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From 2005 to 2011; an update on my PHN experience

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Sandra_Wright
Sandra_Wright

On 27th July 2005 I published an article about my experience as a patient with post herpetic neuralgia. (You can find the original article on this site - I posted it when I was a guest). I contracted shingles in February 2001 and was subsequently diagnosed as having post herpetic neuralgia affecting the left hand side of my body.

So here I am again, in 2011, to post an update.

I am still in pain; it has never gone away or gotten any easier to bear. My condition is now classed as ‘chronic’. My medication currently consists of Pregabalin, Amitriptyline, Clonazepam and Versatis lidocaine patches.

I still have my TENS machine, although I rarely use it, the plasters are better. My doctor virtually stopped prescribing Zopiclone 3.75mg sleeping tablets for fear I might become addicted to them(?!?)

What has changed, a great deal, is my life.

I have lost my job as a senior local government officer. Not a very charismatic job you might think, but I enjoyed it. I was good at it. I was finished from work on ill health. My doctor put me on the sick when I went to him because I had completely lost control at work, shouting and ranting at a colleague (for no good reason, other than I was in such a lot of pain that I couldn’t help myself). I never went back to work after that. My doctor wouldn't let me.

I was 52 years old at the time and I felt like I was on the scrap heap. I was referred for psychiatric help; I think, perhaps, I did have suicidal thoughts at the time. I was referred to a psychotherapist. I was referred for injections of anti-inflammatories into my side. I was referred to a Pain Management Programme, which I attended for weekly sessions. I think I have gone through just about all there is to offer in the way of treatments and coping strategies.

I have recently changed to a new, more local, doctors’ surgery and my new doctors is taking a fresh look at me. He has upped the dosage on my Pregabalin to the max and I have to go back in a month to report on any improvements (although it has been a fortnight and it’s not looking good). I made mention of the new Capsaicin patches but the doctor wants to take it one treatment change at a time; which, I suppose, is fair enough. Yes, I still cruise the internet looking for any new developments in treatment.

I don’t really have a normal day/night pattern. I don’t have sleeping tablets very often, and I can’t relax enough to fall asleep normally, so I just have to wait till I ‘conk out’ through exhaustion which can be any time of the day or night.

I don’t talk much, anymore, about my illness. It’s old news. My friends and my partner (my rock) have heard it all before. I’m afraid of being one of those bores who goes on all the time about the same old story.

I still depend on medication to get me through the day. I still cry for hours when I am alone and the pain is too much to bear. I am still here. But I have (almost) stopped hoping now.

3 likes, 3 replies

3 Replies

  • Bleepme83
    Bleepme83

    Posted

    You are a brave person. I suffer silently. I figue better living through chemistry. This pain is mine. I own it. But. My meds work pretty good. Sleep is a luxury. My doctors though I was nuts. But. Finally got diagnosed properly. I take 4 pills a day and feel. Lucky. Long acting high dose. Rhyzolt and lyrica. And I get by. But oreally. Want a surgeon. To take out my nerves in my. T spine. Good look!"
  • patricia49047
    patricia49047 Sandra_Wright

    Posted

    Sorry you didn't have a better update! I'm still dealing with this after17 years, on the same meds. Just helps me deal with it. No real pain relief tho. Like you, I had to give up my teaching job after 27 years. People do not understand how bad this is or what we are going thru. My husband is supportive in every way he can be, but I feel like I overburden him at times. So, I try not to complain or talk about it much. Very hard to travel or do much of anything I used to do. I find myself more and more just wanting to stay in the house, it's easier. I function inside better anyway. Arthritis has developed in my ankles and knees. Very painful at times also. I suppose from all those years on my feet. But, we can't give up! Try to stay positive and remember it could be worse! Thanks for listening, I don't think I helped much! 
  • jim66082
    jim66082 Sandra_Wright

    Posted

    Sandra:

    So sorry - the impacts are devastating.  I too ended up on disability and then retired.  The impacts on family, friends and self esteem is enormous.  Also searched the internet for any possible treatment methods.  Have had everything and although some have helped with the deep pain, nothing helps with the surface pain except taking off clothing and lying relatively still in bed with no sheets or blankets touching the PHN area.  I have found this site recently and at least I know I am not alone in the impacts of the sufferring.  I also have read that this type of pain is the leading cause of suicide in the elderly that suffer from chronic pain and I can understand why and particularly in terms of the extent of nerve damage and where on the body that is.  All I can say is when one is despondent one knows there will be better hours to come but that is a day to day struggle.   take care jim

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