Member Neuropathy Journey Stories: What's Yours?

I'm living with neuropathy in both legs. the pain and burning at night are enough to prevent me from resting.
two months ago, to address this discomfort, I rubbed Preparation H on my feet and legs. Why not? the label says that it will provide prompt soothing relief from burning, itching, and discomfort. It also promises to relieve internal & external discomfort.
I began to use this product out of desperation one night as I was ready to try anything available.
I rubbed the Preparation H on my feet and legs and after approximately an hour I felt a great sense of relief from the burning. I'm willing to try just about anything to be able to fight and win this battle.

I am overwhelmed by all the posts, and the stories of so many people that are dealing with the pain and discomfort of peripheral neuropathy. I hereby want to share my own experience with PN, and hope it will provide some useful information to others.

I am a 77-year-old male, and my neuropathy – in my feet – started about 25 years ago. The first symptom I had was pressure under the toes of my right foot, which at first I thought was caused by my sock balling up under my toes. I soon realized it was something else.
The symptoms gradually progressed, and soon I felt tingling and burning sensations. Not long after the symptoms started in my right foot, my left foot also developed the same symptoms.
In 2008, I severely fractured my left ankle and had surgery to repair it. After that, the PN got worse in my left foot – most likely due to nerve damage from the ankle injury and surgery. Over time, the symptoms gradually got worse – especially in my left foot. In the past year, the symptoms have started to extend into my ankles and my lower legs.
Symptoms
Prickly, burning sensation in toes and top of feet.
Intermittent stinging or stabbing pains.
Intermittent, deep pains (like bruising) in toes and bottom of feet.
Sensation of wearing a tight sock when I have nothing on my feet.
High sensitivity to pressure in big toes and bottom of feet - especially the left.
Too much time standing or walking increases pain and discomfort, while being too sedentary does the same – ironically.

Over the years, I have seen two primary care doctors, two neurologists, and a podiatrist. The primary care doctors didn’t have much to offer other than suggesting I take gabapentin and referring me to neurologists. Diabetic neuropathy was ruled out, as repeated blood tests showed I am not diabetic or pre-diabetic. The first neurologist I saw ran a blood test specific for other causes of PN, but all looked normal. His diagnosis, of course, was “idiopathic neuropathy”. The podiatrist had nothing of value to add to the diagnosis.

I recently saw a second neurologist. She ordered another blood test and an EMG test. Unfortunately, the appointment for the EMG is five months out, and my next appointment – not to see the doctor, but the physician’s assistant, is three months out, and will only be to review the blood test results. Getting timely medical care seems to be getting more and more difficult. The wait for my first appointment was about four months.

Possible Other Causes of PN?
I have some considerable damage to my lumbar vertebrae (stenosis, compressed disks, etc.), and have wondered if that could be a primary cause of my PN. My PN symptoms get worse when I sit for a long time and after I lay down in bed, making me wonder if changing pressure on my spine is the cause. However, both neurologists I’ve seen claim there is no causative connection.
I’ve had somewhat poor circulation in my feet and legs as long as I can remember, and wondered if that could be a cause of PN. Both the neurologists and the podiatrist discounted that possibility. However, nobody can offer other explanations.

I want to share what treatments I’ve tried, and their efficacy:
Chiropractic adjustments for lower back problems (no effect on neuropathy)
Acupuncture on feet (no effect)
Foot massage with medium bristle (hair) brush (some temporary relief)
Foot soak with Epsom salt (feels good, but no effect on symptoms)
Currently using the following medications for neuropathy:
Gabapentin – 300mg in the evening (helps take the edge off pain)
Ibuprofen – 200mg at bedtime, as needed. (helps when gabapentin not enough)*
Lidocaine (topical) – applied to top of toes and feet at bedtime. (minimal help)
Diclofenac Sodium (topical) – applied to deep pain areas at bedtime. (helps some)
* It’s been suggested that I take more gabapentin, but I’m a minimalist when it comes to taking drugs, and I have some concerns about effects of long-term use of gabapentin on memory and cognition. If symptoms get worse, and as I get older, I may consider upping the dosage of gabapentin. As I’m in my late 70s, I don’t worry as much about long-term effects as I did 20-30 years ago.

My best wishes for all of you folks out there dealing with PN.

YES, YES, YES. AND YES, IF YOU GO TO A CARDIOLOGIST, IT'S GONNA BE YOUR HEART IF YOU GO TO A PULMONOLOGIST, IT'S GONNA BE YOUR LUNGS, EVEN THOUGH YOUR COMPLAINT IS YOUR PINKY TOE. SPECIALISTS JUST FOCUS ON THEIR ONE AND ONLY SPECIALTY. THEY DON'T GO OUTSIDE THE BOX. I WAITED OVER 4 MONTHS FOR MY FIRST DOCTOR APPOINTMENT.
AND SHE BLEW ME OFF IN 5 MINUTES.
WAITED A FEW MONTHS FOR THE NEXT DOCTOR APPOINTMENT. SHE NEVER CALLED ME BACK WITH ALL THE TEST MRI'S SCANS AND THE RESULTS I WAS SCREAMING. WHERE IS DOCTOR HOUSE FROM THE TV SHOW? I WANT SOMEBODY WHO'S GOING TO LOOK AT ME AS AN ENTIRE FUNCTIONING BODY. IT'S LIKE A CAR IF YOU DON'T HAVE THE CARBURETOR CAR'S NOT GOING TO WORK ONE LITTLE PART. THE WHOLE SYSTEM FAILS
THIS HAS BEEN 2 AND A 1 YEARS. I FINALLY HAD MY APPOINTMENT SCHEDULED FOR MY EMGS. ON MY RIGHT SIDE AND ADDITIONAL MRIS, WITH AND WITHOUT CONTRAST TWO DAYS BEFORE THE APPOINTMENTS, I FELL BROKE, MY WRIST ENDED UP HAVING SURGERY, AND I AM RIGHT NOW WITH A PLATE IN MY WRIST WITH BOLTS IN THE SAME PLACE.I WAS OVER TWO YEARS AGO BECAUSE I KEEP FALLING DOWN AND BREAKING SOMETHING WHICH SETS ME BACK FROM PURSUING THE MAIN ISSUE AT HAND WHICH IS MY FOOT GOES TO SLEEP AND I END UP ON THE FLOOR WITH BROKEN BONES. IT BLOWS MY MIND THAT IN THIS COUNTRY TO GET A DOCTOR'S APPOINTMENT. YOU WAIT 8 MONTHS
THIS IS NOT A SOCIALIST COUNTRY
AND YET OUR HEALTHCARE SYSTEM REALLY IS ALL THE HOSPITALS ARE OWNED BY HEDGE FUNDS.
WHO PUT YOUR TIME LIMITS ON HOW LONG A DOCTOR COULD SPEND WITH A PATIENT?
FEWER AND FEWER PEOPLE ARE ACTUALLY GOING TO MEDICAL SCHOOL.BECAUSE OF THE COST, SO PEOPLE ARE CHOOSING TO GET THEIR DO OR THEIR NURSE PRACTITIONER OR PHYSICIAN'S. ASSISTANT LICENSE BECAUSE IT'S CHEAPER THAN MEDICAL SCHOOL. AND BEING A DOCTOR ISN'T LIKE THE OLD DAYS WHERE YOU MADE MONEY.
UNLESS YOU'RE THE MOST BRILLIANT IN A SPECIFIC SPECIALTY.AND DON'T TAKE INSURANCE ANYWAY. I'VE BEEN TO THE DOCTOR TWICE IN OVER 10 YEARS. FOR A COLD UNTIL THIS HAS HAPPENED AND I FEEL LIKE I WOKE UP IN DIFFERENT TIME. I REMEMBER DOCTORS SPENT AS MUCH TIME AS IT TOOK FOR YOU TO EXPLAIN YOUR SYMPTOMS WHILE THEY ACTUALLY LISTENED. AND ASKED YOU QUESTIONS, SO YOU KNEW THAT THEY HEARD WHAT YOU SAID. NOW IT'S GET A BLOOD TEST. THEY CALL IN PRESCRIPTIONS WITHOUT EVEN DISCUSSING HOW IT MIGHT AFFECT THE OTHER MEDICATION. YOU'RE TAKING AND THEY'RE ON TO THE NEXT, YOU NEED TO FIGHT LIKE HELL AND BE YOUR YOUR OWN ADVOCATE.
BUT I THINK I FOUND MY DOCTOR HOUSE
OUR FIRST APPOINTMENT, WHICH I WAS GOING TO CANCEL BECAUSE I WAS FED UP ALREADY. SHE ENDED UP SPENDING 3 AND A 1 HOURS WITH ME. HAVING ME EXPLAIN IN SUCH MINUTE DETAIL THE EXACT FEELINGS AND THE WAY THE OCCURRENCE OF SYMPTOMS COME.
AND SHE'S LIKE A LIFELINE. UNFORTUNATELY, I HAVE TO PUT ALL THAT ON HOLD WHILE MY BROKEN BONES RECOVER. I WISH ALL OF YOU AND MYSELF.
BETTER TREATMENT IN OUR OLD AGE THAN WE'RE GETTING
AND I ONLY SEE IT GETTING WORSE, UNFORTUNATELY
HATE TO SOUND LIKE A PESSIMIST, BUT I'D LIKE TO BE PROVEN WRONG.

I had cancer and went through chemo and radiation treatments. The treatments caused significant damage to my liver, bladder, and colon. Another 6 months went by and every time I ate anything my stomach caused a lot of pain. After scopes they discovered that the radiation had caused scars in my colon and it was efecting my ablility to eat anything. 2 days before I was scheduled for surgery my colon ruptured and caused immediate surgery. Since the surgery I have had neuropathy in both legs and feet to the point I can't stand anything touching them. I am on pregabalin and duloxetine. That has helped a great deal but there are many times I end up putting lidocaine all over my legs and feet. This gives enough relief that I can sleep 1 to 2 hours. I also use other products that help. The doctors here are wonderful and have really worked with me.
As far as effecting my life, I really don't go anywhere much and have limited mobility now.

Welcome @cwloeffler - I also have that blankety blank idiopathic neuropathy diagnosis but fortunately only have numbness and some tingling but no pain. I shared my journey earlier in this discussion - https://connect.mayoclinic.org/comment/310341/.

You might find it helpful to scan through the other discussions related to "neuropathy what helps" to learn what others have shared - https://connect.mayoclinic.org/search/.

Welcome @cherry82, Sorry to hear that your cancer treatments started your neuropathy journey and more. It is great to hear that you have a good team of doctors that have worked with you on the treatments. You might find the following discussion helpful if you haven't seen it before:
-- Chemotherapy-induced neuropathy: What helps get rid of it?
https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/
The Foundation for Peripheral Neuropathy also has a list of treatments if you want to scan through them to see if any might be worth trying - https://www.foundationforpn.org/treatments/.

@johnbishop
Thanks for the welcome, and the tip and directions. I'm still learning how to best navigate this site to find what I'm looking for. So much good and interesting information!

@malmor
I hear you! I've had similar experiences and impressions. Every doctor I see these days behaves as if they're on a tight deadline. Fifteen to twenty minutes is about the most time you can expect to spend with the doctor at an appointment. Most doctors are now part of large, corporate-owned health provider networks, and those corporations are mainly focused on volume and "the bottom line". I think one of the main reasons our country has a shortage of health care providers is that doctors are getting stressed and fed up with the constant pressure to process as many patients as possible per day. I try to prepare myself before a doctor visit by writing down questions I have, but usually end up with some of them unanswered.

I can't believe that you've actually sat with a doctor for more than 15 minutes. The nurse comes in, takes my Blood Pressure. Asks me questions the doctor walks in the doctor walks out. I said, don't I get to talk to her and she's gone. And I followed this woman down the hall. Excuse me, I have questions. Excuse me, excuse me, and she just kept walking like I was not right behind her until she went through 2 swinging doors that closed and locked. This is after waiting 5 months to talk to somebody, she called in like 5 prescriptions. Because you had taken blood work But she never looked at the medications. I was on and how contradictory they are with one another.
And as you've read then, the next doctor sent me for all these mrison tests never called me with the results. I got there myself that the day I took them. But I called her texted her, and messaged her 3 times a day, every single day for almost 4 months, had still never had a reply from her that it became like a running joke with myself. But see if she'll ever answer me, and then I get my bill. Well, that was it. Then, I had to wait 8 months, but I think I found somebody who is willing to really go deep with me. She spent over 3 hours having me go over the step-by-step. And all these tests she goes, look. I'm not certain these are all, but we're going to look for Everything. And I burst into tears, somebody actually listened, and then I fall and had to put every test on hold. Because I can't go into metal machines with, a metal plate in my arm the elderly really do get shafted in this country. It's such a pity and I'm willing to pay out-of-pocket. Not that I'm a rich woman, but I want answers. I can't even buy my way into an appointment. I hire you the concierge doctor she's as good as urgent care.
And I'm not sure if it's a Florida thing because I don't know where you live. But I can't imagine that you get treated like this in New York or any major metropolitan area. We're old news. Soon to be older.
And it really starts to play with your mind because it messes with the quality of life. And if you don't have a great reason to live, and you're always in pain, you think, what's the point? And then I come back strong and fight the good fight.
I really hope that they find answers for you as well. Because nothing hurts me and I'm not sick. I just have no feeling in my leg when I go to stand every now and again. And I go down hard, I guess it's this old age fat lady thing... I'm no longer a size zero with my five inch stilettos and little crop tops boo hoo.

@cwloeffler my gastro only gave me seven minutes. You’re lucky.