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I have had PHN for five months and am barely coping. What else can I do?

Posted , 18 users are following.

donald29
donald29

I have had PHN for five months.  I have stopped hoping that the pain will somehow go off and I am trying to face up to the prospect that is may be years before it does, and that I may have it for the rest of my life.  I dread the start of every day when I wake feeling comfortable in bed but after a few minutes the agonising pain starts up and I don't know whether to try to get up and about which is like having a demon with a pitchfork stabbing me and making it impossible to think.  If I get a phone call that I have to answer I can't be sure I am answering sensibly.  I take Naproxen with Omeprazole and Lyrica (pregabalen) three times a day, and Versatis (Ludocaine) patches applied either in the evening and taken off late morning, or in the morning and taken off at night.  The only things that really work, I am sure, are the Naproxen and the Ludocaine, but the best I can get from all these is a period of calm in the afternoon and early evening, and then I feel exhausted and sleepy, so the amount of the day when I am functioning properly is just two or three hours.  I work from home so I must somehow do better than this. I have been prescribed first an anti-depressant (amytriptiline) which simply knocked me out so that I slept in a drugged haze, and an anti-convulsant (Mirtazapine) which was similar in effect.  My GP says that he wouldn't want to try opiates (I agree!) and that maybe I should go to a pain clinic.  I thought this might involve having nerve-numbing injections, but apparently it is likely to be just talking about how to live with the pain.Another problem is that eating comforting warm and sweet food seems to bring a bit of relief.  My weight has gone up by 20 lbs in three months and I find that hard to control.

I feel I ought to be able to cope somehow by structuring my day but I can't make that work.  If anyone had similiar problems and has found better ways to cope than I have, please tell me!! Whatever I do leaves me too little time between agonisingpain and exhaustion and sleepiness

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61 Replies

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  • croft4Penny
    croft4Penny donald29

    Posted

    My wife has cut all my shirts to make an "Ava Gardner neckline".
  • andylancross
    andylancross donald29

    Posted

    I am very sympathetic to all of you that are suffering from this diabolical disease. I myself have lots of health issues, fortunately not related to PHN but my husband has had shingles 5 times in 18 months and each time it has left him worse with the PHN. He was sent to the Neurological hospital in London and the consultant said his pain wasnothing to do with the nervous system.

    He had the shingles on his left buttock and has suffered from severe pain ever since his first bout, boxing day 2013. He seemed to be getting better and when he had a shoulder operation in April 2014 it set the PHN off again.

    He has not been able to sit down for more than half an hour since then. He was sent for an MRI which showed he has degenerative disc disease (like I have) and since then the consultants seem to be trying to treat that instead of the PHN.

    He has been on gabapentin, tramadol, amatryptaline, oramorph and fentynol patches none of them help. He uses my massage matress and a tens machine to try and relieve the pain but as soon as he stops it the pain is back.

    He went to pain management and they decided to give him some injections in his back, 8 of them, and now the GP says that they didn't put them in the right place anyway. We are waiting for a second opinion and due to see pain management at the Chelsea and Westminster hospital.

    I will tell him about this site and all the suggestions. He has now been medically retired at 52 and can't see an end to this, which makes him very low (he doesn't do depression) and as he keeps saying he was meant to be looking after me, I say we look after each other.

    Hope you all find a solution to help, if we do we will let you know here.

    • croft4Penny
      croft4Penny andylancross

      Posted

      It is so tough. I find that I must take 600g gabaentin every 3 hours to keepthe pain reasonabe. Best of luck!
  • kimberly36176
    kimberly36176 donald29

    Posted

    I am going on 3 months with it on my left side of my ribs. It is extremely painful when having to wear a bra because that is the line it follows. I feel like I'm getting stabbed in my back. I am working with my doctor right now to try the Capsaicin patch. The cream does give relief but only short term and can't do all day because of the burning it causes. They are saying this patch can give up to 3 months of relief and it is covered by my insurance. Now the down side is getting the damn things. Hopefully this will help in having some information. I will keep you posted, once I can finally have it applied, on the efficacy of it.

    Emis Moderator comment: I have removed the link/other details as it was to a site unsuitable for inclusion in the forums and USA specific. If users want this information please use the Private Message service to request the details.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • john09650
    john09650 donald29

    Posted

    Hi donald29

    Sorry to hear you have the pain so bad. I really do not know what to suggest, I had shingles 3 years ago and now suffer PHN. I did go to the pain clinic & it was good to talk to another doctor and get his opinion. A Dr. did say to me, " learn to live with the pain" easier said when you don't suffer it. I'm on 1800mg gabapentin a day and get some relief. It's the intermitting stabing on my left side and the ache arcoss my abdomen that comes and goes from day to day. I am in the process logging the pain 3 times daily at 3 levels low, medium & high.to monttor it as I reduce the tablets slowly over a period of time, till I get them down to an acceptable level. Really desperate to get off the tablets. I have been told it may disapear after 5 years, and I'm banking on it  Whilst I have tried the patches without any effect, but I'm 71 and going to retire this year and see if the sun will work it's magic has any one tried the warmer weather on holiday. I.m sorry I can't be of much help to you. Just keep believing have faith. 

  • deblalnza
    deblalnza donald29

    Posted

    Omeprazole causes muscle pain, because it depletes magnesium in the body, i had to quit taking it. Make sure you take Magnesium (super absorbent) to replace this in your body, you'll notice a big difference in just a few days of taking it.
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