Neuropathy in feet and limited toe movement?

Posted by plbelanger @plbelanger, Fri, May 15 12:01pm

Just curious as I was diagnosed with peripheral neuropathy in the beginning of this year but have yet to see a neurologist about it (postponed till end of June due to COVID19). I have constant pins and needles, numbness, pain in both my feet. It's gotten worse over the years (been dealing with it for ~10 years and never went to a doctor about it due to lack of insurance) and now I can no longer even bend my big toes at all and even bending any other toes are rather difficult. Just wondering is this common…anyone else have this?

@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

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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?

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@johnbishop

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?

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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.

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@lorirenee1

@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

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

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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).

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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.

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@dckuke

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.

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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

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@dckuke

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.

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Are you able to move/wiggle your toes?

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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.

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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.

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@plbelanger

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.

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@plbelanger

I know how frustrating it can be to wait for a call back.

It's a mixed blessing to have normal test results when you're hoping that they will tell you something. How are your toes? Some things we take for granted, so when various parts of our bodies don't work right, we come to appreciate what we do have.

I also have sfpn, and my toes hurt continually. I'm able to push down with them, but no other motion. I learned last week that I have spinal stenosis, which is squeezing the cluster of nerves that are in my spine. That may account for some of my pain. I won't know just how much until I have surgery to make space for the nerves.

When I was a boy, I remember visiting my grandparents, and in their church I was amazed by the organist. She was born with no hands, so she used her feet and toes instead, including playing the organ – playing the keys, not just the pedals.

What questions do you have for your doctor? I always have a list of things I want to talk about. Even with a list, I sometimes forget things. I could blame old age, but I've been a chronic forgetter all my life. Evernote on my phone is a real help for me.

Jim

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@plbelanger

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.

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@plbelanger Hello. I understand the mixed feelings and emotions negative test results can create….there is still an open door on diagnosis, and waiting to find out the next step can be stressful. I was once told by my Drs. office to call when the matter is more of an urgent nature (or very important to me) verses using the portal. Many times my portal message was left hanging in the air so, I learned to call on certain occasions. Good luck and I hope you are responsed to in a timely manner. Best wishes for help and answers.
Rachel

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Thanks guys for the advice/info. I have a followup in September with the neuro. It's just a been a frustrating experience trying to get answers this year. It took 4 months just to get an appointment with a neuro then COVID delayed it by another 2.5 months. Now I have to wait till the end of September to speak with him again unless I get a response from the patient portal. I understand this is something I'll have to live with it but it would just be great to have an answer as to why I have it to begin with. My question for the doctor was simply what the next steps are to figure out why I have PN. Prior the PN diagnosis I did have an MRI of my lower back done last year where they were looking for a pinched nerve to see if that was a cause but that wasn't the case. The doctor did however tell me I do have degenerative disc disease and then she was the one to order the EMG/NCS test which came back with PN.

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@plbelanger

Thanks guys for the advice/info. I have a followup in September with the neuro. It's just a been a frustrating experience trying to get answers this year. It took 4 months just to get an appointment with a neuro then COVID delayed it by another 2.5 months. Now I have to wait till the end of September to speak with him again unless I get a response from the patient portal. I understand this is something I'll have to live with it but it would just be great to have an answer as to why I have it to begin with. My question for the doctor was simply what the next steps are to figure out why I have PN. Prior the PN diagnosis I did have an MRI of my lower back done last year where they were looking for a pinched nerve to see if that was a cause but that wasn't the case. The doctor did however tell me I do have degenerative disc disease and then she was the one to order the EMG/NCS test which came back with PN.

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@plbelanger are you using the Mayo Patient Portal? I believe their goal is to respond to secure messages within two business days though, depending on the question, you may get your response sooner. I've usually gotten responses within 1 day, sometimes sooner.

Connecting through Secure Messages: https://connect.mayoclinic.org/page/chest-surgery/newsfeed-post/how-to-connect-with-your-care-team/

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@johnbishop

@plbelanger are you using the Mayo Patient Portal? I believe their goal is to respond to secure messages within two business days though, depending on the question, you may get your response sooner. I've usually gotten responses within 1 day, sometimes sooner.

Connecting through Secure Messages: https://connect.mayoclinic.org/page/chest-surgery/newsfeed-post/how-to-connect-with-your-care-team/

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No I'm not. I'm seeing a local doctor in my area.

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