YANMD/YANAD: Weird nerve pulsing/tingling in foot. Where to go next?

August 19, 2022 4:44 AM

I have this really odd issue with nerve tingling/pulsing in my foot. Please hope me better focus my efforts in getting it addressed.

~Here’s the issue...
Over the past few years, I’ve developed this odd tingling/pulsing/stinging surface nerve pain/sensation along the outer lower edge of my left heel. It can vary from tingling to an occasional sharp, powerful sting. It isn’t constant, but there are situations where it’s guaranteed to erupt, one of the worst of which is when I am horizontal in bed. When it hits, I cannot sleep. I’ve been losing a ton of sleep. A ton of sleep. If I manage to get four continuous hours of sleep, it’s a good night.

If I go for an extended period in shoes (any shoes) it flares up. Sometimes, even just wearing socks makes it flare up, though not nearly to the degree wearing shoes does. Conversely, it never happens if I’m walking around barefoot.

As I noted above, getting horizontal (i.e. lying in bed, on the couch, etc.) is guaranteed to bring it on.

~What I’ve tried...
When this first appeared, I assumed this was some kind of highly localized athlete’s foot, and tried treating it with the appropriate ointments. Just the rubbing ointment into the skin helped alleviate the tingling, but it always soon came back.

I had read that people with severe neuropathy will sometimes take gabapentin to help alleviate the pain, so, since I had some 100mg caps leftover from earlier surgery, I tried that. It kind of helped a bit, but it wasn’t predictably effective. Some nights it helped, other nights it was like I hadn’t taken anything. I also had a bottle of 300mg gabapentin caps from my father-in-law, and I tried those. I’m not sure those actually worked to stifle the pain, but they certainly knocked me out for the night. It’s definitely not something I want to be doing regularly.

The only sure-fire temporary help I’ve found is to ice the affected area. This will knock it out for an extended period of time, sometimes long enough for me to get a few hours of sleep. I will often lie in bed with my heel resting on a cold pack. If I wait long enough into the night to do it, I sometimes will be able to drift off to sleep long enough to sometimes stay asleep for a few hours.

~Doctors...
My PCP did the once over on my foot, noting no obvious injury or dry/irritated skin. They felt my pulse was good and strong in the foot. I don’t have varicose veins. So, they referred me to a podiatrist.

Podiatrist did x-rays, which revealed a boring healthy foot, with no breaks. There was a very minor spur on the back of my heel, which didn’t cause them any concern. Again, there was nothing obvious on the skin surface. They then hooked me up with a compounding pharmacy which, in turn, sold me an ointment for me to apply to the skin. It’s this crazy mixture of lidocaine, diclofenac, clonidine, gabapentin, baclofen, amantidine, verapamil, and pentoxifyline. It’s a very expensive cream that does nothing.

The podiatrist told me that there is a nerve (apparently not the sciatic) that runs across the outside of the foot in generally the same location as this pain, and has referred me to a spine doctor, but I have not yet been contacted by them.

~What now?
Beats me. It’s been well over a week since the spine doc referral, and I kind of doubt I’ll ever actually hear from them. I suppose I could act on my own and contact a spine doc. Alternately, I could possibly try to get in to see a neurologist. I’m just conflicted on which way to move on this.

This thing is really screwing with my quality of life. It’s hard for me to even go out to visit friends, because I know this is going to flare up like crazy at some point. My wife wants to go upstate to spend a weekend with friends, but, at this point, I just really don’t want to go because I know I’ll be spending a lot of time dealing with this, drawing attention to myself, etc, etc.

Has anyone else dealt with anything similar? What direction do you think I should go? Spine doc? Neurologist? Someone else? Is anyone here actually a nerve/spine specialist? YANMD, of course, but some educated thoughts would be greatly appreciated.

Thanks.

posted by Thorzdad to Health & Fitness (15 answers total)

IAAD but IANYD, and it's really hard to comment appropriately without an exam, but on the face of it the problem sounds like a localized nerve entrapment of some kind. (Perhaps the sural nerve somewhere along its course.) Alternatively some other kind of localized soft tissue problem that I wouldn't expect to show up on an x-ray. I don't think it's the spine: icing your foot shouldn't do anything if the problem originates in your spine. A foot and ankle surgeon (orthopedist) would probably be my next move. If you can find some capsaicin cream that might help in the interim.

Hope that helps!
posted by greatgefilte at 5:07 AM on August 19, 2022 [2 favorites]

BTW, I don't mean to be snarky, but it might be a good idea to go back to your PCP and say, hey, nothing's gotten better, what's the next step, rather than asking the internet. As someone who works in primary care, I see this very often from the other side of the equation, where patients feel that if my initial hypothesis was wrong or my advice didn't work, I don't have anything else to offer, when in truth I've got several other diagnostic possibilities or thoughts about what might help and I've just tried the most reasonable/safest/likely thing first.
posted by greatgefilte at 5:37 AM on August 19, 2022 [6 favorites]

I personally am highly skeptical of podiatrists, based on some very bad personal experiences and subsequent research on the topic. I do like physical therapists. But to me this to me sounds like a nerve issue, and for a nerve issue I want to be working with an MD, not a podiatrist, not a PT (unless referred by an MD). I don't know if an orthopedist or a neurologist is right here, but I'd want to see one or both of those before starting PT.
posted by primethyme at 6:03 AM on August 19, 2022 [2 favorites]

Nthing seeing a physiotherapist. I have currently very similar issues, except that i only occasionally have pain when horizontal. Incl. Somewhat dismissive PCP (saying pretty much the same "There was a very minor spur on the back of my heel, which didn’t cause them any concern", only in German).
I went to a highly recommended physiotherapist and she patiently examined my foot and said she believes this is a small bone spur, from years of walking somewhat oddly, and that weekly Physiotherapy and twice daily exercise and changing conciuosly how i walk (she was able to show me what i did and how to change it) it should improve. I am on week two and feel improvement is within reach for the first time in a long time.
posted by 15L06 at 6:15 AM on August 19, 2022 [1 favorite]

The symptoms you describe sound similar to the way Restless Legs Syndrome presents for me. I feel it around the heels of both feet but one in particular. I also regularly (try to) sleep with one foot on an ice pack. Of course I can't say if you have RLS, but you might want to consider the following:

- Do you take any SSRIs or antihistamines? Both are known triggers for RLS, as are drinking alcohol, smoking and caffeine.
- Are you drinking enough water? I always feel worse when dehydrated.
- Do you have any mineral deficiencies? A lack of iron can be a trigger. Taking a magnesium citrate supplement is helpful for a lot of people.

Other things I have tried that help: massage gun, accupressure mat, compression socks, getting as tired as possible then running to the bathroom to stick my feet under cold water for a minute before getting back in bed.

I hope whatever is going on with you is not an incurable chronic condition. But maybe you'll respond to some of what helps me?
posted by guessthis at 6:36 AM on August 19, 2022

I had a similar problem; not pain, per se, but a buzzing / vibrating. Physical therapy helped me. If I don't do the exercises it sometimes starts to come back, but paying attention for a few days to what I'm supposed to be doing fixes it. (For me, it's to do with my back and neck, probably related to an injury a few years ago.)

I've been to a few PTs and prefer ones with a sports focus.
posted by The corpse in the library at 7:17 AM on August 19, 2022

If the spine doctor is busy, I don't think a week is very long to wait for a call back. in 2019, I waited 2 months for a call back from a rheumatologist office and ended up calling them myself to beg for an appt. Might be worth trying.

Have they ruled out gout or another type of arthritis? It is simple blood work to check for high uric acid and thus be able to rule out gout. This is not the typical presentation (mine wasn't either), but affecting your sleep this badly means they should be looking for more than the obvious answers.
posted by soelo at 7:51 AM on August 19, 2022

Do you by any chance sit with the afflicted leg tucked under you, for long periods? I used to do that, and had sensations similar to what you describe that were ultimately because my sitting posture compressed a nerve. Once I realized that and deliberately changed how I sat, the problem went away in not too long.
posted by mhoye at 8:19 AM on August 19, 2022

Definitely call back the referring doctor and tell them the spine doctor hasn't gotten in touch with you, and ask them to either reach out again, or give you the phone number so you can reach out to them. They should have contacted you within a day or so to set up an appointment, and if they haven't, it may indeed have slipped through the cracks. This is an indication of either a very busy or a possibly inept office staff, but should NOT be taken as an indication that the spine doctor isn't useful or good - only talking to the doctor can tell you that.

And don't wait! There's no point in staying miserable when help is available but just administratively slow in coming. Be a squeaky wheel; you deserve the grease!
posted by invincible summer at 8:42 AM on August 19, 2022

I have had severe telangiactasia ("benign essential) in my feet; my capillaries migrate to the surface and I have similar symptoms. Tiny red dots that disappear for seconds if you apply pressure. No one knows why. Treatment with minocycline was very helpful over years until my liver became sensitized. This is a very specific, uncommon thing, but it can be tested for quite easily. There are a bunch of unpleasant diseases with telangiactasia in the name that you don't have. This is a tiny specific, probably unrelated data point that you could ask about. MeMail me for more info.
posted by theora55 at 9:32 AM on August 19, 2022

Call the spine doctor yourself! You have the referral, you don’t have to wait for them to contact you to make the appointment. Depending in your insurance you may not need the referral at all and can just… call and make an appointment. Also, seconding the suggestion above to go back to your PCP and let them know that podiatry did not help, and perhaps see if they can refer you to a neurologist. I’m assuming the spine doc you’ve been referred to is an orthopedic surgeon and they may not be the right place to go for this issue. I don’t think there’s much harm in pursuing an appointment with them and an appointment with neurology at the same time, as long as you’re upfront about it with both (and depending on what order you see them in, plan on bringing your notes and any imaging or testing you have done with one to the appointment with the other, or better yet, send it ahead of time if you can).
posted by MadamM at 11:54 AM on August 19, 2022

Could it be your shoes and socks?? I had similar pain, but in the ball of my foot. Almost exclusively only hurt when I was wearing shoes and/or socks. But it did hurt at night when I was in bed ... don't know why. I discovered that if I slept with yoga toes, it would alleviate the pain while I slept. I thought maybe I had morton's neuroma. I went to 3 different podiatrists. First two didn't help, third one was great. Turned out I don't have morton's neuroma, and just needed to start wearing shoes that allow toe splay. Worked like a charm! Since socks squeeze my feet and bring on the pain, I now either don't wear socks at all or I wear toe socks.
posted by SageTrail at 5:38 PM on August 19, 2022

I have similar pain sensations in my right foot, but at the arch and through the toes. It includes the buzzing/fizzing sensation and the sharp sudden pains and sort of a 'my foot is permanently asleep' feeling. It is the result of a screamingly bad back incident involving the sciatica nerve. The back pain resolved after a week or so, but the leg pain/restless/weirdness lasted longer. Eventually it felt like it was working its way down my leg and finally it settled in my foot. A TENS machine helped my back, but sometimes it made the foot pain worse if I used it on my foot, but it might help you. (I had my knees replaced and one concern I had was would it make the right foot pain worse. It didn't. The PT rehab for the knees did help the foot, too.)

One thing that helps me sleep is to wear a compression sock like the ones recommended for plantar fasciitis.(example) I wear it at night, not all day. The compression seems to calm things down enough so I can relax and sleep. I also use Dr. Teal's Night Time Therapy Melatonin Body Lotion which is basically magnesium/epsom salts in lotion form. I find it does sooth my somewhat restless legs. Has a lavender scent that I like. The sock/lotion combo has made a difference in my sleep.

I have used acupuncture, too, on the leg and foot with some relief, but not as much as acupuncture relieves my back pain. I am a fan of acupuncture; it even helped my knee pain prior to replacement. Doesn't 'cure' anything, but it can relieve pain.

I hope you find a remedy. Foot pain and not sleeping is awful!
posted by Nosey Mrs. Rat at 2:15 AM on August 20, 2022

while you wait, have you tried using an orthotic insert or even orthotic shoes? they can make quite a difference with pain. Happy Feet brand insoles are found at most drug stores and are the effective cheaper start. If they help, then you might want to invest in Abeo insoles or their shoes; more pricey, but longer lasting. good luck - foot pain is the worst😐, and I hope you get a diagnosis soon.
posted by mollymillions at 9:49 PM on August 20, 2022

I have 11 specialists at this point- none of them are decent at referrals unless they are being actively chased for appointments. Assume that you will need to follow up that referral and hound them for an appointment if needed. It sucks but it's the game of healthcare. Don't be surprised if your appointment is several months out at a minimum. I have one doc, admittedly a super-specialist, that I made an appointment for a year and half after the date I was calling. It's absurd.

I have small fiber neuropathy, among other things, which can cause similar symptoms. In getting my eventual diagnosis I had several rounds of x-rays and MRIs, a large blood panel for various things like vitamin deficiencies, heavy metals, and other precise markers, nerve biopsies, and a punch biopsy. Oh, and severs EMGs and reflex testing things.
With any nerve isssues you want to find the root cause- if it's treatable you can to fix is asap to prevent permanent issues and if it's not you want to focus on alleviating the symptoms. I'd get that referral appointment locked in and follow up with your GP re: further testing.


If ice helps the pain, I've found a combination of plunging the area in ice water for a bit, then rubbing Vicks on it and wrapping it in a sock or towel so it doesn't smear. Patch test it to make sure you don't react poorly if you haven't used it before. Compression either seems to make it worse or better depending on the person- same with heat versus cold, various positions, and so on. I'd try various things to see what makes the pain better and log it so you can give that info to your doctors- it really helps to be able to say precisely what hurts when and what makes it better when they try and figure out what the heck is going on.
posted by shesaysgo at 11:44 PM on August 20, 2022