Member Neuropathy Journey Stories: What's Yours?

This idiopathic neuropathy in both feet and up beyond my knees, is really taking a toll on my life! I use a hiking stick for balance but lately I am having a great deal of difficulty walking or standing.

I am in the process of researching a motorized scooter. I have spinal issues (but the MRI indicated that my issues with my feet is not caused by this). The spinal problems would make it extremely difficult for me to place the folded scooter in my trunk, even the lighter ones.

I think we all want to maintain our independence. I am 74 years old and live alone. I still have so much living to do and this neuropathy is certainly interfering with my life style!!

How do others cope?

Hello @cranea14, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I'm sorry to hear that your doctors do not seem to be listening to you. It can seem like you are going in circles when the treatment doesn't seem to be helping.

Sometimes I think it helps to have a plan when you talk with your doctor so that you are prepared and have questions written down that you would like to get answered. There is a website that will help you plan your conversation with your doctor at your next appointment - https://patientrevolution.org/visit-tools

Another thing that will help you personally is to learn as much as you can about your diagnosis and options that are available to you. Here are 2 sites that could be helpful to learn more about your condition.
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Have you been diagnosed with diabetes as well neuropathy?

This idiopathic neuropathy in both feet and up beyond my knees, is really taking a toll on my life! I use a hiking stick for balance but lately I am having a great deal of difficulty walking or standing.

I am in the process of researching a motorized scooter. I have spinal issues (but the MRI indicated that my issues with my feet is not caused by this). The spinal problems would make it extremely difficult for me to place the folded scooter in my trunk, even the lighter ones.

I think we all want to maintain our independence. I am 74 years old and live alone. I still have so much living to do and this neuropathy is certainly interfering with my life style!!

How do others cope?

Hello @apgillespie, Welcome to Connect. That was my major concern when I first started on my neuropathy journey. I wanted to maintain my independence and not burden my wife. What has helped me is learning as much as I can about my condition and things that I can do to help. I think it's really important to exercise and keep moving each day without over doing it. I also have trouble when I have to stand for too long or when I walk. I work on building my leg strength daily by riding my exercise bike for 30 to 60 minutes each day and also do some exercises to help with my upper body strength. I'm currently 78.

I purchased some Nordic walking sticks so that I could walk more upright and help with my balance problems. I find using two poles vs one hiking stick helps me.

Have you thought about a lightweight ramp you can use to push a folded scooter into your trunk?

Thanks for your response.

I go to the swimming pool for exercise. My problem in going there the walk to get to the pool is getting consistently more difficult. My ability to walk or stand is almost zero.

A ramp may work but I would have to get a larger vehicle and I’m not sure it would fit in my car.

Are you able to walk very far?

Hi all
This is my story.
I am 75. Up until about 3 years ago, I was (I thought) remarkably healthy for my age. I was skiing, road biking long distances, hiking, etc.
I was having the usual old guy's problems with urination, and eventually decided to have a procedure done. My urologist ordered a CT scan of my belly, and, to his and my surprise, discovered a large tumor (lymphoma) on my small intestines, and numerous other tumors on both kidneys.
Long story short, the lymphoma was resected, turned out to be very slow growing type. I probably had it for years. The kidney tumors were unrelated, and were determined to be something rare (onchocytoma), and not malignant, so they're still in there.
BTW, I finally had the prostate surgery, which went well, except that I was found to also have prostate cancer, but again, the very slow growing type. All these conditions are simply being watched for development
For years, I had been noticing strange feelings in my feet. They felt like they were sweating, but weren't. This started happening when wearing shoes without socks.
Around the same time as my surgery , the feelings in my feet began to get worse, to the point where I couldn't wear any shoes or socks without experiencing severe burning. Finally, I got what was going on, saw neurologists at UCSF, had the million dollar workup, including skin biopsy, and was diagnosed with small fiber neuropathy of unknown cause.
I've tried almost every medication in the book, and can't honestly say that any have helped much. Currently, I'm on 150 mg of Lyrica at night (I tapered down from 450 mg daily, just to see what happens, and honestly, I can't say for sure). I'm also on Cymbalta. I have tried tramadol (doesn't work for me), gabapentin (as expected, same as Lyrica), low dose Naltrexone (who knows) and various supplements, vitamins, acupuncture, gadgets, the entire catastrophe.
Ironically, with all these diagnoses, the only thing that bothers me is the peripheral neuropathy, which has put the kaboom on half my life.
I'm trying my best to live as much of my life as I can. In particular, I am still able to ride fairly long distances on my bike, which I do whenever I can.
What I tell friends who I suspect may have PN is that they should see a neurologist soon. If they're lucky enough to have a treatable cause, the sooner the better. Also, it is helpful to have an expert do the workup. As we know, the disease is complicated and tricky to diagnose and treat. It's also helpful to understand that with these types of diseases, it's not at all unusual for medical providers to sometimes not act as well as we would like. Some even dread seeing patients with these types of chronic pain problems. So, don't take it personally, or allow it to make you angry. That doesn't help.
I had to quit a very satisfying (although part time) job simply because I couldn't wear shoes and socks. I've also had to quit numerous recreational activities, as noted above.
Regarding social interactions, I have less than before. Some of this is because sometimes, I don't feel well enough to go, or the venue will make me uncomfortable. I was a life long serious traveler. but I hardly travel at all now. Also, I have grown tired of having to explain to people what's wrong with me. I look like a healthy 75 y/o man. People's eyes glaze over, and I feel I'm boring them. Ironically, I often feel better in company when I finally participate, probably because I am distracted from the pain. This has led me to trying to learn how to distract myself.
It's mostly our responsibility to find out what helps. It's almost always different for each person. There are ways to feel better. We have to do the work and experiments to find them.
Hope this helps.
Jeff

Hi everyone – my name is Kat - I’ve been lurking in the background here for about 6 months trying to learn as much as I can about PN – though it about time to introduce myself. I myself do not suffer from PN but I am a voice/advocate for my husband.

Our story started last September when my husband, Tim, had a stroke.
Tim was a 58 year old Firefighter/paramedic/general contractor/father/grandfather/golfer/hunter/and all around adventurer. No preexisting conditions that we knew of at the time- had very thorough annual exams because he was part of the HazMat team with the fire department.
The stroke was serious but with some amazing intervention he came through unscathed. The doctors were calling it miraculous. He was out of the ICU within 24 hours and released from the hospital after three days. He literally danced his way out of the hospital. The hospitals PR department wanted to do a story on him!

During Tims stay they did find that his blood pressure was elevated and his A1C was up a bit. With that, they put him on BP medications, meds for diabetes, and a statin for “preventative measures.”

Three to four weeks after the stroke Tim began noticing some weakness in his right leg, at 6 weeks he began to fall. He went from dancing out of the hospital in September – to using a cane in October – to a walker in November – and even a wheel chair in December. It was taking weeks to months to get him in to see a specialist - who would in turn refer to another specialist. Who would order tests that you would have to wait weeks for. You can all relate to this I’m sure. In January they did an EMG that was horribly abnormal.
We stopped taking statins.
Docs continued to send us back and forth pointing fingers at eachother on who should be ‘treating’ him– it was ridiculous. Still no real diagnosis.
In March he was starting to improve a bit – but had to officially retire from the department. By May he wasn’t even using a cane much. Now, his balance is still off a bit, and his gait is a bit wobbly, but he gets around.

He has a lot of pain/neuropathy in his feet (mostly the right), sometimes lower legs, and sometimes in his chest/ribs.
He takes Lyrica for the neuropathy (was on Gabapentin from about Dec to March)

I feel like i stuck my head in the sand for a few months after getting nowhere fast - but i'm ready to start fighting again
Nice to meet you all,
Kat