Posted , 3 users are following.
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.
1 like, 4 replies