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My first shingles outbreak was at age 14 on my left mid back. Treated with acyclovir and went away.
Flash forward to 2014, at age 40 I went to doctor because I had been sick for a week and oh by the way I think there is a spider bite on my left butt cheek. It was shingles and treated with Valtrex and steroids for my other symptoms. This outbreak went away with no PHN.
July 20, 2015 I was having pain itching on my left butt cheek again. A friend looked and didn't see anything, but I woke up the next day knowing for sure it was shingles. I went to the doctor right away and got on Valtrex and Pain meds. This outbreak was much worse than the last and in the same spot on my left buttock. PHN started from there. Since then I've had an outbreak every 5-7 months. 2/2016, 8/2016, and 1/2017 and always in the same place.
Now I'm experiencing fever, headaches, dizziness, and general Malaise for the last 5 days. Increased pain in my left glutt makes me concerned I'm having another outbreak. It's only been not quite 3 months. I have finally started to get my energy back after the last outbreak in January.
As far as treatment I've been on or tried just about every medical and several alternative treatments to help with pain control and attempts to prevent further outbreaks. My current meds include; Acyclovir, Tramadol, Lyrica, Duloxetine, Venlafaxine, Lortab, and I also take Vit. C, D, multivitamin and a probiotic with fiber. My GI doctor also just started me on Relistor for the opiod induced constipation. (Fun times, NOT!)
As far as doctors my GP has been the most help to me. She referred me to a pain dr. He tried a couple injections that only gave me relief for a month or two. He tried some laser treatments, I had an outbreak during those treatments. After that he referred me back to my GP and said to take Lyrica instead of Gabepentin that Lyrica was more effective for PHN. My GP tried to refer me to a neurologist and they wouldn't see me. They said there was nothing they could do. I did finally get to the neurologist through my gynecologist, and they indeed could not do anything for me. Neuro sent me to the pain clinic who referred me to the pain psychologist. It seems my GP had already tried everything they knew of for my pain. They could also refer me to St. Louis to try a treatment with Capsaicin that required inpatient treatment with general anesthesia to help control pain from treatments. This is not worth the risk at this time, especially since I continue to have outbreaks.
My failed treatments include; gabepentin, topamax, lidocaine patches and cream, lysine, natural pain relievers with brown seaweed. There may be others but I can't think of them now.
Trying to work part time and I can't even do that successfully. I'm lucky enough that my employer puts up with it for now. I've only been employed there for 9 months and still on probation because of my attendance.
I applied for disability per my vocational rehab counselor after I lost my job that I worked at for 5 years. I couldn't perform my job duties with not being able to sit very long and only being able to control pain with narcotics.
My disability case is now awaiting judge review after being denied twice. It should be reviewed soon since they are asking for updated records.
The daily wear on a person mentally and physically is tiring. Trying to support my children and myself on part time pay is not working. I want to work to support my family however I feel as if working makes my symptoms worse and adds to the reliance on pain meds especially narcotics. My current employer is okay with me taking pain meds, but I'm fairly certain if they knew how much I had to take to get through a day I would lose my job. I went back to school for medical billing and Coding. A job I could do from home. I'm certified now but the odds of me getting and keeping a job with all the pain and other affects from having this chronic illness are not very good. I pray daily that things improve and I have better function.
I'm currently seeing the pain psychologist who is helping me to accept the pain and be able to function despite the pain. It's a hard realization when you have to accept that the pain isn't going away.
I know there are those of you out there who have dealt with this longer and can help me put things in perspective. My post is long and I've tried to summarized everything that has happened. It's been a long almost 2 years since this PHN began. Any advice you can give me I'm open to. Right now my main goal is to not increase the narcotic pain meds I take any more and find a way to accept and move forward with pain.
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