Shingles Support Group

Hi there, First of all, I am very sorry about what you having multiple episodes of Shingles. Between April 2007 and April 2008, I had approximately 6 episodes. It was the same nickel-sized spot on my upper right arm. At first I brushed it off as just some kind of irritation rubbing against short sleeve shirts or my bra. After the 4th episode I went to the doctor. They treated me with rounds of Acyclovir. I then went to my dermatologist whose specialty is skin conditions. She put me on a regular dose of Valtrex to prevent recurrences. She wants me to take it for 2 years. I suggest you go as soon as possible to a dermatologist as soon as possible as you need to get on a regular dose of something like Valtrex to prevent the Shingles from coming back. The unfortunate result of multiple Shingles pain can be something called Postherpetic Neuralgia.

Hopefully this won't happen to you but after my Shingles stopped recurring, I then started having bad pain without the Shingles. I finally went to a Neurologist and that is what you should do if this problem develops. Also, you need blood tests to see if there is something up with your autoimmune system that is the underlying cause of the Shingles. Your regular doctor could do that. Ultimately, you need to go to doctors who can "connect the dots." Shingles is not a communicable disease so the CDC can't do anything for you. Anyone who had Chicken Pox as a child has the possibility of developing Shingles - from stress, aging, a compromised autoimmune system or for no clear reason at all.

Please go see a dermatologist as soon as you can and insist on a regime that will prevent recurrences of Shingles.

I am there with you. Please hang on and good luck. - alazymoon

thanks for writing me back....my regular family Dr. has never done a blood test for autoimmune system he said thats what the cdc will do...what exactly is it that there looking for with the blood test? I know I don't have HIV or aids? And how do I see a dermatologist w/o a refferal from my family physicion? I have been getting shingles for about 5 years now...

I'm not sure what they will look for exactly but my doctor tested me for "immunogloblins" and auto-immune type things. These are way more common in women but not unheard of in men. Lupus or other auto-immune disease type things, MS, that kind of thing. I hope you get to the bottom of things and you don't have a serious condition as a root cause.

Hi. I have Lupus, and apparently having chronic shingles goes along with that. I have had 27 episodes of shingles over the last 15 years. My Rheumy put me on a maintenance dose of Acyclovir, one twice a day, on a long term basis, and so far so good. No shingles for over seven months! I would not have thought shingles would be a dermatologist's issue, as it it is a herpes virus in a nerve that causes it. I hope you get some relief soon though, it really hurts sometimes, I know. Hugs, Jennie

yes i have had 7 episodes in the last 3 yrs , i was in the army the first time i got it i was only treated for a rash , it doesnt always show up as a rash on me its shown up as bumps in my colon and cycts in my wrist but no one was looking for shingles cause i had just blown out all the cartlidge in my hips and shattered my knees , we assumed the pain was from my injuries and i wasnt treated for it and my rash when it did pop up i ignored it cause i assumed it was a spider bite and my pain was chronic but i was loosing feeling in my legs and in my hand but i would go through fazes where just being touched was torture and was wanting to die , tomorrow i see my first specialist but i dont know where to go from here

thanks everone for posting upon here. I see a specialist on 06/05/09 and I will post up what I find out on here. As for the person who is seeing a specialist for the 1st time please make sure to post what you find out. You never know it may help someone. As far as my shigles I only have a little bit of a rash but the nerve pain is still the same..

Hi,I'vehad shingles at least 4 times a year for the past 15 yrs.They did all kind of tests but i was ok except my immune system is really down low.I take acolvir also and it helps some.My dr.keeps saying stress causes them.But if thats true we can not always be stress free.In 2001 we lost my mom yo heart attack in Jan then in Nov our house burned to the ground.In 2006 we lost 2 sons in 4 days.The first died of a massive heart attack and the second was killed in a car wreck right after the first ones funeral.We finished raising our grandson who was 15 and wanted to stay with us.I have a strong believe in God and know one day we will know why all this has happened.But my point is i wonder if the Dr.could always live stress free as she tells us to do.I am praying they will find a cure.I will be 60 in June so can finaly get the shingles vac.mine always break out inside the left side of my nose.And are very painful.God bless each of you and I pray they will find a cure soon.Hugs and prayers Betty Sue

Hi there...i'm 28 and have been getting shingles for the last five years or so. It comes up as a coin-sized area on my upper left arm. When I first got diagnosed, my doctor had to get a second opinion because she was unused to seeing it in a younger person, in such a small piece, and not around my body in 'rings'.

In the first instance I was treated with aciclovir, in subsequent incidences I have tended to do nothing - as it isn't very severe, and blisters/scabs within a few days.

A couple of years ago I scared myself by reading that the recurrences could be down to a compromised immune system and went for a HIV test which was negative.

I have been back to my doctor to discuss the recurrences and was given a blood test which was all normal. I have been reassured by more than one healthcare professional that there doesn't always have to be an underlying cause for the recurrences, and that plenty of things can trigger them - things I have noticed is that direct sunlight on my arm brings it out, as can drinking alcohol (in excess!).

I find it incredibly frustrating not to have a reason, I also find it frustrating that everything you read about shingles says it 'seldom recurs'. I wonder how many people get it again and again but don't see their doctor because they know that it will go away on its own (or I guess because in the US you have to pay to see a doctor!).

I have had an episode come up today (the first in about six months which is really good for me) and have decided to take some aciclovir that a doctor relative gave to me in case of emergencies. I asked her about taking a suppressive medicine every day to keep the shingles at bay but she said that as soon as I stopped taking it, I would be as susceptible as I am now, so I don't know if there's any point! Does anyone know if this is true?

I am so relieved to find a place where people are talking about recurrences, as I was beginning to think it was only me - and that I might have some horrible underlying problem.

I'd be really interested to hear what advice other people get from specialists so please share!

Thanks, Jenni (london) x

when you have shingles it causes the acids in your stomach to decrease not allowing your body to absorb the nutrients which in turn weakens your immune system i started taking eldaberry juice it boosts your immune system its also an anti inflamatory so it helps with swelling ive been going through this for a long time to but you also need to be careful i usually get the small rashes but learned when i went to the er because my right arm went completly numb no tingling nothing dead i went to the er and dotor informed me you can also get out breaks on internal organs so managing it is extremely important right now i'm getting no where with the va the specialist and his supervisor made it clear i need to be on a daily anti viral medication to keep it at bay but my pcp has made it clear this is out of his league and keeps canceling my medical apptments so i'm finding ways to fight this on my own with support from my friends

ok i'm on my 8th episode and starting to worry never had them so close to gether 2 out breaks with in a 6 weeks period and doc has me on a tolal of 27 pills a day i'm so dreading this i was on 24 back in may and between being sick and in pain the meds made it unbearable one was making me suicidal , i litrally sat in my kitchen crying my eyes out cause i wanted to rip my skin off it hurt so bad and could not get the thought of killing myself out of my head i got off the anti depresants the dr put me on imediatly its tuff enough constantly going through this with out me loosing my mind , i took all the research i had with me and the va dr wasnt even intrested the meds i'm on now should help with the pain and just stop by the office for a script when i have an out break i just happen to be one of the ppl who got shingles early in life is what he told me nothing about why the hell i keep breaking out