Living with Neuropathy - Welcome to the group

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

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

Is that lambs wool or polyester? I have a faux fur throw my sister gave me for Christmas several years ago. I tried that but it was prickly.
My last line in previous comment was supposed to be “yours in pain and hope”. I am writing on my I paid too much for this Pad and sometimes when I touch the keys, it fails to register. Oops!

Polyester. Gabapentin is helping with my inner arms and underarms. I couldn't stand to have any clothing touching them. My feet, not so much, so the lambs wool is definitely a help. Sometimes I spray my feet with benzocaine.

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.

Hey, if I couldn’t laugh about some of this, I would be truly stark raving mad. Here is another thing I do to give myself some relief. I call it freezing my ass-ets. I found these large gel packs on Amazon. You can freeze them or microwave them according to your needs. I freeze mine, then wrap a towel around them and get them situated in the Cauda Equina area and sit on them until defrosted. I can feel the pain getting under control almost immediately. The Cauda Equina area is where all the nerve branch out into your legs and lower body areas so it makes sense to numb it. I rotate the two large pads so I always have one in the freezer. I feel like I have a lump shaped like a small baker potato 🥔 in my pants. It can be very painful. Icing it really helps. I have smaller gel packs that I can place on my legs as well. If you don’t have gel packs, use ice but be sure to double bag it. I have two of those ice bags and they both leak so if they are not doube bagged I end up with a wet butt and a wet bed. (I live in my bed.). As for a Gabapetin jones, I experienced some heebie jeebies towards the end of my being without. In addition to the outrageous nerve pain, there was some things going on that I have never experienced before. I Googled Gabapetin to see if it had withdrawals when abruptly stopped and yes it does. When I was dicking around with my doc’s replacement, I felt like a drug addict. I was begging for just enough to get me through the weekend. I don’t know where you live, but here in Washington state we have several associations that are geared to helping people with spinal cord injuries. There are lots of women who have fur coats just hanging in their closets that they are afraid to wear or have just put them in the closet area where things they don’t wear due to political correctness or outdated fashion that they just like to look at or think they might fit into some day. Try asking your churches, lodges, charitable organizations. Give somebody a tax write off. It’s for a good cause.
I don’t know why the medical profession keeps all these secrets to themselves. I feel like either I am the first person they have ever encountered with the symptoms I am having or I am a hypochondriac. For 3 1/2 years I complained to every medical professional I saw that I couldn’t urinate. I also had these episodes of waking up completely paralyzed. When I went to Urgent Care for the umpthteen time and said I couldn’t urinate, the doc said “You mean you can’t pee?” “ Yes, I can’t pee! I am sorry. I have been using the wrong medical terminology all this time. I can’t pee.” As far as the paralysis thing goes, everyone said how frightening that must be and so on. Nobody volunteered any information about it. I googled the potato thing and pee problem. It pointed to spinal chord injuries and possible Cauda Equina Syndrome. I had yet to get a MRI of my lower back. I googled “Why do I wake up paralyzed?” and was directed to youtube videos on Sleep Paralysis which happens when you wake up before your brain has done its maintenance and the things it shuts down haven’t been plugged in yet. I changed insurance this year so I could use the UW medical center. With my HMO, I was denied surgery and told to prepare myself for paralysis. When I shared my ground breaking findings from my research, it was “Oh, yeah. Sleep Paralysis. Happens all the time.” As far as the Cauda Equina Syndrome goes, I am seeing the head of neurology on April 17th. I think my HMO wouldn’t look in to it as that condition calls for urgent emergency surgery and they were covering their ass-ets as if I do have CES, they are liable for a big law suit. With the Sleep Paralysis, when I asked why they weren’t forthcoming with their knowledge, I got a shoulder shrug which was better then the collective eye rolls when I first told of my experience.
Well, in addition to all of the above, I have bilateral carpal syndrome due to shattered stuff in my cervical spine area and holding up my I paid too much for this Pad and typing is hurting me. Stay brave. I heard that chronic pain suffers are going to be able to get those meds that were taken away when Jeff Sessions decided that nobody should have access to opioids. Stay strong. ❤️💐

Let me add that when I find information on YouTube, I also back it up with opinions from Mayo Clinic, John Hopkins, Harvard Medical school. There is a lot of great info on YouTube and some nonsense as well.

My name is Dan Powell. I live in the great state of North Carolina. I have had post op neuropathy since spinal surgery Nov. 12 2021, I was in rehab for 63 days, I have been home for almost 3 months now. I am continuing theopathy with home health care. I have made very little progress. I am in a wheel chair. I have it in both legs and feet. I will ad a photo later. looking forward to hearing from others. Dan Powell

Good afternoon @danpinc2022 First, let me welcome you to Connect. This is a forum where sharing is our form of therapy. We all share with each other and by doing that we help others learn about their issues and they help you. It seems like Nov. 2021 was not very long ago. I am sad about your post-op condition And I can truly empathize with the frustrations you are experiencing. Now don't run away, because I have things to share with you. I have had SFN small fiber neuropathy for about five years. And the reason........I have had 14 orthopedic surgeries including three spinal. My last one was cervical and was meant to help the neuropathy in my arms, wrists, and hands. It worked for a while and then the pain, numbness, and tingles came roaring back. So I understand what you mean by "very little progress."

Would you be able to share a little more about rehab? What kind of therapy did you have there? Have your clinicians given you any diagnostic findings? And finally, did you have a diagnostic skin biopsy?

There are quite a few treatments that may help you manage your neuropathy symptoms. There really is no cure as you may already know. Before we start with the options, I want to introduce you to two of my colleagues. @jenniferhunter and @johnbishop. Jennifer has been a Mayo spine patient and has a personal background that supports her extensive knowledge. John can help you with research for current helpful treatments.

And I will be here for you also. Looking forward to the photo.

May you be free of suffering and the causes of suffering.
Chris

Hi @danpinc2022, I would like to add my welcome to Connect along with @artscaping and other members. I can't begin to imagine how difficult spine surgery recovery and rehabilitation can be. I would think 3 months is still early in the recovery process but hopefully @jenniferhunter can share her thoughts on the recovery and rehab process. There is an older discussion from 2016 that has posts from 2021 that you might find helpful on spine surgery recovery -- Spinal Surgery: What should I expect?: https://connect.mayoclinic.org/discussion/what-to-expect/

You also might find the following discussion and websites helpful for learning more about neuropathy and available treatments.
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/