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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.

albiet | @albiet | Feb 10, 2020
In reply to @healingone "I have Neuropathy, but I am not to the point you are yet. Has Mayo assessed..." + (show)
@healingone

I have Neuropathy, but I am not to the point you are yet.

Has Mayo assessed you for Chronic Pain Syndrome?

Mayo has an excellent Pain and Rehabilitation Program if you qualify to attend the 3 week training.

Have a great day!

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@healingone can you tell me what they do in the program ?

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3 replies
lioness | @lioness | Feb 10, 2020
In reply to @rwinney "Hello. Who is your post meant for? Rachel" + (show)
@rwinney

Hello. Who is your post meant for?
Rachel

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@rwinney This has been a problem long standing We all need to address this way @lioness then I know it's for me You put this before the body of your comments Hope people read this makes it much easier then trying to desiver who it's for.Glad you asked this Linda Are you feeling any better

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 10, 2020
In reply to @healingone "I have Neuropathy, but I am not to the point you are yet. Has Mayo assessed..." + (show)
@healingone

I have Neuropathy, but I am not to the point you are yet.

Has Mayo assessed you for Chronic Pain Syndrome?

Mayo has an excellent Pain and Rehabilitation Program if you qualify to attend the 3 week training.

Have a great day!

Jump to this post

Yes, I too am interested to hear more about the program if you can share more detail. Thank you - Rachel

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Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 10, 2020
In reply to @healingone "I have Neuropathy, but I am not to the point you are yet. Has Mayo assessed..." + (show)
@healingone

I have Neuropathy, but I am not to the point you are yet.

Has Mayo assessed you for Chronic Pain Syndrome?

Mayo has an excellent Pain and Rehabilitation Program if you qualify to attend the 3 week training.

Have a great day!

Jump to this post

Curious if they accept Medicare? I have been turned down already for evaluation by Mayo last year.

REPLY
2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 10, 2020
In reply to @lioness "@rwinney This has been a problem long standing We all need to address this way @lioness..." + (show)
@lioness

@rwinney This has been a problem long standing We all need to address this way @lioness then I know it's for me You put this before the body of your comments Hope people read this makes it much easier then trying to desiver who it's for.Glad you asked this Linda Are you feeling any better

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Yes, much better than yesterday. Thank you.

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johnhans | @johnhans | Feb 10, 2020
In reply to @rwinney "Curious if they accept Medicare? I have been turned down already for evaluation by Mayo last..." + (show)
@rwinney

Curious if they accept Medicare? I have been turned down already for evaluation by Mayo last year.

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@rwinney the way it was explained to me last year was that Mayo does accept Medicare, but the different departments have differing amounts of people they accept for Medicare. Mayo is very popular and cannot accept everyone for every department. Thus even non Medicare patients may be turned away. I believe the best way would be to have your doctor refer you to Mayo and see what happens. There is also a phone number to call about being admitted. Some one on here probably knows more about this.

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1 reply
healingone | @healingone | Feb 10, 2020
In reply to @albiet "@healingone can you tell me what they do in the program ?" + (show)
@albiet

@healingone can you tell me what they do in the program ?

Jump to this post

If your search Mayo Pain and Rehabilitation Program on Connect, there is a video, Mayo Clinic Comprehensive Pain Rehabilitation Center in Jacksonville, Florida.

I am not able to post links yet.

On YouTube, Dr. Sluten has a Central Sensitization video. Central Sensitization is what the program treats.

Have a great day!

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Feb 10, 2020
In reply to @rwinney "May I ask anyone out there...if you also experience uncontrollable temperature regulation, flush skin/ face, dizziness?..." + (show)
@rwinney

May I ask anyone out there...if you also experience uncontrollable temperature regulation, flush skin/ face, dizziness? I have experienced all of these symptoms for several years and understand that it's part of my autonomic and sensory neuropathic discomforts. Ruled out menopause as I was greatly confused for some time.

Also, and I believe @jimhd suffers from this...my newest "trick" is swallowing discomfort and pain. It began last September and I thought it was happening because of dense food (peanut butter sandwhich) but has now progressed to happening with a simple sip of water. My esophagus feels every bit go down from a tiny pill to a chunk of meat. There are times when the food or pill feels as if it lingers in the top of my stomach or at the sides of my throat. I now need to cut food smaller, chew longer and drink more. Still, I'm very uncomfortable for the next 1-2 hours. I never choke but the sensations are there. Sometimes more noticeable than others. Overall it's discomfort but there can be pain that makes me feel like I need to stand tall and elongate my body for things to pass through. Have doubled over from it too.

My research tells me it's muscle weakness from SFPN, which explains the inconsistency, verses digestive problems. Either way, I'm back with a gastroenterologist while tryng to figure out my "chronic copper poisoning" for the past year and going for an esophogram with endoscopy on tap.

Come one, come all with any thoughts, experiences or advice on any if this. I probably should have started a new thread.

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@rwinney, Your new "trick" has been around my neighborhood for more than a year. It started when I flew home to CA right before the big fire last summer. My granddaughter drove me up the mountain.

Shortly after we arrived, we got the notice to evacuate. We were just finishing our breakfast at the Plant Food Supper Club (cool place). I was pretty anxious and that is when it started...could not swallow and I panicked because of the discomfort. My granddaughter told me not to talk so much and it would get better because I was sucking air too fast........and I think she was right. Evidently I was taking in too much air because of the anxiety. Now I know how to stop the esophageal swallowing issue. If I have problems, a few moments of MFR (myofascial release therapy) will calm everything down. My MFR therapist told me it is not an uncommon problem. First step to try is meditation. Just ramp everything down.....
Be at ease with your body. Chris

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1 reply
Robin | @birdierobin | Feb 10, 2020
In reply to @rwinney "Curious if they accept Medicare? I have been turned down already for evaluation by Mayo last..." + (show)
@rwinney

Curious if they accept Medicare? I have been turned down already for evaluation by Mayo last year.

Jump to this post

They are excepting my Medicare I understand

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Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 10, 2020
In reply to @artscaping "@rwinney, Your new "trick" has been around my neighborhood for more than a year. It started..." + (show)
@artscaping

@rwinney, Your new "trick" has been around my neighborhood for more than a year. It started when I flew home to CA right before the big fire last summer. My granddaughter drove me up the mountain.

Shortly after we arrived, we got the notice to evacuate. We were just finishing our breakfast at the Plant Food Supper Club (cool place). I was pretty anxious and that is when it started...could not swallow and I panicked because of the discomfort. My granddaughter told me not to talk so much and it would get better because I was sucking air too fast........and I think she was right. Evidently I was taking in too much air because of the anxiety. Now I know how to stop the esophageal swallowing issue. If I have problems, a few moments of MFR (myofascial release therapy) will calm everything down. My MFR therapist told me it is not an uncommon problem. First step to try is meditation. Just ramp everything down.....
Be at ease with your body. Chris

Jump to this post

So much to this life! I liked it wayyyy better when I was young and naive. 😉

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