Living with Neuropathy - Welcome to the group

Interesting, thanks for the additional information Henk @tys. I took statins for blood pressure for quite a few years when I was in my 40s then I did a Mayo Clinic heart study and they determined my high BP was caused by hypertension and changed my meds to Spironolactone (aldosterone receptor antagonists). I had always thought in the back of my mind that my idiopathic small fiber peripheral neuropathy was caused by statins and did a lot of research on them but it could just be a case of genetics and old age since I'm 77 🙂

The implications of statin induced peripheral neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103035/
Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy
http://care.diabetesjournals.org/content/28/8/2082.1
Statins Have Unexpected Effect on Pool of Powerful Brain Cells
https://www.urmc.rochester.edu/news/story/2051/statins-have-unexpected-effect-on-pool-of-powerful-brain-cells.aspx
Medication Induced Neuropathy
https://link.springer.com/article/10.1007/s11910-003-0043-8

John,
I am beyond grateful for the links you have posted re: statins/potential for toxicity. Darryl

Thanks Jim. I live in the Seattle area and am a Kaiser patient. Used to be Group Health Cooperative of Puget Sound. My family and myself have wanted me to go to Mayo for years. My daughter used to live in Rochester and has some connections w/ some doctors. Today I did a little research on Benzodiazapines and they do work for nerve pain. I have several types of neuropathy. I do believe I have autonomic by definition. So do you receive your care at Mayo? Any idea the cost to have a work-up w/ Neurology? I have a zillion specialists. I don't know what they'd do with me LOL! I tell my docs that I'm going to be their worst nightmare but not to worry,m they'll grow to love me! I have always been disturbed to my core about any suffereing. I mean I lose sleep. For way too many years to count. I know God has His purpose in everything and can see from beginning to end. I just have to pray, then give it to the Lord or it will eat me up. Many blessings, Sunny

Hello. I have neuropathy pn from head to toe. 67 yr. old female, myriad of diseases and conditions. Toxic meds. My pn is intractable and unrelenting. At times I am fighting for my sanity and literally crawling out of my skin! Burn, sting, cold. Sit with ice on knees where it can hurt more there but is everywhere. Hands in rolled up heat pad for Raynaud's disease. Tried Gabapentin, super sub-therapeutic dose (100mg. three times daily until 200mg. three times daily due to unwanted side-effects; felt detached, life surreal. Vision problems; double throughout the day and pattern in vision field. Discontinued it to try Lyrica. Worse side-effects so went back to Gabapentin. Less side-effects. Worked fair for pn at first but now, 2 weeks later after resuming, pn worsening daily. Still at subtherapeutic dose but afraid to take more due to side-effects. I'm a medical person/dective. Besides the severe sting/burn/numb, I can itch too but not feel the back scratcher due to numbness. Go figure. Fascinating! Even have same Sxs in girl parts. Have auto-immune Dz; mixed connective tissue. Most organs and 3 glands effected. Have Fibro, it's it's own nightmare. And other painful conditions. Am on morphine but not much. Have tapered down a lot on my own even though I don't have to. Tried authentic CBD. No relief. I'm fascinated by the degree of pn and how I get through it. It's by the grace of God. Faith. But wonder if anyone else literally crawls out of their skin and fights for their sanity due to the intensity of the pn. There are a lot of tears. My Dx is small peripheral neuropathy; everything outside the spinal cord nerves I guess. Anyone out there with my experience? Thank you!

Hi @sunnyflower Like you I am still learning how to use and navigate around in Connect. I ran across one of your posts earlier but did not see this one (in which you lay out your situation in detail) as I have not been monitoring this particular discussion. My wife has PN not myself, but I try to stay on top of internet info for her as she is computer/internet challenged bigtime. And she has limited bandwidth to do much but deal with her pain. She is 73 and neuropathy started in 2014 due to chemotherapy. She had an awful time with gabapentin with the weird side effects somewhat like you had. Other than that she has stringently avoided drugs for the pain. She has never believed in them, never trusted them to do any good (outside of marijuana). She keeps a fan blowing on her feet 24/7. She occasionally soaks her feet, sometimes in cold water and sometimes in water that is as hot as she can stand, which she says wears out the nerves enough that they stop firing long enough for her to get to sleep (sometimes). None of the other things she has tried has given her any meaningful relief, except marijuana as I said, which is still illegal in Tennessee where we are so she can't get the medical kind which she would prefer because she is not interested in the high (most of the time). The latest thing she is doing is something called Penetres which I posted about on another discussion (search the word penetrex if you are interested). She has been getting some relief from it. Not a ton, but some so far. What gets me about your story and other's also is first of all how many of you PN sufferers are out there, and also how non-stop this pain is. And there is nothing for anyone to do about it. How can so many millions of people be in this same boat and the only things doctors are giving to people for it are essentially useless? It's pathetic. Anyway, just wanted to throw my 2 cents your way to let you know I feel for you. No, I do not have the pain, but I feel like I am my wife's one good arm, I am that close to her, and with her every step of the way in this awful nightmare. And I feel her frustration and yours at this prison of pain you find yourselves in. Your faith which you mention is really the most important thing you can have aside from a cure. I believe there is a reason for everything in life and that God is the only being that is with you when no one else is. Amazing how much strength you can derive from that and I am glad both you and my wife have that to lean on. Take care, hoping for the best for you, my wife and all other PN sufferers.

Has she tried back stimulator! I had one installed 3 days! Medtronic. Have spinal stenosis with neuropathy in both feet! Basically house bound before! Cancer survivor! Stimulator was outpatient! I control most of pain with controller

I am 69! The. Spinal stimulator was installed 3 days ago! Did trial run for 3 days before permanent was put in back! Think about 80% reduction in pain! Can atleast go to stores! Two wires run up my spine and battery pack was put in butt cheek! I have had rods put in back, shots,drugs! Think it made it worse! Go to you tube! May work week or 10 years! Just 2 years worth be sweet! Am increasing my walking distance to loose about 50 lbs! Should help with stenosis and neuropathy! They have been around for several years!