Aching legs from Small Fiber Neuropathy

Posted by rwinney @rwinney, Wed, Oct 23 4:43pm

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

@jeffrapp

Hi John
Wow! Just what you need. Another hard to diagnose and treat disease. I've never even heard of it.
Thanks for the references. Good luck in the Spring.
Jeff

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Thanks Jeff! Hopefully I will remember to come back here and provide some feedback. It would be interesting to hear what your neurologist thinks about the article.

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@johnbishop

Hi @jeffrapp and @rwinney — Here's the article Jeff was referring to:

Peripheral Nerve Fibers and Their Neurotransmitters in Osteoarthritis Pathology
https://www.mdpi.com/1422-0067/18/5/931

I can relate to it but I'm really not sure. I have osteopenia and degenerative disc disease. I've had trouble walking the past 4 or 5 years and it has gotten continually worse. @artscaping tagged me in a discussion on Camptocormia – https://connect.mayoclinic.org/discussion/camptocormia/?pg=5#comment-339304 which fit my symptoms to a T. My wife has told me I walked like an old man when I was in my 50s and now in my 70s it's become worse. I found more information on it and am planning to discuss it with my doctor at my next physical in the Spring to see if there is a treatment/therapy that will help before I get into the upright walker needed stage — https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6075991/

Thank you for sharing the article. Hoping I can take a deep dive reading and trying to understand this weekend.
John

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Thank you John!

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@helennicola

hi Lorirenee1, that is great that you get relief from Kratom; I tried googling Happy Hippo and get no results , nor can I find any on-line sure which sells it. What state do you live in? thanks, Helen

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@helennicola Hi Helen, It is happyhippoherbals.com So sorry. Had no idea it had herbals in the address. I live in Illinois. I know there are 5 states in which kratom is not allowed, but I do not know which ones, other than Wisconsin. If you order, order the slow strains that allude to pain relief. I am not sure if they say it directly. Also, anything called a Maeng Da, works for pain, even if it says it is a fast strain. Maeng Da is where the tree comes from in Asia. Maeng Da strains are great for pain. Happy Hippo has kind of a silly way of marketing the plant. I can tell you exactly what I buy, if you want to know. I also have another great company I buy from, right here in Illinois. They are also on line, but I do not know their address off hand. I can get it for you if you want it. I tend to go to their store. Fabulous. Good luck. Try some….. Lori Renee

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@rwinney

Hello and thank you for your kind words Lori Renee. Today is a better day…feeling stronger and PT went well. I will keep going and focus on legs. I have heard of tapping. Tried it for migraines but no such luck. I may not be patient enough.

I'm thinking hydrocodone is exacerbating my pain. Maybe thats why I have pain in all these places. It's a rotten drug in that way. I'm working towards weaning off after I get a back up plan. Meeting with Pain Management to duscuss Low Dose Naltrexone then getting referred to a prescribing Doctor for medical cannabis so I can learn, then weigh my options. I'm a play it safe girl, if you can't tell. Ha Ha. So, Kratom for me is out at this time.

Definitely sensations like sunburn are nerve induced. I also get vibrations at times and many other oddities…name of the game. However, Lyrica has helped reduce these things. Now I've upped my supplement game and following a protocol so hoping the Alpha Lioic Acid and Acetyl L Carnitine and others take over on helping.

No hydro yet today, fighting it and doing pretty good. Helps that I'm heading to my daughter's college for her for first basketball scrimmage! Can't wait to see her….BEST therapy yet!!!

Have a great day and find relief. Thanks so much for corresponding.

Rachel

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@rwinney Rachel, I hope you really enjoy your daughter's basketball! I just found out that I am going to have a grand daughter, so I am over the moon. My five year old grandson has wanted a sister for a few years now, so he is crazy excited. I am glad your day was better yesterday. I swear, there is little rhyme or reason, a good part of the time. I am pain free today!!!!! Last night, I took a walloping dose of CBD and salves to try to control God awful pain. In two hours, I could be in pain again. I cherish the pain free times. They are few. I hope you figure out your medications, and I do not blame you for not wanting to try Kratom. I just can't find anything that works as well! I still think it is good that you have information about it, cause ya never know. Let me know how your meds work out, keep up with the leg exercises regularly, if only for a bit each day. Being pain warriors is nothing we ever signed up for, that's for sure!!!! Maybe the protocol you are doing will help. You help so many people! You deserve to feel better yourself!!! God Bless you……. Lori Renee

Liked by rwinney

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@rwinney

Hello and thank you for your kind words Lori Renee. Today is a better day…feeling stronger and PT went well. I will keep going and focus on legs. I have heard of tapping. Tried it for migraines but no such luck. I may not be patient enough.

I'm thinking hydrocodone is exacerbating my pain. Maybe thats why I have pain in all these places. It's a rotten drug in that way. I'm working towards weaning off after I get a back up plan. Meeting with Pain Management to duscuss Low Dose Naltrexone then getting referred to a prescribing Doctor for medical cannabis so I can learn, then weigh my options. I'm a play it safe girl, if you can't tell. Ha Ha. So, Kratom for me is out at this time.

Definitely sensations like sunburn are nerve induced. I also get vibrations at times and many other oddities…name of the game. However, Lyrica has helped reduce these things. Now I've upped my supplement game and following a protocol so hoping the Alpha Lioic Acid and Acetyl L Carnitine and others take over on helping.

No hydro yet today, fighting it and doing pretty good. Helps that I'm heading to my daughter's college for her for first basketball scrimmage! Can't wait to see her….BEST therapy yet!!!

Have a great day and find relief. Thanks so much for corresponding.

Rachel

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@rwinney how much lyrica are you on. How long did it take to feel it’s effects ? Any side effects?

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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…

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@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…

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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.

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@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.

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@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

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@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

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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?

Liked by rwinney, jeffrapp

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@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?

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Yes, we do.

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@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

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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

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@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

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

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

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@pell

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

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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

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@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

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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.

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