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PHN Survival Skills

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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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  • lesinnords
    lesinnords jim66082

    Posted

    Jim, I see your post was a year ago. Hopefully you no longer have HPN.

    i have had it for almost 14 weeks , which makes me feel I am in ' for the long haul'

    I agree with many of your observations, and, ' the pain of cancer without the relief of death' is a very apt description,

    Each day is a nightmare, surviving it is what I do. It is well nigh impossible to explain to others how bad the pain is.

    i have rheumatoid arthritis so the meds I am on mean my immune system is low, so it is doubtful the pain will disappear anytime soon,

    I don't know of any research  here in Australia, shingles is seldom mentioned. However since my dose, I hear through friends and acquaintances of other cases. Although they have all been relatively short 

    attacks, mainly a week or two, 9 months being the longest (and still going)

    just hope someone somewhere comes up with a so,union to this crippling pain.

    cheers, Lesley 

    • jerryshen
      jerryshen lesinnords

      Posted

      How can you get recovery during 14 week ? My father got this a month ago. Now the pain trouble him but we don't have any idea on this. Can you share some information of medicine and treatment to me ? Thanks. 
  • ianmac_45
    ianmac_45 jim66082

    Posted

    I know exactly what Jim means. I have had PHN pain in my left shoulder, side and breast since August 4 2013, 24/7 as the saying goes. 2 choices either get drugged up to the eyeballs and feel like a zombie with all the side effects or minimal drugs with no side effects but much pain. My doctor calls it hellfire pain!  I do the latter just taking 300 mg daily of Lyrica which helps slightly. Just have to grin and bear it and hope it goes one day. Ian
    • jocelyne44618
      jocelyne44618 ianmac_45

      Posted

      Hi Ian mac  I have just written on here to jim  then noticed you  letter.. Can I ask are you in the UK or where and how old are you, because  My pain is like your down my right side  and up my shoulder and under my right breast.  my hospital pain clinic  appointment for another month. but they said Im on the highest drugs they can give me so what do I do apart from hide away at home and cry.  I wish you well take care Jocelyne
  • jocelyne44618
    jocelyne44618 jim66082

    Edited

    Hi Jim,  like you what would we do with out this site, today its half was through half term and I had arranged over this week to do so much but looking at the half started box I had emptied; ready to throw away so much paper work and junk... Today I should have gone for lunch with a friend from school, only to find i text her  saying sorry to much pain today, I cant meet you,  so I spent the day at  in bed  with a glass of water and my meds but  I feel like some one has kicked me in the ribs,  sso so much pain,  I cry my self to sleep,  lucky in a way I dont think have  some one living with me  they would think im "Putting it on"  no one really understands until they get that sort of pain,  I want to go back to school next week, but I now have to admit  I dont think I can return to school. Im 62 this week and still have 3 more years to get my pension..but what do I do when I cant work with students any more,  how do I pay my bills  living in the uk  with no private pension  how do I live on my own and pay my bills,  is there any one out there can tell me  please

    Jocelyne

    • jim66082
      jim66082 jocelyne44618

      Edited

      Jocelyne:  Your comment was just flagged in my email - although the site says it was posted 21 days ago.  Not sure why.

      We have exactly the same experiences.  I may have mentioned a few years back I was part of a research study by a psychiatrist doing work on chronic pain patients.  We all had different medical histories but at the end all had chronic pain and none of us were working at that point. Everyone had the same life impacts wrt family and friends.  At least we knew we were not alone, or insane or somehow weird in how we manage or cope with life.  I would say go on disability - I assume your employer woud support that and you typically are covered  up to retirement. If you cannot go on disability do whatever it takes to get to the retirement date - they are not going to fire you if you reduce your output etc - they must see the impacts.  Once you have your pension you can find activites that provide social engagement that are geared around your "up" time vs down time.  It isn't easy - not at all.  Depression can set in and one can begin to think there is no future.  In fact suicide from PHN is the number 1 reason for ending life for people that have chronic pain.  It is real, it is dehabilitating - that is the reality.  It is not about you, your tolerance to pain, or not being able to bite the bullet and get on with life.  It is a torture that impacts llfe in serious ways.  We also dont want to burden others with our problems.  Good friends realize that - one friend when they ask just look at me and say "same same" - when they ask how I am doing. It is our code word and I appreciate their concern.   You wrote this when you had a bad day, or days and all is bleak.  When you have some good hours try to think positively and there are still treatments that may help down the road.  I also think over time there are small improvements or maybe it is coping a little more.  Not sure.  take care   jim

  • cathy007
    cathy007 jim66082

    Posted

    Hi all, i am a 54 yr old woman in the US. I had severe hip pain around Nov 28th. i drove myself to the emergency room in the middle of the night. They told me it was probably a pulled muscle as i has recently returned to running. The pain did not go away. I saw a nurse practioner a few days later who agreed with the diagnosis and gave me percoset. I made an appt with an orthopedic doctor. The next day on a Thursday, i noticed my right leg has a type of rosy color to it. I went to the local walkin clinic and questioned shingles. I was told no by twp physician assistants. I finally had my appt with the orthopedic doctor. Still in major hip pain. He thought it was bursitus. Wait it out and if no better he would give me a cortisone shot in two weeks. All this time i was taking narcotics and hot baths at all hours of the night as the pain was unbearable. Next came an mri of the hip. The orthopedic said the rosy rash had nothing to do with the hip pain. so at that point, December 30th i was infected for about a month with no diagnosis of shingles. I will finish my story tomorrow
  • fin0402
    fin0402 jim66082

    Posted

    Jim

    I've been struggling with PHN for 7 years and your words really rung true to me. People just don't understand how debilitating this thing can be. I've had so many people say "oh just take a couple of days off" or "why don't you just have some paracetamol and get on with it". My pain is over my forehead, with occasional swelling, and can effect my vision from time to time. The doctors say there is no way PHN can change my vision but I live with it and I know it does. My pain is like sandpaper on skin sometimes and at others like burning needles. 

  • cathy007
    cathy007 jim66082

    Posted

    Sorry, i didnt come right back. And also, please excuse any typos, i am on a small tablet.

    I went to my regular doctor on December 29th. He said right away it was shingles and he couldnt believe no one that i saw dianosed it. At the point i still had major hip/thigh pain, a rosy rash on the inside of my leg, a rosy rash in my peri area, and had broken out in about 5 blisters in that area. I was put on antibiotics and 300mg of gabapentin 3x a day. The pain and burning continued so badly it hurt to pull down my unders. I had a hard time taking the gabapentin 3x a day. The morning dose makes me drunk. I now take one at 12, 6 and 10 before bed. am also on tramadol. I have noticed in the past few days my pain is not so bad. I am not taking the percosets as often.

    I also made a lotion with coconut oil, and the following essential oils: lavender, peppermint, geranium, hyperpercium, and spearmint. I rub it on my leg and right buttocks. It helps i think.

    I have a follow up tomorrow. After my initial confirmation of shingles i had a follow up in a month. I had to go in 2x during that month because i broke out again. Its been a nightnare as you are all well aware. So...weekend after thanksgiving till now

    • jim66082
      jim66082 cathy007

      Posted

      cathy:  sorry to hear about the pain.  I just know how difficult it is re: finding clothing etc that minimizes to the extent possible the pain.  One of my major issues is irritation from clothing.  Have tried so many topicals as well - however 10percent tetracaine is helping but it cant be used daily otherwise one becomes too tolerant and it doesnt numb the area as much. Wishing you well.  All you can do is try different medications and therapies and hope they work for your specific situation in controlling the pain.  HOwever it is a challenge to find health care providers that are knowledgable and willing to experiment.  jim
  • cathy007
    cathy007 jim66082

    Posted

    Thanks Jim. Somedays its not so bad, others are bad, but farther apart now. I hope i am on the road to recovery. Never in a million years would i have thought i would get this.

    Take xare,

    Cathy

  • pam27550
    pam27550 jim66082

    Edited

    I am on my 3rd round of shingles and PHN.  I got my first round in Oct 2014 immediately following shoulder surgery.  It was just on the left side of my abdomen.   The doctor figured the stress of the major surgery may have triggered it.  I never went on the antivirals because I didn't know that was what I had.  The symptoms were of shingles but I never broke out in a rash.   When I did get to the doctor, he told me that some people don't break out.  Nice of them to include that in their commercials.  

    I thought the first round was bad.  Wouldn't wish it on anyone.   Eventually the pain did go away although nothing they gave me helped except the lidocaine patches.  They were fairly easy to use on my abdomen.

    Once the pain went away and I was better, I got the shingles vaccine.   Figured surely with having had one round of it and the vaccine, that I was safe.

    WRONG!!  In late September of 2015, I got it again.   Again, I didn't break out.  This time it was on my right side and when it started out, I just thought it was irritation from my bra strap.   By the time I realized I was wrong, it was full force.  I literally had it from my breast bone wrapped around to my spine.   Again, no rash, but I hurt, it burned as though I was on fire, I felt like someone was poking me randomly with a hot poker (kept trying to find who had a voodoo doll of me!).  My breast hurt terribly like it used to when I had PMS.  But most of the pain and discomfort was in my back, shoulder blade and under my arm.  Try as I might, I could not get the lidocaine patches to stick....not only couldn't I reach it well enough, they just didn't want to stick in that area. 

    I was on tramadol, gabapentin, tegretol....name it.  No relief. 

    After about 3 months of excrutiating pain that nothing helped, my doctor referred me to pain management for a possible nerve block.  It took PM 2 months to get me in!  By the time I got in to see pain management, most of the pain was gone but I still had certain spots that had residual PHN and were horrible.  

    Met with a real nice doc at PM and he impressed me a great deal with the time he spent with me, however, he said he felt a nerve block was too risky because of the large area involved.  He said there were 2 bands of nerves that cover that area and he couldn't be sure he would hit the right nerve.  In addition, he said either of the nerves that he would have to try for were very close to the lungs.  He said it was possible to pierce the lung and collapse it.  He said he had only had that happen once but that he just felt in my case, it was too risky.  

    He recommended the lidocaine patches for relief but again, I can't reach back to get them where they need to be to help and I live alone.

    In the meantime, just a few weeks ago, I got it again.   This time on the left side. Again, did not break out.   When I started feeling the familiar prickling and burning even slightly,  I tried to contact the doctor for antivirals but she wasn't in and by the time we made a connection, we were past the 72 hour mark.

    The pain I am having from this round is every bit as severe as the last round.  However, it doesn't cover as extensive an area as it did on the right side.  I am in so much pain it is unbearable.   I have to work but working is difficult because the pain is so bad.  Wearing clothes, especially a bra is unbearable.   If I take enough drugs, it will take the edge off the pain a little but leaves me a zombie and I struggle through work. 

    I am concerned about the nerve damage that shingles is obviously causing.  And just how many times am I going to get this damned thing?  I mean, 3 times and a vaccine...shouldn't I be immune? 

    And I've been told that if I'm not breaking out externally, then I am getting them internally.   Research on the internet says that can cause some organ damage.  not that I believe everything on the internet but right now it's about my only source of information.

    The only thing I have found that gives a little relief is ice.  If it is bad at night, I sleep with an ice pack...at least where the worst of the pain is.

    I am just beside myself and don't know what to do anymore.  Doctors are baffled as well.  

    • jocelyne44618
      jocelyne44618 pam27550

      Posted

      Hi Pam  You dont mention which country you live in  Wow  Its like a mirror image of my self,  May I ask you  what age are you?  Do you have a partner, husband  ?  sorry not trying to pick you up  lol   Tomorrow in the uk  I am going for the first time with our local hospital. to the "Pain Clinic"  for  4 HOURS.  I have been told  they spend the time listening to lots of people who have pain from any part of their bodies and how they try to take their minds off of the pain.

      I dont want to sit and listening to lots of peoples pain issues   ITS different on here, we are all suffering from the same problems  ie

       PHN  we are able to tell each other, what has worked for them  for example, some one on this area mentioned that wear cotten close to the skin, and also  wear it inside out so that the seams dont rub on the skin    I tried that  and THANKYOU  its working  I brought a ladies vest made from cotten from a large clothes department M&S and wow its working, I still sufferer from the burning pokers or stinging nettles.  The lidocain patches  worked at one stage, but I had to drive to school

    • jocelyne44618
      jocelyne44618 pam27550

      Posted

      Hello Pam  now i am going to confuse you   please read the  message from me jocelyne 44618   start from  you dont mention which country............   Then read  this one second   reason is  my key board got stuck   all ok now   OK  I was given the lidicain patches  and  I have said  your a MIRROR IMAGINE TO ME  I had to drive to school and then ask a very special personto go into the Ladies toilets and put the patches around my bra line and using three patches around my back  then leave them on for 12 hours on then take them off for 12 hours and she would repeat this every day..  weekends  I would try to get my arm round my back and lay on my back with the sticky patch sticking on my back.  at first they were great pain was controlled which I was teaching  but in the end  my skin became hyper sensertive  and I would be crawling around the floor in pain I could not carry on using them.  What I have found my doctor gave me a medication  OXYNORM liquid  (immediate release)  you can take every 4 hours,  and so far  I dont always need it but I would only take when I could not control my pain with Ice packs and  gabapentine 3 x300mg  4 times a day and amitripleanne at night 100 mg  I also wear 125mg  patches for my arthritas pain. in my shoulders, 2 knee replacements  full ops hands and fingers, so im a walking drug cabinet.  well my dear  im 62 years old and I have 3 more years before I should retire. but it looks like after Tuesday  I will be leaving school. and try to live on the social security  money  which scares me since chas dies  I am all alone.  Have you been to see the pain management people because of the recurance of your shingles.

       ok  its 11.20  and I need to get some sleep  but like you even the bed sheets hurt my skin and I am often goes through pain and tears,  I suppose since losing chas to  cancer  he would not have coped with my crying.    I wish you well.  this is part two to my writing to you.  Gentle hugs I give to you.  take care  Jocelyne

    • pam27550
      pam27550 jocelyne44618

      Posted

      Hi Jocelyn.  I am in the USA.   I am 56 as of this past December. I am divorced for 18 years now.  My doctor sent me to pain management and was hoping they could do something for me, preferably a nerve block but as I mentioned in the first post, because of the area of the pain, it could be 1 of 2 nerves and either one risks puncturing my lung. 

      The doctor spent a lot of time with me showing me pictures and models of what was going on and what he would have to do to do a nerve block.  He said he would leave the choice to me but that he didn't recommend it because of the particular nerve that is involved.  He felt the risks were too high.   So working on lidocaine patches now...but go back to see him in a few weeks for follow up. 

      I'm just tired of hurting and tired of shingles reoccuring. So I am just doing whatever I can to try and relieve the pain and make it through the day.  I know what you mean about the bed sheets causing pain.  I even hate to take a shower because I have so many tender places.   This pain has been so bad, I don't even begin to know how bad it would be if I had actually gotten the rash with it.  And it concerns me because they say if you don't break out, you break in....shingles on the inside..

      I have numerous other health issues too.  I'm a very brittle diabetic and this kind of pain does not help me keep my blood sugar in control. It's depressing.

      Thanks for your response.   I wish you well also.    Pam

    • jim66082
      jim66082 pam27550

      Posted

      Very sorry to hear that you have had three bouts.  I haven't heard that before but the vaccine is unfort no guarantee.  Like Joceylne I have to be ultracareful in what i wear.  A snug soft cotton t shirt under all shirts - and yes I tend to wear inside out so the seams are on the outside and not touching my skin.  However I still can't have sheets touch me at night and I still have to take my shirt off everynight - sometimes early some times later and sometimes most of the day.  I was on every drug possible and was on such a high level of fentanyl that the withdrawal that happens when the patch failed (about once a week) was as bad as the pain itself.  It unfortunately is about trial and error and trying everything possible.  To be honest the worst part is the desperation when it is really bad and rash behaviour that could happen.  When I had both the pain and withdrawal concurrently I was at the end of my rope.  I saw a doctor who specializes in narcotics - actually deals with addicts on the street.  Told me I would likely be dead within 3 years given I was on such a high dose of fentanyl - more than his streetkids.  So I went off of it - terrible terrible two weeks of withdrawal.  Now just on oxycontin - but i have traded off more pain hours per day for the horrible painandwithdrawal days.  At least I am sane with the pain but was almost insane with the painandwithdrawal.  Also the reason he made his 3 year prediction.  So I am saying this so people understand what life is like for us.  I dont ask for sympathy from anyone - I even dont say much anymore although the psychologist said it is important for each of us to express our pain to people we care about.  Doesn't have to be a long story - but once you dont even say a peep it is like you have given up and given up on others in terms of them caring about you.  So I hope some additional time will help you and that you have no more bouts of this.  I think you should also see an immunologist to see if there are any issues on that front.  take care  jim
    • jim66082
      jim66082 pam27550

      Posted

      There are some radical experimental treatments where they infuse ketamine into the brain and place you in a coma for a few days.  THey dont really know how it works but it somehow resets the pain centres - it is not without risk.  All I can say without going into detail I had a coma experience and right after I could actually take showers again - something I could not tolerate before.  The pain however started to ramp up again although I can still take showers - the pain is bearable - it wasnt before and it certainly was much better after the coma situation.  So there is I believe merit in the procedure.  I have enquired about it but told I was not a good candidate for a number of reasons.  It is also experimental, with risk and I think very limited in number of patients - here in Canada that is.
    • pam27550
      pam27550 jim66082

      Posted

      Hi Jim,  I'm sorry to hear that you are having such a struggle.   I guess this is just something that the doctors don't know that much about.  The pain doctor described it to me as looking at an electrical circuitry.   Some of the circuits get damaged and short out.  In short, some of our nerves get damaged, short out and misfire.   But they don't know what to do about it.  And yes I guess it's rare to get it more than once, maybe twice which coonfuses them even more.   I've researched online--as much as you can believe what is out there--and everything I read pretty much is the same thing....they don't know that much about it, the pain is so severe that it is intolerable, and it's rare to get it several times.  I just do what I can and plug away.  I can't take every day off of work so I just bear it as best I can.  By noon I'm watching the clock and counting my remaining hours.  As soon as I get home, the clothes come off, especially the bra and I get into something looser.  I'm at my wit's end and so are the docs.  Take care.  Pam
    • pam27550
      pam27550 jim66082

      Posted

      I don't know if that is even available here in the US but being experimental, my insurance wouldn't pay for it.  So would not be an option.   I sure would like to be able to take a shower again without cringing.   To be able to sleep without pain waking me.
    • jocelyne44618
      jocelyne44618 pam27550

      Posted

      Hi Pam I have just read your  write up  to Jim, Oh love I am a mirror object  to you,  How long have you had this, for me I got the shingles in June. and now I am crawing the walls,  I have tried to cope at work but its not easy,  longing for the break time and school lunch time to enable me to dive into the loos and cry as quitely as possible then try to smile as you walk around the school. to the last two lessons.   Now Im off for the last two months because I cant cope with the pain. Im on the max  amount of meds that the doctor can give me, the lidecan patches were great for the 12 hours on  but when I take them off, the pain goes sky high.  I hate showers,  I cant sleep on the side of the shingles. and now the PHN.  what do you mean your doctors at wits end.   are you ok pam, if you want your welcome to talk to my private mail area  Jocelyne,
    • elizabeth_03822
      elizabeth_03822 jim66082

      Edited

      Thank you Jim for sharing all that you go through. That drug withdrawal must have been awful. I have a bit of shared experience when I tried to come off morphene and was very grateful for a nephew who told me what was happening!!! Its a terrible thing.  I feel so sorry for all of you with your clothing problems. I have it through all the left hand side of my face and it  can send me round the ...... !! It isso hard to bear as we all know but at least I can wear clothes! Also had it for 6 years or more and lately getting worse. Never lets up. Totally dominates your thinking doesn't it. So hard when you are unable to tell anyone,  so that is why someone told me to find all of you,,,and I do  find its a comfort in a strange way. But Its hard reading what suffering people are daily facing. -Elizabeth 
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