Shingles Support Group

Hi Kim. I have had recurrent shingles/PHN for years. Initially went misdiagnosed as I am not atypical. My doctor has told me that when the attack occurs you need to immediately take an antiviral medicine. I take Acyclovir. During attacks: two in the am; two in the pm. I take one daily for maintenance and also now take Lysine (an amino acid available at your drug store). I also take a combination of medicines for pain and am seeking referral to doctors in neurology and pain management. Everyone's body is different in responding to medications. It is critical that you are given adequate medication to control the pain. Many doctors see this as just a case of shingles that will go away. It takes weeks to go away. In my case, I did not even have the rash in the beginning. And, the resultant nerve damage is painful and debilitating. You may come out of this just fine. I have also learned that if this is your first case of Shingles, the vaccine is a very good idea to stop it from progressing. Hope this is helpful.
Colleen

Hi Jr. Good advice there from Colleen. You need to go to a neurologist. The pain from shingles is in your nerves and they understand this best. Mine put me on 4 different medications to control the pain, including Oxycodone after Vicodin didn't really help me. I was also on an anti viral drug, Valtrex for 7 days after the rash first appeared. I too, spent many days crying because the pain was so unbearable- it would wake me in the night and I'd cry because turning over was so painful. The meds I am on do not take the pain away completely- I am in pain 24/7- but they make it more manageable. I am on Lyrica, Gabepentin and Amitriyptilin. I hope you are referred to a good neurologist. Mine is very understanding of how painful this illness is. Good luck to you!

I have had RA for 10 years, complete with severe joint deformities, reconstruction surgery, and I have found the shingles worse than that debilitating disease. I can sleep with a bad flare of RA - but not shingles. I was just diagnosed last week, although I have been suffering for 6 weeks. I think you need to take Valtrex - that has really worked for me - you can take pills, too. I find it interesting you have high blood pressure. I never had it before this year, and I work out 6 days a week, and I wonder if it is in some way associated with shingles. I was on the verge of giving up exercising I was so exhausted, couldn't breathe, and pain everywhere this last month. After being on the anti-viral a few days, the difference was amazing. I felt like my old self. So find a good dermatologist - mine gave me lots of repeats on the prescription, so I can take it any time I want if it flares. He was an excellent doc!

I am an old coot, and this is my first experience with Shingles. My ex-wife had it years ago, very severely. My daughter has had it several years ago, but it was relatively mild.
Don't know exactly when my attack started. Had pain in my left shoulder and arm. I figured it was a muscle strain. Then it got more severe and I though I was having a heart attack. But I felt well, heart was beating regularly. I belong to Kaiser Permanente and in my area you can call an advice nurse if your doctor isn't available. Being the weekend and my doctor not available, I called in. I had gone online prior because my skin in the pain area had taken on a mottled appearance. I looked at pictures of skin conditions and thought my skin matched the photo showing hives. I have a history of sensitivity to a number of foods. The nurse decided that I was having an allergic reaction and put me on an antihistamine (Benedryl).
The next morning, a Monday. I woke to find that the hives overnight had become raised red blisters in clusters on my upper arm and shoulder, and under my arm and armpit. I called my doctor and went to see him. As soon as he saw the rash, he said "Shingles" and immediately brought up on his computer photos of shingle eruptions. The random patterns, the clustering of the red colored bumps were similar to what I had.
He prescribed 50 800 mg.tabs of ACYCLOVIR for ZOVIRAX to be taken 5X daily. I am on my third day.
I think I am lucky since though the pain is constantly with me, it seems to be manageable so far. I suggested to my doctor that if the pain became severe, I had Vicodin 500mg and 700mg left over from other events that I can use. He nodded his head, but offered no other pain relief.
So I am taking me pills, and trying to take it easy and not put needless stress on my body;
Anything i am not covering that I need to know?

A little update I am now at 2 weeks to the day that mine first started. I took my last dose of Valtrex today. The pain is still there but upon advice from you guys here, the many articles I've read and from friends and family I did go to the Neurologist and had him give me pain meds. I'm taking Lortabs 10/500. They are doing the trick and providing much needed relief. I have resigned myself to the fact that this will probably be a long recovery and that has somewhat put me in a state of contentment.

My family (especially my husband) have been very supportive, without them I wouldn't have been able to survive this. It has put me in a constant state of depression but at the same time has drawn us much closer. On a normal daily basis I think we take family for granted but when something like this happens it really makes you see how much you are loved and how much you really need them.

I want to thank everyone here for your advice. Reading all of the articles and personal experiences have been a great help.

I wish everyone a speedy recovery and will keep everyone here in my daily prayers.

Jr.