Aching legs from Small Fiber Neuropathy

@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

@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

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

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

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

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

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

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

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

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