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.
juliettagirl
Unfortunately, I went searching for bad news and I found it on a blog from 2000 in the New York Times.
It was about the vaccine, but all these shingles sufferers said that they were into years---like years and years---well over three years--with the phn.
I was beginning to feel that I was a little even an inch out of the woods and now I am more depressed than ever.
Is this the mess and life I have to look forward to for the rest of my life?
If anyone wit take heart support and out of the woods experience can cheer me up, can you please do so?
I guess I need to blank all the long term--like over a year cases out--and count my blessings...like I have a good job, I did not go blind, I lost twenty lbs, I have a beautiful cat and family...
Thank you for listenng to me. I know I am the Worst Complainer ever on these boards
It was about the vaccine, but all these shingles sufferers said that they were into years---like years and years---well over three years--with the phn.
I was beginning to feel that I was a little even an inch out of the woods and now I am more depressed than ever.
Is this the mess and life I have to look forward to for the rest of my life?
If anyone wit take heart support and out of the woods experience can cheer me up, can you please do so?
I guess I need to blank all the long term--like over a year cases out--and count my blessings...like I have a good job, I did not go blind, I lost twenty lbs, I have a beautiful cat and family...
Thank you for listenng to me. I know I am the Worst Complainer ever on these boards
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I read the link about the Iceland study of shingles patients and it stated that within one year 99% were pain free. I choose to believe that.
Studies can be done with a bias like the egg verses cereal was done. Of course being done by the cereal board, it came out much healthier than the eggs. Now we know most things in moderation is fine for the average person.
Don't worry and cause more stress. Mom is counting the days almost till her year is up. I hope the pains disappear before that but we all will see. My past experiences with surgeries have been that all the pains are gone and so are the reminders within a year. My last hernia was in 2005. Recently I had a small reminder which felt like a pulling stitch. It was faint. That makes it 7 years since I had the surgery but none of the symptoms were constant or any majoy lingering occurred.
If I were you, I would discount the article as trying to sell vaccines.
Take care
Mary
This information was copied off another forum from a few years back.
Hi Everyone,
After catching up with all the posts I would like to tell you all
about my myth busting missing. Finding a doctor with an understanding
of PHN is rare, but last month I was able to talk to Dr Bowsher who is
an expert in PHN, in fact if you do a search for it then you will
probably find a handful of articles by him as he travels the world
talking about PHN so what he doesn't know about this condition isn't
worth knowing ;) Below are the questions I asked him and his answers,
and my commentary.
The age issue
"I have analysed age in 179 successive patients of mine. 7 (3.9%) were
under 40 at the time of getting shingles. They proved no harder (or
easier!) to treat than older patients, nor did they require higher (or
lower) doses of drugs."
OK, so let me reiterate, no matter what your age there is no real
difference in the way you are treated for the condition, usually an
anti viral (if you are lucky), a tricyclic antidepressant, neurontin,
lidocaine patches (if you are in the US, you can get them in the UK,
but your GP has to make a private prescription and you have make a
request to the chemist), some kind of codeine/opiate based painkiller,
capsacin cream, pregabalin if the neurontin doesn't work, then
epidurals and nerve blocks (whose effectiveness depends on where the
damaged area is based). Then there are the alternative treatments
like massage (it works!), acupuncture, aromatherapy, herbalism. TENS,
physio etc
Despite your age, what matters is the way that the PHN and the
treatment effects *you* and the way that *you* deal with it which is
just as individual as the treatment combination which will work for
you. What you do need is to have immediate treatment if you have
shingles, if you still get pain a month after the rash has cleared up,
go to your GP and demand neurontin and an appointment for a pain
specialist, if you haven't got one already.
On a pattern for improvement
" There is no pattern for improvement. However, if your sensory
deficit (I.E. Thresholds for touch, warmth and cold) in the affected
area is diminishing, this is a good sign and indicates recovery."
On making a full recovery
"Let's be honest; the longer it lasts, the less the chance of a full
recovery. However, this is not a hard and fast rule, just a
statistical one" (As the majority of PHN sufferers are older/very
sick, they may die before they make a full recovery, thereby screwing
with the stats). "I have seen many people recover completely after 2-3
years and in one instance after 12 years!"
Correlation between when you have had chickenpox and PHN
"Usually, the later (older) one has chickenpox, the less the chance of
subsequent HZ and so PHN (HZ and particularly PHN are rare in India
where the average age of chickenpox is much higher than in Europe and
the USA."
I hope that this information sheds some light on your questions. and
here are some more of my observations.
If you have a parent/family member who has PHN, please be
understanding, even when you are healthy you are allowed to have bad
days, but when you have precious little sleep, constant pain, feel
like you have IQ points dripping out of your ears as well as a myriad
of new side effects with every drug you take it is very difficult to
act like a normal person. Try not to take it personally that they are
not the same as before, that they frown a little more than before or
that they are unable to hold a conversation, believe me, if it upsets
you, it sure as hell upsets the sufferer a lot more and no, you can't
just "snap out of it" - I am sorry to say, but I have heard that said
Don't constantly push for the new treatments you have read about,
going through multiple medications is very difficult, especially when
the only effect it has on you are the side effects. Yes, your help is
invaluable, but from someone who has had such helpful advice, please
don't push the matter. Every time you try something new you get your
hopes up and when it doesn't work, you come crashing down to earth.
It may not feel like it to you, but from a sufferer's standpoint, this
process is soul destroying, again don't push them to 'get back on the
horse', but allow the sufferer to regroup and let them have the time
to feel disappointed that it didn't work and then tackle the next
treatment on their own terms - it is very difficult to live without
hope, so give them time to find it again.
And finally, fellow sufferers, I hope the stuff that Dr. Bowsher said
will be of interest/use to you. I found him to be very interesting
and also comforting. I was able to go back to my GP with the
information and finally get some lidocaine patches. On the upside, -
and I know that I keep on about it, but after doing those massage
techniques every day for the last couple of months my skin doesn't
seem to be as irritated as it has been, maybe this is the beginning of
the end for me (and about time too!).
Regarding drug side effects, I'd like to also add that you can act
strangely/not able to concentrate, simply by having the pain without
the side effects of drugs. Whatever you do, whoever you are, PHN is
going to turn your world upside down and we just have to adapt to it
the best we can and hopefully so will the people around you too.
I hope that this has helped with your understanding of this irritating
illness.
Massage does help. I do that for Mom every night unless I am asleep and she doesn't wake me. Reading the other study and telling her about it with 99% complete recovery in one year has made a difference in her attitude. She was better today than yesterday. I came home feeling bad and she perked me up.
The problem now is Mom's hearing. I did read shingles can make hearing worse. She was going deaf as long as I can remember. I think it is due to something that happened when she was a kid. Nerve damage from lightening strike close to her.
I used to say every day was an adventure. Now every day is an event. But look at it this way, you all have one less day in pain and one day closer to complete recovery.
Take care
Mary
Thanks!
Lisa
It impacted my hearing in a different way than the previous hearing loss did. I have the sensation of tingling on my ears when I lay down, I can tell the rushing "whoosh" means I may hear clear for about two minutes, and the difference is noticeable to me.
The pain from the shingles comes at odd moments for me now, however, it does not stay as long visiting me as it used to. I do the relaxation exercises, and have gotten to where I do them where ever I'm at.
Best wishes.
I now use my phn as an excuse NOT to wear my hearing aids!
It does not hurt to put them on but I cannot be bothered to do so.
This is a complete hoax on my part. All believe that it hurts because of
The phn! It is my little sneaky joke that makes me laugh. Now people just have to tolerate me saying..what did you say, what did you say, what did you say..
Feeling better today, who knows about tomorrow?