Increasingly Difficult to Accept Peripheral Neuropathy

Hi.......I had the same diagnosis, in my Neurologist saying my PN was idiopathic (inherited).
I asked her about possible Statin use being the culprit but she denied any correlation.
I felt very disheartened when she looked at me and said " I feel like you're asking me for a Magic Pill......well there isn't one and your condition can only get WORSE !! Boy, I guess she told me ! I left with my tail between my legs....some " bedside manner" .......😿

pdrago1955 - Unfortunately, sounds like you are right, your doc does not have good bedside manners. It doesn't matter if she is right or wrong in her diagnosis, to me, there is a right and wrong way of dealing with patients. I would like to see one of our mentors weigh in on this statin issue. I always appreciate their opinions.

@johnbishop you say that you cannot do the things you could do in your 50s? I am really struggling with balance and pain in my hands and feet. Would you mind if I ask you how long you had pn before you had trouble walking.

Hello @trudi22, I'm sorry to hear you are struggling with balance along with the pain in your hands and feet. I think my problems walking are related to my lower back and not really due to neuropathy although the neuropathy adds to it. I think had the beginnings of neuropathy with numbness in the toes in my early 40s. I was extremely overweight at the time and didn't really start taking my health seriously until my early sixties when I started working on my weight but struggled with it until the past few years. My wife once told me when I was in my mid 50s that I walked like an old man. I was diagnosed with idiopathic small fiber PN in 2016 when I was 73 which started my search for more answers and finding Connect.

Originally I was prescribed gabapentin for my neuropathy by my primary care doctor. I took it for about a week and it did nothing to help with the numbness so I stopped taking it. I met with my doctor and after a short discussion with her doctor team at Mayo, was told that gabapentin wouldn't help numbness. My primary setup an appointment with a neurologist who diagnosed me after a nerve conduction test and physical exam. He also told me that it would progress and there weren't any topicals/creams/meds that would help with the numbness. I started looking into supplements since the medical community had no solutions.

I started another discussion on what has helped me some here:
-- Have you tried the new Protocol 525 product for neuropathy relief?
https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

Most all of the supplements have quite a bit of research on their benefits for nerve health and are also listed on the Foundation for Peripheral Neuropathy's site here under supplements for neuropathy -- https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

You might also find these articles helpful:
-- Maintaining Balance: https://www.foundationforpn.org/maintaining-balance/
-- 6 Best Balance Exercises for Seniors to Improve Stability: https://www.silversneakers.com/blog/balance-exercises-seniors/

What helps me with walking more than anything is a good pair of comfortable shoes. I don't really like walking outside unless the weather is nice (fat chance in a Minnesota winter) but trekking poles make it safer and help with my balance. Hoping you can find something that eases the pain in your hands and feet.

Don't give up your search! My best advice is just taking each day one at a time and staying as active as you can while you search for something to provide some relief and help with your balance.

I'm hoping there are some new experiences in this group to help me. It's been 3 1/2 years with SFN. I'm told I'm a lucky since there is no pain. To the point ~ my outer and front ankle and outer lower leg get so tight that balance and walking is not safe. No driving and use a walker. I've been to every kind of doctor and had every test, etc. Lately I've been going to a chiropractor that gives me some short-term relief. He has said it is the perineal tendons that are affected. Anyone have something similar and what do you do to loosen up the ankle/leg? Thank you.

@retired123 - I'm wondering if Myofascial Release Therapy (MFR) might help. There is another discussion here on the topic:

-- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Do you keep the skin on the legs and feet hydrated with a good skin lotion? I've found that helpful for my legs and feet. My legs and feet always feel tight due to having to wear compression socks daily for my lymphedema in the legs.

You wrote that perineal tendons are affected. Perineal is the area near the anus. Is that what the chiropractor meant?

Haha. My error! The peroneal tendons that run down the outside of the leg. Never trust spell check!

I found it funny.

Well, I do find peripheral neuropathy to be a pain in the @$$, so she's kinda right. 😉