Aching legs from Small Fiber Neuropathy

@rwinney Hi Rachel, I get very exhausted feet, but not legs. However, I do get tired legs at times, but I do not think it is from the neuropathy. I think it is more from aging. Has anyone taught you to do stretching exercises for your legs? Stretching before you walk can help quite a bit. I also had buckling knees at one point, and in PT, they said there was no problem at all with my knees, but with my leg strength. They taught me leg stretching, and the buckling stopped completely. I am wondering if stretching would build leg strength, and then you would not hurt as much. Also, I dont know if you are at all in condition to do this, but putting elastic cords around your ankles, and certain types of walking, is resisitance, and builds leg strength. Maybe PT for leg strengthening would help? This may be stupid. I dont know for sure. Because foot exercises for my foot neuropathy did nothing. If your weakness is all from the neuropathy, I have no idea if exercise would help. On YouTube. look up leg stretches, or specifically ham string, and calf stretching. Also, look up "monster walking," and see if anything comes up. This was the exercise with cords. You do it for a very short time. I am hoping if you could build your legs, you would not hurt as much. I am just so sorry for all of this. And you are so young, still! Let me know what you think. I feel your pain. I really do. What we have to bear! God Bless Lori Renee

Hi Lori Renee

Thank you so much for your thoughtful response. I do appreciate it. I agree with where you are coming from regarding stretching. You have some good ideas. I stretch my legs now as it feels good, also hold them straight up (the wall excercise) to get blood flowing down. These things give temporary relief but have yet to be long term.

I began having electric shocks and sunburn sensations in my calves about 6 months ago. That was followed by bouts of my legs feeling like a cold flush was running down them.

On several occasions, mainly at night, my legs would go completely numb and feel dead. They began aching in June, which may break a day here or there. In addition to occasional waves of numbness, they also experience cramping, as have my arms. No rhyme nor reason to any of this mind you.

Sorry, don't mean to bore you with all the details but I desperately hope someone out there will validate what I'm experiencing and say, "yeah, me too!" Comfort in numbers I suppose.

I have so much nonsense throughout my body and this describes only my legs. I'll save another "new discussion" for a different day.

I'm really not a complainer nor a drama queen but this week has got me good.

Thanks again for listening. I wish you relief today. Best wishes.
Rachel

Oh and I remembered this bc it just happened...I get pain up my shin bones, like shin splints. This bone pain also happens in my foot, hands and forearms. Anyone relate, Anyone????

Hi
My idiopathic small fiber PN started with pains in my feet only. I had a skin biopsy, which confirmed the diagnosis. As I think you know, there is a control component to the biopsy from the foot which is a similar biopsy of the upper thigh. My fiber content was also low on the thigh, but not as much as my foot.
For the last 6 months or so, I have developed problems with my legs. They are much more sensitive to touch. I can't wear heavy fabric pants like jeans. Even sheets can make me uncomfortable.
Along with that, I also have aching in my muscles, although they are still strong.
Interestingly (I'm trying to be positive), I developed pain in my right hip and both knees. I have known for years that I need a hip replacement (I'm going to get one next month), but I never had any problems with my knees. X-rays show that they are pretty shot as well.
I find myself wondering whether the pains in my legs are from the arthritis, the PN, or both. They seem to spill into each other.
I also wonder whether PN is associated with more rapid advancement of arthritis.
It's like the trials of Job. Wonder what part will go next?

@rwinney Hi again, Rachel. Even though your legs give you so much trouble, have you ever described all of your symptoms to a physical therapist? I cannot help but think that even if you are in bad shape, a physical therapist my be able to tailor exercises specifically for you. It might be worth checking into. You do not bore me in the least with your symptoms. We are all here trying to figure things out. By the way, I wake up to terrible sun burn sensations in my lower legs, every morning. It is the oddest thing, but vanishes. Today, toe pain was excruciating, and I took my Kratom, and felt way better very soon. Seems like not a lot of people try Kratom. I think it scares people. I also think you might want to check with your primary care doctor, to go over all of your symptoms. Seems like they are good at putting all symptoms together, and might at least guide you to the right specialist. In general, I have learned more here, than from my doctors. Please describe, in detail, everything. I am here to listen and help. I wish I could do more. God Bless. Being sick is no fun. Not at all. 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

Hey there, I'm going back to my physical therapist tomorrow actually after taking a month off. He does myofacial release on various areas of my body. Tough to keep going because of co-pay costs and limited insurance approvals. My pain is not isolated to one area therefore he has to rotate body parts and I don't think each area gets the attention it deserves.

Tomorrow, I'm going to specifically talk with him about the aching in my legs and the cramping/numbness that flushes down them.

The sun burn feeling is so bizarre isn't it?

Yes, I agree there is fear with Kratom. I'm happy it brings you relief and was wondering if a Dr ever recommended it for off label use to you? Due to safety concerns, lack of studies and no FDA approval it remains a big risk. Curious how long you have been using it?

Thanks for your listening ears and big heart. It sure does help. Glad to know we can be here for each other. Take care

Rachel

Hi Lori Renee. I found it interesting that you wake up with a sunburn feeling in your lower legs every morning. I am awaken early every morning with burning in my hands (sometimes feet). It is usually quite intense and I am unable to go back to sleep. It eventually passes but I sure don’t like it! Seems like a “release” of some kind but no one has been able to explain it to me yet. What do you attribute yours to? Cindy

@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

@cindy62 Hi Cindy, I have attributed my sunburn type burning to something to do with how my nerves work. But this sunburn feeling is mostly annoying. It is not the same as the burning I get from the neuropathy in my feet. That burning can be excruciating. Like my feet will catch fire. Because the sunburn feeling is just annoying, I never have pursued finding out about it. I just notice it, and think how goofy my body is!!!! Take care, Lori Renee