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i am desperate for some sympathy from someone who knows how i feel!

Posted , 5 users are following.

angie76698
angie76698

I am almost certain i have internal shingles. I have not been to the doctor because I'm tried of being looked at like a hypochondriac! Has anyone experienced PHN?

0 likes, 22 replies

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  • susan_81083
    susan_81083 angie76698

    Posted

    Hey Angie, You are not crazy, and boy do I have an idea how you feel.  I had to make an account to comment to you. Without getting into things I have a 12 year history where I keep telling doctors herpes is wrecking my entire nervous system and the fun of trying to get this diagnosed just keeps on giving.  (At this point I'm thinking it could be simplex 1 and Zoster)  I am shocked at how difficult it is to get some of these doctors to take us seriously when something doesn't show.  You could have PHN, or a neuropathy as they can cause pain too.  I now spend my time taking Valtrex daily, and at times I have to raise the dose.  In other words I'm self medicating.  You sound like somebody that should have been put on this drug ages ago for prevention.  If you need me I'll be trying to convince them to figure mine out.  I'm pretty sure I'm a candidate for a Valtrex IV in the hospital.  This stuff is just wrecking my life.  What's wrecking it far more though is the lack of respect out of doctors, and so no diagnosis.
    • angie76698
      angie76698 susan_81083

      Posted

      Hi susan.... Thanks for sharing. I think i will talk to my doc about going on it dailey. I've also had the shot. But as far as respect from doctors....what about the repect we DON'T get from family!!!!! I know they get tired id hearing about how much i suffer from this but if only they knew!!!! Nothing to do about that i guess. Hope you have understanding people around you. I have had to have 2 manograms and so ogram because shingles affected my ledt breast! Nut the eye thing freaked me somewhat!
    • susan_81083
      susan_81083 angie76698

      Posted

      I've done mega doses of Lysine and that wasn't enough for me.  I was lucky enough to have a fabulous dermatologist up on herpes in my last state that wrote a script for me for the Valtrex for daily, up to 2 a day.  I only take 1 a day for preventive (though things still brew, just not as bad). There are times when it kicks up that I up my dose, so if he wrote it this way it meant I normally had some extra to do this.  Like this week, when I'm pretty sure shingles tried to come on.  The shingles dose is 1 gram. 3 times a day.  So that's what I am doing for the week.  Days before this it was searing nerve pain in my foot that I'm sure is herpes related.  I believe you said you currently don't have insurance, and this is super expensive.  Though worth every nickle if you ask me in your situation.  IF later on you can manage on the 500 mg. preventive dose you can still keep the higher dose script and cut the pills in half to save some money. They both cost the same. At some point you might suffer the leftoever pain when the herpes is technically not even active anymore (Which who knows?  Could be some of that now?).  I was given Amitriptyline for my issues with leftover nerves firing (mine was simplex, so no pain/just weird, but this works for the leftover pain too)  This totally fixed that.  It's an old anti-depressant.  Dirt cheap. Only if you take it for a while you do need to taper off because it will affect things like any antidepressant does if you suddenly stop I learned.  It will add a bit of weight and make you sleepier than you've ever been in your life as well.  I got to where I took one pill about a half hour before bed (the script said up to 3 pills  a day and don't go there.  Knocked me out.) and I slept like a baby for 8 hours and woke up OK. In your situation I'd hightly recommend you get some of this and see if it helps.  

      I guess I'm getting used to relatives that don't get it, and false friends.  In some ways I've never felt stronger becaue I'm pretty convinced if most of the "mean" people had to deal with what I have they'd have lost their minds. lol  I've learned such a lesson in living with chronic disease.  I would not wish this on anybody.

      What scares me the most is possible encephilitis, since so far it's hit me in about every other fashion possible.  In my case I'm pretty sure I've got some autoimmune issue causing the herpes problem.  They can't seem to figure that out either.

      I hate to say it but there are also changes in diet we need to be trying.  No coffee ( can't seem to go there).  No tree nuts.  Other things.  Being more active is supposed to fight against it more too.  Swell, the autoimmune part of my deal seems to not like me being too active.  Catch 22.

      I wish you luck.  I wonder how many of us there really are out there.  The science seems to have a long way to go.

      If anybody on here is clued into which autoimmune is more prone to cause this problem I'm sure open to hearing about it.

  • KeyWest1
    KeyWest1 angie76698

    Posted

    Hi, Angie:

    I can only hope someone has a boss like mine.  She had sciatica in her right leg, and was out of work for 6 weeks, a few years ago, and she understands shingles.  I was diagnosed with shingles on my right top buttock last Monday, Jan. 25,  However, I have had the same red spot come and go on the same buttock for yearsand arthritic-like pain in the same spot.  I even had a shingles shot when I was 65 (I am now 69). 

    I went to work yesterday after 7 days rest.  Today I am home because I am so tired...the pain is the same, but I couldn't seem to push through the fatigue and pain, and my boss said, "stay home and rest."  I am afraid I will lose my part time job that I love if I have to take too much time off--and this minimum wage job (in Florida, USA, it is only $8.04 an hour).This adds to my stress.  

    Next Friday, Feb. 5, I am going to my Primary Physician for a blood test--and I'm going to ask him about recurring shingles.  It's amazing-- we have ads for "the shingles shot" on US TV, but they never mention that it can be reoccuring (like I believe mine is)and that the rash pain--at least for me-- is the least of my worries with this terrible virus.

    I hope you can find some comfort-- if your doctor has not advised a blood test, ask him for one.  He/She may find something in your blood that is contributing to your immune deficiency that may have caused this virus.

    Key West Mary

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