Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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

@parkerjean

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???

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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?

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@johnbishop

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?

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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.

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@jeffrapp

Hi @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

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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.

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@centre

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.

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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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@drs22

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.

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I have PN in my right lower leg and also have stiffness and tightness across the mid foot, sometimes reaching to my big toe (especially) and other toes. I do ankle stretching exercises on a stair step every day. I’ve watched my actual ankle range of motion and I’ve come to the conclusion that the sensory information the damaged nerves are sending me is NOT accurate. Those nerves are yelling stiffness and tightness, but I actually have better range on the affected ankle, probably due to all that stretching! Massage does nothing for the feeling of tightness, compression hose is more for swelling. I really believe I am being hornswoggled by those damaged nerves. So, I try to ignore them and keep on with life!

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@centre

I have PN in my right lower leg and also have stiffness and tightness across the mid foot, sometimes reaching to my big toe (especially) and other toes. I do ankle stretching exercises on a stair step every day. I’ve watched my actual ankle range of motion and I’ve come to the conclusion that the sensory information the damaged nerves are sending me is NOT accurate. Those nerves are yelling stiffness and tightness, but I actually have better range on the affected ankle, probably due to all that stretching! Massage does nothing for the feeling of tightness, compression hose is more for swelling. I really believe I am being hornswoggled by those damaged nerves. So, I try to ignore them and keep on with life!

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Interesting. It goes along with what PT told me yesterday. They told me to keep doing the exercises they provided even though I don't think they are doing anything. They said that I am training my foot even though I may not be totally aware. Keep on!

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@centre

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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Thanks so much!
It was the mesh that attracted me.
BTW, are these all low cost Uggs? If so, are they the same quality?

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@jeffrapp

Thanks so much!
It was the mesh that attracted me.
BTW, are these all low cost Uggs? If so, are they the same quality?

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They aren't very low cost- $69.99-99.99, but well worth it- very good quality of materials and workmanship. I looked at a lot of slippers, with PN the slip-on scuff style doesn't work as they'll start to slide off without you being aware due to the numbness. You need a slipper with a stiff back for the same reason, too many shoes have soft backs that become crushed down over time, then the sliding off can happen. The non-skid sole was important as my balance is not the best. I was afraid the sheepskin-type lining would be thick and hot, but it's not, just enough for soft comfort.

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Hi my name is Sydney, I have Peripheral Neuropathy, Somedays go well that is to say I can forget about the discomfort. It comes back in the evening I have to remove my socks and some days I can't even put my feet under the Sheets & blankets. I feel at times like I'm walking on nails or pins and needles. The one drug which helps in a smaller way is Pregabalin at 400 mg. Which is a lot, I get dizzy and want to fall asleep. During the day I take 5 mg of Hydrocodone. I've tried oils and creams they help but they don't last very long, hours.

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@mayosloke417

Hi my name is Sydney, I have Peripheral Neuropathy, Somedays go well that is to say I can forget about the discomfort. It comes back in the evening I have to remove my socks and some days I can't even put my feet under the Sheets & blankets. I feel at times like I'm walking on nails or pins and needles. The one drug which helps in a smaller way is Pregabalin at 400 mg. Which is a lot, I get dizzy and want to fall asleep. During the day I take 5 mg of Hydrocodone. I've tried oils and creams they help but they don't last very long, hours.

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Good evening @mayosloke417. Welcome to Connect. Thank goodness for those "somedays" when you can forget about the discomfort of (PN) Peripheral Neuropathy. I understand about the dizzyness of Pregabalin. I ended up only able to use Gabapentin at nighttime because of the dizziness if I use it during the day.

Sydney, have you visited with a specialist or other clinician to evaluate and confirm your diagnosis? Did you have a skin biopsy or do you have the results of other nerve function tests? That might be helpful as you seek other medications.

You also mentioned using topicals and found them to be a little on the short side timewise. Have you explored medical cannabis at this point? Is it available to you where you live?

How long have you had PN?

May you be safe, protected, and free of inner and outer harm.
Chris

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@aliskahan

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?

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I was diagnosed with peripheral neuropathy after knee replacement surgery. I have tried PT, acupuncture, CBD oil, stimulation to my spine.
However, has anyone tried LDN for neuropathy?
Please if you have let me know.

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@sikocesca

I was diagnosed with peripheral neuropathy after knee replacement surgery. I have tried PT, acupuncture, CBD oil, stimulation to my spine.
However, has anyone tried LDN for neuropathy?
Please if you have let me know.

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@sikocesca, There are a few discussions where members have shared their experience with Low Dose Naltrexone (LDN).

— Low-Dose Naltrexone for Chronic Pain: https://connect.mayoclinic.org/discussion/low-dose-naltrexone-for-chronic-pain/
— Success with low dose naltrexone for Autoimmune disorders: https://connect.mayoclinic.org/discussion/anyone-familiar-with-low-dose-naltrexone/
— Anyone with experience using Low Dose Naltrexone?: https://connect.mayoclinic.org/discussion/anyone-with-experience-using-low-dose-naltrexone/

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