Member Neuropathy Journey Stories: What's Yours?

Hello, It is good to discover this site and begin to read through some of the stories others have posted. I sometimes feel quite alone in my struggle with neuropathy. It is difficult even for my beloved spouse to understand. I look well and continue to be very active--blessed in that way. I ski vigorously, walk several miles a day when that is not possible, bike during the summer, etc. But I hurt, too. And am mostly numb from the waist down. I am 67 years old, male, retired (mostly). My only other health concern is aortic stenosis. My heart functions well, but I will need a valve replacement in the next few years.

My story began as some of yours did, with a sharp pain in one toe in one foot. Nobody could figure out why. I saw a podiatrist, who removed the nail and another, who cut a tendon. No change. I could still do what I was doing, but end up with screamworthy pain at times. If I took off my shoe, it would pass quickly. Later, I noticed that the toes on that foot had become rather numb, especially the third and fourth toes. And then, a month or so after that, I noticed that the other foot was also becoming numb. I went to my GP; he diagnosed me with Morton's Neuroma and told me to buy wider shoes, which I did. Little improvement.

About that time, I had a cystoscopy done, to see if there was a way to manage frequent urination--prostate enlargement was not the problem it turned out. But instead, I ended up with a urinary tract infection. The doctors ordered cipro and within days, I had shooting, burning, prickling pain up and down my legs. Soon after, numbness set in. This was 7 months ago. Since, the burning pain and superficial numbness has crept up to my waist. I have also experienced burning and odd feelings of discomfort around my ribs and heart on the left side, and often, tingling and "falling asleep" feelings in my fingers on both hands, especially at night in bed. That can quickly be remedied by moving my hands, but it comes back quickly, too. I have no idea if that is related to the PN in my lower body.

I've been to Mayo twice and have another appt soon. So far, no diagnosis beyond idiopathic. Most tests are normal, although my autonomic reflex screen was somewhat strange. I need to have that repeated without taking certain medications. But to this point, the docs have ruled out some conditions and still do not have an answer as to why I am going through this, whether it will go away, continue to progress, etc. All of which makes me very, very anxious. I have a hard time thinking about anything else. Doc prescribed Gabapentin but it does not seem to help; rather, causes my vision to blur slightly and often, I have a slight headache. I am thinking of discontinuing it.

I am using an app called curable.com to try to reprogram my brain from focusing so exclusively on the pain. This has been the most helpful thing so far. Also: prayer.

But it feels pretty lonely and sometimes kind of hopeless. I desperately want to handle aging better than this.

Sitting is very difficult for me. An hour or so and I'm pretty uncomfortable. I desperately want to see my Mom (89 and not in good health) and two of our kids, all of whom live in the NW, far from us. So we are planning a trip. I must admit, I am concerned about traveling and discomfort--and I don't want to continually complain about my neuropathy sensations to my wife!

Well, thank you for listening and also sharing your stories. I hope to glean some helpful information from you and if nothing else, my story, will also help you to know that you are not alone in your suffering.

Good morning @nrivers, welcome to Connect. And thank you so much for sharing your story so we get enough information to perhaps be helpful. We are a cohesive and caring group of patients, caregivers, and providers. Although we are not professional clinicians and do not have the ability to diagnose or prescribe, we can be supportive and helpful. It is wonderful that you are working with the team at Mayo and we are happy to know that everything possible is being addressed.

Many of us have spent years developing some “tricks” and “treasures” that can positively impact our daily lives. It is the sharing that makes Connect such a valuable resource. All of us are here for you.

What medications are you using right now besides Gabapentin? I use Gabapentin in the evening and Cymbalta in the morning to relieve the anxiety that gets me in pain trouble, Please do not discontinue a medication without help from your clinicians.

Stress can also be a culprit. Take a look at meditation and mindfulness. These practices can provide a sense of calm and help control irritation and discomfort.

What would be most helpful to you right now?

May you be free of suffering and the causes of suffering.
Chris`

I shared my journey before not much new to offer except to add many thanks for those of you who share and make me feel less isolated. I was thinking this morning about how unrelenting this burning pain is like tiny branding irons pushing on every sing nerve in my feet. I am all out of medication attempts after 14yrs i have tried everything to no avail. No cause a lot of test validate the pain which is good so neuro dr. don't sign me off as nuts! I commend all of you for your valiant fights and whenever you feel discouraged remember you are not alone even if your struggle is yours alone. Take care

I have burning pain in every surface of my body. Testing being done to find a cause for the small fiber neuropathy that has consumed by body. The person I was just three months ago no longer exists. I try to do as much exercises as I can to feel some normalcy. As of the last week my heels now are in pain. Everyday something changes or intensifies. I am waiting for my insurance to approve Lyrica as I am not feeling much relief on the gabapentin. Apparently my insurance company does not like the dosage and the doctor needs to adjust it. I never took anything but an occasional Tylenol. It does help knowing that I am not alone.

I have burning pain in every surface of my body. Testing being done to find a cause for the small fiber neuropathy that has consumed by body. The person I was just three months ago no longer exists. I try to do as much exercises as I can to feel some normalcy. As of the last week my heels now are in pain. Everyday something changes or intensifies. I am waiting for my insurance to approve Lyrica as I am not feeling much relief on the gabapentin. Apparently my insurance company does not like the dosage and the doctor needs to adjust it. I never took anything but an occasional Tylenol. It does help knowing that I am not alone.

@kelsey1234, The Foundation for Peripheral Neuropathy website has a section on Living Well with Peripheral Neuropathy that may provide some suggestions to try for some relief - https://www.foundationforpn.org/living-well/

So sorry to hear of your pain, Kelsey. I can identify with your comment: "the person I was just three months ago no longer exists." I feel that way also, though seven months have passed. A day at a time, I guess. Some long time sufferers have said that the pain can lessen in time. Maybe they simply get used to it. I have found websites dealing with chronic pain science helpful. An app that is helping me is curable. Hang in there. Hope the docs and meds can help you.

Does curable.com cost money ?