Living with Neuropathy - Welcome to the group

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.

Profile picture for Chris, Alumni Mentor @artscaping

And I also want to add my positive support for Hoka. I have just tried them for three days of my walks. These creations are not heavy although their appearance may cause you to think that. The support from the wider and thicker sole material makes me feel safer, more grounded. The arch support is spot on for me. I had to try a few different ones to find these.

Chris

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Which style of Hokas did you get Chris? I also need the padding in serious arch support as I have pronation in my left foot which causes me to walk incorrectly on my right foot and I can’t find insert that work for me.

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Profile picture for bcool123 @bcool123

Which style of Hokas did you get Chris? I also need the padding in serious arch support as I have pronation in my left foot which causes me to walk incorrectly on my right foot and I can’t find insert that work for me.

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Hi there @bcool123 and I think It is time I welcomed you to Connect and the Neuropathy group. My Hoka walking running shoes are Women's Gaviota 3. I had the laces switched to the stretchy ones so I don't have the added risk of my shoes coming untied and then me tripping over the laces and falling.

I wore them again this morning. Just heavenly....I can walk much further without any pain or discomfort. They also have a 30 day guarantee at the store where I made my purchase. They want you to be happy. I also tried them on with the socks I normally wear just to make sure that the socks wouldn't be an irritant.

O.K. Let's go walking. Where are you? And what is the condition you working on?

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

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Profile picture for Chris, Alumni Mentor @artscaping

Hi there @bcool123 and I think It is time I welcomed you to Connect and the Neuropathy group. My Hoka walking running shoes are Women's Gaviota 3. I had the laces switched to the stretchy ones so I don't have the added risk of my shoes coming untied and then me tripping over the laces and falling.

I wore them again this morning. Just heavenly....I can walk much further without any pain or discomfort. They also have a 30 day guarantee at the store where I made my purchase. They want you to be happy. I also tried them on with the socks I normally wear just to make sure that the socks wouldn't be an irritant.

O.K. Let's go walking. Where are you? And what is the condition you working on?

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

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Thanks Chris for your response! I live near Colorado Springs Colorado and I’m planning to go tomorrow to the Boulder running company to check out Hokas. I have peripheral neuropathy, high arches which caused me to pronate and I’m developing, again, plantar fasciitis which I think is because I’ve been wearing shoes that didn’t have arch support. So now I’m back to wearing my splints at night for the plantar fasciitis because I don’t want that to takeoff again. Is that related to neuropathy do you know?

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bcool123
Have you considered getting Orthotics made from a podiatrist?
I had some made at least 30 years ago and paid $400. Wonder what they cost now?? They helped me.
Jake

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Profile picture for njh @njh

Hi @rnlorena
I had a sudden onset of tingling/burning all over following a Flu Shot in 2010. It was H1N1 Preservative Free Fluzone. Minutes after I got it my whole back felt sunburned. Then tingling/burning started in my upper body and moved down through my lower body. Those symptoms went on for several weeks then my hearing was affected by loud roaring for a month. My hearing is still affected and I use closed captioning on my TV. I also ended up with generalized weakness and had difficulty with everything - walking, getting up from a chair, driving, lifting groceries etc. I walked with a cane for nearly a year, and my strength never fully returned. I had a lot of Physical Therapy just to get stronger. I wonder if you have had any Vaccines lately that might have caused it? I also get stabbing pains behind my eyes and at the inner corners. My Corneal Specialist said they are neurologically related not an eye problem. I have Migraines, and feel they are related and so I take Fiorcet for them which gets rid of them. Ice Pick Headaches can cause them also.

NJH

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NJH, I had my covid shots in January. After my second one I had a reaction but it was like having flu symptoms. It only lasted two days. I do not think it is the vaccinations that have caused this. I am taking a statin drug so I stopped it. I feel like all of mine is somehow related even though I am not a doctor. I am keeping a running diary on what is happening to me in case I have to go to the ER. That way it doesn't have to be explained. I have another appt. to go back to the eye Dr who is a neuro/opthamologist. He had checked my eyes and said no damage so we will see what he says this time. You can get dry eyes with SFN but I looked at the symptoms and I don't think it is dry eyes. I think mine is related. I am going to see about a second opinion. I believe I have SFN I just want to get more information then what has been given to me. I thank you for sharing your story. I joined this to communicate with other people and thought it might help me. My neuro doctor said he has not heard of any people with eye pain. You are the second person that I have heard of that has had eye pains. The doctor said that I am the second patient that said my symptoms came on overnight full blown.

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I have perrephial neuropathy and can no longer walk because I am numb up to my ankles. I stopped driving 5 years ago. I also started having the symptoms in my hands and now I have very little use or control of them. The pain is off the charts almost 24/7. Nothing seems to help. Anyone else have issues with their hands? Does anything help you? Thanks.

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Profile picture for Jake @jakedduck1

bcool123
Have you considered getting Orthotics made from a podiatrist?
I had some made at least 30 years ago and paid $400. Wonder what they cost now?? They helped me.
Jake

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Holding off I’m going to a podiatrist because I know they will want to give me orthotics and I can’t afford them right now because I’m having asbestos issues under my house!

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Profile picture for gizzmo48 @gizzmo48

I have perrephial neuropathy and can no longer walk because I am numb up to my ankles. I stopped driving 5 years ago. I also started having the symptoms in my hands and now I have very little use or control of them. The pain is off the charts almost 24/7. Nothing seems to help. Anyone else have issues with their hands? Does anything help you? Thanks.

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Hello @gizzmo48, Welcome to Connect. Sorry to hear you have not been able to find anything to help with the pain. I have some minor pain in my hands due to carpal tunnel and I also have small fiber peripheral neuropathy in my feet but I don't have any pain with them just some numbness. I try to do some hand exercises daily to keep some flexibility in the fingers, hands and wrist. It does help with the stiffness. Have you had your hands checked for carpal tunnel syndrome?

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Profile picture for bcool123 @bcool123

Holding off I’m going to a podiatrist because I know they will want to give me orthotics and I can’t afford them right now because I’m having asbestos issues under my house!

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bcool123
Asbestos, that sounds like like an expensive fix. I wonder how much orthotics cost now days. To much I’m sure.
Jake

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In reply to gizzmo48.

Interesting combination of symptoms! There are supposedly 100 different varieties of peripheral neuropathy, each with a different combination of symptoms--but no distinguishing names, so understanding and comparing experiences is complicated, but still worthwhile.

Just because you have one disorder doesn’t mean you don’t have another one, as well. My first round of significant hand disfunction 5 years ago turned out to be caused mainly by cervical spinal stenosis (big operation, long recovery.) Last year when it was getting bad again, the cause was carpel tunnel—aggravated/caused by underlying peripheral neuropathy (small operations, long recovery). I still have trigger thumb on and off since, with residual weakness and pain, and have started to develop Dupuytrens contracture. I’m losing ground now, but continue doing my PT hand exercises, so can still play ukuele and fiddle for entertainment, socializing and stress release, even though I can’t tolerate piano anymore.

SOME QUESTIONS TO CONSIDER:
-What kind of doctor do you have? (GP? Neurologist?)
-Do you have a diagnosis? Is your caregiver sure that all symptoms have the same cause (neuropathy?)
-Have you had nerve studies such as emg/nerve conduction or nerve biopsies?
-Are you getting physical/occupational therapy?
-What are your goals?

I’m curious about how you’re getting around. I was shocked that my neurologist recommended a walker when my neuropathy was diagnosed. But after the shock wore off, I tried it, and love that I can “feel” the ground through my hands and safely continue with exercise walks. (If you try a walker you should get foam pads for the handles to protect your hands from vibration, as vibration can aggravate carpel tunnel and hand neuropathy.)

Wishing you good luck with seeking relief and doing the hard work required to live well with neuropathy.

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