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PHN Survival Skills

Posted , 47 users are following.

jim66082
jim66082

Having deal with PHN now for 7 years it still is important to me to share information with others that are afflicted by this terrible condition or with others that suffer from chronic pain.  Important because it is reassuring is to hear how others are impacted and trying to cope in their lives.  It is terrible to constantly have to turn down or cancel social engagements because you cannot bare the pain, are so distracted that you can't focus on a coversation or do an activity that you enjoyed before.  You get tired of responding to people "how do you feel"  "how is it going" and many times you dont look that bad.  One doctor said PHN is like the pain of cancer but without the relief of death.  Not looking for sympathy from others but it is tough on family and friends given they dont really understand.  I tell people now best the pain of a stinging nestle and worst is like a bad burn/scalding and rubbing sandpaper on it.  People also dont understand (as I dont as well) why it strikes when it does.  Everyday for me - but usually later in day after I have had to much irritation from the clothes.  I want to say thank you to a number of people on this site for giving me my sanity back.

thanks

jim

9 likes, 132 replies

132 Replies

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  • joan06139
    joan06139 jim66082

    Posted

    It is a mysterious problem and the docs don't seem to know much.  Tried a low dose of amitrypiline last night but slept way too much today so don't know I can take that avenue. I will use cooca butter in my groin area because it is very itchy.  

    It can fade away but then come back...wierd. 

  • joan06139
    joan06139 jim66082

    Posted

    I am allergic to drugs and hypersensitive to drugs and that is why amitripline made me sleep so much.  It is not an option.  I am 69 and no longer work and this is just another drop in my bucket of woe.

     

  • patricia49047
    patricia49047 jim66082

    Posted

    Hi, Jim. I would ask how you are feeling, but I already know what that pain is like. Rubbing a burn with steel wool is a description I use, too. Anyway I hope that you are having a pretty good day so far. Haven't heard anything new. I hope to find out about the ketamine, lidocaine cream I read about. I'll let you know. Regards.

    Patricia

    • jim66082
      jim66082 patricia49047

      Posted

      I had a mix of lidocaine ketamine gabapentin.  My pharmacist recommended some changes that he has seen with patients including increasing the ketamine conc.  I am having it filled this week and will see if it helps.  WIll let you know.  I find lidocaine of limited help. Once you apply it more than once a day or even daily it loses its numbing potential.  Have to apply everyother day I find to help.  ALthough now I question if it helps at all.  I also add in some lubricants that reduce irritation from clothing which always has to be a soft cotton that is snug but not tight and never ever loose.
    • jim66082
      jim66082 patricia49047

      Posted

      Lastly it is so hard to remain upbeat.  I am having terrible problems with the fentanyl Teva patch that replaced duragesic here in Canada.  I wrote the manufacturer.  For me the Teva patch stops sticking and one doesn't notice until the pain starts and then to make it worse the withdrawal sets in.  6 to 10 hours of misery with pain and withdrawal - for pain you want to lie still and meditate but the withdrawal makes you anxious and totally restless/insane.  Although one knows it will come to an end it is horrible to endure.  They gave me more narcotics for breakthrough but I told them when you are on 200 mg/day plus equivalent oxycontin there is very little you can do to stop breakthrough pain at those doses.  I am going to admit i even looked at dignitas in switzerland who deal with people with terminal illnesses and/or unrelenting pain.  Not that I am there but who doesn't think about those things when one is desperate and despondent.  at a certain point you even stop talking about it to others given you aren't looking for sympathy and have had enough of burdening or concerning family and friends.  jim
    • patricia49047
      patricia49047 jim66082

      Posted

      Hey! Sorry you are having such a rough time with it all. It's a full time job handling all the meds, topical, etc. And like you said each day the pain is different. Hate to admit it but I think we are just screwed!! I tried a 10% lidocaine cream! then put on the Tommy Copper knee sleeve which covers the worst part on my leg. I think it did help me get around better, at least I could get dressed to go to the grocery store. But, I'm going to have to be honest with my dr and tell him the Tramadol isn't really helping. I think it is time for something stronger! Does the Teva patch help when it sticks? What about the Lidoderm Patches? Well Jim, I wish you felt better. Just hang on and take it a day at a time the best you can. That's what I tell myself anyway!  Take care....Pat
  • joan06139
    joan06139 jim66082

    Posted

    I don't know what to say.  I found tha resting is my best choice for pain relief.  Doctors here just interested in making money, very arrogant, don't know what they are doing.  Even want to lower my aspirin based pain med.

    Sometimes I feel like dying too but won't give in..."don't like the ba.tards grind you down" type of thing.

     

    • jim66082
      jim66082 joan06139

      Posted

      That is the only strategy that works when it is really bad regardless of the medications.  However when the number of hours per day of resting interferes with doing anything else in life (there is a limit to how much on can only read watch tv or be on the internet).  also find once i am sleep deprived mood and disposition is negatively impacted.  you focus knowing that there will be recovery but a tough act to keep going.
  • joan06139
    joan06139 jim66082

    Posted

    Yes, I agree with you. I have to walk up about 20 steps with heavy groceries.  Also I like to cook and must clean.  Would like to get out and about too.  Swimming has been very helpful for me with other health problems.

    Mostly I am annoyed with the health care people in US who are arrogant and never listen.  Pain is a bummer and can destroy your personality and your ability to do things. Other people do not want to hear your problems either.  So it is a viscious circle to get help.  I went to two pain management people and they just don't listen and won't order retesting.  The test results were compromised and that is why I wanted them to be reordered.  Also they walk in and say "I know what it is" and that is ridiculous.   

  • croft4Penny
    croft4Penny jim66082

    Posted

    Keep yourself busy! It distracts you from the pain. Try to find the equivalent to Anecream where you live. It is a 4% Lidocaine cream-- not an ointment. It gives me major relief. I also take Gaberpentin every 3 hours, so keeping busy keeps me awake.

     

  • patricia49047
    patricia49047 jim66082

    Posted

    Hello, Jim. Have you been feeling any better? I haven't seen any new postings or information from you and was wondering how you are doing with the management of PHN symptoms. Hope you are well! As can be expected anyway!

    Patricia

  • bnr
    bnr jim66082

    Posted

    Being a victim of this past 6 months,&still suffering it,what one doctor told you made me to burst out laughing!But unless he also was a victim,how could he describe it so succinctly?Agree 100% with whatever I read above.Being grounded abruptly from an otherwise active&healthy{more than most of my colleagues in the age group}life suddenly by GBS,when I was paralized in an ascending fashion upto my chest &having recovered from it after some costly treatment with some human immunoglobulin injections,got back movements of the body some 25%.Cant walk any more on two legs but three!Entire life style changed abruptly,but then I started counting my blessings,which were many,like it happened after 10 yrs after my retirement from Indian Railway service of working as a train guard for 38 yrs, complete outdoor round the clock&round the year on goods,local suburban electric,passenger&lastly for 10 yrs on mail&express trains.I have an able&dutiful son&wife who look after me and also a decent pension to take care of my living etc.Then this HZ descended 6 months back which was diagnosed&treated by my doctor by timely correct medicines.Now the skin is smooth after all the blisters healed&disappeared leaving a lightly colored patch on the left side below my left arm from midriff to backbone on the back.I am lucky not to have got it on my face with danger of affecting eyesight!

    Presently the pain is quite enjoyable like the joy one gets while scratching a scabies infected skin!Mostly it is evident night time before going to sleep,when I derive good sensation when my wife puts her warm palm over the patches&slightly presses the swarms of titillating organisms below under the patches below the skin.I am presently confused whether I should report all these sweet painful sensations to my doctor or go on to enjoy the suffering!How long this condition will go on?

  • daune91734
    daune91734 jim66082

    Posted

    Jim have had post hepatic neuralgia for a year 1/2 now. It is in my spinal cord which cause pain from headaches to disc problems and so forth. I have a question for you and that is how is your diet? My doctor has recently told me to quit sugar which I am trying to do. Also I don't know if you have therapy where you live but I go to a doctor who treats me with a custom care unit which is frequency specific micro current and it helps but you have to go at least once a week. God bless you, that's a long time to deal with this. 
    • jim66082
      jim66082 daune91734

      Posted

      HI Daune:   Havent changed my diet but must admit have never noticed any changes even if there were variations.  I have the electrical stimulation unit embedded into my body.  it doesnt really help with the surface pain.  the "plus" you really on the 4 or so hours one has were the pain is either absent or tolerable as in say under a 4 out of ten.  thanks jim
  • c25272
    c25272 jim66082

    Posted

    Hi all,

    I'm 24 years old and had 1 episode of shingles in March 2012 and since have suffered on and off with PHN (3yrs). I've tried nearly every anti-depressant for nerve pain, capsicum cream, pain killer and lidocaine patches - even physio.

    At present I am using lidocaine patches as my main source of pain relief. It helps on some days but not on others & finally have now been referred to a pain clinic through the NHS. I have also tried Bupa but the consultant prescribed a quentenza patch, however my insurance didn't cover the cost of the patch which is rather expensive and was quite pushy about me paying privately for the treatment as our local NHS facility doesn't carry out the procedure.

    Some days it doesn't bother me, other days I can't bare the sensation, pins and needles, total numbness down my entire right leg and a feeling of tightness. People see a young girl and assume that there's nothing wrong, or that it will ease eventually...

    I've tried exercise and that makes it flare up. I've also noticed that if I'm anxious or under and stress with work it also flares up then too. I feel like I'll never get to a happy medium.

    • jim66082
      jim66082 c25272

      Posted

      sorry to hear at 24 you are suffering from this.  THe positive news is that your age and immune system may provide the stuff that it takes to defeat this ailment.   Try everything - everyone is different.   I did not find the quetenza patch to be helpful and the pain was out of this world - it literally ignites every nerve that has been impacted by shingles.  I think it is about depleting the biochemicals which are needed for pain/pleasure receptors to work.  It is suppose to provide relief for months.  I found the 2 or so hours of pain absolutely unbearable an donly had 2 days of benefit.  For over 1000 dollars it also was expensive.  Now they told me they couldn't sedate me enough when the patch was applied (some patients are actually put under) given they didn't have resuscitation equipment available incase i went into respiratory arrest.   i have found recently that the jets from a jacuzzi actually help to deaden the area in terms of sensitivity to pain.  however one can't live in a jacuzzi.  does provide some temporary relief.  wish you the best of luck.  keep trying.  jim
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