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SHINGLES AND PHN IN 2016

Posted , 13 users are following.

jocelyne44618
jocelyne44618

Why are we hearing more and more people  having this medical problem!  Its great that we are all exchanging ideas, on ways to cope with this  unbearable pain.

My main question is  why are so many people suffering from shingles and the PHN pain?  I understand that its from the chicken pox virus, BUT WHY in 2016 are we  unable to find a cure for this mind blowing pain? and why are so many people in this day and age, getting  it, I was told that it attacks or lays in our bodies until we reach our 50s, our  systems are low .

I know that many of us,that use this site are from many countries, but I would love to hear from you all,on how you became a member of the  shingles/PHN world.

3 likes, 17 replies

17 Replies

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  • erin72929
    erin72929 jocelyne44618

    Posted

    I have never had chicken pox.  But I had shingles when I was about 12-13, not sure why.  However it is very clear to me how I got it this time.  I was ill but was continuing to work full time, even though it was killing me. I was exhausted, run down, running on empty, suffering extreme stress.  One Monday last August, I started having this bizarre incredible pain in my scalp, such that I couldn't touch my hair even.  My eye was so sore the air moving by it as I walked down the hall caused terrible pain.  My cheekbone felt like someone hit it with a crowbar.  You know the story, I'm sure. I was living with nerve pain before shingles.  Now I'm a double winner.  Shingles is by far the worst pain I have ever experienced, easily as bad as a bad second-degree burn from 450 degree bacon fat.  I think we are hearing about it more and more because the population is aging.  Boomers are doers, from what I have observed.  They work hard, perhaps too hard.  Bad combination.  
  • m98777
    m98777 jocelyne44618

    Posted

    I'm 26 and had shingles. I had the most stressful time in life with my job. I absolutely hated everything about it. Felt the burning in my skull then boom! Shingles. My pain was tolerable, I guess. Not saying I slept well or enjoyed it, but it was not the WORST pain I've felt. Also, probably, because my immune system is better than someone who is 65 or older.

    It was a terrible experience, no doubt. I think more people are getting it because we live much more stressful lives now. At least here in the USA, life has always been about "hard work" and such along with a little play on the side. There is a shingles vaccine, however, if you are over 55 I believe.

    • jocelyne44618
      jocelyne44618 m98777

      Posted

      Hi Im 62 live in the UK,  I dont qualify for the vaccine until your 70 according to the booklet the chemist gave me. I think that it also depends what  other medical issues people have (my self I have cronic pain from arthritas in my arms legs and I have 2 full replacement knees)  My  PHN/shingles is under my right breast and round to my shoulder blade)  Trying to sleep when you cant sleep on one shoulder becase I need an op  repeated and the other shoulder has the PHN pain.  No its no fun at any age when you cant lean back on a chair or lay on your side or back,   I sit propped up, I drive in pain because I need to go to work, I walk around a school every hour into different lessons, in a senior school. With out pain meds I cant control the pain and heat under my right breast, I cant bear to wear a bra, (that is degrading in a senior school)  Because of the pain and now losing my energy levels now  Its time for me to consider retirement - but I cant claim my pension for another 3 years.  That hurts because I love my job but cant continue feeling like I do.   You state "its not the worse pain you have felt" all I can say is take my pain and many others just for a day I beg you.

      Jocelyne

    • erin72929
      erin72929 jocelyne44618

      Posted

      Are you taking any nerve blocks?  I take 400 mg of Lyrica per day in four doses.  Without that drug, I don't think I would still be here.  I also take prescription pain meds.  Jocelyne44618 are you taking any medications at all to help with your pain?  You probably shouldn't have the vaccine now anyway, since you have recently had shingles.  I have been told you must wait at least a year since the active infection.  If you can't wear a bra, have you looked at those spandex undershirts?  They would give you some light lift, some modest coverage for that senior school, and maybe without a band on your ribcage you could tolerate it.  Are you putting anything under the breast so you don't sweat and stick and chafe?  Sometimes, I run my antipersperant under there, in the crease, to keep it dry.  Or talcum powder of course.  I am not working right now, and I miss it very much.  I can't retire for 8.5 years.  I don't know if I will be able to go back to work or not, as before shingles, I also had chronic pain from a neck injury/surgery.  I send you hopeful wishes of peace and pain relief!
    • rumbustious
      rumbustious jocelyne44618

      Posted

      Hi Jocelyne

      I'm can sympathise with your suffering. The tender skin, stabbing pain and the electric shock type sensations, to mention but a few of the hellish things that seem come as a package to make it a horrible experience.

      I myself feel blessed that within three months of PHN starting, it is suddenly easing off and I'm well on the road to recovery. I know that at times I was desperate for sleep and to find something to ease the sensations, and that brings me to the reason I'm writing.

      In my search for answers, I came across an American holistic medicine site (I can't remember which) that recommended rubbing a fresh towel that hadn't been used for drying, roughly over the problem area several times a day. An idea that I thought of as insane at the time, but as my desperation increased, I tried it.

      For me it worked. The rubbing desensitises the area; for up to an hour in my case, and gave a lot of relief. I don't know if it will work for everybody, but I really believe it is worth trying.

      Wishing you better fortune and an end to it soon.

    • luis956
      luis956 m98777

      Posted

      I realize this is an old post but wanted to know if you've made a full recovery since you last posted 2 months ago. Although once thought of shingles as an 'old folks ailment' I got it two weeks ago at 42. I believe I got it due to high stress at my current job.

      I also got it on my scalp. Even on my face and mouth; inside my ear, nostril.. Painful.

      Given your young age and strong immune system, have you made a full recovery? Is there still pain/tingling on your sore areas?

      Any information is greatly appreciated.

      Luis

    • bobbie50554
      bobbie50554 m98777

      Posted

      usually the first attack of shingles is much milder than subsequent attacks.  You are in high risk for another attack.  You should have the shingles shot, most insurance covers if you have a documented case in your health file.  Not all shingles is stress driven, mine came from exercise.  I was out of yoga and pilates for 7 months due to foot surgery.  When I returned to it, the opening up of my back exercise released the shingles virus from my spinal column across the thoracic nerve.  I have had 9 major attacks at this point, and the pain is definitely life altering.
    • Jane1618
      Jane1618 jocelyne44618

      Posted

      When did you have shingles and how long have you had PHN? I had shingles a year ago and have PHN, and this week the head pain at the back of my head is terrible and similar to the pain I had before I was diagnosed! I had shingles really badly on my head, forehead and eye, and still have to have eye check up every few months, I have scarring on the cornea but luckily it it slight abd has not caused loss of vision. I al really sick of being in pain, and having an itching eye every single day!
  • ron96331
    ron96331 jocelyne44618

    Posted

    Hi Jocelyne I'm 68 and I had shingles on the right side of the head and down past the ear. That was in September last year, since then I've had headaches every day. I take Neurontin 3,600 mg per day. Also Lyrica 75 mg and Ametrypteline at night 25 mg. The meds numbs the pain but I can't go on taking them I just want to be normal, thinking of ablation of the nerves. I wondered if anyone here has had that treatment.

    I don't know why so many of us are suffering from PHN, maybe it was the loose living of the sixties...

  • Lojza
    Lojza jocelyne44618

    Posted

    The reason PHN is more prevalent today is this:  As you encounter the chicken pox antigens in the environment you build up antibodies to combat it. Since a chicken pox vaccine was developed about 20 years ago, there are far fewer antigens in the environment because fewer and fewer people are getting the affliction and you lack sufficient antibodies to comabat the antigens already present in your body. So, while the vaccine is a boon to younger generations, it has not been a blessing to those of us who have had the pox and now suffer the long dorment aftermath of PHN.
    • michael5678
      michael5678 Lojza

      Posted

      Well I got the shingles after being stressed and trying a new medication that took your body into the depths of low immunity. I have been suffering ever since four years now....
  • jocelyne44618
    jocelyne44618

    Posted

    According to my GP  IN THE UK, AFTER CARING FOR MY PARTNER WHO HAD AGGRESSIVE CANCER TO THE BRAIN (7 MONTHS) WHEN HE PASSED. ALL MY MEDICAL ISSUE HIT ME IN ONE FELL SWOOP., MY SHOULDER PAIN  IS SO BAD I NEED ANOTHER OP TO HELP WITH MY RAISING OF MY ARM., I NEED ANOTHER FULL KNEE REPLACEMENT. I HAVE PHN. ALMOST A YEAR NOW. NO MEDS SEEM TO MAKE IT BETTER. i NOW HAVE STEVEN JOHNSON, AND HAVE HAD 3 OPS IN MY THROAT BECAUSE OF A NARROWING.  WHAT ELSE CAN THEY THROW AT MEET.  MORE AND MORE PEOPLE ARE NOW ADMITTING THAT THEY HAVE PHN, THIS WAY IT MAKES A EASIER UNDERSTANDING TO HOW WE ALL TRY TO COPE. 
  • diane92953
    diane92953 jocelyne44618

    Posted

    One interesting theory I heard (I am a 3 yr sufferer of phn) is that because we are vaccinating now for chicken pox, we are not exposed to the virus. The theory is that exposure keeps our immunity up and helps avoid the recurrence in the form of shingles. Interesting. I understand the CDC in the us changed the age guideline for the shingles vaccination from 60 to 50 because there have been so many cases
  • clive63734
    clive63734 jocelyne44618

    Posted

    I am a 76 year old male and I was diagnosed with shingles in November 2016 it was on the right side of my head and face but even worse was the fact that it also attacked the back of my eye.Now in March I am still in trouble as not only am I left with PHN but also double vision so now wear glasses permanently wtth prisms to counteract it.It has totally ruined my life.Im sorry to be such a pain!!! but I've told it as it isThere is just one more thing and it is I also suffer with a sort of electric sensation down both arms at night meaning I get very little sleep.

    Clive

    • Jane1618
      Jane1618 clive63734

      Posted

      I had shingles a year ago and have PHN. I had double vision but it did go away after a while. I do have a slight scar on the cornea. I had shingles on my head, forehead and eye, and now every day my eye itches like crazy, including the eyelid, Nothing really works to stop it. I now have severe head pain at the back where it started just before I had shingles. I am just so sick of it now as it never ends! I can understand how life changing it is for you, I am just grateful that my vision is back to normal but hate still having pain!
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