Living with Neuropathy - Welcome to the group

Hello. I am Cindy. I have had neuropathy for about 15 years. I have numbness and tingling that started in one toe originally, that has now progresses to both feet and legs to the knee. I have no pain. Recently in the last year, I have had increase in irritating sensation in both legs. I believe initially this was caused by the lockdown and lack of access to exercise facilities. This year I have changed to a sugar free, high fat diet, which helps a lot. I am not diabetic. I am also back to the gym. In June of 2020 I had decompression surgery on one foot and stem cell infusion on both feet. Though the decompression surgery has had very little affect, the stem cell infusion has been valuable. I have had much more feeling in my feet and calming in my legs. It seems to be waning a bit so I may need another infusion in the future. I also am take a plethora of vitamins, after having all vitamins minerals tested last year. I am not sure if that is having any affect on the neuropathy.

Cindy, Since you are not diabetic, could you share the root cause of your neuropathy? I am in a similar situation (non diabetic) so curious.

I was at the Mayo Clinic this year for testing. They believe it is a genetic issue.

Hello @pondoak and welcome to Mayo Clinic Connect. Thank you for sharing your story and what you have found to be helpful to your neuropathy so other members can connect with you as well.

You sound like you have been very proactive in your journey. How can members in this discussion be of support to you?

Thanks Cindy. In my case the neuropathy was triggered by pernicious anemia, a genetic condition.

Hi Cindy, are you in USA?

Yes, I am in Michigan.

I am very proactive! I am always interested in new treatments and trials that become available.

hi there I'm living in st John's Newfoundland living with neuropathy for about 5 years in my feet and both hands.24/7 I'm in so my pain just hard to function. I'm in tears most of the time the pain is unbearable,it effects my life in such that I have bad thoughts at times it's. just taken over my life. I used to be a pretty happy person the life of the party but not any more. my neurologist has me on different meds over the years but nothing has helped so far. I've never experienced pain like this before I'm also dealing with 2 types of arthritis also had double hip replacement 6 years agg. I just turned 60 and use to be very active not so much anymore.the pain in my hands it's hard to explain one minute they feel like I put in in the fireplace .other times it's like they are frostbitten.I wear my winter gloves about 23 hrs a day.I had a infusion of ketamine and lives and 3 weeks ago no help waiting to get another 5 hour treatment any day now.my doctor is trying his best buy so far no luck. I'm looking for any help or advice or suggestions .any help would be greatly appreciated. thanks

Hi @bluesman1. Sorry to hear you are in so much pain. I’ve found so far that I’m better off with a “toolbox” if you will for neuropathy and associated pain. I have chronic pain caused by another condition, but I also have small fiber neuropathy. I was diagnosed three years ago with punch biopsy. What do I mean by a toolbox? A group of things that while individually may be of little help, but together with other things may make life bearable. No one deserves to be in pain like this. What’s in my toolbox:

Prescription meds: Lyrica, Effexor and Diazepam
Supplements B12/ Vitamin C & D
Topicals: CBD cream. CBD CLINIC PRO SPORT
LEVEL 5 (worth the $)
Cannabis: I don’t get any relief from ingesting CBD alone in any strength. If I smoke cannabis with THC and CBD, it helps. I use it all day, every day. I don’t like it, but it helps. I also use edibles 10mg usually a couple of times a day. I’ve been using cannabis for quite a while, so ease into it strength wise.

OTHER: you unfortunately live in a cold climate. This does two things to neuropathy to aggravate it - the barometric pressure drops and the cold air thickens your skin. Both increase pain. I hate to be the one to tell you this, but between neuropathy and arthritis, you need to move. A lot. I know it’s the last thing you want to hear but exercise helps everything. Even hand stretches, roll your ankles around, etc and see if you can exercise as often as possible. Keep warm. Cold climates are tough.

Compression sleeves: in winter, I wear these on my calves. Some days they really help. Can be worn on arms as well.

Socks: whatever you find agrees with your sensation. Footjoy makes some nice ones.

A TENS Unit: Doesn’t have to be a true TENS unit. You can buy one on Amazon for less than $40. You apply pads to different areas and turn on the sensation. This is for areas of pain and not as effective on arms and legs for me. However, you may find it makes a difference everywhere. Just a low hum produces the best result.

Weighted blanket: these are amazing. Mine is a 20lb model. It does work. I use mine whenever I’m on the couch, which is quite a bit.

In the car I now use a gel seat due to lower back fusion and nerve issues. It helps.

HEADSPACE: this is an app which teaches meditation, as well as providing stories for listening.

SPOTIFY: all the music you need

Yoga/ exercise: it’s counterintuitive, but exercise works for pain. I was working with a trainer for a year pre-pandemic, and it’s the first thing I’m going back to after my vaccine.
Resistance bands - great for the legs. Get the loops and stretch every day. It helps

If I think of anything else, I will post. I don’t have many answers except to say I know the pain. It changed my life. Disabled and retired early. Didn’t see this coming. However, as I’ve had time now (2 years since surgeries and diagnosis), I think the best advice I can give is to kind of lean into it a bit. Sadly, it’s not going anywhere. All you can do is try and minimize it and live with it. I wish you all the best. No one deserves to be in pain. I hope some of what I’ve shared will help. Reduced sugar and eliminating alcohol helps also. Believe me, I feel for you. It will stop you in your tracks as you know. Take care of yourself. Better days are ahead:)