Living with Neuropathy - Welcome to the group

I googled and called the Walkasins company first (they’re in Eden Prairie, MN), asked for practices in PA where I could be evaluated for their use (there were only two places in the entire state). I made an appointment with the closest practice (2 hours away) and asked my PCP to FAX a referral to them for “PT Eval and Treat” ( gives the PT a lot of latitude to do whatever, insurance will cover the visits). Turned out the clinic was within my insurance network. The Walkasins people are very upfront that insurance does NOT cover the Walkasins product, and they are expensive, but I felt desperate- hoping they would help me.After the eval, when the Walkasins didn’t do anything for me, the PT referred me to another practice that did “Gait Analysis”. I asked my PCP to FAX an order for “Gait Analysis” to that clinic (insurance paid), once my special shoes were made, I returned twice for adjustments, insurance paid for those visits, too. I bought two pairs of new Brooks sneakers from Dick’s and paid the PT privately for adapting the shoes- $120/pair. The adaptions made such a difference, I wanted two pairs- one to keep in the closet for future use, one to wear. They’ve made such a difference in my walking that I wear them exclusively when out of the house.

Hi, J.Bishop: No Trigeminal Neuralgia, just chronic bronchitis.
Which have now, but on mend. This time had new symptom of
shortness of breath w/no fever. Using Albuterol Sulfate inhaler
as last resort. Last week almost went to emergency room, but
am managing (but w/lots of coughing). This stress sometimes triggers
neuropathy, but so far not. Today I have ordered naturopathic pills:
"Nerve Control 911"/Phytage Labs which controls MMP13 toxic
enzyme/inflammatory which maybe causes neuropathy. Hope it works, takes weeks after getting it to help. Will comment in future.
Another problem I'm reading here on website is neuropathy/side effects from Covid19 vaccinations. Only had 1 vac (J&Johnson)
with no side effects fortunately. Before recent bronchitis, I intended to get booster, but now reconsidering. Any opinion on boosters?
I am very careful, wearing mask everywhere--not eating out.
Buying groceries online and picking up. J.A.Bax

Hi @jabax, I really didn't want to take any chances with my conditions PMR, small fiber PN and a few others. I had both the Pfizer vaccines as well as the booster. I actually got the Pfizer booster and my high dose flu vaccine at the same time but different arms. The only side effect I had was a sore arm. Here's a podcast by Dr Gregory Poland that provides some information that hopefully addresses any questions or concerns you might have.

Mayo Clinic Q&A podcast: Breaking down the booster terminology for COVID-19 vaccines: https://www.youtube.com/watch?v=ti3_0LMy5PA

I have been tapering off Pregagablin (Lyrica) and had a severe and frightening experience.
I have cervical osteoarthritis and Lyrica was not helping the nerve pain . I cut down from 150mg to 100mg .
One morning my entire left side started twitching involutarily, I literally could not move to call a taxi for over an hour.
I don't scare easily, but it was terrifying.

My heart was burning and painful.
When i got to hospital finally, they could find nothing in tests.
I knew it was the Lyrica tapering as i have read of so many other people who have had similar experiences when cutting down.
One friend thought he was having a stroke and heart attacks.
Has anyone here had a similar experience?

@wizzywinkles3
I took Lyrica, I believe in the mid 2000’s. I was taking it primarily for Focal seizures with hopes it would help my Neuropathy also but it didn’t help either. I had similar side effects but I wasn’t trying to get off it at that time. I wrote to the FDA regarding the symptoms. I had no problem coming off it.
I list Lyrica as a contraindication on my MedicAlert bracelet.
Jake

Received an email from the Foundation for Peripheral Neuropathy which listed a new eCatalog with links to webinars and different neuropathy topics/resources. Looks to be really good for finding different types of neuropathy related information.
https://www.foundationforpn.org/wp-content/uploads/2021/12/11.23.2021-Website-eCatalog.pdf

I’m interested in the shoes you had adapted. What was the adaption? I’ve had trouble wearing my tennis shoes. I’ve taken the insole/arch out to better accommodate my left foot but feel there must be a better way.

Hello @m1416, Welcome to Connect. While we wait for @centre to respond to your question, have you talked to a podiatrist to see if they might also have some suggestions?

I can’t recommend enough to call around until you find a PT practice that does computerized Gait Analysis. The PT puts what looks like a gel orthotic with an ankle attachment in each shoe and has you walk while they view what’s happening on the laptop screen. The graphs that come up in “real time” show where you are putting pressure on each part of the soles of your feet as you walk (now able to compare the affected and unaffected leg).
With me- I have (R) lower leg neuropathy with weakness, numbness and tingling. The graphs showed that I was getting very little “push-off”” from my toes and the ball of my foot as I stepped through each step. The PT made a metal rocker and embedded it in the shoe, so now I get a mechanical push off, rather than landing flat. The graphs also showed that I was tending to walk on the outer edge of my foot (my sole has very little feeling), so he added built-up to the inside of my shoe so my ankle is positioned in much better alignment, which has caused my knee to be in better alignment, which has led to markedly diminished knee pain from just being up and about. He did recommend I shorten my walk (used to do 3-4 miles/day) and keep it to around the block twice, paying attention to good form (with the affected leg- concentrating on exaggerated heel strike and active push-off, shortened step length). It’s made such a difference!!
The left shoe sole was built up so the shoes are the same height. You can’t tell they are adaptive shoes- the PT recommended lace-ups, I bought Brooks sneakers as they have a mesh top to accommodate comfortably the hammertoes I’m now getting on the affected foot due to the imbalance of muscle tone, due to the neuropathy (the gift that keeps on giving!). I bought two pairs at Dick’s Sporting Goods, so I could be sure to always have a pair to wear.
I understand John recommending a podiatrist but I would strongly vote for a PT practise for the computerized gait analysis- not just someone watching from behind as you walk, but actual data to address the specific problems that can be addressed with specific adaptions. If none of the PTs do the shoes themselves, they will know someone who does and will give them specific instructions, then have you return for PT follow-up to see if the adaptions need to be adjusted.
Good luck and don’t be discouraged if takes a lot of calls. I drove two hours each way four times to get these shoes and they have made an incredible difference in my life- I can enjoy walking again, my knee doesn’t hurt, I’m not being nudged off-balance, I could go on and on!!!

Thank you so much for the quick response and sharing what has really helped you @centre!