AFTER EFFECTS FROM THE SHINGLES

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Postherpetic Neuralgia,  well its 6 months now that I have been suffering from this  I tried to make my Christmas  a happy one with my  grandson and new grand daughter, but  I cannot remember what it was like to "Be NORMAL"  My granddaughter wanted to stand on my lap and jump,  I tried to hold her but the pain was making my  enjoyment not so good, I had to give in and askmy very proud son to hold her, and of cause it reduced me to tears.  WHY cant there be a medication that can stop this sort of pain.  at the moment  along with my  arthritas medications I am now on a transdermic patch of 125, amitriptyline  50 mg  at night, and 900mg  x 3 gaberpentin and  every 4 hours I take 12mg og Oxy Norm., and the pain is still there.. Now I have found out that my shoulder  rotary cuff area has ripped and the fluid  inbetween the bones is no longer there and I require a major  operation  ...  What else can be thrown at me,  will I be able to work if I have the  shoulder operation,  will I be able to control my shoulder pain and the  shingles pain.  Is there any one out there I can talk to,  has any one out there  been in a simular situation???

Im thinking about setting up a group for all us Postherpetic Neuralgia sufferers  we all think we are alone,  but just by reading  mail from so many people proves we are not alone.

What do you think???

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  • Posted

    I'm in my 9th year of PHN and I suffer with Polymyalgia Rheumatica (PMR)so I can sympathise with you.

    i have been controlling the PHN pain with upto 100 mg of Tramadol. 4 times a day and 10 mg. Amitriptyline at night, it takes the sharp edges off the pain.

    I have to take steroids for the PMR and because these have side effects, I have to take various other things to counteract them.

    The steroids are anti-inflamatory and take care of that pain.

    Tramadol is said to be addictive but if by some good fortune I have a PHN pain free spell (very rarely) and don't take any I'm fine.

    I must add that 9 years isn't typical. 

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    • Posted

      Thank you Steve, for telling me about your PHN, I have often said I would not wish this pain on my enemy's . I have days where the medication knocks me out and often I  dont wake up til 10 am which is no good for me as I have to work.  .  I could lose my job because of it, as they say Im not fit to work.  I lost my partner to cancer 3 years ago, so I have no choice but to work, I am not due to be pensioned off for 3 more years and I dont have a private pension, so the school wont medical retire me. is their any one out there who could suggest how I try to live my life since having this PHN  thank you for reading my plea I wish you well.  Jocelynerolleyes
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  • Posted

    I'm very sorry for your situation the pain is unbelievable most of your friends and relatives although they mean well can be annoying after awhile. They say, do you still have that or I've had shingles it wasn't so bad. You'll after a bit stop or avoid socializing because you'll want to scream that it's not Shingles it's PHN. Don't do that they haven't a clue what your going thru no one can,the folks on this site do. I don't normally write but everyone here knows the process that your going to endure and believe me IT IS A PROCESS. That said the types of meds or treatment you try is a personal path what you think works for you don't work for other folks, personally l've try most of it, l take 75mg of Lyrica in late evening and 25mg of trazodone for sleep it helps a little. To be honest sleep is hard to come by I really feel for those that have to function at work I don't know how in the hell they do it. I used to take much higher doses of all kinds of pain killer's but you'll find they just get you high they don't don't do a thing for the pain this is part of the process. I've found that the best part of the day is in the morning l ride my bike for 16 to 20 miles yes it hurts like hell but once you go a mile or two you'll ( this is part of my process ) move into a pain free time that is treasured and you won't want to stop. I can hardly stand having a shirt on or my pants near my waist so buy your cloths accordingly you will learn to build a tunnel with any number of pillows so nothing touchs you while you try to sleep. Try to stay physically active as you can always plan for the next day if you don't you will get into a funk that can be very hard to pull yourself out of. You might want to count yourself lucky being in your 9th or 10th month because as I understand it people can still recover up to two years before you have to deal with the lifelong process as I do I'm deep into my 4th year. I'm 65 and very disappointed how things have turned out for me but there are folks that have it in unspeakable ways and my thoughts are with them always believe me. This will be a good source for any new treatments the seasoned writers here have been inspirational to me I alway's read them. So good luck to you maybe it will leave you.

     

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    • Posted

      Oh Tim,, I am having one of my lets be miserable days, bare in mind I lost my partner 3 years ago to agressive brain cancer (we were together 15  years. so of course its 23.44 pm new years eve, my kids are all married  sorry two of them are married and a 30 year old daughter living in London and enjoying her life too. so im having a lets feel sorry for my self day...  I have a long term seperation from my marriage.  he lives with his partner of 25 years now, and yep Im wishing I was still with some one to love and hold me, but thats not  going to happen. so your  special message to me cheered me up,  but I do find it hard to smile  through the pain and the burning feeling that I get (because) my shingles left me with a very painful area around the bust line leading round to my back and yes  Shss  I cant wear a bra because of it.. and well lets say how can any one feel special or dressed when you cant get dressed and feel good about your body. So yes Im having a very low time  since Chas passed it seemed that since he died my arthritas, my two full replacement knee ops then shingles has continued to kick me down.  I dont know if you have a wonderful woman in your life, if you have she must be an angel, because yes I cry at night wishing I could be cuddled or even spoillt for 10 minues with a cup of coffee.  and just being treated as normal.  Im 62 in February; I am trying to continue to work but like you said  trying to cope in front of friends and people at school, PRETENDING you are ok, then diving into the loos  and crying then you open the door and pretend  all is ok for the next 3 hours. Go home and cry and dose up on meds.  I did try to help my self today/evening by putting some savolon cream in my painful and hot areas, but I think its just cooked the area even more resulting in my  crying becoming more intense.  so I think its back to icepacks  wrapped into a pillow case.  any way thank you  Tim  and every one  its now 0006 am New Year. 2016  I hope and pray that all of us one day will have peace and be able to live a better life with out  PHN  Jocelynex 
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  • Posted

    jocelyne44618

    Jocelyne. I had shingles 3 years ago on my left side, from my back around to my middle. Had the blisters but thankfully not the iching like many people, although very painful at the time, now I suffer PHN and the stabbing,. naws away at my abdomen as it did on New Years day and then thankfully its almost gone to-day, mine seems to go for afew days then fires up for a couple of days. I'm trying not to cry and let it get the better of me. Ofcourse that,s easier said as my pain is certainly not so bad as yours and many others, I can only sympathize and  hope for a cure for all.I have read if it does not go after afew weeks it may go after 5 years, and thats is what I am prayng for. I'm 71 and still working but going to retire this year. 

    I'm taking 1800mg gapapentin a day and trying to reduce the quantity. Just wonder should I be trying a different medication?.Did start with pregabalin and had the vaccination on my 70th. birthday.

    Jon .

     

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    • Posted

      Hi John, how are you keeping.  well my up date  its 0219 on 28.1/2013 why am I up still ..yep  the pain now woke mde up and it was a choice to down some more pain killers or try and take my mind off the pain... I some times find that if my mind is on some thing it helps to lower the pain burning feeling.. well I have been given a month off from  school because Im having so much discomfort from the stabbing pain and burning feeling.  Much to the anger of the school.  so now they want me to attend a meeting  (I think they are going to fire me)  funny  I think may be its time for me to hang up my books and call it a day   but im scared of two things how can I live on state pension on my own and still have all the bills to pay... Im worried that if this pain never leaves me how can I get better (I know im feeling  sorry for my self)  but im scared to admit its time  John how did you feel about stopping work?  how did you cope ?  im so worried but i know all this worry  makes me feel more worked up and then the pain hits me...  We all need help, has any one tried  acupuncture  will it work on pain???

      rolleyes

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  • Posted

    I have suffered from Postherpetic Neuralgia for twelve months and I have found great relief from the intense pain. My topical mixture works very well to relieve the pain and reduce the need for analgesics. The mixture is 250 grams of Invite Vitamin E cream, two five gram tubes of Acyclovir, and 65grams of Dencorub Heat Gel. Mix thoroughly and apply sparingly to the scar area and nearby, as required. This mixture gives immediate relief from the pain, and reduces the need for analgesics dramatically. One Evening Primrose capsule daily is also in reducing the pain as it desensitises the nerves. I hope you find this treatment as effective as I have. Best of luck with your problem.
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    • Posted

      Hi Living in the uk, I dont know if I can get  the mixture/ ingrediants  what is acyclovir

       You state  evening primrose taken daily helps desensitises the nerve   How please?  Im willing to try  ideas that work for you  a try.

      Jocelyne

       

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  • Posted

    The ingredients may come in a different form in the UK.

    Invite Vitamin E cream has glycerol 50mg, and does not form a skin as other creams do. Acyclovir (or Aciclovir) is a Cold Sore cream for treating a related virus and shingles. Dencorub Heat Gel has 26percent methyl salicylate & 7 percent menthol, which is higher than most heat creams. Evening Primrose oil reduces nerve sensitivity, but it is not a drug, and does not reduce mental ability. A wonder cure for hayfever sinusitis and PMT, and useful as an additive to analgesics for other nerve pains. I hope this treatment serves you as well as it has for me.

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