Complications with Peripheral Neuropathy

Wow , Iamkj5, I had no idea a doctor would prescribe that much Gabapentin. I’m thinking that if I had to constantly take that much, and then have to keep increasing it from there to keep the peripheral neuropathy under control I would probably ask about the new technology out that is available. I’m happy for you that you are able to get relief in this way .

I use Frankincense essential oil before bedtime on my feet and legs. I also use compression socks specifically for neuropathy at all times under my regular socks at all times. Usually I will wear another pair of socks as well because my feet are always cold. I have orthotic sneakers outside for extra support for balance. I often will look at my feet when I walk so I can see that they're solidly on the ground because of the constant numbness and lack of sensation for added safety.

I am afraid after reading your journey with PN. I will see the neurologist tomorrow (I've waited 6 months for this appointment!). I don't expect much after reading a lot of different comments made by those of you who have had this longer than me. Mine began about 3 years ago when my feet and ankles were swollen. My primary sent me for ultrasounds to rule out blood clots and then never followed up with me. On my own, I saw a podiatrist who scared me so much that I never returned. She did some quick tests on the soles of my feet and said it was neuropathy. She didn't know what kind of neuropathy but did say that she could probably build me a brace later on for better walking. As said, it was my first time seeing her and I had to race home and google neuropathy as I didn't know what it was. Then about a year and half ago, I was diagnosed with diabetes 2 and then the loss of feeling started in the soles of my feet. As I was taking Lyrica for a different problem, I can't say that I experience pain but more like restless leg syndrome with pins and needles in my feet and ankles. After reading a lot of different PN posts here, it seems that most neurologists are not up to speed in either diagnosing PN or having any helpful info for it so I will go tomorrow but not have much hope that I will get any answers. I think since I began reading these PN posts, I have learned more about it and how different people are affected by it and are trying to cope with it. I will post again after my visit if any light at all is shed on this insidious condition. Thank you all.

PN and DM2 is not a good combination. Since you’ve had these gradual symptoms you may have been undiagnosed for DM2 for some time. If your blood sugar has been abnormal for a time it may have done a number on your nerves leading to PN. It is my understanding that PN due to DM takes a long time to develop.

I've been taking 3600mg a day for 3 or 4 years now, and all it does is dull the pain in my feet. My doctor won't prescribe a higher dose than that.

I am also a type two diabetic with pn . My feet are killing me. My foot swells and I have no feeling up to just above where your sockets would go. My toes feel like they are going to blow off it’s so bad. I also have rls even in the leg that’s was amputated. I’ve had injection at the pain clinic that haven’t helped. I went to a trial for my phantom pain they froze the nerve which is like burning it into that did help. For the neuropathy I went to Emory hospital. There they used a I v to administer something that sounds like katamine don’t know how to spell it, one nurse said it’s been used as a horse tranquilizer, she may have been joking. It knock you out and you just sleep for about eight hours. Some great sleep but it didn’t help at all. I’m about ready to give up and face the fact that I’ll have to live with this neuropathy and rls until I’m called home. I’m getting it in my arms and hands arms now. Hope you have better success getting help than I did. Spinal cord stimulator had it removed didn’t help. The between the neuropathy, rls, phantom pain. Nothing has helped. If you come up with something that works let everyone know. Good luck andd God Bless. Maybe with everyone seeing different Doctors maybe someone will find something that works. Hang in there.

Bless you, Jeff. Dealing with chronic pain is exhausting.

I've had PN for 12+years. By 2015 I was in severe chronic pain, and had a spinal cord stimulator implant in 2017. For a year the pain dropped from 9 to 3! It was wonderful! But each succeeding year, the stimulator became less effective, and by 2021, there was no noticeable benefit. I keep it on just in case it could be helping a little, and I'm afraid to have it removed because if they don't get all of the leads out, it means no MRI. Right now the battery is low and I couldn't put it in MRI mode for a brain scan, so I'm waiting for the doctor to decide to call me back and schedule that.

Gabapentin and Lyrica and all of the other PN meds didn't help. I read about Hizentra, and I finally got approved for it. It's a medication administered by subcutaneous injections that I can do on my own at home once a week. It's moved the pain from 8 to 3-4. I took Privagen IV for a few years, but it didn't really help. Last February I did a four week trial of Hizentra, and felt the effects after the 2nd infusion. But insurance wanted me to try Gamunex for 3 months, but it had no effect. So, they finally approved Hizentra.

At Christmas, 2023, I was prescribed Levofloxacin (same family as Cipro), and it degraded the tissue in my Achilles tendons and ruptured both of them. It's been a long, rough year, with surgery on the right side in June and the left in December. I say all of that because it's wreaked havoc on my feet, what with boots, splints, orthotic braces, casts, a wheelchair and a walker, etc. Now I'm enduring PT for the second time, causing a lot of pain. I'll be glad to get my life back and feel my feet and legs calm down. PN is so much fun all on its own, adding other factors to it makes it way more fun! Right! I'm just glad that I'm not diabetic, and I'm sorry for all of you who are. My father was and it made for a challenging life.

Jim