Living with Neuropathy - Welcome to the group

Just keep on going...exercising, moving, being with people (or one person), and you'll improve.

Barb

Hi. 2016 after medication Norflox I got peripheral neuropath feet and hands and area but manged without meds, tried some .. also other illnesses. But since June a year ago I started to get flushed face, mostly cheeks, but even when not flushed, burning pain... long story short it is now daily and last 2 nights have not slept much, 40 minutes last night, as the burning is not only in my face but down neck, chest front , back , legs, arms. I saw local visiting Dermatologist last Jan. he said doesn know what it is , a touch of Rosacea but said not a skin issues, so no more appointments, then saw the nearest Neurologist for a quick visit, had seen before, and showed him photos of when face red but I dont think I made my point to anyone that it is burning 9/10 for up to 5 hours even if not red, so I take selfies. What I am wondering is after many hours/days/evenings searching Internet and finding about ten things if "might be" I found Dysesthesia and I havent done a search on here yet but could this be connected with my former P.N.? Sorry if wrong section on here. The pain is unbearable and its started after supper tonight and i know am in for another horrible night. I am older and have other illnesses and wondering how you mange the pain and perhaps know someone where it started off on face and not all over.. thanks, and best wishes to everyone, J.

@ray666, That is a very thoughtful and meaningful statement. I was taught that the reason people grow wary of seeing their friends ailing is first of all.....#1..the reality of not being able to help them. After that, #2 might be.....because it frightens them that they might end up the same way. I think I understand your interpretation that their wariness is because they see the disability and not the person. Practicing mindfulness will help folks be more non-judgemental and accepting.

May you have happiness and the causes of happiness.
Chris

...so true Chris. I was not in same country as my mother when she was placed in a home overseas. My nephew would take the odd photo of her and i have abut 6 photos showing her decline and towards the end I could cry just looking at her frail body, mystified expression, bent over and it was like that for many years - although she lived into her 90s... but the minimum quality of life was not there; this is why I , at 79, do not want the same fate.. you really explained it well and why my adult daughter does not want to talk about it - she too is cognizant of what might happen in her future.. and you are again right when we especially see a stranger and judge them on appearance and not knowing their story. However here in Canada I do believe in the MAiD process IF someone has gone through the legal process and does not want to spend their last years on earth like my mum; and if their wish is to live regardless, until their body finally surrenders, then we should provide all the necessary help to them to do so (but its not my wish). Thanks for explaining the way you did.

Ah, yes, Chris, three cheers for mindfulness!
May I wish you, too, happiness and the causes of happiness. I hope we get to talk again in the coming days.
Ray

new to the group, first post. I have had PN for about 2 years now and have mostly just lived with it. Have a decent neurologist, but he just says it does not get better, so live with it. I am wondering about the value of a getting second opinion from Mayo in phoenix. I also have a few other nerve issues such as dropfoot, a tremor, and long standing ADHD. Luckily, I had a terrific career working outdoors and almost perfect health till i turned 76. I get by on about 3- 100 mg doses of gabapentin weekly, when i need a little extra sleep. I do PTherapy and can still do cardio workouts on elliptical and bikes, but have pretty bad balance, especially on trails with inclines. Second opinion have any value??

Hello @gilamonster, Welcome to Connect. Wished I could answer your question but I honestly don't know if a second opinion would have any value for you. If it provides any answers you were looking for on quality of life, less pain or other questions you might have it may have value but I'm thinking it doesn't change the treatment unless you get a different diagnosis. That's just my non medical opinion. I have idiopathic small fiber peripheral neuropathy and posted my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

I have similar concerns at my age of 80, balance not too hot, can't walk very far due to lower back issues and forward leaning. I do exercise a lot at home on an elliptical recumbent bike along with a rowing machine. Fortunately I don't take any meds for my neuropathy since I only have the numbness and some tingling which there isn't any type of medication that helps with that.

The Foundation for Peripheral Neuropathy has some information on living well with neuropathy along with a list of alternative and complementary treatments that some people have found helpful. They also have a lot of webinar videos on their website that are great for learning more -- https://www.foundationforpn.org/living-well/.

You mentioned having PN for about 2 years. Is that when the symptoms started? Did you have any testing done when you were diagnosed - skin punch biopsy, EMG, etc?

@gilamonster I’ve had PN for about 8 years. My neurologist diagnosed it as small fiber, but it has since changed to large fiber. It doesn’t seem different but I am having issues with it progressing. Both my feet have numb areas. I feel like I’m walking on potatoes!

You are taking the medicine, I can’t because it makes me very tired. There’s no cure, so I have to try to keep going no matter.

I don’t think going to Mayo is necessary. First, they are usually booked up, and they prefer patients that don’t already have a diagnosis. (my experience). Mayo Phoenix/Scottsdale is tough. I’ve been blessed with a rare disease and was able to get to see Mayo providers.

From one desert dweller to another, stay cool out there! 🌵

I have been diagnosed with peripheral neuropathy which is located in my toes and balls of my feet. It is not painful except at night sometimes. I am not
diabetic but have a consistent high glucose level. I have noticed lately that my toes are starting to curl more inward which concerns me. I am a 77 year old female in good health. I have read some of the issues others have and my situation is very mild in comparison and I would like to keep it that way. I did go see a Doctor and he told me to stop drinking (2 drinks /night) which I did recently .

Hello @redbetz, Welcome to Connect. You are not alone in your neuropathy journey. Sleeping can be painful for many with any type of neuropathy. You might find the following discussion where others with neuropathy pain at night have shared their experience helpful.

--- Neuropathy Pain at Night: What helps?: https://connect.mayoclinic.org/discussion/night-pain-2/.

One thing that helped me was reading a lot about my condition and treatments and therapies that have been found helpful for others. The Foundation for Neuropathy is a great source for learning more about neuropathy and what helps - https://www.foundationforpn.org/living-well/.

Have you looked into any alternative or complementary treatments for neuropathy?