Is loss of balance your primary complaint with neuropathy ?

Dear @rollo8
You fear you balance problem.. I’m there.. falling down could happen; we could hit the ground on our back of our head —- aight… that’s me… without a helmet… or could fall down on our face… oh-oh… that’s me…

Getting careful changes daily… use a 4-cycle by walking better; specially outside places… add a helmet from riding your bicycle OR keep use of an helmet even when using in rooms - up/down areas. Hitting your brain hurts… somehow…

According, helmet use is not well, supposedly ], but at home, it helped me - even my balance is not good.

Well.
Greg D. @greg1956

I too have a burning pain on my left foot if I cover with more than the top sheet. I do wear socks which don't seem to bother me. If I have pain when I wake in the morning, it lasts the entire day. I also have the tingling and burning all over, which has gotten decidedly worse in the last 2-3 months. I am so grateful I happened upon this support group.

I have PN and have been told it’s just something I will have to deal with. I walk with a cane now due to the imbalance. I found a blend of essential oils that helps immensely called Aches and Pains. I have just started down the research path and am hoping to find more natural supplements to help.

I’m a 75 yo lady with PN and balanci issues are a major problem as well as fear of falling. I use a cane, walkers and transport chair for long distance as I have muscle atrophy and weakness from CIDP, like MS of the PN system. You might really benefit from PT, as they do a lot of work with balance and gait training. I think it would yield much more benefit than a podiatrist. If arthritis in your feet/toes is an issue, Voltaren gel otc works well. Generic is fine! I also mounted a small flashlight on my walker so I can see better at night getting to bathroom. The motion sensor nightlights are invaluable for night safety. Amazon has multi packs cheap. As for supplements I would add folate for prevention of the PN getting worse. Low dose gabapentin Rx may help with the paresthesias. I recommend starting at 100mg and going up from there if needed. I hope this helps. Living with the pN and being off balance constantly in fear is awful. You have lots of fellow sufferers here who understand!

Hi @cookie760, I would like to add my welcome along with @slkanowitz and others. Glad to see you are reaching out and trying to learn more about neuropathy and what helps. You might find the Foundation for Peripheral Neuropathy helpful to learn more. They have a lot of information on complementary therapies, healthy lifestyles, research and more - https://www.foundationforpn.org/living-well/.

There are also many different discussions here on Connect where members have shared what has helped them navigate the murky waters of neuropathy - https://connect.mayoclinic.org/search/discussions/?search=neuropathy%20what%20helps.

Have you looked into any physical therapy or exercises to help with the balance problems?

I too share problems with balance. One thing that I did purchase and it's been a Godsend is a shower chair. I always fear falling in the shower and either hitting my head on hard tile or crashing through the glass. Anyway, I bought it on Amazon and although you do have to construct on your own, it is really just a few screws that they supply. I am not ready for assisted living and I want to be able to always keep myself clean and neat. So this chair was inexpensive and so thankful for it when I take showers. I do have two walkers left over from when my mother was here. She lived to be almost 90 yrs. old (the last year was not great) but the walkers do allow me to have a sense of stability. Its almost like using a grocery cart. It is that sense of balance that is now missing. I do avoid crowds when able as I always worry about someone inadvertantly (sp?) bumping me and throwing my balance off. I am seeing a neurologist for the first time at he beginning of March and I have high hopes of at least putting a name to this crazy inability of feeling the soles of my feet and toes. I do not want to have to resort to a wheelchair. Our house, although a one story ranch, is not wheelchair accessible and of course, I want to live at home as long as possible. My mother went through 3 separate bone breaks (hip, shoulder and pelvis) and I remember the rehab and the slow progress of walking again. After the 3rd break, I sat her down and said, "Mum, you can never fall again". Sounds stupid I know but I wanted her to know that she had to be more mindful. Turns out, that she was rushing to either get the telephone or answer the door. I told her that if it was important, that person would call again or she could check her answering service. She lived independently until well in her 80's. I will be 77 yrs, old in June and the thought of having to go into an assisted living apartment is something I will avoid at all costs. My husband still works full time so he is not around during the days so a lot of times I will wait until he gets home to help with tasks that I can't accomplish on my own. Some days using a swiffer, doing a load of clothes and starting dinner is a big win for me. I always multi-tasked when younger and it is difficult to remind myself that for the most part, those days are over but I try to know my limitations and live with it. I do take Lyrica and Gabapentin (both prescribed for things other that than "restless legs and feet" that I experience at night. It is a lot to take in and yes sometimes I feel like giving up but that isn't who I am. I raised two wonderful children while working full time always. Sometimes, I would grocery shop on my lunch hour, go home to put groceries away and start something in the crock pot so both of my kids could participate in organized sports. I just did what needed to be done and that was that. So now that both kids are grown and on their own, it is important for me to contribute to the house duties and so far I have been able to do that. I just think that all of us need to accept that we can't do what we use to do but celebrate the things that we can do. Sorry if I rambled but I read the posts here and I feel that a lot of you are still trying to ask your body to do things that perhaps will lead to a fall. My only advice is do what you know will not lead to a fall and pat yourself on the back for at least doing that!!!

I've recently been diagnosed with neuropathy pain. I'm having nerve condition studies soon. I find myself very clumsy and have had many falls with breakage. Last night I couldn't sleep although I was exausted. This morning I ache all over nausea trouble swallowing and overall feel very unwell. Therargy and a little down in my mood. Anyone else feel like this? Thank you😊

I have my bad days also....take heart! PN is to my knowledge a condition that you have to live with. Live with are the operative words here.....it isn't the end. Yes, I took time to feel sorry for myself and even my siblings don't fully get it. A sister suggested recently that we go to Brimfield in the spring. Are you kidding me? Walking untold distances on uneven ground. Well "no" that won't be happening but there are still plenty of things i cqn do. I love to craft. Florals and one of a kind Father Christmas figures. I love the planning the materials and actually sitting down to do one. I blast my playlist on spotify and me and our dog are happy as clams. Listen, I don't know your exact diagnosis but I also have IBS D which means that i have to be careful what I eat...I haven't had an apple in 8 yrs. because it is too high on FODMAPS (don't ask...you don't want to know) but surround yourself with everything that you love, music, scents, pets, people, hobbies, etc. and know that unfortunately there are people out there who are not as lucky as us. We will get through this. And most importantly cut yourself some slack. Okay, you are having a bad day. Can you light a fragrant candle, gather some flowers and tuck yourself into bed for the day. Tomorrow will be better and if it isn't then you need to see whatever doctor deals with the problems at hand. I know that you can do this. You have already done so much in life!!!! I am thinking of you and knowing that you will be alright.

Wrote a long reply and think I've lost it!!! I'll try again later. Many thanks all

Follow up.
♦️1- The Zero shoes did not work for me. Thought they were, but that was because I had fewer sensations of sliding when I wasn’t actually moving. The sensations and numbness ‘increased’, and I started using the cane 2 weeks ago, with the Xero shoes. Even with the cane, I still feel a slip/slide in my left foot. Getting upstairs is now a very real struggle. My husband helps but he is impatient. I know it’s all a sudden change for both of us. 🙏🏻 Coming down, with his assist, is much easier. Still scary.
I have ordered a two cane stair assist. Looks good on paper. We will see. And, the tub bench that has two legs outside the tub to let you slide and sit on the bench in the tub. FANTASTIC. Yes! I put it together. Hubby carried it up. I later adjusted legs on the outside to make bench an equal height all over. And, put it in the tub myself.
♦️2- The hand held massager for the feet? Way too painful even on lowest setting. I still use my floor unit foot massager. And, I massage my feet nightly with anything with Menthol; eg. Gold Bond lotion with menthol, and then another round of massage with Bengay cream. Have not tried capsaicin, because it may interfere with my blood thinner. ??? Also, stretch the toes back and forth for that clawed foot feeling. Actually, the toes are not as bad now after doing this for a few weeks.
♦️3- Saw the podiatrist yesterday. I drove about 25 minutes away. Right foot much less of a problem. Husband was with me. Was my first time out of the house in 2 weeks, using the cane and my Hoka Clifton 9 shoes, that I bought last summer when the imbalance just started. Very unsteady, felt like I was falling several times, even holding onto my husband’s arm. Just stepping into the elevator was scary. Much worse than 2 weeks ago. Was it the Xero shoes or using the cane? Or, can such a change just happen that fast?
The podiatrist was very matter of fact. Brief exam of the feet to gage areas of numbness. Said the Hoka shoes are good shoes for balance. Said using the cane had now made me dependent on it. Suggest I not use a walker unless I really felt fearful of falling. 🤔🤔🤔🫨🫨🫨
He gave me little hope. It is what it is. There is no cure. Told him I take the B12 and A-ALA. He suggested adding B-Complex and I could try Gabapentin, which I agreed agreed to try. Called the pharmacy this morning. Never received the order. Doctor in surgery today, best bet is he will send order by Monday. 🫣 Didn't even discuss the strength or dosage.
Once home, I pitied myself a short bit. I think that’s ok. 5 Stages of Grief.
I tried walking in the house with my Hoka shoes. Not! Then, I decided to put on my Altra shoes, without socks, and slide my feet without lifting them, using the cane. Scooting my feet. 👁️ I had observed a man in the parking lot at the podiatrist, going back to his car without a cane or any assistance, by just scooting his feet over the surface. Slow and steady as he goes. But he got there. Worked pretty good. This morning I actually put the cane aside while I scooted around the kitchen. Felt pretty secure. Even bought a cup of coffee out to my living room, no cane.
But, stepping up from the street to the sidewalk??? Sorry, Doctor, but I have a GREAT fear of falling. I have two walkers ordered, a smaller one for upstairs.
♦️4- SO, supplements taken for numbness, No pain????
Has anything really made a difference for you?
Anyone have some relief from the Numbness with Gabapentin??

Ok. Update and mini rant over. I hope and pray for everyone here. 🙏🏻🙏🏻🙏🏻❤️❤️😣