Neuropathy in feet and limited toe movement?

Posted by plbelanger @plbelanger, May 15, 2020

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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Hi Lori, and others with toes that are difficult to move, especially independently. Linda (my wife) has bad PN in her feet. She has also developed an inability to move her toes independently. She can still wiggle them as a group but not individually. She asked me to tell you guys that she has found that she can improve her ability to do this by pulling on them, putting her thumb between each pair of toes and kind of pulling on them. I have included a couple shots of her doing this. It seems to help her so she thought it might be helpful to someone else. Best, Hank

REPLY

a little off- topic: for what it’s worth; I have found that doing calf stretches and massaging my calves and feet before sleep has improved my nocturnal cramps greatly. Just FYI Helen

REPLY
@jesfactsmon

Hi Lori, and others with toes that are difficult to move, especially independently. Linda (my wife) has bad PN in her feet. She has also developed an inability to move her toes independently. She can still wiggle them as a group but not individually. She asked me to tell you guys that she has found that she can improve her ability to do this by pulling on them, putting her thumb between each pair of toes and kind of pulling on them. I have included a couple shots of her doing this. It seems to help her so she thought it might be helpful to someone else. Best, Hank

Jump to this post

@jesfactsmon Hi Hank......those images are so accurate for the neuropathy foot. Sometimes, my toes get stuck with one on top of the other. I also have to reach down and unhook them. I think most of that is part of the restrictive movement from the neuropathy. There are two or three yoga poses that really help those "twinkle toes". One is "legs up the wall". That pose encourages the valves to open so that blood can return from the feet easily. The other poses encourage greater steadiness when I walk and help my ankles. First you simply flap the feet up and down while they are above your head. The second one requires you to turn the feet round and round while they are overhead. You can find this Yoga pose on youtube I think. I'll take a look for you.

May you and Linda be free of suffering and the causes of suffering.

Chris

REPLY
@artscaping

@jesfactsmon Hi Hank......those images are so accurate for the neuropathy foot. Sometimes, my toes get stuck with one on top of the other. I also have to reach down and unhook them. I think most of that is part of the restrictive movement from the neuropathy. There are two or three yoga poses that really help those "twinkle toes". One is "legs up the wall". That pose encourages the valves to open so that blood can return from the feet easily. The other poses encourage greater steadiness when I walk and help my ankles. First you simply flap the feet up and down while they are above your head. The second one requires you to turn the feet round and round while they are overhead. You can find this Yoga pose on youtube I think. I'll take a look for you.

May you and Linda be free of suffering and the causes of suffering.

Chris

Jump to this post

REPLY
@helennicola

a little off- topic: for what it’s worth; I have found that doing calf stretches and massaging my calves and feet before sleep has improved my nocturnal cramps greatly. Just FYI Helen

Jump to this post

Good afternoon, @helennicola, You know what? My lie partner does some stretchy movements every night because of his restless legs which are laced with Charley horses if he doesn't get up and move every few minutes. Thank you for the suggestion. Nice to see your name pop up.

May you be content and at ease.
Chris

REPLY
@artscaping

Good afternoon, @helennicola, You know what? My lie partner does some stretchy movements every night because of his restless legs which are laced with Charley horses if he doesn't get up and move every few minutes. Thank you for the suggestion. Nice to see your name pop up.

May you be content and at ease.
Chris

Jump to this post

Hi Chris, from your lips to God’s ears, as the saying goes! Wishing you the same. Helen

REPLY
@jesfactsmon

Hi Lori, and others with toes that are difficult to move, especially independently. Linda (my wife) has bad PN in her feet. She has also developed an inability to move her toes independently. She can still wiggle them as a group but not individually. She asked me to tell you guys that she has found that she can improve her ability to do this by pulling on them, putting her thumb between each pair of toes and kind of pulling on them. I have included a couple shots of her doing this. It seems to help her so she thought it might be helpful to someone else. Best, Hank

Jump to this post

@jesfactsmon Thanks, Hank. I will try this toe pulling!!! Anything to help!!! Love, Lori

REPLY
@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?

Jump to this post

John, only your body is aging, not you personally?

REPLY

PN runs in my family and I was told it was HSN it HSPN or the Anglo-Saxon disease as my family was from southern England. Same symptoms as yours. Pins and needles in my lower extremities, spasms, no feeling in my toes, inability to bend toes, etc. I just had a neuropathy panel done at Stony Brook Neurology. Simple saliva test that looks at 83 known genes that cause neuropathy. Results came back yesterday. I have CMT4 based on a positive SBF2 Gene mutation. I also have SMA or Spinal Muscular Atrophy based on a positive SMN1 mutation (entire coding sequence deleted). This one really sucks. I also have Giant Axonal Neuropathy based on a positive GAN Gene mutation. I also tested positive for the SLC52A3 Gene mutation. Not sure what that means yet. Need to do more research. I'll be meeting with the neurologist in September to get a clear understanding of what this all means and what treatments, if any, exists. I have MDS/MPN-RS-T which is an extremely rare blood cancer. So now I have four extremely rare diseases. Gotta love it.

REPLY
@mjpm2406

PN runs in my family and I was told it was HSN it HSPN or the Anglo-Saxon disease as my family was from southern England. Same symptoms as yours. Pins and needles in my lower extremities, spasms, no feeling in my toes, inability to bend toes, etc. I just had a neuropathy panel done at Stony Brook Neurology. Simple saliva test that looks at 83 known genes that cause neuropathy. Results came back yesterday. I have CMT4 based on a positive SBF2 Gene mutation. I also have SMA or Spinal Muscular Atrophy based on a positive SMN1 mutation (entire coding sequence deleted). This one really sucks. I also have Giant Axonal Neuropathy based on a positive GAN Gene mutation. I also tested positive for the SLC52A3 Gene mutation. Not sure what that means yet. Need to do more research. I'll be meeting with the neurologist in September to get a clear understanding of what this all means and what treatments, if any, exists. I have MDS/MPN-RS-T which is an extremely rare blood cancer. So now I have four extremely rare diseases. Gotta love it.

Jump to this post

@mjpm2406 you lost me in the alphabet soup, but I like your spirit, as well as your can do attitude to even get this done. I have not heard prior to this of anyone doing having this type of testing done for neuropathy but it sounds very interesting to be able to pinpoint the genetic markers for this type of illness. Thanks for the post! Hope you follow it up after you learn more. Best, Hank

REPLY
Please sign in or register to post a reply.