Neuropathy with or without pain?

Hi Patricia @patriciaschulz1950, You are definitely not alone. Neuropathy is relentless, challenging and the unknown is the cause of a lot of our worries and concerns. I always try to stay positive but still have my days when it's easy to get discouraged. I also find comfort and hope by reading and learning from the struggles that others are going through. If you haven't already seen these discussions, it might be a good time to scan through them.
-- Peripheral Neuropathy is life changing: How do you accept it?
https://connect.mayoclinic.org/discussion/peripheral-neuropathy-life-changing/
-- Increasingly Difficult to Accept Peripheral Neuropathy
https://connect.mayoclinic.org/discussion/nor-accepting/
I'm sure @ray666, @njed, and others may have some thoughts or words of wisdom to share. When I get down in the dumpers I always revisit the Foundation for Neuropathy's page on Living Well - https://www.foundationforpn.org/living-well/ to see if there is something that may help me get through the day. Sometimes it's just the act of reading and learning more to get your brain to not think about how you are feeling at the moment.

@johnbishop thanks John . I do know that I need to preoccupy my time - unfortunately I have reached that point of giving up - fighting it - I have scheduled an appointment with mental therapist while looking for a chronic pain support group. I LOVE the Foundation of Peripheral Neuropathy
Frustrating there are so many stories.

I dont have pain other than the very rare jolt. But it isnt just numbness I cant really describe how it feels but this is the best I can - like my ligaments are being pulled, my foot feels like its literally a dead stone and about to collapse. I have an afo but the ankle still feels like rubber. Its constant and I too cannot take it mentally and its always on my mind. You can probably tell by my scattered writing that Im struggling mentally I guess. I tend to repeat my symptoms to see if anyone has the same but realize it can make it look like Im just thinking of myself. Best part is Im not even 50 yet so feel very alone and unable to relate to anyone. Not sure how to be positive with this…we’re at the bottom of any neurologists list! Anyways sorry but I dont want to add more misery but just being honest as if I said anything else I would be lieing. Hope you have some success!

@megidigo thank you for the reply…I am 75 and have been dealing with this for over 20 years. The last six years it has escalated, however, getting help or even remotely any medical person that has concern is nearly impossible. I just left the pain management doctor (Neurological group) and he more or less with no compassion…there are no options except surgery on your spine or antidepressants. Today not a good day. Your reply was appreciated

@patriciaschulz1950 Hi, sorry to hear you've been dealing with this for 20 years and John did mention me above. I have zero pain, numbness in feet and lower legs, poor balance and getting worse each year. I have noticed that folks with PN who have pain, tend to mention it quite often looking for relief. If I recall, most people have some degree of pain. One thing I do know, most neurologists are as puzzled as us on the causes of PN and why people with the same diagnosis are impacted differently. As people live longer, more people will develop PN and hopefully someday the medical community will be able to drill down on exact causes for each person which could lead to some sort of relief and a future cure. Meanwhile, stay well and keep moving. Ed

I have the pain, burning, and numbness 24/7/365 in both feet, and it's been like this for over 10 years. It's one of the 2 main reasons I had to retire and walk away from my job because I could no longer physically do it. Most days it's bearable, but I still have really bad days occasionally despite taking 3600mg of gabapentin and 1200mg of ALA everyday.
Obviously I'm also depressed and take 2 depression meds everyday, and again, some days are bearable, while others are not. To help deal with the pain from my neuropathy and osteoarthritis I listen to music for several hours a day while my wife is at work to help drown it out.

@njed thank you for the reply. I needed communication from my Mayo group. At 76 - I definitely won’t have surgery on my spine. I am just baffled and disappointed that I can’t find one doctor with a little empathy or understanding of this condition. I most likely will opt for a drug that helps with depression and nerve pain. And accept it’s just a “mask” to help me. I was told today that walking is making pain worse - I should swim, recumbent bike and go back and see a PT for better exercise options. Accepting my limitations is proving difficult-especially mentally.

@patriciaschulz1950 I have been in and out of PT but Medicare will only pay up to a certain dollar amount per year. Their theory is that PT is temporary, for example PT after rotator cuff surgery. Unfortunately, it is not designed for year after year sessions. With PN, we don't get "better". I do many exercises at home. Sounds like you have some thought out plans. Best of luck going forward.

Hello, Patricia (@patriciaschulz1950)

John has given you the very best "first step" advice: to avail yourself of all the sage material to be found on the Foundation for Peripheral Neuropathy's website (www.foundationforpn.org/). Spending some time on the Foundation's site was one of the first bits of advice I was given when I began to wander the many helpful posts in Connect's neuropathy forum. I might especially recommend listening to some of the Foundation's past webinars (https://www.foundationforpn.org/past-webinars/). Besides becoming a "regular" at the Foundation, I would recommend returning to Connect as often as possible and, when you do, ask questions, questions, questions! You'll find countless people here who are eager to be of help.

My very best wishes to you!
Ray (@ray666)

I am in the same uncomfortable situation. I have tried several "approved" treatments, and some of the scams, having spent thousands of dollars.

And yes, it does affect my mental health.