I still have swelling and redness after having the shingles.

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It has been 3 months since I had the first outbreak of shingles around my eye, forehead and in my head. I am still dealing with the pain that I have now learned is PHN. I also still have swelling and redness on the left side of my face. I'm wondering if this is normal after an outbreak of shingles.

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    That does seem like a long time but I also had the redness for quite some time - probably 6 to 8 weeks.  Your situation is serious given it was near the eye.  I assume you are getting good care.  It is "random" how long the pain lasts.  For many a number of months, some longer and then for a few quite long.   The odds are in your favour that it will be shorter than longer so that is what your mind should focus on.  I am sure you are already finding coping strategies to minimize the pain.   I do have a lot of empathy for you given the area you need to deal with.  Knowing you are not alone and others out there understand the impact on your life helps a little.  But at the end of the day it is our personal strength that gets us through.  I do have to admit it is far from easy.   My only other advice is try everything you can to reduce the pain - it is trial and error and make sure you have good understanding medical care.   jim
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  • Posted

    Nancy, Sorry to hear what you are going through. I got shingles in my right eye in October of 2013. I was given a round of acyclovir and told it would go away in 3 weeks. 4 weeks later I had a horrible headache and my whole right side of face swelled, was in pain, and nerves kept pulling in my face. Btw I am a 43 year old female. I went back to the doctor and they put me on 600 mg of gabapentin 3x a day and that made it feel better for about two months then the pain started up again the doctors could not figure out why I was still in pain and said I had a rare headache disease. While being in continous daily pain in June of 2014 my disc ruptured and my entire back felt as if it was on fire. After seeing several doctors in August of 2014 I was told the shingles never left my body and the virus transcended from my eye to neck to spine which is still currently causing so much pain till today. My best advice to you is to take another round of acyclovir, definetly get on gabapentin and go on a healthy diet no sugar because if you don't nip it in the bud, it can destroy your nerves throught the entire body. Good luck. 
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    • Posted

      Daune, I'm sorry that you've had a such horrible experince with this. Thanks for posting.. I had gone back to the doctor the day before you posted your response. It never occurred to me that it could've still been in my system. I am back on another round of the achclovir.I haven't been able to come off of the gabapentin yet. Thanks again for your post, it really helps to know that others understand what I;m going through. 
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  • Posted

    Nancy:   just looking at your post again.  All of us on this site certainly have an understanding of what you are going through.  Given the location it is very serious and the pain can be even more difficult to control given breezes, even hair slightly touching the area.  Feel free to ask any questions or just to say hey this is how it is and this is how i am trying to cope - if that helps you.  I know we are strangers out here but not being alone with this horrible condition is important.  No one understands the pain and adjustments you have to make in you life to deal with it unless they actually have experienced it.  again take care and i hope given it has been 3 months that it will dissipate for you over the next 3.   jim
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    • Posted

      Jim, thanks for your response. I appreciate the support and knowing that I'm not alone. I went back to the doctor and apparently the shingles either came back or did not fully clear up. So I'm back on the antiviral medicine. It has been a long road dealing with this illness. I've read that the longer the virus is in your nerves that it increases the chances of having permanent nerve damage. I hope that i am not at risk of this happening with having it for so long. 
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    • Posted

      There is truth to what you say.  I dont know what level your pain is at.  I do know for me the pain was fairly consistent in terms of the range, duration and frequency over a long period.   I am more the outlier in terms of length of time - so you hopefully will be shorter.  From what I have read the pain doesn't get worse it gets better or stays the same.  Hopefully for you it will get better and i hope that your pain doesn't get to the 8 or 9 out of 10 or if it it is for a very short duration and not that frequent .  At this stage you still have lots to be hopeful for.  Not easy I know and the time periods can be long re: seeing an improvement.  jim  PS pain from PHN is complex and needs to be clearly communicated.  So you do need to talk about intensity, duration and frequency particularly if you need to be approved for insurance purposes.  I also had both a deep stabbing pain and a burning surface pain. The heavy narcotics dealt mainly with the deep pain as did the neurostimulator implant.  Reason I am telling you this is that the medical community and the insurers expect you to clear about the pain description.  Otherwise they can be even more difficult with their approvals.  At first I simplified my messages about my pain to others because i didn't want to go on and on about it.   However you need to.  One tends to casually downplay or dismiss it just to protect others from feeling bad for you.   Again don't, tell the truth as it is.  one doctor told me certainly to insurance companies one has to say "God willing I hope one day that the pain will be sufficiently controlled that i can work again like i did before".  and Nancy that is the truth for how i feel and what i want.  take care sorry to ramble   jim
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