PHN Intercostal Neuralgia in my ribs 10 years

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Hello I hope I am posting correct this is my very first post here. I hate to see others suffering from this but I find so much comfort from finally seeing others understand. I have suffered from this for over ten years now. This is all through my intercostal nerves on my left side in my rib cage under my left breast goes under my arm pit and wraps around my back but the back area is just a dull ache. I have tried the meds in the world for nerve damage and the problem is a late very late diagnosis so well you know the story. I have a spinal cord stimulator put in last year that helps with the pain but it takes that plus pain meds to give me relief and my leads have came loose from the transmitter so right now I am awaiting surgery to have them replaced. I am on strong pain meds and I just don't know what seems to work the best as far as pain meds but I guess my question is does that depend on the person? ?? I was on Norco but we had to move to long acting pain meds and they are talking about the fentynal patch. I am sure I did not spell that right. I have not decided if that is a route I want to take or not. Thanks for any input you may have at all.

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  • Posted

    I feel for you and will commit you to my prayers. Certainly the question you've posted about your opiod medication should be asked at the physician's office. That being said I would be careful about using them of course. Yes, it depends on the person. I would think thier pain levels and perhaps addiction tendencies would be a factor. If you're on them now you're dependant so talk to your doctor about the longterm implications and what it takes to be weaned from them.

    I take Nuerontin for my nerve pain. It's non-narcotic and has really changed my quality of life. My nerve pain is a result of Post Herpetic Neurolgia. The same virus from chicken pox and shingles did me in. I too have suffered for a decade.

    I hope your surgery goes well. 

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    • Posted

      Thank you for the prayers they are much appreciated. I can assure you I always discuss my medications with my physician in detail I was only looking for comparison with fellow PHN suffering patients. Thank you for all the advice though.
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    • Posted

      Hi Lori

      Thanks for your comment, and hi to Lisa too. I have PHN on the right side of my head, it means headaches really all the time. I'm on Neurontin and was interested in what you say about it being non-narcotic, others have said it's an opoid. Like you I find it does do a lot of good and I don't know what I'd do without it. I'm aware though, of a dependency. How has this been for you?

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    • Posted

      Hi Ron. Sorry to hear about your pain and relentless headaches. Neurontin is non-narcotic. It's been around for a long time but previously had been used in the treatment of seizures. Then it was discovered to be helpful with nerve pain associated with diabetes. It is a Godsend for me.  Talk to your doctor to see what is right for you. Best wishes.
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  • Posted

    Hi there Lisa and welcome to the PHN support group.

    I was misdiagnosed with shingles on my left eyebrow, left side of forehead and scalp 16 months ago now. I have, like you, tried everything in the world, traditional and alternative medicine, all to no avail.

    I have continuous itch around my eyebrow and scalp, which is causing me great distress.

    I have traditionla Chinese acupuncture once a week which does help while the needles are in, but nothing longer than that.

    I have seen an neurologist who specialises in Botox for long tern pain which I am going ahead with on July 5 as that's the earliest appointment I could get, so will keep you posted.

    I can't offer any more input to you, but you're NOT alone. Catherine   

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    • Posted

      Thank you so much for that Catherine! I am so sorry you have to deal with all this. I have wondered about the Botox myself so please keep me posted. I sure hope you get some relief. I actually got my surgery date today it is June 29th..... I know most people say oh that is not that far away but they have no idea the level of pain we deal with. Thank you for the support with no judgement!!!
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  • Posted

    Your surgery is coming up quickly. I so hope all goes well. I do take norco along with the neurontin. It really helps but I suppose I do have anxiety taking a lot of medications. What can I do though? I have to have some quality of life.

    My PHN is in my genitles. It is relentless. When I was a young child I had chickenpox longer and worse than all my classmates. They were really bad in all the warm spots like armpits, in between my toes and fingers, my eyes, on my genitles and up into my vagina. Back then no one knew what I was ailing from. They told me to not wear nylon panties, no bubblebaths, no colored toilet paper (yes that was a thing lol) and how to clean myslef better after emptying my bladder. I mean with PHN there is nothing to see, no odor, no redness, no itching, no swelling or leisions.

    As an adult I got a bad case of the shingles on my left side which reignited the virus that had been dormant in my genitles.

    Besides the pain which is unbearable I have a difficult time getting dressed. Underpants, pantyhose, leggins, jeans, you name it hurts that area. I've tried cute dresses and skirts but honestly it's worse than pants. As women we can get hot down there and getting sticky with no panties...I digress. So my world is small, sometimes lonesome. It's hard to male plans and keep them.

    All in all I feel for you. This PHN is the worst. I am wishing the best for you

    ~ Lori 

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    • Posted

      Thank you I am sorry you have to deal with all this as I do. People really have no clue and to be honest the pain meds help but nothing takes away the pain at all it only takes off the edge. I will keep you in my prayers and hope you at least have some good days. That is all we can hope for right? Thanks for listening and the support.
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