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.

I'm a little late to this discussion, but the symptoms you describe in your legs pretty much describes my feet. Truth be told, the aches and pains in my feet started YEARS before the burning set in. Medical practitioners were always trying to get me to describe and 'point' to where it hurt – but that was impossible because the pain was constantly moving from place to place, and the sensations were constantly changing. Since I've been taking Gabapentin, I've noticed that the only issues that remains with my feet is a stiffness. Even that had disappeared for the first week on 300 mg, but it has returned. Thankfully – the actual pain has not…

REPLY
@iceblue

I'm a little late to this discussion, but the symptoms you describe in your legs pretty much describes my feet. Truth be told, the aches and pains in my feet started YEARS before the burning set in. Medical practitioners were always trying to get me to describe and 'point' to where it hurt – but that was impossible because the pain was constantly moving from place to place, and the sensations were constantly changing. Since I've been taking Gabapentin, I've noticed that the only issues that remains with my feet is a stiffness. Even that had disappeared for the first week on 300 mg, but it has returned. Thankfully – the actual pain has not…

Jump to this post

It forever remains a challenge, doesn't It? My aching is part but also severe cramping, burning pain and new sensations appear. I'd like to say the Lyria, Cymbalta and hydro work however, do they really? There are so many shifts in my body with new symptoms and pains that I'm baffled but, afraid to drop any current meds out of fear things will get worse than they already are. Its sad that I dont want to get up today because I fear for my body and what the day brings. Its quite exhausting and drains me most days. Not one part of my body has been left alone for freedom. Quality of life is diminishing more than it already was and I'm patiently waiting for the next attempt at relief through medical cannabis. Im getting referred to a medical marijuana state licensed PCP. Another move, if I drop my lidocaine infusions, is plasmapherisis. I just don't know anymore…no-one speaks of this procedure on the forum so again it remains a mystery and an individual crap shoot. Will it help, won't it help??? All trial and error for each individual. I will continue to trudge on as I preach we must do and those before me remind me we must do. Im at a point now where I'm tired of masking the pain and I want to be a part of healing and forward progress…its just not time yet.

REPLY
@rwinney

It forever remains a challenge, doesn't It? My aching is part but also severe cramping, burning pain and new sensations appear. I'd like to say the Lyria, Cymbalta and hydro work however, do they really? There are so many shifts in my body with new symptoms and pains that I'm baffled but, afraid to drop any current meds out of fear things will get worse than they already are. Its sad that I dont want to get up today because I fear for my body and what the day brings. Its quite exhausting and drains me most days. Not one part of my body has been left alone for freedom. Quality of life is diminishing more than it already was and I'm patiently waiting for the next attempt at relief through medical cannabis. Im getting referred to a medical marijuana state licensed PCP. Another move, if I drop my lidocaine infusions, is plasmapherisis. I just don't know anymore…no-one speaks of this procedure on the forum so again it remains a mystery and an individual crap shoot. Will it help, won't it help??? All trial and error for each individual. I will continue to trudge on as I preach we must do and those before me remind me we must do. Im at a point now where I'm tired of masking the pain and I want to be a part of healing and forward progress…its just not time yet.

Jump to this post

@rwinney Hi Dear Rachel, You feel awful. How to live this way? You take many drugs, but all in all, they do not work very well, and you fear getting out of bed. My heart feels broken, reading/feeling your suffering. I have had a horrid week. I wake up hopeful, and before my eyes are barely both open, the pain sets in. Only Kratom really works, and it is addictive. I have to be so careful with it. Bottom line for this neuropathic stuff, is there are no answers, no drugs, that totally take pain away. I wish I could wave a magic wand, and cure both of us. I know I am better when I walk, but who can walk all day? And why am I better walking? You are so smart, and you work so hard at this. That in itself is exhausting. I have been reading about brain/central pain. Our pain mechanism works too loudly. It is over amplified, and will not stop. I tell myself I am ok, that I do not need pain. That I am safe and well. I "tap," away pain, which sometimes even works. I roll golf balls under my feet. I smoke reifer. I know we are lovely, loving people. Who would ever believe this? I am giving you a hug. I am telling you to cry, and let go. Destress, at least. I am thinking about what to take to get me through the morning. I think, CBD drops. I save Kratom for when I just cannot take it anymore. I hope marijuana works for you. I will get the medical kind when marijuana becomes legal here in Illinois in January. What can I say to you, Rachel? Only that I am here listening and feeling you. Maybe turn on some music, and try to drift to sleep. I wish I had one good answer. Kratom is one good answer, but it scares you. I don't blame you. It scares me. But I take heed, and take it when I must. Your soul is a joy. That I know. Lori Renee

REPLY
@lorirenee1

@rwinney Hi Dear Rachel, You feel awful. How to live this way? You take many drugs, but all in all, they do not work very well, and you fear getting out of bed. My heart feels broken, reading/feeling your suffering. I have had a horrid week. I wake up hopeful, and before my eyes are barely both open, the pain sets in. Only Kratom really works, and it is addictive. I have to be so careful with it. Bottom line for this neuropathic stuff, is there are no answers, no drugs, that totally take pain away. I wish I could wave a magic wand, and cure both of us. I know I am better when I walk, but who can walk all day? And why am I better walking? You are so smart, and you work so hard at this. That in itself is exhausting. I have been reading about brain/central pain. Our pain mechanism works too loudly. It is over amplified, and will not stop. I tell myself I am ok, that I do not need pain. That I am safe and well. I "tap," away pain, which sometimes even works. I roll golf balls under my feet. I smoke reifer. I know we are lovely, loving people. Who would ever believe this? I am giving you a hug. I am telling you to cry, and let go. Destress, at least. I am thinking about what to take to get me through the morning. I think, CBD drops. I save Kratom for when I just cannot take it anymore. I hope marijuana works for you. I will get the medical kind when marijuana becomes legal here in Illinois in January. What can I say to you, Rachel? Only that I am here listening and feeling you. Maybe turn on some music, and try to drift to sleep. I wish I had one good answer. Kratom is one good answer, but it scares you. I don't blame you. It scares me. But I take heed, and take it when I must. Your soul is a joy. That I know. Lori Renee

Jump to this post

I feel your pain way more than I want to! Crawl into bed oh feel the burn and finally go to sleep despite pain,wake up way too many times. Keep moving stretching any trick to help,wish i had treats! When morning comes there it is lurking building momentum to scream all day
but we do keep moving don't we?

REPLY
@notborntoburn

I feel your pain way more than I want to! Crawl into bed oh feel the burn and finally go to sleep despite pain,wake up way too many times. Keep moving stretching any trick to help,wish i had treats! When morning comes there it is lurking building momentum to scream all day
but we do keep moving don't we?

Jump to this post

Yes, we do.

REPLY
@lorirenee1

@rwinney Hi Dear Rachel, You feel awful. How to live this way? You take many drugs, but all in all, they do not work very well, and you fear getting out of bed. My heart feels broken, reading/feeling your suffering. I have had a horrid week. I wake up hopeful, and before my eyes are barely both open, the pain sets in. Only Kratom really works, and it is addictive. I have to be so careful with it. Bottom line for this neuropathic stuff, is there are no answers, no drugs, that totally take pain away. I wish I could wave a magic wand, and cure both of us. I know I am better when I walk, but who can walk all day? And why am I better walking? You are so smart, and you work so hard at this. That in itself is exhausting. I have been reading about brain/central pain. Our pain mechanism works too loudly. It is over amplified, and will not stop. I tell myself I am ok, that I do not need pain. That I am safe and well. I "tap," away pain, which sometimes even works. I roll golf balls under my feet. I smoke reifer. I know we are lovely, loving people. Who would ever believe this? I am giving you a hug. I am telling you to cry, and let go. Destress, at least. I am thinking about what to take to get me through the morning. I think, CBD drops. I save Kratom for when I just cannot take it anymore. I hope marijuana works for you. I will get the medical kind when marijuana becomes legal here in Illinois in January. What can I say to you, Rachel? Only that I am here listening and feeling you. Maybe turn on some music, and try to drift to sleep. I wish I had one good answer. Kratom is one good answer, but it scares you. I don't blame you. It scares me. But I take heed, and take it when I must. Your soul is a joy. That I know. Lori Renee

Jump to this post

Thank Lori Renee. Your words are helpful, as usual, and I appreciate them very much. We will all keep persevering because we're strong.
Thanks again. I wish you well.
Rachel

REPLY
@rwinney

Thank Lori Renee. Your words are helpful, as usual, and I appreciate them very much. We will all keep persevering because we're strong.
Thanks again. I wish you well.
Rachel

Jump to this post

Rachel, I hope you manage a decent sleep tonight. Tomorrow, we strive again. God Bless you. Lori Renee

REPLY

I have it too. My. Legs are like dead weight
Can't walk far. Put on 35 lbs… feeling like crap

REPLY
@pell

I have it too. My. Legs are like dead weight
Can't walk far. Put on 35 lbs… feeling like crap

Jump to this post

Im sorry to hear that but, yes, exactly. I have used those very words, dead weight, to describe how my legs feel to my husband. My walking is limited by both pace and distance. There have been a variety of changing sensations, feelings and discomforts. Not that I just like to sit around complaining because I don't but, dang it does indeed throw curve balls and boggle the mind. Hang in there. Im hoping comfort in numbers helps you and everyone else who posts.
Rachel

REPLY
@rwinney

Im sorry to hear that but, yes, exactly. I have used those very words, dead weight, to describe how my legs feel to my husband. My walking is limited by both pace and distance. There have been a variety of changing sensations, feelings and discomforts. Not that I just like to sit around complaining because I don't but, dang it does indeed throw curve balls and boggle the mind. Hang in there. Im hoping comfort in numbers helps you and everyone else who posts.
Rachel

Jump to this post

That freaks me out a bit. When diagnosed a few months ago, the FIRST question I asked the neurologist was: Will this eventually impact my mobility? Am I going to end up in a wheelchair? He did not hesitate and was very confident when he said No.

My diagnosis came about when chatting with my doctor and complaining about the weight I had gained when I quit smoking several months before. He suggested I walk to help lose weight. I told him I couldn't because of my painful feet – which had been going on for years. I then mentioned that the pain was now even waking me up in the middle of the night. Next thing I knew he had referred me for a nerve conduction test, and here I am…

Sadly, I've only had this doctor for about a year, and he told me at our last visit that he will be moving :'( I *think* another doctor is taking over his practice, but I will have to double check on that when I see him for the last time.

REPLY
Please sign in or register to post a reply.