Shingles Support Group

In my case, I didn't know I had shingles...by the time I was diagnosed, I had nerve damage. I may be wrong, but I think the antivirals only work within a certain timeframe from onset of symptoms.I started taking mine about 2 weeks after I had pain...didn't do anything for me. I would talk to your doctor and tell him/her your concerns. It is hard for most doctors to diagnose because there is no rash. I had to see 7 doctors and I had every test done. Best of luck to you.

thankyou for yor reply Cindy. I do have an appointment with my neurologist in a few weeks so I will ask him about the bad pain reoccurance. Since it is in the spot where I have the PHN from shingles last year it is hard to know whether or not it was a reoccurance of the shingles with no rash or just the pain flaring up due to extreme stress. I did have some antivirals on hand so I took a maintenance dose a few weeks ago when the pain got bad. Not sure if it did any good, but I am so afraid of getting shingles again I was hoping that would prevent it. I read your profile and I am curious was the recent bout in the same place as your last bout? I don't think many doctors know much about shingles. They think they do, but I know many people that have had it more than once and in fact I know a few people that have PHN. Everything you read makes it seem like PHN is a rare complication, but I don't believe this is true. I pray for the day that this goes away for all of us. I really wish that I could quit my job, but can't so I will have to deal with the stress.

Take Care,
April

Hi April,

When I had the shingles 3 years ago, it was on the left side of my hip. I remember seeing a blister and I really thought it was a spider bite. The rash/blister looked to be like circular pattern. It was painful and it did leave scars. Well this time, I started getting pain on my right side, in the rib area. It was from one day to the next and I just thought I pulled a muscle or something. The pain never went away. It got worse. The doctors put me on high dose steriods and I really thought I was going to die. It was horrible because at that point we didn't know what was wrong. It took me a long time to get to where I am now and I still have pain 24/7. I couldn't work, I went out on FMLA...well that ended up expiring and I lost my job. I think mine was caused by stress too. I was working so much at work and was under so much stress with a conversion. When I got the shingles 3 years before, it was stress too, I was a brand new mom and was back at work. This PHN has really turned my life upside down, but I have hope that all of this will pass.
Best Wishes,
Cindy

Hi. I just wanted you to know that I am also one of those who was told they had a spider bite in 1996 (was Shingles) and the story continued. I developed recurrent Shingles with PHN. It is a nightmare. I have researched this. I live with this everyday. Like Cindy, it has taken away my career and each day is a challenge. There is a vaccine available for this. Please read the posts. For me, it was too late for the vaccine. Please take care,
Colleen

Hi Colleen,

Thank you for your response. Do you get the shingles rash over and over again, or did you have the rash once and now you have PHN? The shingles vaccine is supposed to help prevent future shingles outbreaks, so it may be something you should ask your doctor about. Also, I have heard that a maintenance dose of valtex can help ward off future outbreaks.

Take care,
April


























April

Hi April. Unfortunately, I got Shingles over and over again. The initial stages of it went diagnosed as a spider bite and then something else. It was not until later it became somewhat noticed. I have been on acyclovir for quite some time. I do not know why the horrible episode in August developed only to say my stress level was really high and I was put on a sulphur drug for a urinary tract infection which just made this disease go rampant. It became so out of control. I have never been in such pain in my life. I was up 24/7 with ice packs on the right side of my head and my buttocks (lower tailbone). I could not really sleep at all. My doctor now tells me next time to go to the hospital. I even lost hair on the right side of my head. I am going to a specialist for that. Ahhhhhh. Well, I am a work in progress (once again). As for the vaccine, well I was told my doctors and my pharmacist that it is too late for that. Perhaps if I had had it years before. But now, the PHN is set in and I hope to keep the Shingles under control by my daily anti-viral drug. I just happen to be one of those individuals who was not a-typical, a wide, open door for this disease, and intially did not get the right treatment or diagnosis. At least now I know. And, it makes me feel so much better when people ask about me because they used to think it was all in my head. PHN is a nightmare. And, I knew it was not in my head. Thanks for your response. Hope all is going well. Colleen

Hi Colleen,

I am so sorry that you are going through this. I have had PHN for a year and 5 months now on the right side of my head and facial area (trigeminal nerve area). On top of this I also get migraines so my head is usually in pain from one thing or the other. Luckily, the pain seems to be diminishing and there are days now where it is hardly noticable, which I am trying to look at as progress and hopefully it will continue to improve. I did have a really bad episode 3 weeks ago and was worried that I had the shingles again, but never got a rash. I was under terrible stress, so maybe this is what made the pain flare up. Today, I am under stress and the pain is worse, so it must be connected. I have read that after having the shingles you should wait at least a year before getting the vaccine. I am not sure but my doctor won't give me the vaccine as she feels that I am not in a high risk group to get the shingles again. I do have valtrex always on hand and take if I start feeling more pain to ward off a possible outbreak. I really hope your pain improves soon. Shingles pain is the worst pain ever and people don't understand until they experience it. Somehow I am managing to work but it is hard and if I didn't have to I wouldn't.

Take care,
April

Chances are you have Post Herpatic Neuralgia and the pain may come and go indefinitiely. It can take weeks, months, years or may be permanent. I hope for your sake it will dissipate and not come back.

A friend of mine has the shingles and the rash was absolutely horrific. She didn't even realise it was the shingles until she went to her doctor. Luckily, the rash cleared up after the correct medication was given.

http://www.shinglesremedy.co.uk/shingles-rash.php