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.

@johnbishop

I think they are the same thing. I've not heard the term small cell neuropathy but this may be what is meant but I'm not sure.

"What is another name for small fiber neuropathy? Small fiber sensory neuropathy (SFSN) is a disorder in which only the small sensory cutaneous nerves are affected." --- Small Fiber Sensory Neuropathy - Johns Hopkins Medicine: https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/peripheral_nerve/conditions/small_fiber_sensory_neuropathy.html

Jump to this post

Thank you

REPLY

Has anyone tried the HFX Spinal Cord stimulator? I have read that they have had good success with Neuropathy. I have SFN so I'm not sure if that would respond differently.

REPLY
@jansendscards

I have small cell neuropathy. My neuropathy is opposite of most as I have extreme pain instead of numbness. My Drs don’t know what to do with my pain. My pain is sharp pain in my legs and arms. My pain is causing me not to be able to work.

Jump to this post

Hello. I have received some help from Tegratol and Lyrica.

REPLY

I have mild chronic femoral neuropathy from an anterior hip surgery… though it may be consider mild I have lost a lot in my life walking …..walking my dog… anyone else have this experience from anterior hip replacement?

REPLY
@slturley

Has anyone tried the HFX Spinal Cord stimulator? I have read that they have had good success with Neuropathy. I have SFN so I'm not sure if that would respond differently.

Jump to this post

Hi StepanieT @slturley -- There are a couple of discussion on stimulators that you might find helpful.

-- Has anyone tried the HF10 Spinal Cord Stimulation Device?: https://connect.mayoclinic.org/discussion/hf-10-spinal-cord-stimulation-device-relieves-back-and-leg-pain/
-- Comparison of Spinal Cord Stimulators from Boston Sci., Nevro: https://connect.mayoclinic.org/discussion/comparison-of-spinal-cord-stimulators-from-boston-sci-nevro/

REPLY
@amart26

I have mild chronic femoral neuropathy from an anterior hip surgery… though it may be consider mild I have lost a lot in my life walking …..walking my dog… anyone else have this experience from anterior hip replacement?

Jump to this post

Hello @amart26, Welcome to Connect. There are a couple of other discussions you might find also find helpful.

-- Left hip pain and groin 3 years after posterior total hip replacement: https://connect.mayoclinic.org/discussion/left-hip-pain-and-groin-3-years-after-posterior-total-hip-replacement/
-- Strengthening exercises after total hip replacement: https://connect.mayoclinic.org/discussion/strengthening-exercises-after-total-hip-replacement/

How long ago was your hip surgery?

REPLY
@amart26

I have mild chronic femoral neuropathy from an anterior hip surgery… though it may be consider mild I have lost a lot in my life walking …..walking my dog… anyone else have this experience from anterior hip replacement?

Jump to this post

I had R anterior hip replacement in 2015 and have been dealing with R quad weakness ever since. PT recently found excessive scar tissue at the site and has improved situation with manual protocols. Femoral nerve apparently was stretched during dislocation process. Scar tissue and adhesions made the situation worse.

REPLY

Hi, I have not been diagnosed but have been to several doctors and had blood work up and MRI on my brain and spine. It started out small sensation tingling on all of my body face legs arms and went away than came back with feet and hands tingling burning and small spots on face tingling. than now my arms falling asleep at night. I am having anxiety and would like to know where to start finding help? thank you

REPLY
@gabe4223

Hi, I have not been diagnosed but have been to several doctors and had blood work up and MRI on my brain and spine. It started out small sensation tingling on all of my body face legs arms and went away than came back with feet and hands tingling burning and small spots on face tingling. than now my arms falling asleep at night. I am having anxiety and would like to know where to start finding help? thank you

Jump to this post

Hello @gabe4223, Welcome to Connect. My neuropathy symptoms are mainly numbness in my feet but I have had instances where my arms fall asleep and I wake up with terrible tingling sensation. I found that it happens mostly due to sleeping on my side and placing my arms in an awkward position that pinches a nerve (I think) and causes the sensation. There is another discussion that you may want to read through to learn what other members have shared.

Paresthesia, abnormal sensations: https://connect.mayoclinic.org/discussion/paresthesiaabnormal-sensation/

"Paresthesia refers to a burning or prickling sensation that is usually felt in the hands, arms, legs, or feet, but can also occur in other parts of the body. The sensation, which happens without warning, is usually painless and described as tingling or numbness, skin crawling, or itching." -- Paresthesia Information Page - National Institute of Neurological Disorders and Stroke: https://www.ninds.nih.gov/Disorders/All-Disorders/Paresthesia-Information-Page

You mentioned seeing several doctors. Have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic?

REPLY
@johnbishop

Hello @gabe4223, Welcome to Connect. My neuropathy symptoms are mainly numbness in my feet but I have had instances where my arms fall asleep and I wake up with terrible tingling sensation. I found that it happens mostly due to sleeping on my side and placing my arms in an awkward position that pinches a nerve (I think) and causes the sensation. There is another discussion that you may want to read through to learn what other members have shared.

Paresthesia, abnormal sensations: https://connect.mayoclinic.org/discussion/paresthesiaabnormal-sensation/

"Paresthesia refers to a burning or prickling sensation that is usually felt in the hands, arms, legs, or feet, but can also occur in other parts of the body. The sensation, which happens without warning, is usually painless and described as tingling or numbness, skin crawling, or itching." -- Paresthesia Information Page - National Institute of Neurological Disorders and Stroke: https://www.ninds.nih.gov/Disorders/All-Disorders/Paresthesia-Information-Page

You mentioned seeing several doctors. Have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic?

Jump to this post

yes I am not sure how to go about doing that, do you have any info on where to start? my doctor told me too just go home and ignore.

REPLY
Please sign in or register to post a reply.