Anyone here dealing with peripheral neuropathy?

Hello group,

I have been dealing with peripheral neuropathy for about two years, beginning with tingling and numbness in both feet. While it has mostly been a source of discomfort so far, my daily routine has remained largely unchanged. For those of you who have lived with this longer, what has been your experience regarding the progression of symptoms? Is there a typical timeline for when the condition worsens and living with this condition becomes a dreadful reality?

@burchindy I can only speak for myself but I'm pretty sure there's no typical timeline and a lot of it could be related lifestyle, diet, exercise and any other health conditions that join you on your life's journey. I ignored it for the first 45 years when I first noticed it in the toes in my late 40s. I didn't worry much because it didn't impact my life other than some mild discomfort. Then when it had progressed into my lower legs in 2016 I setup an appointment with a Mayo neurologist and was diagnosed with idiopathic small fiber PN which I pretty much already knew I had but was looking for treatment to slow/stop the progression. I was disappointed that there really was no treatment that would help me and came to Connect to learn more about the conditions and what others have shared.

I was in poor physical shape and overweight so I first started working on that by daily exercise and eating healthier with a focus on removing as much sugar from my diet as possible for a cookie monster to do.🙃 Since I started back in 2016, it has helped with my symptoms but not eliminated them. The Foundation for Peripheral Neuropathy has some good information to get you started if you think it might help - https://www.foundationforpn.org/lifestyles/.

Been dealing with Neuropathy about 10 yrs. Tried most suppliments, shock stimulation, even Stem Cell 18 months ago. Feet are like stumps on bottom,and hyper sensitive on top. Been able to limit progression upwards. 600 mg gaba twice daily and one 300 mg as needed. My job is 8 to 10 hours on my feet. Biggest difficulty is walking long periods of time. When shopping recquire shopping cart for balance. Stem cell may have helped reduce progression. Thank you

Welcome @higginsmark88, Thanks for sharing what has helped you. You aren't alone with the difficulty walking and balance. I also look for parking close to the shopping cart return area so I can use one to help with walking and balance.

Another thing that is helping me is more regular exercise to maintain what little strength I have in my legs. I suppose you get enough of that if you on your feet 8 to 10 hours a day for your job. Have you looked into any balance exercises to see if they might help some?

@starlite42 Forget the Gabapentin - bad medicine - try Source Naturals Alpha lipoic acid 600 mg - once a day - 90% better - some doctors don't know anything about supplements - good luck - it got rid of my stupid idiopathic neuropathy. Also, take with a good brand B-complex vitamin to be sure B12 is in there - your body pees out the B12 it doesn't need so no need to worry about too much.

@blowerk1216 Horrible drug - take 600 mg of Alpha lipoic acid 600 mg brand Source Naturals - 90% better - no drugs - plus B Complex vitamins.

@datsun66
Horrible drug. It made me so fatigued at its lower dose - take Alpha lipoic acid 600 mg. 90% better with vitamin B complex - so glad I came here to find out about this supplement or I would be in bed with fatigue for life. Sorry sad some doctors do not study supplements.

Thank you for sharing your personal experiences and insights. It is comforting to hear from others who truly understand the challenges of living with neuropathy, and I appreciate the perspective you have provided.

As a follow up to my original post, what was determined to be the cause of your neuropathy? I am not diabetic nor an over drinker, although I do have few beers now and again. Have most been told its simply idiopathic or something definitively?

I have been dealing with this for about 8 years at least. They never found the cause. I was told I had tarsal tunnel bilaterally so I had the surgery on one foot but it did not help. Then I had a skin punch biopsy which indicated idiopathic small fiber neuropathy. The pain has progressed. I was on Gabapentin 1800 mg a day which did not help and later found out it can cause dementia. Therefore, I stopped it. A podiatrist told me I had some other problems with my feet. So, I had multiple steroid injections which caused me to have fat pad atrophy in both feet so now I have two problems contributing to my pain. It is a struggle to walk and I am in my mid 50's. I think the neuropathy was caused by Flouroquinolones I took since that is the only explanation. I had taken Cipro and Levaquin which had a black box warning for neuropathy and tendon problems which I also have. All I can say is that prayer and reciting bible verses helps me to get through the day. Knowing that this temporary body will one day be healed is my hope and future in heaven. Do as much as you can do for as long as you are able. Lifting up prayers for everyone going through this.

@blowerk1216
Hi, I’ve been dealing with peripheral neuropathy since 2018 at the moment I have severe pain in my toes the ball of my foot my ankles, my calf muscles. I get really sharp pains in my calf muscles. It’s almost like a taser kind of effect really hurts. I was on gabapentin that made me too dizzy while I was falling also, my Neurologist suggested Lyrica. I’ve been on that for about two years and just found out that all the swelling in my legs and my ankle and my feet is a side effect of Lyrica so needless to say I need to get off of Lyrica as soon as I can I also take baclofen and Cymbalta at night Cymbalta at night so I’ve started to lessen the amount of Cymbalta and I’m hoping to find someone that’s an expert in holistic that can help me get off of Lyrica. I was so upset when I realized that the swelling and pain that I’m having is a side effect of Lyrica wow I sure as heck wasn’t aware of it. I think I looked at the first couple side effects and didn’t look at the serious ones, but I wish I had done that best of luck to anyone who’s suffering from this disease now I also have PAD which is a whole other situation to deal with best of luck for everyone thanks for your comments.