ANYTHING would be GREAT

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I am 38 and have had PHN for over 2 years now. It is on my left bra line side. Needless to say, wearing a bra is not my favorite thing to do. I literally have tried EVERYTHING that is out there, that I am aware of. In the first year did gabapentin, low dose anti depressant, pain pills, acupuncture, Capsacin patch, epidural and thoracic nerve blocks and by the end of the year had a spinal cord stimulator implanted. For a while that worked and started not to so last Feb did more nerve blocks, to then nerve ablation. has worked til about the past few months. I know stress is huge but now the only relief I can get is a few hours at night when I take pain pills. I refuse to take during day and just suffer. Some days are better than others. I am thinking about changing pain pills because I am now having to take more Hydro than I used to because of tolerance and just trying to find relief. Does ANYONE know of anything else that they have heard of or another medication that might work? I live in the US. It is really starting to effect me mentally and just trying to breathe through it because when you tell people, they have no clue what you mean and think you have shingles. Just looking for some insight.

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  • Posted

    Having worked in the medical field as a rehab psychologist specializing in chronic pain, I am usually a fan of medical interventions. However, with PHN I have seen poor results with most interventions. Docs admit they are poor at managing it. Not their fault, it is just a difficult syndrome to manage. 

    I’ve had it for 28 years now. It does get less severe with time, but very slowly. In the meantime you can use some low-cost less invasive methods that help. The key here is to change focus from getting rid of pain (because you can’t), to managing pain. I’ve never seen a PHN patient get good management with opiates, but have seen many add to their problems with opiate usage. I suggest avoiding them altogether. You’ve tried some other intensive and invasive treatments with partial or poor management. So, why not look for and find and consistently use low-invasive methods that also work partially but don’t damage you or cause more problems?  

    I find anti-inflammatory creams to be helpful. Started with Aspercreme years ago, but recently found that using an eczema cream works better. Triamcinolone acetonide. It is prescription. Very small amounts used just in areas of the highest level pain and itching work well for me. You may need to use more in the affected area you have, but it isn’t very expensive. I’m guessing your doc will jump at the idea of trying something that is non-invasive and non-addictive. 

    Some folks here have found lidocaine gels helpful. Lidocaine is an anesthetic. It works so-so for me, but we are all a bit different. 

    Please let me know if the eczema cream helps some, so I know whether others find it helpful. A week or two at two or three times per day might be an adequate trial. 

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    • Posted

      Hi Charlie, I read that there was research that laser light therapy was used to treat phn pain with positive results. However I have been unable to find any phn pain sufferers commenting about positive results with laser therapy. Being a long term sufferer of phn pain I was wondering if you can provide any helpful positive or negative info on laser therapy for phn pain. Any info you provide would be greatly appreciated.
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    • Posted

      Tony,

      I have not heard of laser light therapy for PHN, so I can’t give you any info on it. But, if you are having lots of trouble finding studies or reports about its use, that to me is a huge caution light. If something has a decent track record it is usually easy to find info on the net. If it’s then expensive, or dangerous/invasive, that’s more reason to be cautious and wait for more info. 

      Wish you the best no matter what way you go, Tony. 

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  • Posted

    Hi Kimberly,  I have had this on the right side of my bra line for over two years and cannot wear bras either.  I did buy a ta ta towel type bra over the Internet.  I wear it inside the house frequently.  It provides support by going around the back of your neck and lifting your breasts up.  It is comfortable and helps on sweaty days.  I wish there was an underwear garment similar to this that I could wear under my every day clothes.  When I go to bed at night I frequently use a heating pad for a few minutes, lifting my breast up and placing the heating pad under it and around to my back and spine area.   I also use aspacream (sp) with lidocaine 4% which helps a bit.  They sell it in a roll on container which makes it easier to apply on your back and around your underarm areas.  Sometimes a cold pack or ice pack has helped.  Evenings are worse pain wise as I get tired, then the pain increases.  I take Lyrica.  Although it makes me sleepy, it has controlled the pain better than gabepentin (sp.) did.  At this point, after 2 years I only need tylenolcodiene #4 two or three times a week in the evenings or when I go to bed and the pain is too much for me.  I am not dependent on it, but it does help me get through the terrible pain episodes.  You will be in my thoughts and prayers as I know what you are experiencing.  There will be days which are better than others which will help you get through this.  Susan
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  • Posted

    I have had shingles now for about five weeks or so!  I don’t have the rash anymore!  I thought at first it was mosquitoes bites!  I went to my doc and she said it was shingles!  I have stabbed pain, itching now!  Cold water helps
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    • Posted

      For itching, two things help me a lot. Aspercreme which is over the counter, and triamcinolone acetonide, which is prescription in US. Both are anti-inflammatory creams. The second is used for eczema. 
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  • Posted

    Hi Kimberly, I am 47, a very active person and normally healthy.  just saw a neurologist after four months of waiting for the appointment.  No good news.  Lots of different drugs you can try but sounds like there is NOTHING that works definitively for everyone.  Keep trying different drugs.  I am doing a combo of Lyrica and Nortriptyine now.  Nucynta is a much better opioid.  Ask for that.
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  • Posted

    I've had PHN for over 2 years as well - right side torso including bra line. I'm 47. I'm sorry to hear you continue to have so much pain. Acupuncture provided a break through for me in managing the pain, and allowed me to go off pain meds eventually. I found someone very knowledgeable and didn't get any needles on that side. It was interesting that in Chinese medicine shingles is viewed as many different diseases, depending on the pattern of the rash (I barely had one but felt like I was getting electric shocks for weeks) and other symptoms. I'd tried all sorts of things you listed before then.

    I still have significant pain (can't sleep on that side, lots of flares, etc. ) but am finding that the nerves are healing. It can be very hard mentally as well as physically to live with pain for so long. hang in there. 

    I've also been walking a lot and trying to do more core exercises. The exercises always stir up pain but I hope that at this point it is getting blood and oxygen to the area to continue the healing.

    Mentally I have a huge fear of getting it again. Has anyone researched the new vaccine. Should we be getting it?

    Hard to find solid evidence on recurrence and how this disease works. 

    Take care. 

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    • Posted

      To add one more thing that I think has helped: B12 injections. It was intense in my nerve area for awhile, but I think it has helped with the healing with a long view.
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