Living with Neuropathy - Welcome to the group

Hi @wanda78wren,

You may notice that I moved your message to this existing discussion in the Neuropathy group. Since you mentioned neuropathy, I thought it would be beneficial for you to be introduced to the many members who have discussed similar symptoms.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I'm certain that Mentor @johnbishop and fellow Connect members will join me in extending a warm welcome; in the meantime, may I ask if you've been diagnosed with a particular type of neuropathy? For instance, peripheral or diabetic neuropathy?

Hi @wanda78wren,
I would like to add my welcome along with @kanaazpereira. I have idiopathic small fiber peripheral neuropathy in both of my legs/feet but have never had any associated itching. I have no medical training or background but I don't believe it's a common symptom for neuropathy. I did find some interesting information about Neuropathic Itch here:

-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3139924/

It might be helpful for other members in the discussion to know if you have a specific diagnosis of neuropathy and other associated symptoms.

John

I am a Ulnar neuropathy patient aged 55 male & I am having problem with both legs. But the woorysome is itching on both legs particuarly during nights which disturbs my sleep. Not only that since i am a CSVD & Brain atrophy patient i don't know anything about neuropathic itching. As Im taking Asprin when itching irritates I use my finger to scrtch and blood often comes. Whats the remedy? Anyone explain

Hello. I'm new to this group, and I have been diagnosed with Small Fiber Neuropathy. I have itching (general body and scalp), in addition to the burning on my thighs, and occasionally pain and burning in my feet. I take OTC anti-histamine for my itch, on an as needed basis. Lately I have been taking it every other day. There are times I can go for a week. I've found that's the nature of this confounding disease.

Hello @willym, Welcome to Connect. I'm glad you found us. I also have small fiber PN in both feet/legs but I only have numbness and sometimes tingly feeling to slightly above the ankle. I do not have the pain that a lot of people with PN have. I've had mine for over 20+ years but only recently bothered to get a diagnosis in the past 2 years. One thing I have learned is that there are a lot of scams out there looking to take your money in hopes of the cure for PN. You really have to do your homework and do your own research.

You are right about the nature of the disease...we are all a little different in the way that we are affected and what works for one may or may not work for someone else. I know one thing that has helped me is changing my lifestyle and eating healthier and avoiding as much sugar as possible (should really ditch it all, but hey, you have to have some chocolate once in awhile).

@willym have you found anything that helps with your PN?

John
My story here -- https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=44#comment-65985

Hi @venki -- have you talked with your doctor or neurologist about the itching on both legs and problems sleeping? Maybe there is something else going on? I have no medical background or training but if it's in the legs it wouldn't be due to ulnar neuropathy as the ulnar nerve is located in the arms and shoulder.

-- https://www.healthline.com/human-body-maps/ulnar-nerve#1

Management of Ulnar Nerve Injuries:
-- https://www.jhandsurg.org/article/S0363-5023(14)00534-6/fulltext

I did find some interesting information about Neuropathic Itch here:
— https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3139924/

John

Dear , Neuropathy can be helped by Physical training , Meditation and Diet control.Suggest your applying Aloe Vera Gel or equivalent to reduce itching.I wonder whether Aspirin helps to reduce itching !

thanks for your reply. I use a small dose Lorazepam when the autonomic system flares up, and that really seems to help. I've read about (and tried a couple of times) using a NEW toilet bowl brush and rubbing it lightly over areas on my skin that are burning/painful. It is a desensitizer. I try it from time to time. I'm interested in any info/successes on healing nerve damage.

Hi All,

I am new to the group. Wondering if anyone has rapidly progressive PN. Based on my biopsies I have short fiber, long fiber, motor and autonomic PN. All of my doctors have not been able to identify any cause. In November, I was traveling independently around the world working on climate change and stopping deforestation with some foot symptoms. Then my hands became painfully numb and a few months later my face and head started having PN symptoms. Would be interested in hearing from anyone who has something similar and if they were able to reach a plateau. Mine seems to get worse on a weekly basis. Thanks for any info.

Hello @articmark,

Welcome to Connect. I know you must be frustrated not being able to find the cause of your PN. I have idiopathic small fiber PN which the neurologist thinks is possibly hereditary. Did your neurologist have any guesses as to the cause?

My PN started in my toes and bottoms of my feet and it was 20+ years before I bothered to find out what was causing the PN. I knew it was nerve damage but was always told there is nothing they can do to fix it which is why I put off seeing a neurologist and having an EMG to diagnose my PN. They can only treat the pain symptoms with drugs and I only have numbness with mine so there was not much they could do for me other than tell me I have small fiber PN. I have no medical training or background but I've never heard of PN progressing so fast so I'm wondering if there is something else going on healthwise.

You mentioned you were traveling around the world working on climate change and stopping deforestation. Were you around any chemicals that might have caused some of your symptoms?

Hoping some others may be able to share their experience with you of rapidly progressing PN.

John