toes have been numb for three years
 

I've been struggling with a multitude of small, annoying symptoms the last few years and have seen many doctors as a result. I have all of the symptoms of BFS, but I only know about BFS from the Internet, no doctor has ever mentioned it to me. I have the twitching all over my body, especially in my eyes, chest, buttocks and legs. I have tingling, cramps in my scalp, face, hands, legs, and feet: ESPECIALLY in my feet.

But my biggest symptom is the complete lack of feeling in the outer edges of my big toes. Three years ago, it started on the right foot, 18 months, the left. I also get tingling throughout my toes and up and down my legs. I get burning pain in my heel, toes, feet and right thigh, but it lasts for seconds at most and isn't severe. These symptoms are worst when I wake up in the morning and go away with activity (walking, running) in a similar way a foot "wakes up" when it's asleep.

I'm a 24 year old male, non-diabetic with perfect MRIs, EMGs and bloodwork. I had an autonomal symptom - frequent urination, and underwent a urodynamics study to rule out MS. The uro felt my bladder was not neurogenic and chalked it up to anxiety. I DO have very severe anxiety.

Now, my neuro thinks this might be a mild small fiber neuropathy, but my pain is very mild and 95% of the time I have no pain whatsoever. I am TERRIFIED I might one day have the severe, chronic pain that SFN patients report. I know it's silly, but I am debilitated not by pain but by the fear of it. I do plan to pursue a skin biopsy, but my neuro had to refer me to someone else to do it.

What could be wrong with me to cause SFN? Do I have severe pain to look forward to? I could live happily with the symptoms I currently have, my own fear is they were progress.

Thank you so much.

The lack of feeling in your toes might indicate a blood circulation issue (there are lots of possible explanations for this).

Discussing this with your doctor and maybe getting a referral to a specialist is worth considering.

I've had my circulation checked, too. My doctor thinks it's anxiety-related, because my anxiety is severe, and suggested that treating my anxiety would cause the symptoms to go away. I just don't want them to get worse.

Just an update, for those who find this thread through desperate googling of symptoms. I have fairly large calluses on my toes around where the numbness starts. The calluses have no feeling to the touch, but that's normal for calluses - the problem is that the numbness extends beyond them into the soft skin. My podiatrist said that the calluses are caused BY the numbness, but I feel like I've always had them. My GP thinks maybe the calluses are CREATING the numbness? My podiatrist has cut them off before (still no sensation in that whole part of my toes) but maybe maintaining a callus-free foot will provide relief. I bought a callus remover, which is like a little electric shaver device, and went to town on my toe to see if it was somehow creating nerve compression.

Well, the callus remover actually hurt a lot. It left a cut (which healed very quickly - so no diabetes/circulation issues?). It's weird because I haven't felt any sensation in this area for years and all of a sudden I have a painful cut. Don't know if that's significant, but I had to stop with the callus remover.

I do get shooting numbness and tingling all through my legs though, but lately I've noticed it more in my right knee and both the back and front of my thigh directly above that knee. my right thigh actually bothers me a lot - it gets numb easily, prickles, burns (not painfully, but I feel a heat, like my thigh has a fever) and sometimes hurts for a brief moment. I get fasiculations EVERYWHERE, but especially in this area. Just as a point of clarification, I do get these symptoms in BOTH legs and thighs, but it is especially noticeable in the right, which is also where the foot numbness started before spreading to the other toe.

So far no weakness, but if I had SFN, would I have it as far up as the thigh this quickly? Maybe there's a connection. Maybe my sleeping, walking, exercise habits are taking a toll on my legs and feet that causes these symptoms. I'm just still struggling to understand how a non-diabetic 20 year old male develops idiopathic neuropathy. My orthopedist checks me regularly because I have severe scoliosis, and has ruled out sciatica or nerve impingement that would cause thigh discomfort or foot numbness. He also insists that I wouldn't be getting symptoms in BOTH feet bilaterally, because even IF scoliosis caused nerve impingement (which it rarely does in patients my age), it would only be one side, because my spine is curving to one side. So I'm positive it has nothing to do with my back.

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.

Hey DHCKris :)