Shingles as cause of PN

[Cosmiccrone]

Hi Folks,

I don't even know where to start but here's my story. In May of 2008, I had shooting pains down my leg. Despite going to my doctor and a chiropractor, none of us could figure how what was happening. The pain was waking me up at night and didn't respond to OTC pain meds. When it did respond to Tylenol 3, I knew something serious was going on and planned to go back in to see my doctor.

Shortly thereafter, I was taking a shower and realized that, not only did I have incredible pain in my leg, I was experiencing numbness and itching in the pudendal area. The itching I had noticed but thought it was a yeast infection. I went to my doctor that day and she immediately did an examination of that area. She said that there was a large rash running through my pudendal area on the left side of my body. She diagnosed it as shingles (varicella or herpes zoster) and prescribed the anti-viral medication although both of us were sure that it was beyond the window of opportunity in which it is effective.

In the next day or two, I completely lost the sensation of the need to urinate so had to put myself on a schedule. I took a few days off here and there but was taking pain medication and, frankly, although sitting was a problem, I adapted my environment to make it easier and work kept my mind off the pain, except at the points when the meds were wearing off and it was too early to take more. Looking back, I should have taken 2-4 weeks off work immediately.

I was reassured by the thought that the pain would be gone in 4-6 weeks or, at least it is for most people. However, a percentage of people with shingles get post-herpetic neuralgia (PHN). Because the affected area for me is in the pudendal area, the result for me is PN.

I have tried a wide range of treatments including acupuncture, physiotherapy, specialized pelvic floor therapy, yoga, oxycontin, tylenol and lydocaine infusions. The treatment that works best for me is lyrica but the side effects create some issues for me at work (clarity of thought is important in the workplace). So, I'm at the lowest dosage I can possibly get away with. However, I still get break-through pain and discomfort. I will be seeing my doctor again soon and will be asking her to increase the lyrica slightly to see if that works.

The numbness is still with me, on my left side, as well. The sensation of needing to urinate returned about 3 months after the diagnosis however, this has had a devastating effect on my sexuality. I also have constant sciatica-like pain.

My way of coping with all of this is to get over the idea that it's ever going to get better. It's clear now that it won't. In order to stay sane, I have to adapt to the situation and live as normally as possible. It makes me sad and mad but I just can't dwell on it anymore. My family and my work colleagues are supportive, for the most part although I often don't feel understood.

I'm writing because I suspect I'm not the only one who has PN as a result of shingles - in looking through some medical research papers, I know I'm not. However, I know it gets overlooked as a factor.

[pmurali1]

I also have burning pain near my ischial tuberosity for the past 5 years. I had chicken pox and after couple of months, I started to have this burning symptoms. Surprisingly this question was asked a physiotherapist whether I had an viral infection. I tried three pudendal blocks but no luck with any of it. I am seeing Dr Antolok in couple of weeks and should mention about my chicken pox relation with PN.

[Cosmiccrone]

Hi and thanks for the reply. I'm curious about the chicken pox since shingles is something that a person can only get if they have previously had chicken pox - it's the same virus. I had chicken pox when I was 5 years old and the shingles hit a month after my 50th birthday. Age 50 is when the risk of having shingles increases significantly.

In terms of your appointment, I don't know the doctor to whom you refer but I think it's worth mentioning anything that may be related. For me, knowing this means that when I am sitting or exercising, I can let go of the fear that I am aggravating the condition. At one point, I was up to 90 minutes of cardio per day with no increase in pain and, without knowing that the condition is chronic but not likely to get worse, I can make different decisions that I would if I thought I was constantly re-injuring myself. Obviously, I want to be comfortable but, if I'm going to be sore no matter what I do, activity is okay.

I hope it all goes well for you.