Please help me - doctor is dismissive

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My nightmare started at the beginning of February this year and continues as I type this. I will try to give you a brief but thorough description of my (possible) shingles experience, but since I didn’t realize at the time the massive ordeal this would be, I didn’t pay attention to some things that probably would have been helpful:

First weekend in February: starts out fine except I notice a few bumps around one of my eyes. They remind me of pimples/acne but they are on my actual eyelid and the area around my eye. Couple of days later, these areas look a little better, but new ones are popping up. Again, only around the eye.

Second weekend in February: Pattern continues. One or two will show up, start to heal and a new one or two will take its place. Never in the same exact spot but consistently around the eye area and nowhere else on my face. This time, I get one or two near my left eye. Finally decide I will make an appointment with my doctor office hoping she can give me something to help these bumps.

2/11/19: First doctor appointment: I don’t see my regular provider and I am diagnosed with a contact dermatitis of some sort and given a prescription for Triamcinolone and I am told to not wear any makeup around my eyes as that was probably the culprit and would irritate it. At this point I will admit I did not follow the doctor’s orders. I continued to wear some makeup, but I needed to work and needed to cover up these bumps all over my face! Plus, I knew I had not used anything new that would have irritated my skin and prior to this I NEVER had any ongoing issues with pimples/acne/rashes etc. I used the cream all week long and it was no better. The same pattern continued. By Friday I decided to follow the doctor’s advice. I was home from work with my sick daughter so I decided not to wear any makeup all day and for the rest of the weekend to see if this helped at all. During this entire time I had been feeling a little stressed at work, but this weekend was the worst of all. Long story short, my daughter was very sick and by Sunday my pimples/bumps were now a full blown rash all around my right eye.

2/18/19: Second doctor visit. This time I see my regular provider. Doctor looks at my face and says I have Shingles. She hesitates briefly only because she said Shingles never crosses the midline and because I had bumps around both eyes she wasn’t sure. She said the right eye with the definitive rash made her believe it was Shingles so she prescribed Valtrex 3times a day and prednisone 50 mg for 5 days. Literally within hours of taking the first anti-viral my face looks 100 times better and the places around my eye are drying up fast. I continue to take my meds and I work all week but try to not overdo it and definitely not stress. I only have a few places on my face that attempt to pop up during this week. I would see something in the morning but it would be gone by midday.

Sunday, 2/24/19: I wake up this morning and the right side of my face burns near my eye. When I look in the mirror I can see four or five places starting to pop up. This the last day that I will take my anti-virals but I finished my prednisone already. I had to leave to go out of town for a contract job with the state so I am freaking out about my face but unable to do anything about it. I guarantee stressing about it didn’t help and by the evening I have a cluster of spots near my right eye and some now on my cheek and traveling down my neck. I apply calamine lotion and buy as many over the counter remedies I can find.

Monday, 11/25/19: I call my dr because I am out of town and explain what is happening. I assume I need more anti-virals or something since the bumps are appearing again. At my left eye I have started to get two bumps to add to the circus of bumps all over the right side of my face now. My dr says the reason I broke out again was because she didn’t taper me off of the prednisone so she prescribes me a 14-day taper regimen. For the two weeks after this I did fairly well, but as my prednisone lowered, I noticed more bumps trying to appear. Today I took the last of my prednisone (1/2 of a 10 mg pill) and I woke up to 3 fresh blisters at my right eye. Of course, I could not go to the doctor first thing this morning either because I happened to be subpoenaed for federal jury duty and you can’t miss that. (I swear, I can’t make this up!) When I was able to leave I called my doctor’s office to see about an appointment. My regular doctor is out of town and the nurse says she will leave a note for the other doctor (the one I saw first that diagnosed me with contact dermatitis). The nurse calls me back later and says the other doctor said I need to make an appointment with Dermatology. The waiting list for Dermatology is approximately 3 months. WHAT DO I DO???

I plan to call my regular doctor back when she returns and demand an appointment. (It will definitely be earlier than dermatology.) Here is where I need your help/advice:

  1. Is this Shingles or possibly something else? I definitely feel the burning/tingling at eruption sites but is it unusual they would keep popping up like this or the fact that they have been around both eyes? I think the fact that the anti-virals worked so quickly seems to solidify it being Shingles but I just don’t know. If it isn’t Shingles, what could it be? I haven’t had a lot of pain which is a good thing.
  2. What caused this? I am pretty healthy, so I don’t think I have a weakened immune system. I am only 44 years old. Did stress trigger it? I went to the dentist the week before this all started – is that related to the trigger?
  3. Did the Prednisone just suppress my rash and it still needs to come out? Do I need more anti-virals?
  4. How long will this last? I am starting my sixth week, and I am still having eruptions. Has that ever happened to anyone else?
  5. When I finally see my doctor again, what do I need to say/demand they do for me? Since I don’t have definitive answers I’m googling everything and now I have somewhat convinced myself I have an even bigger issue than Shingles and this outbreak is just a result of the larger problem. I’m fully aware that doing this only adds to my stress which triggers shingles…see my problem?? LOL.

Any and all advice would be greatly appreciated. I just want to cry over all of this.

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16 Replies

  • Posted

    My first question is do you have incredible pain? If you have a rash, but not searing pain, it's unlikely it's shingles. One can have shingles without a rash, but I don't know if I've heard of shingles without pain. In fact that pain is usually the defining symptom. As far as shingles not crossing the mid-line, it's not common, but I've heard of people who have been diagnosed with shingles and do get a rash over the mid-line. The pain can definitely go to areas way behind the initial area.

    Generally the anti-virals are only effective in the first 48-72 hours after the initial symptoms. But I had severe pain for several hours (maybe about 5-6), then very few symptoms for the next 10 days. I then had a couple of tiny bumps, but no pain. The real pain showed up a few days after that. So from the first pain to the full-blown fever, pain, shingles was almost two weeks. I never figured out IF I had gotten shingles, at which point it could have helped.

    Dermatology would be better at this. Normally I would say go with the shingles diagnosis. But shingles,as I said includes incredible pain and often a feeling of overall illness. Such as nausea, fatigue, aches, fever, headaches and just feeling sick. If you had none of this, it would really point to something else. Rashes can be very difficult to pinpoint. If you and your doctor feel this IS shingles, you should get to an ophthalmologist ASAP, as shingles in the eye can be extremely serious. Sometimes people don't mention all their symptoms, so I'm only mentioning this if you've had severe pain, but didn't mention it. (Which would seem unlikely. I had a forceps delivery without an adequate nerve block, I'd say the shingles was as bad or worse).

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    • Posted

      Thank you for your reply. I have not had any major pain, which I understand is somewhat odd. The places do burn and hurt when you touch them. No nerve pain, but I have also read that some people do not have nerve pain. I am more tired than usual. I am so confused and just want answers. If it is shingles, then let's treat it...if not, then I want my doctor to help me figure out what it is.

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  • Posted

    I'd just go to an urgent care place if I were you. Not sure about the medicines except I know the anti-viral is good. You definitely need your eyes checked to make sure it isn't in your cornea.

    I got shingles LAST Feb. and I am still suffering from it (muscle damage to my right eye which makes the eye stick to the right so I cannot see well or focus well) and numbness in my eye, forehead and scalp. At the time, I was so sick I was bedridden and the pain, OMG, the pain was horrendous. This lasted for months and it was a slow recovery which took months as well.

    The severity of shingles does seem to vary depending upon the person. You can be any age and get it. Yes, I have heard it CAN cross the midline, too. WHile my rash was on one side only, both eyes and head were totally swollen on both sides and my poor body was just so sick. Work was impossible because getting out of bed was close to impossible. Staying out of bed for more than 10 minutes was impossible.

    Lysine and Vit. C are two of the best things you can take if it is shingles. I heard that lysine kills the virus. I didn't know this before. Rest as much as possible and eat fruits and vegetables and protein.

    Best wishes and keep us in the loop.

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    • Posted

      Yogi, I have to respectfully disagree with the suggestion to go to urgent care. Whatever this is, it has been happening for several weeks. Urgent care doctors do not have the expertise to deal with an issue if this is shingles affecting the eye area. That needs a specialist, and even then not all eye doctors will know how to treat and monitor the problem. Urgent care is useful for a quick diagnosis and treatment. Hopefully the correct one. Sorry if I sound a bit cynical, that happens when you've worked in health care for over 30 years.

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    • Posted

      Thank you for replying. I have started taking Lysine and Vitamin C. I also read something about Olive Leaf extract. I need to count my lucky stars that so far I have not had this horrendous nerve pain people describe. I am trying to rest the best I can, but if I miss work, it will only stress me out more because I will get so far behind. Ugh, it's like this vicious cycle I cannot escape!

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  • Posted

    I recommended Urgent Care because it seemed like she was getting the runaround from her own doctors and needed answers "now." I had a good experience with Urgent Care with my shingles and they checked my cornea right there, too, with a follow up with the eye specialist the following week just because.

    Totally fine with anyone who disagrees with me. I am trying to be helpful and have only my own experience to tell.

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    • Posted

      yogi i totally agree with you. i went to doctor who prescribed me anti-viral medication which I took but because the blisters got so bad and went up over my eye with excess redness and swelling and cellulitis I went to out of hours Doctor Who told me to go to hospital where I was admitted and put on a drip of anti-viral medication every four hours and antibiotics to combat secondary infection of skin was in there for three days and i had a follow up appointment after being discharged to a eye consultant too! im now suffering again on face and its severe this time. im on tablets and have to see doctor end of week to see how im getting on although its yellow and oozing and my face is swollen and across under my eye i have cellulitis again! im praying the rash stays away from my eye this time around as i got the tablets quickly this time!

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  • Posted

    I would go ahead and set up the appt with Dermatology. then I would call each day to see if they have had any cancellations for the day. Most likely they will and will get you in. I agree with BABS if it is shingles and around your eye you will definitely want to see an ophthalmologist. Also like she said there is typically pain as well with shingles. Would you be able to take a picture? Also have you had chicken pox before?(I'm sure you probably have)Another thought on what it could be, red bumpy areas could be eczema(would tend to itch) Best of Luck!

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    • Posted

      Thanks! I Have called to get an appointment with Dermatology in case it isn't Shingles. I can't live like this. I am calling my ophthalmologist today as well. My doctor said it was not eczema based on the appearance.

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  • Posted

    Brandi,

    Make an appointment with an ophthalmologist STAT as it is around your eyes.

    Herpes Zoster -shingles certainly can manifest with severe pain, but doesn't always.

    As the rash responded to the antivirals immediately does make it sound like Shingles. Zoster can cross the midline. When you wean off Prednisone, you will often see a flare of shingles, or other diseases.

    If you call an ophthalmologist and state you may have shingles in or near your eye, you will be seen immediately! The speciality is excellent regarding seeing patients with eye problems. It could possibly be a fungal infection, as Prednisone will suppress it, then the infection will worsen when you are off the Prednisone. As it is near your eyes, ask to see an ophthalmologist, as they see rashes around your eyes.

    The burning and tingling sounds more like Shingles, but obviously I have not examined you or seen you over the course of the six weeks.

    I am a Nurse Practitioner in the States and have had Shingles in my ear and eyes.

    Please let me know how you make out.

    Best Regards,

    Merry Juliana

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    • Posted

      Thank you for your reply. I am calling an ophthalmologist today. I am now completely of the Prednisone and woke up to a few new places this morning. They aren't as bad or as many as the first time I went off the Prednisone, but they are definitely there and my skin feels like a sunburn where they are (If that makes sense). I will see if I can attach a picture that I took of the places that popped up after I came off Prednisone the first time around. My actual eyes appear okay, but I have noticed an increase in eye matter when I wake up in the morning. (Normally I don't have that.)

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  • Posted

    i feel your pain!!! it does sound to me that it is shingles, the blisters can keep coming up after ones have popped and crusted over all yellow in colour! until the virus is under control with medication it can continue to travel along nerve endings and spread. i am not a doctor but i have experience with suffering reocurring shingles on my face since the age of 18! i an currently on my 15th outbreak of this awful painful infection which is a severe one as i have cellulitis under my eye from the swelling. the blisters are massive this time around! my advice to you would be to go to your nearest hospital to be seen. i ended up in hospital before as the blisters went on my eye and i was on a drip of acyclovir every four hours it gets straight into your system quicker because the tablets didnt work for me that time around! i can tell you that......

    1. you feel tired and a strange tingling sensation of area of where the infection is gonna appear.
    2. these red dots like raised pimples then itch and blister
    3. there is itching and burning pain
    4. these then form a cluster and pop and ooze yellow fluid which then crust over still causing itching and pain
    5. once these have formed hard crust you are no longer contageous.
    6. scabs will appear and drop off over a length of time. do not touch them or pick them or you will get scarring!

    i have had them 15times and because of this i have facial numbness as they attack nerve endings!

    please go to hospital especially if they are on your eye as shingles can cause blindness if gets into your eye!! i am not trying to scare you by saying this i am trying to help you as i too am a sufferer and ended up in hospital because of my eye.

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    • Posted

      Thank you so much for your reply. Oh my goodness, I am so sorry you have been through this so many times! Yes, that is exactly what has happened when mine form. I don't suffer from this nerve pain that people speak of, but I do have the tingling/burning sensation. When I wake up in the morning I know without looking if I have new places because my skin will burn. I am calling the ophthalmologist TODAY. I will keep you posted.

      Just to clarify...so you do have times when the places you have will heal and then new ones will form within a couple of days? Most people describe a rash and cluster of blisters all at once but that has not been my experience. I will get a few at a time - a few will pop up and heal, but new ones will start during the healing process of the other ones. I counted the days today...41 days I have been dealing with this. That's 41 days since the first few blisters showed up and not once during this time has my face been 100% clear.

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    • Posted

      dear brandi so sorry for what you are going through. yes you will have times when blisters are healing and crusting over and at the same time those are healing new ones will appear. your body will feel tired and drained with this virus even after your sores have healed and could last for weeks and weeks.

      are you taking any antiviral medication?

      do you have a week immune system?

      if so then it will take time to rid yourself of the virus. because the medication wont cure it but will help ease the rash and stop it spreading but it relys on your immune system to combat the virus. i pray you feel better soon i know what you are going through as my face is swollen up and has fluid in from taking the tablets and the infection is nasty i see new doctor on friday to see what she says.

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    • Posted

      When I suffered the first bout in February I was given a 7 day rx for Valtrex. I have not taken any other anti-virals. I try to rest as much as possible but I am still working because if I miss work I will stress out even more because I will get behind. Ughhhhhh, it's a vicious cycle I cannot escape. The good news is I will see my eye doctor later today.

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