Shingles Support Group

Herpes zoster, colloquially known as shingles, is the reactivation of varicella zoster virus, leading to a crop of painful blisters over the area of a dermatome. It occurs very rarely in children and adults, but its incidence is high in the elderly (over 60), as well as in any age group of immunocompromised patients.

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aprilb42 09/12/2009

I had shingles April of 2008 in my right eyebrow and the right side of my scalp & head. I have had PHN ever since. I was on Gabapentin, which did nothing for the pain and I had terrible withdrawal effects coming off and still have some residual withdrawal symptoms 4 months later. My pain was getting better since about June, to the point I have been taking nothing for pain at all. I still had some soreness on the right side of my head, but it was alot better. Now, all of the sudden this past week the unbearable pain is back. I thought the shingles might be coming back, but I have no rash. I am under some stress right now with work, but I am not sure that this could trigger this pain. I am at the point now that I am considering another medication, which after my experience with Gabapentin I am very leary of medication. I do have a script filled for Savella which is a new medicine for Fibromyalgia Nerve pain. I never started it because my pain was getting better. Does anyone know why shingles pain would be getting better and then all of the sudden get really bad again. I am so depressed right now and feell like if this continues I will have to take another leave from my Job. I really can't stand living this way, as I have no quality of life right now.

April

deleted_user 09/13/2009

I am so sorry you are going through this. After living with it myself, I sure don't wish it on anyone. I never heard of Savella- I looked it up and yes it is very new. Just approved in January. I am on Lyrica along with Gabapentin and Oxycodone. That combination has really helped me. The pain never is gone- but it is manageable for at least most of the day now. I would talk to your doctor about your bad experience with Gabapentin and see what he recommends. Good luck to you! I found you find some relief from this terrible illness.

aprilb42 09/13/2009

Thank you Patty for your reply. I feel like I am living in a nightmare sometimes and really want my life back. I am supposed to start a new job and I am in so much pain again I may have to take a medical leave again if it doesn't let up. I was doing better for 3 months and thought that the pain was finally subsiding a bit and now I feel like I have the shingles all over again. I do not have a rash, but have the horrid pain. They say that you can have shingles without having the rash, so maybe this is what I have. I just don't understand. I have dries all weekend because of the stinging burning pain. I guess I will have to go back to the doctor again. I do have pamelor and Savella on hand, so maybe I will start one of these and make a doctors appointment. I wish that I could get something to take just when the pain is really bad like a type of opiate, but the doctors don't seem to want to prescribe these.

April

deleted_user 09/14/2009

April, I hope you find a doctor that will give you the meds you need to treat your pain. I had the nerve pain for almost 3 months in one side before breaking out in the rash on the other side. Now I have the pain on that side and its been a little over a month. It is hard to get a dianosis without the rash, but if you've had the rash then you know what it is from. I hope your doctor will give you something stronger for the pain. It makes all the difference in the world. I was off work all summer since I work for a school. School started up a few weeks ago and I took a medical leave. I am finally to the point where I think I can manage going to work for just part of the day. Today is my first day going back- but only half days for now until the pain is better.

aprilb42 09/27/2009

I am happy to report that my pain is subsiding again. I have no idea what triggered the horrid reoccurance several weeks ago. It probably was stress, as I never got the rash back (thank god). I can't believe what stress can do to a person. I have to be careful of my stress level I guess, but it is hard now because there is alot of stress right now at my job.

April

deleted_user 09/27/2009

That is good news! You are so right, stress does make it much worse. I am having a lot of stress over my job now and this weekend
has been very painful. Not much I can do about it. I think they plan
on firing me (after 13 years there) and no matter what their excuses are- I know its because I can only work half days now with this illness and they need more help. I try not to worry, but its hard.
I hope you stay pain free now for a long time!! Good luck to you!

aprilb42 09/27/2009

I am so sorry that they are treating you like that at your job Patty. Most jobs now treat people like they are expendable and not valued at all. It is such a shame. They are like this were I work now, trying to make me work 2 positons right now. I so wish that I didn't have to work, as it would eliminate so much stress for me. I really do think that the pain and stress are connected.

Take care,
April

deleted_user 09/27/2009

Thanks, April. I am mostly worried about losing my health insurance that we get from my job. At least we do have the option to go on my husband's from his job- but its very expensive with lots of copays and stuff. Well- we will get through it, no matter what. I have to keep remembering this and try not to worry. My pain has been a little better this afternoon! :)

aprilb42 09/27/2009

Hi Patty,

I know what you mean about health insurance, as this is the only reason I am at my job right now. The most important thing is your health and if you can get on your husbands insurance this would be good. The most important thing that shingles has taught me is to listen to my body and myself. If something is so stressful that it is making you sick than it is not worth it. I don't think other people realize how bad PHN is.

Take care,
April

deleted_user 09/27/2009

You are right, April. I know people don't understand how bad this illness is or how the pain takes over everything. I wish people were more aware, it would make life easier for us who suffer from it!
Take Care,
Patty

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