How to best explain?

Posted by Ray Kemble @ray666, Feb 27 1:31pm

Hello!

I have been asked to write something about my experience living with idiopathic polyneuropathy. I have found that since receiving my diagnosis what a tough time it can be to explain to friends what the symptoms "feel" like. Most of my friends assume I am suffering a terrible dizziness. I tell them, "No, I don't feel 'dizzy'." I tell them my head remains clear. The best I have been able to come up with so far is to tell my friends: "My polyneuropathy feels more like I am onboard a ship in a lightly rolling sea and I am being gently tossed from side to side." I am wondering if any of you have found a better way to explain what the sensation is like. I'd love to hear what you've come up with. Thanks!

Ray
@ray666

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@ray666 – I too have idiopathic polyneuropathy – sensory and motor which gives me bad balance. The constant tight sock feeling is annoying but in past 3 years, balance is becoming the real problem and due to numbness in feet, any uneven surface is a problem. I' ve explained it this way. When you fall asleep in a chair and you wake up and your foot is "asleep", think about getting up and walk on an uneven surface. Your feet can't feel a height difference in the surface of the floor. You have numbness. It can throw you off balance. The signal from the feet to the brain gets lost and visa versa. Best way I can explain it. I tend to walk with a little zig zag, cane helps. At times, I've told people I have peripheral neuropathy. I usually get…what's that? Lately, I just say I have a balance issue. Easier for others to understand. PN is very difficult to explain and others to understand. After all, we have problems understanding it. Stay well. Ed

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I don’t have numbness with my SFN, but I’m always uncomfortable. It’s like a very low voltage hum in my extremities. I tend to fidget and twist my legs and feet, wring my hands, to take my mind off of it, I guess? I’ve noticed that my sister, who has the same, hums with a little staccato rhythm.

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@njed

@ray666 – I too have idiopathic polyneuropathy – sensory and motor which gives me bad balance. The constant tight sock feeling is annoying but in past 3 years, balance is becoming the real problem and due to numbness in feet, any uneven surface is a problem. I' ve explained it this way. When you fall asleep in a chair and you wake up and your foot is "asleep", think about getting up and walk on an uneven surface. Your feet can't feel a height difference in the surface of the floor. You have numbness. It can throw you off balance. The signal from the feet to the brain gets lost and visa versa. Best way I can explain it. I tend to walk with a little zig zag, cane helps. At times, I've told people I have peripheral neuropathy. I usually get…what's that? Lately, I just say I have a balance issue. Easier for others to understand. PN is very difficult to explain and others to understand. After all, we have problems understanding it. Stay well. Ed

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Good morning, Ed

Thank you for your post. We've got a definite kinship when it comes to PN. You mention numbness in your feet several times. I hadn't thought I'd much, if any, numbness, but a recent EMG proved me wrong. I was shocked to see how many places I had little-to-no feeling. The upshot is I no longer tell people I've no numbness. I do! And your comparison to a foot "falling asleep" has proven to be more of a reality for me: If I sit reading or watching TV for more than a quarter-hour without once getting up and walking about, I have to be extra cautious when I stand; my balance will be at its least trustworthy at those moments. Also, I am becoming more and more of a homebody, preferring the familiar surfaces I've here at home to the unfamiliar. "A little zig zag" is a great expression! I may adopt it (along with my ship-at-sea analogy) as it perfectly describes my way of going about, with or without the assistance of a cane. If ever you have a spare moment, I'd love to hear what suggestions for reclaiming some measure of reliable balance your doctors have given you. In the meantime, however, thanks again for replying to my post.

Cheers!
Ray

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@ray666 – I happen to have drop foot caused by sensory motor PN. I was in physical therapy in early 2020 and my therapist felt that orthotics would help me with drop foot as they keep the ankle at more of a natural position, so the front of the foot doesn't get caught. Ottobock makes walk on flex which inserts into the shoe. It helped with my drop foot but as an added (big) plus is that these also improved my balance by 70% because much of the control comes from below my knee where I don't have neuropathy or very little PN. Without these on, I'm a mess. These were avail by prescription and at the time, my insurance company paid for them. Hope this is helpful.
Ed

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Hi Ray…thank you for your post…I check this site often and never see much about balance issues. I have idiopathic neuropathy…60 yr old male. As mine has progressed my balance has gotten worse…I walk every day…mine is aggravated by motion …the more I walk the worse it gets. Your ship analogy is good…I also equate it to having too much to drink…but no fun! I suspect this from autonomic system damage. ..do you have this? I also have some numbness in parts of feet/legs as well as aches/pains …and lots of fatigue. I fret over the future and therefore takes a mental toll as well. I would love to hear your entire story A-Z if you have the time. Thanks again for your post.
Steve

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@njed

@ray666 – I happen to have drop foot caused by sensory motor PN. I was in physical therapy in early 2020 and my therapist felt that orthotics would help me with drop foot as they keep the ankle at more of a natural position, so the front of the foot doesn't get caught. Ottobock makes walk on flex which inserts into the shoe. It helped with my drop foot but as an added (big) plus is that these also improved my balance by 70% because much of the control comes from below my knee where I don't have neuropathy or very little PN. Without these on, I'm a mess. These were avail by prescription and at the time, my insurance company paid for them. Hope this is helpful.
Ed

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Hello, Ed

Drip foot? Me too, too. (Can I say "too, too"?) Or I had a debilitating case some years ago. For several weeks, I clunked about town in a boot. My orthotics, however, pre-date my drop foot by many years, to my early adult years when I was a long-distance runner. Even now, as I zig zag about with my neuropathy (I told you I like that expression, "zig zag"), I have orthotics in all of my shoes. They certainly help with keeping ankles, knees, and hips in alignment. Without them, I'm sure my balance would be much worse. Unfortunately, my insurance doesn't pay for my orthotics; it may help "some," I'm just not sure. My orthotics, though, are not prescription (although I get them from my in-network pediatrist), so that may be the difference.

Stay well!
Ray

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@stallen

Hi Ray…thank you for your post…I check this site often and never see much about balance issues. I have idiopathic neuropathy…60 yr old male. As mine has progressed my balance has gotten worse…I walk every day…mine is aggravated by motion …the more I walk the worse it gets. Your ship analogy is good…I also equate it to having too much to drink…but no fun! I suspect this from autonomic system damage. ..do you have this? I also have some numbness in parts of feet/legs as well as aches/pains …and lots of fatigue. I fret over the future and therefore takes a mental toll as well. I would love to hear your entire story A-Z if you have the time. Thanks again for your post.
Steve

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I wish you luck going forward. I am now 85 and the numbness and balance have got much worse since I turned 80. I can shuffle around the house without a cane but need a cane or rollator walking outside.

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@stallen

Hi Ray…thank you for your post…I check this site often and never see much about balance issues. I have idiopathic neuropathy…60 yr old male. As mine has progressed my balance has gotten worse…I walk every day…mine is aggravated by motion …the more I walk the worse it gets. Your ship analogy is good…I also equate it to having too much to drink…but no fun! I suspect this from autonomic system damage. ..do you have this? I also have some numbness in parts of feet/legs as well as aches/pains …and lots of fatigue. I fret over the future and therefore takes a mental toll as well. I would love to hear your entire story A-Z if you have the time. Thanks again for your post.
Steve

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Hi, Steve (@stallen)

You and I both: idiopathic neuropathy. Mine also progresses the more I do, not only walking (which, sadly, I now do very little of), but also basic household chores. My neurologist administered an EMG and told me I have a certain measure of nerve damage in my feet. In the past, whenever I'd been asked if I had numbness in my feet, I'd say, I don't think so. The EMG proved me wrong. I have a cane, but I'm not very proficient at using it; I tote it more like a riding crop. Among my major complaints, linking to my neuropathy, is leg weakness: leg weakness is my biggest problem after "doing too much" (things that hadn't been "too much" only a few years ago). As you may know from my profile, I'm 78, but –– if it weren't for the neuropathy –– a hale & hearty 78. I used to be a long-distance runner, pretty good one, too (ironic, isn't it, that now I shy away even from walking). If you and I bounce a few posts back & forth, I'll be happy to tell you more about my experience. Also, about the many different kinds of doctors I've seen and their various suggestions as to how I might reclaim even a little bit of trustworthy balance. (So as not to get your hopes up, nothing so far has been a cure. Regular PT, which I do here at home –– an online program –– has helped somewhat.) Thanks for writing, Steve! Let's keep talking.

Cheers!
Ray

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Ray,
I started noticing leg sensations and perceived weakness back in 2017…neurologist did blood work, brain, neck and lumbar scans as well as NCS/EMG. Eventually neuropathy showed up…although she never said what type. My own research tells me it must be large fiber type as the NCS/EMG showed it.
A few years later I tested positive for some autonomic neuropathy. While the neurologist said she doesn’t know cause, I am pre-diabetic…some studies show that could be a cause. The neurologist provides little suggestions. As I mentioned previously, it has continued to gradually progress with more numbness, weakness and fatigue. Im still able to walk daily ( a couple miles max) but it’s getting tougher and balance has worsened lately. I’ve had undiagnosed motion/ balance issues since late 20’s which magnifies the issue.
Thinking back I think there were signs prior to 2017…likely small fiber…the neurologist told me once if you have small fiber ( or large)…you have or will have the other. Ray, were you tested for autonomic neuropathy?
Steve

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@ray666

Hello, Ed

Drip foot? Me too, too. (Can I say "too, too"?) Or I had a debilitating case some years ago. For several weeks, I clunked about town in a boot. My orthotics, however, pre-date my drop foot by many years, to my early adult years when I was a long-distance runner. Even now, as I zig zag about with my neuropathy (I told you I like that expression, "zig zag"), I have orthotics in all of my shoes. They certainly help with keeping ankles, knees, and hips in alignment. Without them, I'm sure my balance would be much worse. Unfortunately, my insurance doesn't pay for my orthotics; it may help "some," I'm just not sure. My orthotics, though, are not prescription (although I get them from my in-network pediatrist), so that may be the difference.

Stay well!
Ray

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Ray – As it is often said, each person has to figure out what works best for her or his particular situation. I'm glad you were able to find orthotics that help you. I am finding one thing a little odd lately. I have the feeling that the neuropathy tends to level off for a while, then a change takes place…normally not better. My last change which involved worse balance in conjunction with increased neuropathy took place around early November. The increase was in neuropathy where it already exists, below knee but not moving upward towards knee. Been same for about 4 months.

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