Neuropathy in feet and limited toe movement?

@plbelanger I have foot neuropathy very badly, with lots of excruciating pain, and toes that feel stuck together, pulled from their sockets, or twisted as tight as they will go. It is a despicable, incapacitating illness. All of what you are describing are typical, for very bad foot neuropathy. It sounds to me like your toe muscles are becoming effected. The one thing I do suggest is exercising your feet at least 5 days a week. Muscles can strengthen, even though they can become damaged due to the neuropathy. Go to you tube and find foot exercises for neuropathy, and that might help. To start, stand on tiptoe, and go up and down on your feet. Walk across the floor on tiptoe. Try to pick up rubberbands with your toes. Best of luck to you. Living with this is a bitch. Period. Lori Renee

Hello @plbelanger, I would like to add my welcome to Connect along with @!lorirenee1 and other members. I don't have the pain with my neuropathy but I do share the issues with my toes. In fact my neurologist said "hammer toes" are common in most peripheral neuropathy patients. It's hard for me to bend my toes. I've thought about having the surgery to straighten them but I'm so old now I don't think it makes much difference.

Did your doctor prescribe any medication or treatment until you have your appointment with a neurologist?

Yes. I was on Gabapentin 600mg 4x daily for a few months but it didn't seem to help much. I just started Lyrica 75mg 2x daily this week but that doesn't seem to do anything either. Regarding the hammer toes, my toes aren't curled up but my big toes I can no longer move at all. When I got my nerve conduction test done at the beginning of the year I could at least sorta move one of my big toes a bit but now I can't move either. My other toes are also being increasingly difficult to move as well.

Thanks, I will look up these videos and see if they help any.

Twice a day I get out my pinky ball or tennis 🎾 and stand each foot on it for a minute or two. I start with it under the ball of my foot, move it side to side, scrunch my toes over it, Then just generally look for places that seem “stuck.” It can be painful in places but that could mean that you found a spot that needs a little attention. Even when sitting, I wiggle my toes (even if they don’t actually move, it’s the intention that helps).

I have only known of my neuropathy for about 8 years. My toes, most of my foot and my ankles are terribly numb and painful. Now I am slightly numb and have fiery pain all the way to my thighs and fingers. I exercise or stretch my legs, hands and feet several times a day. As it progresses, I have been losing muscle, but with no exercises, it advances more quickly. Just my experience. I tried to neurologists and a pain management team, but my podiatrist has helped the most.

dckuke, your symptoms and experiences are very similar to mine. How has your podiatrist helped you? In what ways better then drs. and neurologist?
Thanks, Terry

Are you able to move/wiggle your toes?

He is the one that started treatment for severe plantar fasciitis that has lasted 20 years and began trying to several meds for neuropathy. Actually he and family doctor collaborated. After many tests and several appointments with my first neurologist, he only gave me a diagnosis and agreed with the prescriptions I was taking. A second neurologist gave me the worst medical experience that I had ever had--he was only interested in surgery. With much research and consultations, it was clear, my current doctors were just as up to date on treatments as these specialists. I started with Gabapentin, which did almost nothing for my pain, then Cymbalta , which caused severe memory issues. We finally, tried Lyrica, which helped greatly with lesser side effects--slight dizziness. My podiatrist started me on Tramadol and eventually elevated the dosage to this point--slightly over normal dose. Pain doctor tried Nucynta, which worked very well for pain--but of course the numbness was much more bothersome and very expensive. I finally decided at that time that Lyrica/tramadol left me with a lot of pain and discomfort, but it was very manageable. The pain doctor had suggested implants--but my disease has developed quickly and spread to hands so I elected not to do that--From other disease and bad joints, I have had one major surgery per years for my entire retirement, so not interested to additional ones. At this point, I am accepting being down for the worst days and getting around as well as possible for the better ones. I still cannot walk far or fast, but am able to do light workouts and ride a stationary bike several times a week. I still have seen no reason to return to neurologist.

So finally got to see a neuro and both my blood test and brain MRI came back normal today. Not sure what the next steps are though if any. Sent a message to my neuro today via the patient portal but no idea how long it will take to get a response.