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19 months and still struggling

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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  • michael5678 alan53973

    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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  • ron96331 alan53973

    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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  • raymond24308 alan53973

    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

    Ray.

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  • sheila48912 alan53973

    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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  • paula20695 alan53973

    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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  • paulbklyn alan53973

    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

    Paul

     

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