Accepting the inevitable - this is just not going to end. Time to just deal.

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I won't bore anyone with the long list of meds I've tried since 2012.  You all know this list and know that we feel like guinea pigs and pharmacists at the same time.  Found some that might help with pain control, but change who you are mentally. DONE.  Found some that produce ridiculous side effects, or scary scary thoughts and dreams. DONE (after dealing with weeks of withdrawal)   Found some that I've turned out to be allergic to - like lidocaine! - that is an ingredient in many others that are now on the skip list. SO DONE WITH THOSE! 

But then, YAY! Found that opioids are the best for pain control BUT ONLY when used in extreme moderation.  YAY! Found that long, warm Epsom salt baths really do calm down firing nerve pain!!  YAY! Found that topical applications of Tiger Balm Red, Pure Geranium Oil (mixed with a hand cream), BioFreeze, and SalonPas ALL offer relief from the "sunburn" like pain. YAY!  Found that a heating pad does ease the deep aching pain or the frustrating "restless leg syndrome"-like vibrating pain in my upper leg (where the shingles first started working their way up). YAY!  Since I can't regularly exercise (as many of you understand), I found that beginner Yoga and casual walks are tolerable.  Even though I gained a lot of weight over these years, I'm going to keep trying to eat healthy and do my limited exercise to the best of my ability.

My current doctor is a blessing who listens to me carefully and documented the above list of what does/does not work.  I am presently on Amitriptyline before bed and have a bottle of Hydrocodone that I try to limit to once a day - twice if nothing else works first.  The doc just tried a monthly changing series of medical grade vitamins and supplements for  "Immune Up-Regulation" and a month of strong anti-viral supplements.  We've been at this for 5 months, at a cost of $100+ per month, plus an additional $200 for the anti-viral series.  There have been a few "off days" of pain that would give me hope that it's working, but then right back to it again.  I had a whopping stretch of 4 days "off" when the anti-viral series was finished and I had real hope there.  But again, it returned.  Honestly, I'm tired of spending so much of our hard-earned money on just myself, on treatments that are so costly but produced nothing.  My very supportive husband encouraged me to try this round of supplements, just in case.  But even though there's still 3 months left in the series, I think I'm going to throw out the white flag and say I'm just done. 

Other than surgical procedures, I believe I've tried almost everything out there and spent countless thousands of dollars.  I highly suspect that the shingles virus left scar tissue on my nerves and this is what's sending wrong messages to the brain in the form of worthless pain.  I didn't know I had shingles til I finally went to the doctor 2 weeks after this crazy spreading rash started - so anti-virals wouldn't help anymore.   My current doctor suggests I avoid any surgical intervention because of scar tissue, especially for this PHN, as it may only make it worse!  I can't even imagine this getting worse, but I'm taking her opinion to heart.  So with all that, I'm just going to stay put where I am.  Amitriptyline and Hydrocodone (as needed), plus the topical applications and plenty of Epsom baths and hot pads. I'm open to reading new things on the market, but not going to be hopeful and definitely not feeling like being a guinea pig anymore. 

Wish I could offer hope to others in my situation that this eventually ends, but after almost 6 years now, I'm thinking not.  My best suggestion is to not let this condition define who you are.  Deal with the pain the best way you can and please don't be a burden to your loved ones by complaining and telling them every detail of what you're feeling daily.  Trust me - they know just be seeing you and hearing it in your voice.  Stay positive, active when possible, and get out in the world again.  Yes there's limitations to what we can do, but it doesn't have to depress or destroy us.  Hope this encourages someone. 

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  • Posted

    Hi. I am still in the trying to accept that my PHN is here to stay place.Atypical presentation. Started in Dec 2015, finally diagnosed in April 2016. I have also tried multiple meds, prescription compounds, lidocaine patches. I know that there must be a continuum along the PHN pain experience. I too have found that opiods provide the most relief. Still on 400 mgs of Lyrica daily. And I realize we are in the “opiod crisis “See Politico and The National Pain Report for info re how the statistics are being distorted re this “crisis”. Meanwhile very little funding in the US for pain relief research.

    I cannot do things I used to do. But try to console myself with the things I can still do. Well most of the time. Just took the dog for a walk and I am now in pain. But try to keep moving.

    This may not sound encouraging but there we are not alone. One day at a time. 

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    • Posted

      Hi Jeaneen - I'm sorry you're in this boat too.  Not a fun place.  

      Just a thought, that sometimes works for me, when you are ready to take a walk with your dog, apply a topical spray or cream that produces a cooling or heating effect (like the BioFreeze, SalonPas, or TigerBalm Red).  That different sensation seems to temporarily work by confusing the nerves so they don't send the pain signals.  It works for the allodynia and sunburn like pain pretty quickly, and "sometimes" even the knife pain during a walk.  Pre-confuse the nerves and get your exercise in!  If nothing else, try just some gentle, holding stretches of all muscle groups, even in your pain area.  Beginner yoga is great for that.  There's an app you can download - Daily Yoga - that has been a great tool for me.  

      PS  If you're on Lyrica and still taking opioids for pain, then the Lyrica is not working well for you.  Inform your doc of that.  I tried Lyrica twice, but my insurance wouldn't cover it any longer.  Plus it produced a series of side effects for me.  The withdrawal from it was dreadful.  

      Hang in there and stay positive!  This condition shouldn't define who you are now.  Do what you enjoy and what you can, always ready to temporarily bow out quietly when you need to.

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    • Posted

      Thanks so much for your thoughtful reply. So grateful to have found this site. Sure helps to ease the sense of isolation I feel at times. Will try one of the creams or spray you suggest. I have 2 prescription compounds. Neither seem to help. Also have lidocaine patches  which feel cool when first applied to my most painful area. Don’t help that much. Also use Aspercreme some days.

      We are heading out for a few days tomorrow and I will get to see my two sons and 3 of my grandkids. Don’t really want to travel 4 1/2 hrs but am going to go. I know I will be glad.🌞

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  • Posted

    Thank you for that well-written, heart-felt post.  I didn't try all those meds and treatments in the 18 months I've been dealing with it, but I could relate. I heartily concur with your doctor. People get desperate and want to try anything, but using any kind of invasive procedure has risks and in most of the cases it doesn't work for PHN.

    I love your suggestion about "confusing" the nerves and being preemptive, that sounds like a good plan. I uses Aspercreme with 4% Lidocaine, Gab (which I'm tapering, down to 100 mg) Extra Strength Tylenol and my previously prescribed NSAID. I'm seeing improvement, VERY slowly, but I have to keep reminding myself of this.

    I think I came to terms a little faster than others, but as I was seeing some very, very slight progress, it gave me hope. Also, check out PHN and depression. There's very good info on their from Charlie which helped me a lot. Learning to accept this while still working towards healing seems to be an oxymoron, but I think it's the best way to keep us sane and enjoy life more. It's easy for me to say NOW as I'm having a really good stretch. But the previous month, I couldn't see that at all.

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