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Small Fiber Neuropathy: What helps?

Posted by lisadog33 @lisadog33, Mar 28, 2017

I have been diagnosed with Small Fiber Neuropathy. My problem is this. Since before they diagnosed me, I was having other symptoms that I thought were not related including loss of appetite/weight loss, bladder control, bowel control, problem with eyesight at times, tremors, sleep issues among some other things. I was told by my Neurologist that those things are not related to small fiber neuropathy but when I look it up, it says it can affect your autonomic nervous system. What is the truth. I am having a heck of a time with bladder and bowel issues as well as either sleeping through the alarm or not sleeping at all. I hope someone can shed some light on this for me. Thank you.

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

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Doug K | @dck | Dec 19, 2021

I have idiopathic SFN. It began four years ago. I have found that exercise helps but I'm not sure that the exercises I am doing are tartgeting the problem in the best way. Can anyone point me to the best exercises for the condition?

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Mentor
John, Volunteer Mentor | @johnbishop | Dec 19, 2021
In reply to @dck "I have idiopathic SFN. It began four years ago. I have found that exercise helps but..." + (show)
Profile picture for Doug K @dck

I have idiopathic SFN. It began four years ago. I have found that exercise helps but I'm not sure that the exercises I am doing are tartgeting the problem in the best way. Can anyone point me to the best exercises for the condition?

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There are a couple of discussions that you might find helpful on the topic...
-- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
-- Water Exercise for Peripheral Neuropathy: https://connect.mayoclinic.org/discussion/water-exercise-for-peripheral-neuropathy/
-- Peripheral Neuropathy - Stretching and Exercise: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-stretching-and-exercise/

The Foundation for Peripheral Neuropathy had a webnar last year and it's now on YouTube and might provide some suggestions.

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kfrenc04 | @kfrenc04 | Feb 4, 2022
In reply to @kanaazpereira "Hello @lisadog33, I'm truly sorry to learn about your diagnosis; however, as you will see, you've..." + (show)
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Hello @lisadog33,

I'm truly sorry to learn about your diagnosis; however, as you will see, you've landed in a great community here. First, I'd like to introduce you to one of our Mentors, @johnbishop who has written extensively about small fiber neuropathy (SFN), and has share his experiences in many of the groups on Connect. If you wish, you can view a few discussions, here:

- Anyone here dealing with peripheral neuropathy? http://mayocl.in/2oeHFAG
- Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain? http://mayocl.in/2oeSra7
-Does anyone have a treatment for Neuropathy due to chemo http://mayocl.in/2o96rVU

If you scroll through these discussions, you will see that John has provided some excellent links to resources.
I'd also like to tag @magg @cjkressin @brie87144 @islandhippy @lucille @rabbit10 @emilyanne @medic7054 @fleure @martid @painwarrior, as I'm sure they will have more insight for you.

With regard to your concern about the other symptoms, here's what I found: According to this NIH (National Institutes of Health) page, http://bit.ly/2nyTseH, " some affected individuals have urinary or bowel problems, episodes of rapid heartbeat (palpitations), dry eyes or mouth, or abnormal sweating. They can also experience a sharp drop in blood pressure upon standing (orthostatic hypotension), which can cause dizziness, blurred vision, or fainting."

Are you taking any medication for pain, @lisadog33? Do your symptoms get worse/better at certain times of the day or night?

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Everything is pretty much constant. I don’t take any meds for this either.

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kfrenc04 | @kfrenc04 | Feb 4, 2022
In reply to @ashlely "I have non diabetic peripheral neuropathy caused by dermatologist injections in legs and feet in 2007,..." + (show)
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I have non diabetic peripheral neuropathy caused by dermatologist injections in legs and feet in 2007, pain minimal but numbness bad and freezing feet. Want to tell everyone suffering from cold feet, before winter, to buy Old Friend Sheepskin bootie slippers. Are soft sole, warm and sheepskin soothing for sensitive skin. I wear them to bed and all day. Helps sleep constantly interrupted by feet.

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My feet hurt because they are cold all the time. I actually wear my Ugg boots during the day and that really helps.

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bcool123 | @bcool123 | May 1, 2022
In reply to @kfrenc04 "My feet hurt because they are cold all the time. I actually wear my Ugg boots..." + (show)
Profile picture for kfrenc04 @kfrenc04

My feet hurt because they are cold all the time. I actually wear my Ugg boots during the day and that really helps.

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My feet are also cold from neuropathy. I can’t wear UGGs because they are too narrow so I wear Rockdove Nomad slippers when I’m not in my New balance athletic shoes during the day. My feet get so cold at night I can’t sleep but I found Cozy Winters foot of bed heating pad that is larger than most heating pads so I don’t have to keep my feet in one spot. It also stays on for about six hours so I can sleep through most of the night. I find it getting up and walking every hour or so stimulate circulation and helps warm up my feet. I understand your discomfort and hopefully this will help.
Wishing you warmer feet,
Bcool123

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bcool123 | @bcool123 | May 1, 2022

I have Cold, cold feet and balance issues from peripheral neuropathy. Today I read a post about using evening primrose oil but now I can’t find the post. I also read hear about B12 injections. Wondering how much and how often?
I am very technically challenged so wonder if one of the volunteers can you help me with these things. I read reconnect every night and appreciate everyone’s input. Thank you, Brenda Cool
Bcool123 on Connect

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Chris, Alumni Mentor | @artscaping | May 2, 2022

Good evening @bcool123. Welcome to the Cold, cold feet club. I sure know what that feels like. It comes and goes, especially during the night.

Here is the discussion link for Primrose Oil. .https://www.salubrainous.com/evening-primrose-oil-for-neuropathy/

There is also an entire discussion with several members about Primrose oil. All you have to do is enter the following in quotes in the Search Box at the top of the screen. Write it with quotes e.g. "Primrose oil and neuropathy". That will take you to the posts about this subject wherever it occurs on Connect.

Let me know if you need more
help.

Chris

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Karen | @fue | May 2, 2022
In reply to @bcool123 "My feet are also cold from neuropathy. I can’t wear UGGs because they are too narrow..." + (show)
Profile picture for bcool123 @bcool123

My feet are also cold from neuropathy. I can’t wear UGGs because they are too narrow so I wear Rockdove Nomad slippers when I’m not in my New balance athletic shoes during the day. My feet get so cold at night I can’t sleep but I found Cozy Winters foot of bed heating pad that is larger than most heating pads so I don’t have to keep my feet in one spot. It also stays on for about six hours so I can sleep through most of the night. I find it getting up and walking every hour or so stimulate circulation and helps warm up my feet. I understand your discomfort and hopefully this will help.
Wishing you warmer feet,
Bcool123

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Have you tried Bearpaw boots. They are the same but cheaper. I wear mens Bearpaws as they are wider.

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trishh | @trishh | May 2, 2022
In reply to @bcool123 "My feet are also cold from neuropathy. I can’t wear UGGs because they are too narrow..." + (show)
Profile picture for bcool123 @bcool123

My feet are also cold from neuropathy. I can’t wear UGGs because they are too narrow so I wear Rockdove Nomad slippers when I’m not in my New balance athletic shoes during the day. My feet get so cold at night I can’t sleep but I found Cozy Winters foot of bed heating pad that is larger than most heating pads so I don’t have to keep my feet in one spot. It also stays on for about six hours so I can sleep through most of the night. I find it getting up and walking every hour or so stimulate circulation and helps warm up my feet. I understand your discomfort and hopefully this will help.
Wishing you warmer feet,
Bcool123

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I found using compression hose, knee highs, the kind I had posted hip replacement work along with diabetic circulation socks helps block cold and increases circulation.
I find that elevation of legs helps. But its is impossible to do all day. I hurt worse with legs in downward position such a sitting. Its frustrating! And so painful.

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gregoria | @gregoria | May 2, 2022

My feet get also very cold during the night but , on the contrary the get very red and sore when I walk during the day. My blood vessels are being affected on hands nd feet because of the neuropathy.. I don't know if exposute to sun ☀️ or the cold swimming water could be harmful or could do any good. Any advice?? My neuropathy is getting worse each day.. Last summer I wasn't feeling as much pain as today..

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