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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 12 hours ago | Replies (6014)

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@msmunro

Hi Everyone, As someone who suffers from nerve pain, I appreciate the frustration and hopelessness of all of you. Last week, my doctor went on vacation without my approval. I have just changed insurance from a HMO to PPO (?) so I could see him as he used to work for the latter, threw up his hands in disgust and went to work with the University of Washington. I needed some refills of Rx and his stand-in played phone tag with me all week and never ordered them. Essential was my gabapentin. This girl was on fire! I couldn’t stand the touch of materials to my skin. Everything felt like gravel and glass shards. I found a pair of pjs that had a silky texture and weave that wasn’t painful. In desperation, I took out a fur coat that I no longer dare to wear in public and laid that on my bed, fur up. Oh, heaven! The fur was excellent. It breathed, was actually soothing to my skin.
There are lots of furs available on the internet, used furs, that can be purchased for bupkus. It may seem like an expensive luxury, but I have spent thousands on sheets that are painful. Satin, you slide off. Bamboo, cotton, all the synthetic blends, even Egyptian cotton hurt. Get a full length in a large size, lay it on your bed and if cold pull the front of the coat over the top of your legs. I am 5’3” so this works for me. I am thinking that I may make the coat into a blanket. I know a furrier who does this.
I have asked my shrink if people go stark raving mad from neuropathy. It is so constant. It never lets up. The UW has a treatment called abulation that I would like to try. One uses water and cold, called Cool Leaf, the other fries the small nerves. Back to the old “Fire and ice”. Both alledge to shut down the nerves for months. The UW also uses botoxins for nerve blocks. I will keep you posted on any developments.
In the meantime, your in pain and hope, Mary Munro

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Replies to "Hi Everyone, As someone who suffers from nerve pain, I appreciate the frustration and hopelessness of..."

My pn had me in the same spot. Couldn't stand the touch of materials. Found that "Sherpa" blankets were the trick for me.

Thanks for giving me a Monday morning chuckle with your humor, it helps ease the pain of this frustrating thing we’re going through!! 😊
I hate thinking that Gabapentin is addictive, like an opioid, but my body almost always knows when it is time for my next dose, especially with the heat/cold intolerance part. In these parts, furs are hard to come by at the Goodwill Store, but I can seriously imagine how that would work in bed as you described (you should try to patent a concept for something like that for bed!)
I ran out of Gabapentin once, had to walk into an urgent care and pay for the appointment in order to get a prescription for s 30 day supply, all of which took painful time and more money, and of course my prescription plan balking and saying I wasn’t due for a refill. I take 3 a day, religiously, with permission to take 4 on a very bad day. That happens about 5 times a YEAR to take an extra Gabapentin. I have no doubt in my mind that the reason I ran out of Gabapentin before my prescription refill was due was because the mail order company had to have shorted me on the last shipment. When you get a 90 day supply, that’s supposed to be 270 pills in 6 different bottles, and I admit I did not count pills when I got prescriptions filled (I didn’t back then anyway). Despite me discovering 3 weeks in advance that I was somehow going to run out of Gabapentin earlier than due, and trying to align the prescription company and my doctor with the stars to get me a new prescription before I ran out, it didn’t happen, and boy was I in misery. The only other time I was in such misery was during a somewhat routine non-neuropathy related 2 day hospital stay where despite Gabapentin being on my medicine list, they decided it was ok to do without while there, as if it was a One-A-Day vitamin. (Easy lesson I learned there, make sure I know better what to provide on my own when I pack my overnight bag now)
Anyway, long story short, like you and most of us, we do know Gabapentin is the best a lot of us have in helping the pain from from heat/cold intolerance, and just overall nerve pain, tingling, and numbness. Since I occasionally (very rarely) would take 4 pills a day vs 3, my good doctor I had back then when I ran out wrote my next mail order for the quantity of 4x a day, and that prescription has been re-ordered by new doctors as well. I have so many bottles in inventory now I have to boldly label them to make sure they’re used in order and delay refilling if some are getting too close to expiration. I don’t want to have to throw any out, I honestly hate wasting meds. But I’d rather throw one away than ever running out of Gabapentin again, unless there’s a sure fire substitute over the counter we could have instead.