drunk water before in their 30's and 40's developing shingles.

        Good try.

        • +1

          Well put.

        • -1

          Most people had Pfizer. It's like saying

          It's illuminating that people consider this a serious analogy to having medicine injected.

          In other words, common sense should dictate it's nothing like what AEKaBeer describes.

        • -1

          "Water? When we confirmed she had drunk water before, the nurse responded "Yep, we're seeing a lot of these".

          Was this nurse in Australia or overseas?

          Australian Drinking Water: Cancer-causing Chemicals Found In Australia's Drinking Water
          https://www.9news.com.au/national/toxic-water-australia-pfos…

          If someone did not take the EMERGENCY-AUTHORIZATION untested jab,
          and got a side-effect, you have ruled out this untested jab as a possible cause.

          If someone did take the EMERGENCY-AUTHORIZATION untested jab,
          which has the exact listed 'side-effect' in the paper insert that comes in the packaging,…then all discussions need to rule in, the possibility of this untested jab as a cause.

          Possibilities and Probabillties have 2 different meanings.

      • -1

        Why would the Pfizer vaccine have a higher rate of shingles than any other vaccine? Your story does not check out my friend, the Pfizer vaccine is not unique and vaccines triggering latent shingles is not unique to COVID vaccines.

        The only reason the characters in your story think an alternative vaccine would have a different outcome is because this story is written by someone who doesn't understand vaccines.

        • -1

          Doesn't need to check out, it's what happened, and is what the nurse and the doctor said.

          We both had our jabs and we encouraged older family members to have it despite their reservations. This was just our experience, if you don't believe it, that's up to you.

  • What's shingles?

    • +3

      A reactivation of the chickenpox virus in the body, causing a painful rash.

  • +2

    Sorry for your discomfort.
    Danes translation for shingles is hell's fire for good reason.

    I have family with it and his pain was unbearable. He would badly accidentally burn himself on the stove and not notice it as the shingles pain was all his focus.
    He found the drug Lyrica helped him- and over years it did get better.

    • I'm on Amitriptyline atm but if I don't get any relief by next week, the doc said he is going to change me over to Lyrica.

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