Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

faust73 | @faust73 | Dec 27, 2021

In reply to @twobrooklyn "If it’s legal i your state give it a try, some people get decent relief," + (show)

It's legal in NJ just don't know where to begin since I'm not sure where to go or how much to take seeing I'm on a lot of medication.

dianecostella | @dianecostella | Dec 27, 2021

Hi my name is Diane and I have autonomic small fiber neuropathy. I started having motility issues since 2014. I was recently diagnosed with mild esophageal dysmotility. Has anyone else ever been diagnosed with this and if so what was the treatment.

John, Volunteer Mentor | @johnbishop | Dec 27, 2021

In reply to @dianecostella "Hi my name is Diane and I have autonomic small fiber neuropathy. I started having motility..." + (show)

Hello @dianecostella, There is another discussion you might find helpful that includes esophageal dysmotility as one of the pieces of CREST Syndrome - https://connect.mayoclinic.org/discussion/crest-syndrome/. @jimhd may also be able to share some information or suggestions with you.

Until others are able to respond to your question, here is some information I found that might be helpful.
"What is the treatment for esophageal dysmotility? Achalasia may be treated with drugs that relax smooth muscle and prevent spasm, such as isosorbide dinitrate or nifedipine. Pneumatic dilation is a procedure that dilates the LES with a high-pressure balloon." --- FAQs about Swallowing Disorders | Johns Hopkins: https://www.hopkinsmedicine.org/gastroenterology_hepatology/diseases_conditions/faqs/swallowing_disorders.html

pacer3702 | @pacer3702 | Dec 27, 2021

In reply to @faust73 "Morning Chris I never had neuropathy before until I got my Pfizer COVID shots but getting..." + (show)

I had a similar experience with the Pfizer vaccine. I won't be getting the booster. My blood work indicates an immune-mediated peripheral neuropathy. The good news is that the symptoms improved substantially about 9 months after the last vaccine. There is a Facebook group for vaccine-injured people called Neuro V Long-Haulers. Everyone there reports about a 9 month timeline for substantial improvement of the peripheral neuropathy symptoms. You could receive advice and support by joining that group. I suggest asking the neurologist to check your autoimmune antibody titer and also your alpha-2-globulin levels. (These are not routinely measured.) My titer increased but then increased again substantially about 8 months after the vaccine. I discovered in the earlier months, that I could control the pain by avoiding sitting completely. Apparently, my sciatic nerve and/or spinal chord was inflamed. My tolerance for sitting is now much improved.

kwfinnie | @kwfinnie | Dec 27, 2021

In reply to @centre "I can’t recommend enough to call around until you find a PT practice that does computerized..." + (show)

@centre

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!!!

Jump to this post

Good information. In what state did you find your specialized PT?

centre | @centre | Dec 27, 2021

In reply to @kwfinnie "Good information. In what state did you find your specialized PT?" + (show)

PA, but I think if you call a large practice or a Rehab Hospital, if the person who answers the phone has no idea what you’re talking about, then ask to speak to the PT director or leave a message for that person to call you back or do they have a work e-Mail address you can write to? The director will know exactly what you’re looking for and either they have it or they’ll know a practice that does. Can you tell I got waylaid at the receptionist level? 😂 But we neuropathy folks are good at perseverance, aren’t we?!

pogo | @pogo | Dec 27, 2021

In reply to @faust73 "Morning I have Neuropathy in both my legs and feet. Tried multiple medications and even massage..." + (show)

Cut out sugar in all forms ( including bread,) use almond flour. No diet drinks. I did a strict diet plus red light therapy. One can get a good light at sgrow they are on Amazon. I use a lot of natural supplements. Try Mega Benfototiamine & Optimized Carnatine the first is a form of B-1 but can penetrate.bllod/ brain barrier the latter is a amino acid. If you are interested private msg me I will be glad to tell.you where I get mine from and why

gladrag | @gladrag | Dec 27, 2021

Hello I've had neuropathy in my ' and legs For will more than 10 years. But about 2 months ago, Tingling and a sensation of numbers started in my hands. My MRI shows Degenerative disk disease and osteoarthritis from lumbar to cervical. This sensation in my hands has become unbearable and cruel. Pain is horrible, especially at night. There is nerve impingement at C6-7. My left hand is awful but now it has begun in my right. Pain management did a cervical epidural at that location a out two weeks ago. The pain has only grown worse. What do I do? To make matters worse, I'm a painter. Please help. I am in CT. I can't put the degree of pain into words. Please excuse errors as I have dictated this. I am 75.

John, Volunteer Mentor | @johnbishop | Dec 28, 2021

In reply to @gladrag "Hello I've had neuropathy in my ' and legs For will more than 10 years. But..." + (show)

Hello @gladrag, Welcome to Connect. I know it's difficult when the pain keeps getting worse and you haven't found anything that helps. I also have degenerative disc disease and osteopenia but so far my pain is mostly limited to my lower back and it's more of an ache. I also have idiopathic small fiber peripheral neuropathy with just numbness in the feet and some in the legs. I shared my story and what helps me along with other members in the following discussion.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

You mentioned you are seeing a Pain management doctor and had a cervical epidural about two week ago. Have you told the doctor the treatment hasn't worked and the pain is worse?

Jim, Volunteer Mentor | @jimhd | Dec 28, 2021

In reply to @dianecostella "Hi my name is Diane and I have autonomic small fiber neuropathy. I started having motility..." + (show)

Hello, @dianecostella I've had esophogeal dysmotility for several years. (I also have mild autonomic neuropathy, but severe idiopathic axonal demylenating small fiber polyneuropathy - quite a mouthful.) I had a few appointments with a speech therapist, who gave me some exercises and a list of helpful hints about swallowing safely. It can be pretty annoying, and sometimes even scary. I'd recommend a visit with a speech therapist as a first step. Don't be put off by the title, "speech therapist". She was a good specialist who explained things well, referred me for a few swallowing tests, and provided resources. Some days I don't even think about it, but I guess that some of the things she taught me have become automatic. I take smaller bites, chew very well, avoid foods that are problematic, and wait until I've swallowed food completely before taking another bite. It used to help get food all the way through the lower esophogeal sphincter if I chased it with a sip of liquid, but now liquids can be as risky as solids. I drink small sips, first taking a breath, sip, hold it in my mouth, tuck my chin, then swallow. More often than not, if I forget to tuck my chin, especially when I'm drinking the last of the liquid, I start to aspirate, and that sets off a coughing spree. Fortunately, I've never actually blocked my airway, but I know it happens.

Can you ask your doctor to refer you to a speech therapist? I'd be interested to know of any coping strategies you've tried. Isn't it frustrating to see our bodies misbehaving? If you want me to say more, be sure to put my name, with the @, in the text of your message - @jimhd.

Jim