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Rachel, Volunteer Mentor (@rwinney)

Aching legs from Small Fiber Neuropathy

Neuropathy | Last Active: Aug 28, 2021 | Replies (134)

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@jeffrapp

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?

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Replies to "Hi My idiopathic small fiber PN started with pains in my feet only. I had a..."

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