Living with Neuropathy - Welcome to the group

Good evening @alces, and @gmehl, what wonderful folks to land in our neuropathy group. Thanks for sharing your stories and your concerns about the forms of neuropathy that are interfering with driving, typing, and playing the piano. I have faced barriers to all of those activities head-on since my diagnosis of SFN (small fiber neuropathy) 10 years ago. My feet and hands pretty much stay numb, cold, and tingly all day, every day.

Giving up the piano was probably a blessing to those who had caught themselves listening to me. Giving up typing just can't happen so I tap away the best I can. Giving up driving just wasn't possible given my life situation at the present time. So, I decided to fight. A friend introduced me to MFR, myofascial release therapy. I now have two sessions a week with two therapists. One works on my hands and both work on my feet which are always very cold, very numb, tingly, and surprisingly painful.

I will share a few links with you and hope you have a chance to take a look at them to see if there is anything encouraging that you might consider. Here we go:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://www.youtube.com/watch?v=eW0lvOVKDxE&t=86s (cancel the ads up front)
http://www.myofascialrelease.com (John T Barnes trains expert-level therapists and can help you find a therapist near your residence.)

And finally, here are a couple more at-home exercises that can help that are part of my balance and stability routine. Walk on your tippy toes while you hold onto a counter...back and forth 8-10 times a day. Go forward and backward. Finally.....walk on your heels in the same manner.... backward and forward. These two exercises will help your feet be more flexible.

And here is my solution for pain. I use a 1:3 CBD/THC topical medical cannabis from Papa and Barkley for acute pain. You can find them at http://www.papaandbarkley.com. They also have a 3:1 CBD/THC option for chronic pain. If you can tell me what state you live in, I can review the laws and regulations in your area. This is a very helpful site if you want cannabis education.

Hopefully, something on these sites will be worth a try. Don't hesitate to let John and me know how you are doing. Just remember that we are here for you.

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

Thank you all for your help and suggestions. For me pain has so far not been an issue, and I don't really have any hope of reversing anything, so I have been concentrating on mechanical means to keep my foot on the pedal. I used a strap around the pedal and shoe, not a pretty solution for actually sort of works. Not easy to employ in a concert setting, however! I also thought that a shoe modification that put a slip at the toe for the pedal to go into might work. The statin issue is troubling, but when I was originally dealing with the neuropathy the doctors seemed to think that nothing was severe enough to be causing it (I am pre-diabetic and have some kidney issues, either of which could cause neuropathy, but statins were never mentioned, and I've been on Simvastatin for many years).

Hello Chris, thanks for the greeting! My symptoms began years ago, with pain in the side of one foot; I thought i had bad shoes! threw them away, and surprise, didn't help! Then progressed to tremendous pressure in R foot, like it was going to explode when walked on. Then a couple of years ago, suddenly took off like wildfire- up my ankle, up my leg, to my waist- numbness, electric tingling, burning, feels like feet made of WOOD! At same time, feels like rocks under my socks. So after a year of testing, finally definitively diagnosed by a specialized skin punch. I've been on LDN for about a year, and still having awful insomnia and disturbing dreams. Up to 3.5 mg now. The whothing is frightening. Idiopathic. Who's the idiot that can't figure this disease out? ?

My husband was just told he has "Distal Sensory Axonal Polyneuropathy", by his fourth neurologist this year. I'm not able to get a clear sense of what it is and how it will play out. Does anyone have info on it? A little back round, my husband is 72 and has been drinking a lot most of his life, otherwise he is fine. He has now stopped drinking after he had fallen several times starting in March. The first doctor said he had Parkinsons. Second doctor said he had "Chronic Inflammatory Demyelinating Polyneuropathy" or C.I.D.P. Third neurologist said he didn't know what my husband had other than poor nerve conduction. When I asked doctor number 4 if he had alcoholic myopathy, because he had a lot of those symptoms, the doctor said "No". I very confused.Thanks in advance for your help.

Hi @peggioh, idiopathic neuropathy is frustrating to say the least. Please note that I removed the PDF of your test results because it contain personal identifying information. Mayo Clinic Connect is a public forum. Before posting lab or clinical testing results, we recommend removing any identifying information to protect your privacy and security.

Ok, thanks. I'll be more mindful in future.

Neuropathy is a very confusing disease with hundreds of variations, effects, symptoms, treatment and not a whole lot known. Distal, I believe, is most common in conjunction with diabetes mellitus. Breaking it down, its affects both sides of the body (poly), distant from the center of the body (distal), impacting the ability for nerves to sense touch (sensory), and going first for the actual nerves a long way from the brain (axonal). CIPD, I'm told, is a) chronic, involving inflammation and deterioration of the protective sheath around the nerve (myelin). A battery of tests can help form an accurate diagnosis and treatment plan, perhaps from Doctors Two and Four. My suggestion would be to connect with them, bring all your questions, and clear the air of confusion. Good luck for getting clarity and a plan.

Good evening, and thank you so much for adding an important chapter to your story. I also appreciated the Skin Biopsy report. And I do see that Colleen has explained about protecting your identity.

That report is 95% longer than what I received. It looks like they have been able to add more to the test results. Mine was never shown to me. I just saw the diagnosis on my portal.

You certainly had a progressive unveiling of your idiopathic SFN. There is another category mentioned and it is "traumatic". If you have had multiple injuries and/or surgeries then the cause may be listed as "Traumatic". I have had 14 orthopedic surgeries including 3 spinal. And then there were quite a number of accidents including 2 rear-end collisions which can be damaging. Add to that falling down mountains and off of horses and I understand my SFN causes.

You have been suffering for at least two years. My symptoms have been very similar. I have had the fire in my abdomen, the 5 a.m. muscle alarm in my leg, and then the burning. Is LDN helping relieve your discomfort? Do you use any topicals?

You mentioned sleeping and dreaming issues. There are some "sleep helpers" like Nortriptyline. Have you tried any of those? My experience with dreams was frightening because they related directly to trauma in my life. They did taper off after a couple of years. Just make sure you work with your clinician so there won't be a conflict with LDN.

When is your next visit with your doctor?

May you be safe, free, and protected from inner and outer harm.
Chris

Hi Chris, I can't tell if the LDN is helping, but things are still getting worse, numbness etc now crawling up my left leg to match the right; however, if I wasn't on it, would it be worse still? In other words, I don't have a "control group" of another me! I haven't tried that Nortriptyline; I've been trying every natural aid under the sun; melatonin, valerian, L-Theonine, homeopathic (joke) so every few days I splurge on just an over the counter one, Unison. From what I understand chemical sleep aids cause rebound effects; do you use the Nor. regularly? I don't typically use topicals, since my primary problem is dead numbness, and static electricity up and down the legs, not outright pain. I have a gabapentin prescription, but haven't taken it, since that isn't going to give me back my feeling, which is the most devastating and troublesome to me. . Thanks for input! PS(By the way, I could give a hoot about protecting my privacy- what's someone going to do, steal my illness?? Go ahead, welcome to it!) haha, but I understand forums are legallybound to privacy.

Ans pps, I'm happy to hear your nightmares ebbed off, because I've been nervous that mine never will, since most people say after a couple of weeks theirs stop, but mine have been 1 1/2 years.