19 months and still struggling

Posted , 8 users are following.

hi all ,I've had this dreaded PHN for 19 months ,I take 8 pain killers a day prescribed by my oncoligests,my sleep patten is terrible,I'm in pain 24/7 feels like I'm being clamped in a vice,the pain is around my torso front and back mainly the right side ,it even hurts when I walk,there just seems no escape from it ,I've not got depression,and just soldier on with it,I'm pretty certain it's getting worse,I've also got myeloma ,which is in remission,that's when I got shingles after chemotherapy,I wear two hearing aids,and I've got glaucoma,of the right eye ,apart from all that I'm brand new,lol,,I'm a young 62 male ,married for 44 yrs ,going back to this PHN it hurts to touch,it's worse when it's cold

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11 Replies

  • Posted

    I’ve got you beat. I have had the dreaded problem for the past four plus years. I have MS too. I went from a happy guy in his early forties,  to a grimacing lunatic, whats wrong with Grandpa? Yes, I feel for you. You are the only one thats on here that has had this problem around the waist. Yes,I have it on my left side. Lower torso. Runs from my naval to round to my spine. Feel like a barbed wire belt. Shirts bug me. Taking a shower is painful. Sex? Forget it! The MS has me limp like pudding. Yes, I know, it hurts. I hate it.  Feels like a hot iron on your back at times.

    The bad thing is MS is progressing now, the pain kick starts the relapses for me. You ever want to talk one on one I am here. How old are you? My shingles I believe happened from a med that lowered my immunity. Stress didn't help. That was four plus years ago. It becomes tolerable, you find what works to manage the pain. Lessens the pain until it wears off. Some people on here have it on their face and head! Yikes, that actually makes me feel fortunate.  I manage with Gabapentine. Lidocane cream and patches. 

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  • Posted

    Well Alan you've come to the right place. I've had it for a year and a half, on the right side of my head. It means headaches all the time, I'm on Gabapentin and Tegritol. Thinking of having the PRF ttreatment, Pulsed Radiofrequency. It's an electronic zap to the nerve. Doesn't destroy the nerve, just stuns it.

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  • Posted

    Hi  Alan

    Could I suggest a topical cream that should relieve much of the pain, and reduce your need for strong analgesics. PHN is a long term problem and analgesics have a long term adverse affect, so they should be avoided if possible.

    I have had PHN now for 30 months, and have not needed analgesics for 24 months. I apply a topical analgesic mixture twice daily, and find it adequate for pain relief.

    My mixture is as follows;

    250 grams of Invite Vitamin E Cream (contains 5 percent glycerine, and does not form a skin with continued use).

    Two 5 gram tubes of Acyclovir Cream (a cold sore cream that also treats the related shingles virus and prevents any recurrence or new outbreaks).

    65 grams of Dencorub Heat Gel (26 percent salicylate and 7 percent menthol ).

    Mix thoroughly, and apply sparingly to the affected area, as required for pain relief.

    I found this treatment very useful in reducing the initial need for analgesics, and now apply it twice daily, without the need for analgesics.

    Try this treatment if you need pain relief.

    Best regards


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    • Posted

      Alan, I had responded to you in an earlier post but had failed to mention how important an anti-inflammatory diet is.

      It is imperative that you avoid all processed foods! You can Google the food types that will trigger inflammation and increase your pain so those you will want to avoid. If you are able, light exercise and beginners yoga, focusing on deep breathing techniques, is of immense help in minimizing pain. Keep the faith🙏🏼

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  • Posted

    Alan, you're in good company, there are many of us on this forum that have been searching for help. I am in eight years now, around my waist as well, up left groin to right kidney. One small area on the right side of my torso is not affected. Everyone has their triggers and overtime you learn what to avoid. I have heard that it can improve although I have not been one of the fortunate ones as yet.

    I too am struggling with other health issues. I was stricken at the age of 58 and my life ceased. 67 years old now and still holding out hope, do not give up🙏🏼 Please keep us posted on your progress and any new or alternative treatments that seem to help you. I do recommend the Aspercreme/lidocaine gel's or creams. Icing also provides relief.

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  • Posted

    Hello Alan,  Sounds like You have a "plate full".  Sorry to hear of all the struggles at one time.  Your Oncologist probably knows best.....;however    I will share that after reading many others and who have PHN, pain killers just are not the answer for many.  We are all looking for answers; and each and every one of us is a bit different.  You may read some of the other posts ....Hope You find that to be helpful.  Topical RX sometimes can give relief.  It is also the same for me....cold makes the pain much worse for me.  With Your Myeloma, Your Oncologist would know best about an RX combo for a topical cream to apply....and if You could; and not the side effects of the pain killers.  Keep posting....and hope You get some relief.                                          Sincerely, Paula

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  • Posted

    Hi Alan

    Yes these items on my topical mixture are readily available from chemist outlets in Australia. I buy my items from a discount chemist, to keep the price down.

    Best regards Ray.

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  • Posted

    Hi Alan, I'm Paul

    Sorry your in that much pain as I was

    Between pain and sleep meds i'm on 7

    Just recently I;m sleeping better

    First thing is to calm down take a yoga class, meditation,

    talk to someone.

    Eat a diet so the inflamtion  in your body will be lowered will be lowered, if your over weight try and lose some ( yes I know it's hard).

    Have your dr try different meds.

    God Bless you



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  • Posted

    Hello Alan & members, I share your frustration with PHN around the torso. In Oct 2013 I had shingles on my left side from my spine near my 2 nd bottom rib in a wide band around to the the middle of my stomach. Then in July 2014 I had a mirror image, severe shingles outbreak on my right side. Subsequently the PHN can flare right across my back but often affects the left side of my stomach and the right side of my back. Although I didn't have a rash low on the right side of my back, when I'm stressed it seems to burn right in my hip bone.

    I do believe we can have shingles on the inside with no rash showing on the outside. I had a terrible experience for a while where I had severe burning pain that escalated if I drove up a steep mountain range near where I live. I was too afraid to fly in an airplane because the higher I went above sea level the more extreme the pain became. When I explained this to my Doctor he felt it was psychosomatic because he had never heard such a thing. I certainly did not think to myself "when I drive up this steep range I am going to scream in pain & nearly drive over the edge" Lol. It's such a cheap shot from Doctor's who accuse people with severe pain as causing this pain 'in their head'.

    As far as pain relief goes if you are not over medicating there is nothing wrong with taking strong pain relief as prescribed if it still helps you. Taking pain relief is an individual experience & having some respite from severe chronic pain is a good thing. I take a strong opiate because I can not take anti seizure meds like Lyrica or Gabapentin or NSAIDS.  The opiate does not make me high at all & it really bugs me when people assume it does. When I tried Lyrica I felt like I was drunk and couldn't walk a straight line. It also affected my vision making it impossible to drive whereas the opiate does not cause any change to my mental state (such as drowsiness) at all, other than lowering my pain level helping not fall into deep depression.

    Here in Australia topical lignocaine is too pricy for me but I found some relief using my horse's liniment called 'Rapigel', ha ha. Stay safe & sane.



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