Are your toes actually numb, as in you can't sense touch, or is it more of altered sensation? After a few months of my full body SFN onset (but targeting my legs and feet most), I developed this odd feeling in the three outside toes of my right foot. It feels kind of numb, but not really because I still have sense of touch.

When I reading about SFN one day, I read an article by a doctor who described it best..."It feels like your socks are bunched up under your toes." When it first started, that's exactly what I thought it was. After a half-dozen times of checking my sock, I realized that wasn't the issue.

No, they're completely numb to the touch. They feel like they went to sleep and didn't wake up. I'm trying hard to think if I've ever felt the sock bunching feeling you're describing... not really. Maybe? It just feels like numbness and tingling like anybody would get if their foot falls asleep, except for me it's permanent in that particular area. To be clear, the tips of my toes are numb with no feeling, and tingling kind of "shoots" through the other toes (and my heel) very occasionally.

The best way to rule out SFN (if your concerned) is to have the skin biopsy.

Cliffman

Hi DHCKris, I just saw this thread now, and your symptoms seem very similar to what I have been going through for almost two years. Although I do have moderate ongoing pain in my feet in addition to the twitching/cramping, and numb toes. My symptoms came on fairly quickly - over a period of about 6 months, but then stabilized and hasn't changed much in over a year now.

One thing I have discussed before is that there seems to be a large overlap between BFS and SFN (you can find studies supporting this if you google it). (There is also a large overlap between fibromyalgia and SFN.) Unfortunately, knowing there is this link hasn't lead to any understanding of why the link exists - nor has it lead to any breakthroughs in treatment options.

In my case, the cramping got quite bad early on. In particular, the shin area of my right leg would cramp badly while driving - obviously making it very difficult. Neurologist put me on gabapentin, which greatly relieved the twitching and cramping symptoms. I'm not a fan of some of the side effects, but overall the reduced cramping and the pain reduction I'm getting outweigh the side effects.

Hey, I appreciate your insight. Right now, my pain is weird. I don't really have pain on a regular basis but sometimes my feet and calves will get sore. None of these sensations seems new to me (it feels like muscle pain I might have gotten from heavy exertion in the past), but they just seem to happen more often. I'll get stabbing feelings in my hamstrings or calves and sore toes and heels. Luckily I would rate it as between a 2/10 and 5/10 on the pain scale - very mild and happens only a few times a day. I also get itchy - particularly my thigh and buttocks.

I don't really care if it's SFN or not. I've been going to doctors for years and I've seen five different neuros and I'm tired of being told it's no big deal. I want to know why I have it at such a young age, I want to know if it will go away or get worse, and I want to know if it could possibly be something other than SFN. But I guess there's really no way to know.

You need to get a skin punch biopsy to rule out SFN or to see what the level of damage is if it's SFN.

At least rule that out. It's really the only way to see if you have SFN.

The procedure is very minor and can be done by your foot dr if he does them.

Debi from Georgia

I completely understand, and appreciate it. But even my neurologists think it's SFN without a skin biopsy and haven't really offered any alternatives. I guess I'm wondering, is there any chance it IS something else? And if so, what?