My shingles experience

Dear Jennifer,

I am so sorry you are going through this. Physicians can be abysmally ignorant of the pain, the treatment, and the management of Herpes Zoster Shingles.

The condescension and marginalization of patients by these doctors borders on malpractice, but definitely inhumane treatment of your fellow man.

My first episode of Herpes Zoster Shingles was 21 years ago. I had agonizing excruciating lancinating pain in my right ear where I felt I was giving birth through my ear canal while being tased. It took three and a half weeks, my allergist, who was kind, but clueless, two ENTs who thought I was narcotic seeking, before an otoneurologist could diagnose me after the second visit, but at least he knew something was terribly wrong. Interestingly, I had trained my eight year old son to look in my ear with the otoscope, and he was the individual who found the vesicles-blisters.

So....the answer is, Herpes Zoster Shingles can take up to five days to appear, and another five days for crops or waves of vesicles-blisters to occur, in a classic case. However, the virus does not read the textbook. In reality, as in my case and others, the rash can take weeks to rear its ugly head. It can take a week or two before the rash stops spreading. These are the worst case scenarios. The physicians often don't give the necessary education to help anyone cope with the disease.

Please ask for FAMCICLOVIR (most efficacious) for the antiviral rather than Acyclovir (5x daily least efficacious) and Valcyclovir (3x daily huge tablets)

Do not go back to work! The pain will only get worse. You need to rest and sleep! The more work and activity you do, the worse the pain will be, the more the fatigue and exhaustion will be, which you have anyway, due to SLE. You simply cannot power through this. The virus is attacking ypur body.

Please ask for a stronger Opioid as the pain is going to increase.

Feel free to ask away! I am a Nurse Practitioner in the States and have had Herpes Zoster Shingles in my right ear every three to five weeks for the past twentyone years and twice in my right eye.

Best Wishes

Merry Juliana

I'm sorry you are suffering with this awful illness!  I got shingles 16 months ago in my head, forehead and right eye. It started with excruciating  pain at the back of my head about a week before the rash appeared. One evening my forehead was sore and itchy and a bit pink, it felt a bit like I had rubbed stinging nettles on it!  my eye felt sore too and was a bit inflamed, so I rang the Dr and explained and she just said did I have any eye wash, and to just wash it with that etc, Unbelievable that she didn't even suspect shingles! That evening I was taking off my make up and noticed 2 small red bumps on my forehead, and one on the side of my nose,  and as I had earlier looked online I knew straight away it was shingles, and sure enough the next morning I saw a different dr and he confirmed it! I was put on antivirals straight away and as it was in my eye I had to go to the eye clinic, and I still have to go every few months! Luckily my vision is still ok even though there is a small scar on the cornea but not in my line of vision thankfully. The whole thing was awful, with many trips to A and E when my eye flared up and it was so sore, and blurry at times, I even started to get double vision but luckily that stopped after a while. One day i was in such pain that I ended up crying in the Dr's surgery and just said "help me!!" then he gave me stronger pain killers. I get itching in my eye still every day and slightly on my forehead too, as unfortunately I got PHN, I know there are people worse off though who get shingles a second and third time, so I really feel so sorry for those people as it ruins one's life!! I wish you luck and hope that you recover very quickly, as everyone is different. I am amazed that in this day and age Drs seem to know hardly anything about this awful illness and yet so many people have it!!

Jennifer, I'm sorry to hear you are in so much pain. I got shingles last Labor day and I was one of the unlucky ones that got the nerve damage after it. I am still fighting it. The pain is not near as severe as it was when I got the shingles but it still is bad especially when I wake up in the morning. I am taking Gabapentin and it seems like it helps sometimes and like you I had to go to the hosipital but I was diagnose correctly from the beginning. Watch out for the depression. A lot of people have to take something for that. It made me feel worse so I stopped taking the medicine for it. Please don't try to power through this, because it won't work. Hopefully you have the support but regardless it will get better and hopefully you don't have nerve damage. If anything this site will help just knowing there are a lot of people with the same problem. Rest is one of the main ingredients to getting better. Good luck.

By the way I got it on my left forehead and scalp. I thought I was having a stroke. I. Scared my wife so much that she called 911 and they took me to the hospital. I ride a motorcycle so l have had many experiences with pain but this was like nothing I ever experienced before. I searched everywhere for help even look for studies. Nothing I could find and with all the people that experienced shingles you would think they would. I guess it's one of those illnesses that will die off with the chicken pox.

Hello Jennifer, I feel so angry on your behalf about the way you've been treated by 'so called' health experts. They have no right to treat you like a criminal! You needed help & all they did was assume you were looking for pain relief for the wrong reasons. It's time these people are told how badly they fail because of their own fears about prescribing pain relief. You have the right to quality health care & you needed them to do their job and not judge you. No doubt your Doctor was paid for doing you a terrible dis-service. If you need someone to advocate for you to let this Doctor know how badly he failed you, all you need to do is provide me with the information and I will gladly advise him/her of their failure to provide you with the appropriate treatment. It really upsets me, after going through a terrible experience myself, that these people are highly paid when they do not deserve to be rewarded at all. I hope you're feeling a bit better. I am not normally an angry person & I hope I haven't upset you further with my rant.

Best wishes for a speedy recovery