I have PN from my toes to my knees. I try to stay active like others mentioned above. Lately, I have found that my ankles are becoming very stiff and I feel tightness in my midfoot as well. I had ankle fusions on both feet a few years ago but my ankles feel stiffer than they did when I first got out of a cast. I was just curious if others with PN had stiffness in their ankle and/or tightness in the midfoot. Thanks.
Hello, I relate closely to your situation. I am using a walker (one that bends in and out) and am fearful of falls. It seems as if we can invent electricity to move trucks down the road that science should be able to move us with more efficacy. I am 74 and have been working with PN since my 40's...most tell me there is nothing they can do to help me be better. Has anyone worked with auto immune disease and PN? Auto immune disease and cognitive impairment?
I have stiffness and tightness in my ankles but I think mine may be from wearing compression socks and not my neuropathy. Does moving around or walking remove the stiffness for you?
Thanks for your reply. I am currently trying some physical therapy. The stiffness is there most of the time but does seem to be worse at night or if I've been on my feet for a while. Hopefully, the PT will help a little. It's uncomfortable but I think I worry more about the progression of the PN. This stiffness and tightness are new so I wonder what's next. Actually one of my physical therapists suggested wearing compression socks to see if that helped. I only tried it a day or two and didn't notice much difference.
Hi Rick- I have PN from spinal issues, my feet are also numb and hurt when up on them. I found 2 shoe brands for inside and outside wearing that really help. Inside: Uggs Koolaburra- they have stiff sides and back, so they are easy to push on/off and don’t slide out of place or semi-off without you knowing. They have a low non- skid rubber bottom, which really helps with safety on all indoor surfaces. They have a mesh-top so are “breathable” and a low “fluff”sheepskin-type lining which adds to the cushioning and comfort. For outside shoes- I have Brooks running shoes with mesh top (Dick’s Sporting Goods) and also 2 pairs of “casual” from Orthofeet “ (online shopping)- they come with cushion inserts to set up as you prefer, a wide toe box and very comfortable cushioned soles.
Have you made your home safer? Suggest remove all throw rugs, use a shower mat, careful on stairs- all because you’re not feeling things on your feet as you once did. Good luck and welcome!
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
I am 71 yrs young and I have lived with PN for over 10 yrs. I visited Mayo in Jacksonville in 2011. I was seen by a Neurologist and had several tests, especially for MSA. The majority of the test returned normal except Sweat test, balance and body response to other stimuli. I have digestive problems, constipation and/or diarrhea. I have pins and needles over most of my body and head. The Dr. said I had a slight sign of Parkinsonism. I take pregabalin (Lyrica) for pain. The Doctor told me that HEAT and Alcohol were my two worst enemies. Anyone else???
I am 71 yrs young and I have lived with PN for over 10 yrs. I visited Mayo in Jacksonville in 2011. I was seen by a Neurologist and had several tests, especially for MSA. The majority of the test returned normal except Sweat test, balance and body response to other stimuli. I have digestive problems, constipation and/or diarrhea. I have pins and needles over most of my body and head. The Dr. said I had a slight sign of Parkinsonism. I take pregabalin (Lyrica) for pain. The Doctor told me that HEAT and Alcohol were my two worst enemies. Anyone else???
Welcome @parkerjean, I see you recently joined Connect and have posted about an aneurism next to a valve which makes surgery a risk and that you also are dealing with chronic kidney disease along with your peripheral neuropathy and other health conditions. I can't begin to imagine how hard it is for you to manage daily routines. After I was diagnosed with small fiber PN and started learning more about my condition, alcohol is one of the first things I gave up after reading that it can make neuropathy worse. I'm wondering if the heat depends on what type of neuropathy you have and what is affected.
Did your doctor tell you specifically why the heat and alcohol were your two worse enemies?
Welcome @parkerjean, I see you recently joined Connect and have posted about an aneurism next to a valve which makes surgery a risk and that you also are dealing with chronic kidney disease along with your peripheral neuropathy and other health conditions. I can't begin to imagine how hard it is for you to manage daily routines. After I was diagnosed with small fiber PN and started learning more about my condition, alcohol is one of the first things I gave up after reading that it can make neuropathy worse. I'm wondering if the heat depends on what type of neuropathy you have and what is affected.
Did your doctor tell you specifically why the heat and alcohol were your two worse enemies?
Yes It seems that not only Heat & alcohol but any depressant significantly lowers my blood pressure to the point of staggering gait and syncope episodes. No Fun. I have fallen my times (thankfully no serious injuries) my orthostatic pressure problems are really a problem.
Go to zappos.com, in the Search Box- type “Koolaburrra by Ugg slippers”. scroll down past the flip-flop styles, the ones I got are “Leaky Perf “. One of the answered questions say this style is for women, so I entered “Ugg slippers for men”, and there are similar styles- check out “Ansley”.
My daughter and her family order almost exclusively from Zappos and are very pleased with their products, customer service, and return policy. I looked for myself after observing that the features of her Ugg slippers were just what I needed (stiffer back, non-skid sole, inside cushioning). I’ve googled how to wash the interior, it’s easy to keep them clean.
Go to zappos.com, in the Search Box- type “Koolaburrra by Ugg slippers”. scroll down past the flip-flop styles, the ones I got are “Leaky Perf “. One of the answered questions say this style is for women, so I entered “Ugg slippers for men”, and there are similar styles- check out “Ansley”.
My daughter and her family order almost exclusively from Zappos and are very pleased with their products, customer service, and return policy. I looked for myself after observing that the features of her Ugg slippers were just what I needed (stiffer back, non-skid sole, inside cushioning). I’ve googled how to wash the interior, it’s easy to keep them clean.
Me again- re-read your reply and saw you were looking for the mesh top, I don’t see them under the men’s choices, but based on my daughter’s experience, Zappos is very forgiving about returns, so maybe if one of the styles suits your other needs, buy them and try them out. My daughter does a lot of back and forth as they order for their kids too, returns have been never a problem
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Yes. This probably my main issue. Because of this my balance is off and foot sensation is compromised.
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1 ReactionHello, I relate closely to your situation. I am using a walker (one that bends in and out) and am fearful of falls. It seems as if we can invent electricity to move trucks down the road that science should be able to move us with more efficacy. I am 74 and have been working with PN since my 40's...most tell me there is nothing they can do to help me be better. Has anyone worked with auto immune disease and PN? Auto immune disease and cognitive impairment?
Thanks for your reply. I am currently trying some physical therapy. The stiffness is there most of the time but does seem to be worse at night or if I've been on my feet for a while. Hopefully, the PT will help a little. It's uncomfortable but I think I worry more about the progression of the PN. This stiffness and tightness are new so I wonder what's next. Actually one of my physical therapists suggested wearing compression socks to see if that helped. I only tried it a day or two and didn't notice much difference.
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2 ReactionsHi @centre-Can you post a shopping link (e.g. Amazon) for the Uggs Koolaburra you reference? I can't find the ones with mesh you mention.
Thanks
I am 71 yrs young and I have lived with PN for over 10 yrs. I visited Mayo in Jacksonville in 2011. I was seen by a Neurologist and had several tests, especially for MSA. The majority of the test returned normal except Sweat test, balance and body response to other stimuli. I have digestive problems, constipation and/or diarrhea. I have pins and needles over most of my body and head. The Dr. said I had a slight sign of Parkinsonism. I take pregabalin (Lyrica) for pain. The Doctor told me that HEAT and Alcohol were my two worst enemies. Anyone else???
Too much alcohol makes my feet worse.
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1 ReactionWelcome @parkerjean, I see you recently joined Connect and have posted about an aneurism next to a valve which makes surgery a risk and that you also are dealing with chronic kidney disease along with your peripheral neuropathy and other health conditions. I can't begin to imagine how hard it is for you to manage daily routines. After I was diagnosed with small fiber PN and started learning more about my condition, alcohol is one of the first things I gave up after reading that it can make neuropathy worse. I'm wondering if the heat depends on what type of neuropathy you have and what is affected.
Did your doctor tell you specifically why the heat and alcohol were your two worse enemies?
Yes It seems that not only Heat & alcohol but any depressant significantly lowers my blood pressure to the point of staggering gait and syncope episodes. No Fun. I have fallen my times (thankfully no serious injuries) my orthostatic pressure problems are really a problem.
-
Like -
Helpful -
Hug
1 ReactionGo to zappos.com, in the Search Box- type “Koolaburrra by Ugg slippers”. scroll down past the flip-flop styles, the ones I got are “Leaky Perf “. One of the answered questions say this style is for women, so I entered “Ugg slippers for men”, and there are similar styles- check out “Ansley”.
My daughter and her family order almost exclusively from Zappos and are very pleased with their products, customer service, and return policy. I looked for myself after observing that the features of her Ugg slippers were just what I needed (stiffer back, non-skid sole, inside cushioning). I’ve googled how to wash the interior, it’s easy to keep them clean.
Me again- re-read your reply and saw you were looking for the mesh top, I don’t see them under the men’s choices, but based on my daughter’s experience, Zappos is very forgiving about returns, so maybe if one of the styles suits your other needs, buy them and try them out. My daughter does a lot of back and forth as they order for their kids too, returns have been never a problem