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Aching legs from Small Fiber Neuropathy

Posted by Rachel, Volunteer Mentor @rwinney, Oct 23, 2019

One of my relentless symptoms from neuropathy is profusely aching legs. Does anyone share this symptom with me? At times I wonder if it could be another issue. They hurt so bad and create pain when walking continuously. Both legs feel heavy, tired and can't get much mileage. When I walk it's as though they are full of lead and they make me go at a turtles pace. If I stop and don't move they may settle a bit but then same old situation as I walk again. Only relief is being elevated and wrapped with heat or soaking in warm water. That buys me maybe a half hour or an hour tops. Same goes for any topicals. A tight wrap feels good almost like a weighted blanket does. Something about tightening the muscles does too.
I appreciate comments or feed back you may have to share on this.
Thanks all,
Rachel

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

terrydclaar | @terrydclaar | Feb 21, 2020
In reply to @rwinney "In light of this post and a few others of mine, heres my update: Went to..." + (show)
@rwinney

In light of this post and a few others of mine, heres my update:

Went to my existing Neuro for additional relief options and questioned plasmapherisis and IVIG. He said, auto immune doesn't line up with my case (based on last years spinal tap) however offered to send me to his colleague as I had requested updated EMG/Nerve Conduction study (last done 2 years ago).

After the 2 drs reviewed my case...I was told again that I don't line up for IVIG (immune deficiency) however, they will oblige me by conducting a new study. I asked, how about plasmapherisis then??? The response I received was, let's just do the new study first.

Who knows...the muscle weakness through my whole body has declined and not that I want to go through the miserable test again, I feel it should be ruled out. Maybe it'll be fine and my weakness is simply SFPN.

Questions for anyone out there...

1. Have you had EMG/Nerve Conduction study results change over time and become positive after a re-do?

2. Have you received plasmapherisis and what were your results?

Thank you
Rachel

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Rachel, I will be having repeat EMG tests run on my leg and arm in April. Last done 7 years ago. Will let you know how my results compare.

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terrynelson22 | @terrynelson22 | Jun 10, 2021

Yes my SFN effects my legs very achy, weak and feeling off balance.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jun 10, 2021
In reply to @terrynelson22 "Yes my SFN effects my legs very achy, weak and feeling off balance." + (show)
@terrynelson22

Yes my SFN effects my legs very achy, weak and feeling off balance.

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Hello @terrynelson22, Welcome to Connect. Thanks for sharing your small fiber neuropathy symptoms. Can you share what types of treatments you are using or have tried to help with your symptoms?

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1 reply
janstar61 | @janstar61 | Jun 11, 2021
In reply to @terrynelson22 "Yes my SFN effects my legs very achy, weak and feeling off balance." + (show)
@terrynelson22

Yes my SFN effects my legs very achy, weak and feeling off balance.

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yes, feels almost like a tooth ache but in my legs

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1 reply
Doug K | @dck | Jun 11, 2021

I was diagnosed with idiopathic SFN two years ago. My legs are currently achy, heavy, and tired feeling. My feet are dumb but not completely so. I find that a warm bath in the evening helps along with a topical spray called "That Stuff for Pain". I use it in the evenings when my symptoms are a little more pronounced. Going on walks during the day is also effective. I thought that I would try some CBD topical cream. Just bought one that is 500 mg THC and 25 mg CBD. Fingers crossed....

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2 replies
terrynelson22 | @terrynelson22 | Jun 11, 2021
In reply to @johnbishop "Hello @terrynelson22, Welcome to Connect. Thanks for sharing your small fiber neuropathy symptoms. Can you share..." + (show)
@johnbishop

Hello @terrynelson22, Welcome to Connect. Thanks for sharing your small fiber neuropathy symptoms. Can you share what types of treatments you are using or have tried to help with your symptoms?

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I am taking 50mg Irwin Naturals CBD I am allergic to all the pharmaceutical drugs my neurologist has prescribed. My SFN was caused by a toxic anaphylactic reaction to a skin chemo cream, Efudex. That was in 2009 since then I am extremely sensitive to all medications even Tylenol. The CBD helps but I still have a lot of pain at night, since taking the CBD it definitely has helped but not a cure!

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jun 11, 2021
In reply to @terrynelson22 "I am taking 50mg Irwin Naturals CBD I am allergic to all the pharmaceutical drugs my..." + (show)
@terrynelson22

I am taking 50mg Irwin Naturals CBD I am allergic to all the pharmaceutical drugs my neurologist has prescribed. My SFN was caused by a toxic anaphylactic reaction to a skin chemo cream, Efudex. That was in 2009 since then I am extremely sensitive to all medications even Tylenol. The CBD helps but I still have a lot of pain at night, since taking the CBD it definitely has helped but not a cure!

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@terrynelson22, Thanks for sharing a little more about your small fiber neuropathy and what you've found that helps you. There is another discussion where other members have shared their diagnosis and what has helped them. You might want to read through the discussion and post your own story.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 11, 2021
In reply to @dck "I was diagnosed with idiopathic SFN two years ago. My legs are currently achy, heavy, and..." + (show)
@dck

I was diagnosed with idiopathic SFN two years ago. My legs are currently achy, heavy, and tired feeling. My feet are dumb but not completely so. I find that a warm bath in the evening helps along with a topical spray called "That Stuff for Pain". I use it in the evenings when my symptoms are a little more pronounced. Going on walks during the day is also effective. I thought that I would try some CBD topical cream. Just bought one that is 500 mg THC and 25 mg CBD. Fingers crossed....

Jump to this post

Hello @dck, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing what has helped you. Do you have pain along with the numbness from your small fiber neuropathy?

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1 reply
Doug K | @dck | Jun 11, 2021
In reply to @johnbishop "Hello @dck, Welcome to Connect, an online community where patients and caregivers share their experiences, find..." + (show)
@johnbishop

Hello @dck, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing what has helped you. Do you have pain along with the numbness from your small fiber neuropathy?

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I have some discomfort in my calves. From mid-afternoon onward. My feet are better described as achy as opposed to painful.

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jun 11, 2021
In reply to @janstar61 "yes, feels almost like a tooth ache but in my legs" + (show)
@janstar61

yes, feels almost like a tooth ache but in my legs

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Hi there...I just want to acknowledge your description of SFN in your legs. That is exactly the way mine feel in the morning. They also feel a little heavy. I truly have to lie in bed until the achy heaviness goes away and I can tackle my day. Do you use any topicals or other medication to get your legs to sit up and take notice n the morning?

May you be safe, protected and free.
Chris

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