Originally Posted by boiler1993

DHCkris -



teachermom - I remember your first post because I was excited to see someone else asking questions about running! I do often feel better overall when I have been running as I said to Caroline I think for me it is because it helps with any stress from that day. Yes for me this way never a problem until my feet started to bother me. And I think that I have a large variety of symptoms but for the most part my level of pain experienced is much lower than many on this site - the fact that I can still run is probably a testament to that. Do you have any foot pain at all? Or it it all upper leg?

Originally Posted by DHCKris

Boiler1993, I'm in New York, not Texas, unfortunately. What's good though is I recently learned that Weill Cornell Medicine in NYC has a whole Neuropathy Center with some of the best doctors for diagnosing and treating neuropathy. I made an appointment for June.

I'm still not convinced that what I have is neuropathy though because I really don't have pain at all. I have body-wide tingling and fasiculations (twitching). My eyes, groin, chest, ribcage, buttocks, thumb, toes, ankles all twitch.

The tips of my big toes are numb (I've lost about 90% of feeling) and I get little tingling and "shock" feelings through my toes, heels, ankles and left knee and thigh. It's like a tingle that jumps around these areas. Honestly I probably wouldn't notice it or think it was abnormal if it weren't for the toe numbness, so I would say that's my main symptom. The tingling can get pretty intense, but it's never PAINFUL. My feet get sore easily around the numb parts, but it's like a normal "sore foot" feeling, not like a burning sensation, though I do get very slight burning/cold feelings in my feet and legs sometimes too.

I have quite severe scoliosis but my doctors feel confident there is no nerve impingement or CNS issue that's causing this, or anything related to my spine. Still though, I can't help but wonder if scoliosis is the culprit in an indirect way - like it definitely messes with the alignment of my legs, since my hips are slightly askew, and it alters my balance and my gait. I wonder if many years of walking "funny" with a crooked back has caused nerves in my feet and legs to get compressed. My doctors think it's plausible but they told me I should see a neuro who specializes in neuropathy to do a biopsy, so that's my next step.

I know I should consider myself lucky to not have pain, but I want to avoid this progressing if it truly is SFN. I'm terrified of that happening because I'm so young and because my life is really great otherwise right now. New job, new living situation. Plus, I have a lot of health anxiety and tend to obsess over these things, which isn't good. As soon as I noticed my toes were numb it triggered health anxiety that has yet to go away. Really, I would say the anxiety is my worst symptom, but I'm getting that under control too, thankfully. I just want to feel like a normal person again! I'm sure you feel the same.

Originally Posted by teachermom

At the beginning of every run, it feels like my feet are made of broken glass. They also feel this way when I get out of bed in the morning. It is very painful, but after a few minutes, I'm ok. At night, my lower legs are in a lot of pain---kind of like being stuck by needles from the inside out. Fortunately during runs my biggest issue is that my legs kind of seize up. It's a very odd sensation and my gait gets weird. It's almost like my legs don't remember how to work correctly. But I have noticed that running on grass or gravel helps with this and I can almost always run through it. For a while, my legs had a very heavy sensation and it has taken me months to get to the place I am now--running long distance again. Running is a dear friend to me and I dread the day that I won't be able to do it anymore. Like you, I feel fortunate that my sfn seems mild compared to most.

Originally Posted by boiler1993

Wow it sounds like your symptoms are very different from mine but that is partially due to the fact that I have NLD SFN which I know is a little less common. I understand your love of running - just keep doing what you can! I hope that running will always be something you can enjoy