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 group.

@lorirenee1

@arwinney Hi Rachel, I am so glad you are going to PT! I guess for now, you must concentrate on your legs. I understand how costly PT can be. I could not even go, with the Co pays on my new insurance plan. Finally on Medicare. What can I say? Did you ever ask anyone about the sunburn sensations you get? I never have, but just marvel at them. Bizarre is right!!!! I also used to get sensations of water dripping down my legs. All crazy nerves, acting up. As far as the Kratom; I learned about Kratom at least one year ago or so, from a lady on this site. She said that since she started using it, her pain has been very manageable. I did all kinds of research on it, and decided to give it a try. Kratom deaths, of which there really are few, were young adults, always with other drugs in their system. Although it is not FDA regulated, there are scientists doing a lot of research on it. Also, I get it from two on line sites, one of which, has to pass Kratom Association standards. It is third party tested for anything that does not belong in it, and whatever else the Association standards are. The on line site is called Happy Hippo. I like the other site very much, but I do not think it does third party testing. The biggest thing to learn about kratom and safety, is to take the least amount you can, to get the desired effect. For me, this is about two to three teaspoons per dosage. I add it to about three ounces of water, and chug it down. I swear, Rachel, it takes pain away quickly. Another thing, is to really save it for when pain is very, very bad. I have heard it can be addictive, so I use it sparingly. No more than about twice a week. Used it yesterday because my toes felt like they were being pulled out of their sockets, and pain would not go away. I can "tap" pain away, sometimes. Do you know about tapping? It works quite often. Check out tapping for pain, on you tube. Looks mighty goofy, but works! And Rachel, you have a giant heart. You put your soul into every post. I can feel your kindness through your words. Anyway, best of luck at your Physical therapy. Nerve damage is one horrid thing. Prayers to you, Lori Renee

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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

REPLY
@lorirenee1

@arwinney Hi Rachel, I am so glad you are going to PT! I guess for now, you must concentrate on your legs. I understand how costly PT can be. I could not even go, with the Co pays on my new insurance plan. Finally on Medicare. What can I say? Did you ever ask anyone about the sunburn sensations you get? I never have, but just marvel at them. Bizarre is right!!!! I also used to get sensations of water dripping down my legs. All crazy nerves, acting up. As far as the Kratom; I learned about Kratom at least one year ago or so, from a lady on this site. She said that since she started using it, her pain has been very manageable. I did all kinds of research on it, and decided to give it a try. Kratom deaths, of which there really are few, were young adults, always with other drugs in their system. Although it is not FDA regulated, there are scientists doing a lot of research on it. Also, I get it from two on line sites, one of which, has to pass Kratom Association standards. It is third party tested for anything that does not belong in it, and whatever else the Association standards are. The on line site is called Happy Hippo. I like the other site very much, but I do not think it does third party testing. The biggest thing to learn about kratom and safety, is to take the least amount you can, to get the desired effect. For me, this is about two to three teaspoons per dosage. I add it to about three ounces of water, and chug it down. I swear, Rachel, it takes pain away quickly. Another thing, is to really save it for when pain is very, very bad. I have heard it can be addictive, so I use it sparingly. No more than about twice a week. Used it yesterday because my toes felt like they were being pulled out of their sockets, and pain would not go away. I can "tap" pain away, sometimes. Do you know about tapping? It works quite often. Check out tapping for pain, on you tube. Looks mighty goofy, but works! And Rachel, you have a giant heart. You put your soul into every post. I can feel your kindness through your words. Anyway, best of luck at your Physical therapy. Nerve damage is one horrid thing. Prayers to you, Lori Renee

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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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@rwinney

Hello

You are spot on with the confusion factor and not knowing what's from what. I read it's important to not assume everything is from PN however, there's such a fine line.

You said the word job.
I went on disability from my job 2 years ago yet I still feel like I work, without getting paid, on my health and figuring this stuff out!

Back to the legs…I understand how you say you cant wear jeans. Some days I can not wear certain fabrics or clothes that fit to snug on my legs and arms, as I haven neuropathy there too. Days when I cant wear sneakers or have one tied, or have a sock on. Days when the sheet can't touch my calves.
It's really mind boggling.

My random neuropathy pains vary day to day. Has been toe, top of foot, ankles, calves, shins, knees, hip, thigh, shoulder blades, neck, back of head, jaw, fingers, top of hands, forearms, low back…hmmm, maybe easier to say whole body but not quite yet. It's freakin' crazy to be honest and some days makes me think Im crazy!
Thankfully I have a skin biopsy to prove my sanity.

Keep me posted on your discoveries and whether you clarify any of your confusions. It's the best thing we can do to help one another. Good luck to you with your upciming surgery. I wish you the best. Take care.

Rachel

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Hi Rachel
I did find one paper on the relationship of PN and arthritis.
I don't think I'm allowed to write hyperlinks on the forum, so here is the name:
"Peripheral Nerve Fibers and Their Neurotransmitters
in Osteoarthritis Pathology"
I think you'll find it if you google the name. It's a bit dense.
I think I'll forward it to my neurologist, see what he thinks.
It sort of doesn't matter, since they can't do anything about it.
I'd be interested in hearing from anyone else reading this if they have noticed rapid deterioration of osteoarthritis.
Thanks for the kind thoughts.
Jeff

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@jeffrapp

Hi Rachel
I did find one paper on the relationship of PN and arthritis.
I don't think I'm allowed to write hyperlinks on the forum, so here is the name:
"Peripheral Nerve Fibers and Their Neurotransmitters
in Osteoarthritis Pathology"
I think you'll find it if you google the name. It's a bit dense.
I think I'll forward it to my neurologist, see what he thinks.
It sort of doesn't matter, since they can't do anything about it.
I'd be interested in hearing from anyone else reading this if they have noticed rapid deterioration of osteoarthritis.
Thanks for the kind thoughts.
Jeff

Jump to this post

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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@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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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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@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.

REPLY
@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

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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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