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phn cause treatment

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Guest
Guest

On the 22 Dec 05 I contracted shingles. This a culmination of a divorce, the death of my brother, the sale of my home, and retirement. Some Christmas! I did not know what hit me so I did not get the anti-virals in time. Two years + on and the pain is still there and just as intense. I've tried all the treatments but with little success. I'm now on Lidocoam? Patches which I had to fight for. Too expensive said my trust! They were eventually prescribed by my pain clinic who seem to carry more weight than my GP in these matters. Just last week I had a steriod injection near my spine (Paravertebral/nerve root block). Thus far this has done no good and may be aggravating in the short time. I recognise this is early days yet though!

The pain from this condition is constant and can be unbearable and totally debilitating. It affects your whole life and your ability to function. Yet, from doctors, nurses, employers, friends, and even family, there appears to be complete ignorance of this fact. Most seem to nod their heads but continue as if you are exaggerating. This really helps you to cope!!

Reading these other accounts, my two years seem small fry. I have great sympathy for others with this horrible affliction. I just hope mine clears up more quickly. It would be nice if the problem were discussed more widely however. Once upon a time we encouraged our children to contract Chicken Pox. I wouldn't do that now! How many employers think their employees are exaggerating or worse I wonder? How many careers are affected? How many relationships?

Spreading a little education here might generate more understanding and tolerance.

I wish you all well!!

1 like, 18 replies

18 Replies

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  • Guest
    Guest

    Posted

    I fully understand what you are talking about. I too have had severe PHN now for 2 years. I'm only 39, I too had just split up from a long-term relationship and had to move twice in 3 months, then buy another house. Only just moved in and went down with shingles, timing couldn't have been worse but then this is when shingles attacks when your body is low. I still have terrible stabbing, shooting, electrical pain that takes your breathe away and stops me in your tracks.

    I too am on the patches, gabapentin and tramodol to help me battle on. The first year I only managed to work part-time and have only managed to get back to working full-time this year. Friends, family, colleagues just do not understand, I've completely given up trying to explain!

    People do need to be more aware of the dangers of shingles and it's complications. I feel that it has ruined my quality of life, but I have to try and ignore that thought and be strong, carry on fighting and hope that it will get better. Good luck to all fellow sufferers

  • Guest
    Guest

    Posted

    By the way, I hope you come back online. I'd be really interested in knowing if the steriod injection helps your pain or not?

    How long are you suppose to give it to take effect?

    Good luck and keep hoping for a recovery, in the meantime distraction by keeping yourself busy doing whatever you love most, helps.

  • Guest
    Guest

    Posted

    I've only suffered from shingles/phn for a few months and fortunately I have a partner who understands. It seems terrible that people have to suffer from this very painful condition without sympathy from family, friends, etc. This forum ought to help but it can be frightening to realise how long this condition can last. Have you heard of the Shingles Support Society? They have a useful information pack. It seems a shame that there is only sporadic messaging here ....
    • jim66082
      jim66082 Guest

      Posted

      can you please send me their website.   thanks   jim
  • Guest
    Guest

    Posted

    This complaint is does not have the national coverage that it deserves. I contracted shingles in January this year being low from a Christmas virus.

    I am 63 years old. My GP told me I could suffer a few months, a few years or for the rest of my life with post herpetic pain, and I can't get off a high doseage of gabapentin. She said the government are looking at implementing an innoculation for shingles as so many are contracting the virus. This is a complaint that has been kept from public eye. Fortunately my wife is sympathetic. Good luck

  • patricia49047
    patricia49047 Guest

    Posted

    So sorry you are going thru this..I too feel your pain....literally! I have the same problem from shingles 16 years ago. Now I have intense unbearable pain down the back of my leg and foot. Had to retire from my teaching job because of the relentless pain. I take gabapentin, amitriptyline, klonapin, Ultram. They do not help much, there has to be something out there for PHN!
  • jim66082
    jim66082 Guest

    Posted

    Best I can say is an elderly doctor in his 80s actually hugged me and said "I am so sorry you have PHN from shingles - some of my patients got some relief after 5 years".  It has been now 7 years and there has been some slight relief but it is still a life altering illness.  To make a long story short - ended up on disability - couldn't work half naked and still be in pain.  Have been on every concotion possible and even had a neural stimulator implant through neurosurgery.  Now on 100 mmg fentayl patch plus oxy plus cesamet plus hydromorphone for breakthrough.  Have a lidocaine/gabapentin/ketamine cream.  Very selective about the type of clothing I can wear - has to be semisnug snug cotton.  I have good partial days and bad days.  Still seven years later can't have sheets touch me at night in bed.   THe worst part now is the high levels of narcotics and when the patch doesn't quite work the pain and the withdrawal symptoms combined are beyond belief.   Sucide for this type of pain in the elderly is higher than for cancer.  Once doctor said it is like the pain of cancer without the relief of death. Few people understand it - my best explanation is a bad burn from scalding water and then rub sandpaper on it.  That is the sensation when you wear clothes and the pain is just unbearable.  I really dont know what to do any more.  It has destroyed my life and I still try to function in those hours per day that are below a 4 but usually everyday it creeps up to an 8 for a number of hours sometimes a 9 but that is rarer now than 5 or so years ago.  At 10 you kill yourself if prolonged and I go with that scale.  THe only saving grace is my employer paid me disability benefits and i took early retirement.  I am embarrassed to say I did overdose at one point - the pain withdrawal and someother life issues were just too much.  I was found and resucitated after going to respiratory arrest.  It actually reduced the pain for about 6 months - they said it was a brain reset.  THere is an experimental procedure right now where they flush your brain with ketamine to reset brain pathways and there is some success with that.  My near death experience suggests that may be the way to go but also lots of side effects.  I am rambling but this is my experience to date.  I really don't have any friends or online connections that have this horrible affliction.  I also thought  finding fabrics that minimize skin friction would also be a blessing- but havent found anything except for on a case by case basis.   By the way I also did the hypotherapy stuff and mindfullness training as an adjunct.  I do that when I am lying still in bed just wanting the pain to pass.   Happy to chat with anyone one on one to discuss further.  Again my empathy to one who continues to be there.
    • patricia49047
      patricia49047 jim66082

      Posted

      Hi Jim, did you get that website address you were asking about? A guest on here mentioned it, Shingles Support Society. I don't know anything about it, but maybe they can help! How have you been? Have you heard of anything new treatment wise for our awful condition? We can only hope!!

      Patricia

  • patricia49047
    patricia49047 Guest

    Posted

    Hi! Yes you are right. This affects your entire life, every day, awake or sleeping. Every single thing you do is impacted. I have to be conscious of what I'm going to wear, as clothing is a big issue. Everything hurts my leg and foot. So, I mostly stay home in a pair of shorts and compression socks or a type of ankle support that covers my foot. Can't wear just any shoe, has to be one without a back so it won't touch my heel. No more days of just getting dressed and driving the car to go shopping. Everything has to be planned out revolving around this PHN. I hate this and having to deal with the constant pain! And, only someone who has this really understands....my poor husband tries. He's supported me 100% and thinks he understands what I'm dealing with. But, like the rest of my family, he really can't imagine how the pain controls everything! 

    I hope yours clears up soon and you become pain free. All I can say is that you can't give up no matter what. Maybe one day there will be that cure so we have no more pain from PHN. Until then keep fighting it! And if you need to talk or vent, like I just did  ( sorry) I will listen because I know how you feel!

  • patricia49047
    patricia49047 Guest

    Posted

    I too know how you feel. I developed this awful complication 16 years ago after gardening. First thought I had been bitten or stung on back of knee. Three days later I was in hospital after severe back and leg pain, convulsions, and fever. It took  seven doctors sixteen days to figure out I had shingles complications. It went into spinal fluid and caused encephalitis. I was there for seventeen days. I've had three series of the spinal injections, numerous meds, and consultations with pain management doctors.  Now I take gabapentin, Ultram, amitriptyline, and clonazapam. Still have the pain but I just live with it. I had to retire from 27 years of teaching, I was having to much trouble getting around because of weakness and pain. And you are right, no one else seems to understand just how bad this is. Good luck and God Bless. Hang in there!wink
    • jim66082
      jim66082 patricia49047

      Posted

      Hi Patricia:

      I appreciate your comments.  Being able to chat with someone that understands is helpful.  I too left my job of 30 years and was in a senior position that took a lot of effort to obtain (in charge of 300 people in the environment sector) and had huge psychological implications for me.  Difficult to be committed to work and excellence and then struck down by what others see as an invisible affliction - although friends and family see the pain in ones eyes and then as it takes over ones life.  It is the leading cause of suicide in terms of the elderly from a pain perspective.  In certain locations like the eyes, one patient had it in the genital area I fully understand those peoples desparate decisions.  I to wish you well.  jim

    • patricia49047
      patricia49047 jim66082

      Posted

      Thanks Jim. I'll stay in touch in case I hear of anything new out there for us. I'm thinking to go to a pain management doctor again since it's been so long, just don't want to be on heavy duty narcotics. Wonder if the new medical marijuana would help?? I'm in Florida,don't think we have it just yet but I go to California 3 times a year when I can make myself travel.  Have you tried any of the Tommy Copper compression garments? I have the socks and knee sleeve which help a lot with the skin sensivity to touch. At least I can manage to wear anything that brushes against the skin that way! Unfortunately osteoarthritis has taken over my ankle joint and knee in my bad leg which compounds the pain...take care.

      patricia

    • jim66082
      jim66082 patricia49047

      Posted

      Patricia we are so in sync.  I too tried the Tommy Copper T-shirts.  Unfortunately they have heavy seams that are in the location of where i have the PHN.  Of course I bought three - could have returned I guess but didn't.  I also have a prescription of "marijuana" in terms of the chemical pill form.  It allows me to sleep at night when it is really bad.  Given I am on the equivalent of 30 10mg oxy I am leary of being on so much narcotics.  I also have a place in Florida (clearwater) and went for the Quetenza patch treatment and the pain from that was excruiating.  It activates every nerve - it was truly a 9.5/10 and I was actually clawing at the walls given I had to lie there for an hour or so.  I was on additional pain killers but they didn't touch the pain from the treatment. THe doctor couldnt give me more given she didn't have respiratory resuscitation equipment in her new facility yet (just in case).  She later told me that she actually sedated two of her female patients as in put them under in the hospital.  Given I paid out of pocket as a Canadian it was 1500 dollars and a hospital stay wasn't even in the cards.  It provided relief for a few days (not the months that they say some get from the treatment).   I also just went to another pain clinic and they are experimenting with ketamine infusion - into the bloodstream and they think it may reset pain pathways in the brain (they dont know how it works).  However it has side effects that impact memory and in particular reactivation of repressed bad memories.  Success has been limited to date.  They felt given I also have a neurostimulator that doesn't help with the surface pain that it likely wasn't worth the risk.  I should note that the narcotics I am on do a good job in controlling the deep jolt pain that I get but it really doesn't control the surface pain - it does for part of the day to some extent mind you.   In term sof the brain reset I do believe in that theory.  I had an incident that I would rather send you privately that led to such a situation and the pain was reduced for 6 months - I actually could shower without being in pain from the water hitting the area.  Unfortunately that is slowly unravelling and right now I am having a lot of problems again.  I pay a lot of attention to the texture and fit of clothing - soft snug but not tight cotten.  Thinking we could provide a lot of relief with the right miracle fabric but I havent found one yet.  Rough is out and so is silky smooth.  Not sure where you are in Florida - happy to meet and discuss if we were close - I go down in the winter three or so times for 3 to 4 weeks at a time.  The climate actually helps given winter bulk clothes just makes the situation worse.  I am sorry that you are sufferring - I fully understand but "happy" I found someone that also understand.  The psychological impact is huge - and you dont want to whine to friends.  Always say not looking for sympathy but they need to understand the implications of this "disability" and how it impacts me - not attending functions; leaving early; being distracted; being very quiet and disengaged when it is overwhelming.  My escape strategy is to be naked from the waste up and basically lie in bed (only on one side given I have it front and back) and no sheets etc touching.  It makes travelling away from home with others difficult and I need the private space and time.  Has also impacted my family life in a way again that I really dont want to get into on the net.   Thanks and will keep in touch.  Happy to give you my email address if you want.  Can post here - not  a problem really.   One other comment I am lobbying that the shingle vaccine be administered free by our government.  Wrote an article in a pain management magazine although I havent seen it published yet. j
    • jim66082
      jim66082 patricia49047

      Posted

      should just clarify that quetenze is not yet approved in Canada.  We also dont have the lidocaine patch although I have a topical that is lidocaine/ketamine/gabapentin based and formulated by the pharmacist.  Also should add that this ketamine experimental infusion is based on the premise that the pain receptors in the impacted area are basically exhausted/dead and the brain is registering the pain from previous learned behaviour.  That is what the specialist said.  I haven't quite worked that through or researched it.  Doesn't make sense to me given the pain levels typically build up as the day wears.   j
    • patricia49047
      patricia49047 jim66082

      Posted

      Hey, Jim. I don't know about the ketamine infusion procedure, sounds maybe a little dangerous in what it could affect. Have you heard of anyone having it done successfully? Also, I read the post on here from a fellow who is having a procedure done that will freeze the affected nerves to give him more use of his arm. So many experimental treatments! I just don't understand why there can't be something that works...I have been reading about clinical trials and the development of a topical ointment that sounds promising. Unfortunately, FDA approval is still several years away. Another problem with our government.

      i know exactly what you mean about the travel. I'm already dreading the trip to California later this month, as bad as I want to go. Getting thru the airport, all the walking, and being confined in a small space on the plane for six hours. I will have to wear my Tommy Copper knee sleeve so I can put on pants. It has a large seam in the back right where it hurts but I have no other choice. At least it will be tight enough that it won't move when I walk, just makes my knee stiff and painful. Ugh! I hate this!! We live in Northwest Florida close to Destin.

      Emis Moderator comment: I removed the email address as we do not publish these. If users wish to exchange details such as this please use the private message service.

    • jim66082
      jim66082 patricia49047

      Posted

      I agree.  I would be more than happy to participate in trials.  Don't know any more about the ketamine infusion.  I also don't understand why there isn't a topical that can freeze the situation and provide more relief.  I increased the lidocaine to 10% and after a few applications it just doesn't have the same benefit and I have to wait say days/week to apply again.  I mix the prescription cream with a number of other OTC products that lubricate the skin which I think reduces friction with clothing and just skin movement.  Every little bit of relief that is possible helps.  When in florida i did speak to the specialist (as I have up here in Canada) about frost bite or third degree burning the area to kill the nerves.  She said there is one procedure for thermaldestruction but only rarely for terminal patients.  She of course told me the one horror story where the person didn't die "on schedule" and was in worse agonizing pain than before the procedure.  I was even thinking the other day about my topical cream when I went to the dentist and am going to follow up with him to see if an injection or topical application of what he uses would work.  Of course these "potions" are of limited duration but I am ok with that.  They are concerned about the toxicity of some of these drugs through skin absorbtion and impacting other organs.  Risk/Benefit as with everything.  Now I did have some relief when I went on a high dose of prednisone for a while but they are totally against using it given all of the side effects.  The prednisone was for a totally different condition but I am going to "beg" to just try it again to see if it provides relief.  Now I do have a number of hours per day where I am not totally distracted by the pain but recently that window is shrinking which concerns me.  In terms of friends I tell them the best of hours is when there is a stinging like after you touch a burning nettle nettle but then it moves into high gear and more like after  having a bad scalding burn and rubbing sandpaper on it and no relief.  They then better understand what it is like  thanks again  jim

      PS I will be away for a couple of weeks and will not have internet access

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