I get dizzy/off balance often. Have others experienced this? I was told that this might be because the nerves that tell my brain where my legs and feet actually are at any given moment may not be working that great. The signals get a little garbled. So I get a wobbly/light headed feeling. It comes and goes.

Also, do others have any pains on their face and/or in their teeth or gums?

Thanks - appreciate the insight of this group. Rob

I recently have gotten pains in my face and gums. It was weird at first. Like someone was plucking hairs out of my face. Then I felt a few inside my mouth, like in the roof of my mouth. Not really in my teeth, but in the roof of my mouth. I was in a lot of stress at that time. Down for four days during that bout. I finally got myself calmed down, got back on my vitamin routine, started juicing my vegetables again and all the weird facial and hand pains backed off.

Now I'm just back to the feet and legs. Everyone's is different and focuses on a different spot. However, most of us have ours start in the feet.

you ruled out any dental issues? Just a thought...and one that could put your mind at ease in that one quarter.

You have learned correctly about your nerves sending you garbled signals to your brain about where your feet are in time and space, etc. But w/some PT and exercises specially designed to help you 'sort of re-program' what's working to help compensate...well, you'd be surprised. I know it's helped me a HEAP! And I'm not often even near being in a heap either. Not falling and heaping are good things!

As for the dizziness.. I don't know about that...PN can rarely affect vision, but I'm not recalling much about dizziness as a factor. Do you have blood pressure, hearing or migraine issues on top of the PN? I only ask, as I've had intermittent vision stuff that was checked out thru the neuro-opthomologist route and the good doc came up w/nothing....Had the heart, full-vision workups, vascular stuff [holter monitor and some sort of scope into the heart to check for abnormalities].. There were lots of tests tho that got checked off the lists good neuros SHOULD check off. And while the vision problem abated, it's not totally disappeared-I believe now it's stress related.

I only HEAP [as in fall down in one] about once a year...I somehow seem to make them very good ones tho - each time to the ER then an overnite stay in the hospital for observation [during which they do nothing]. More than enuf thank you.

Being in the UK I'm not sure how you go thru all the processes. Here I've the ability to go to specialists w/my insurance plan...therefore I can go to an EAR doc if it mite be an inner-ear problem, or whatever specialists [cardiac, vascular, etc.] for other things who are approved by my plan. The co-pays are what I pay and sometimes some more. I Hope, really hope that you find a doc or docs who are helpful, but more important in my book are the CURIOUS ones! Sometimes you can get lucky.

Perfectly toasty toes to all! - j

I had all those symptoms in bucket loads, they have gone now. For me it was all anxiety related. I even felt like my throat was closing up. I have a friend who has long standing chronic back pain who told me that he occasionally get the same feelings which he puts down to a reaction to dealing with the pain. But as Dahlec says maybe you should get this checked out.
Lupin

about your thyroid, statins, B-12 and other stuff already. So what I'm about to say does not negate this.

But:

Your symptoms are eerily similar to mine last year. In my Internet travels, I am seeing this same pattern occurring in people posting to this forum as well as the Cleveland Clinic and other pages.

I had sudden onset of: Migratory skin burning and prickling; intense skin sensitivity (wearing jeans or long-sleeved shirts hurt bad); pricking sensations focusing on my hands, especially my left; tinnitus; dizziness; jaw pain (TMJ); facial pain; fasciculations; and a whole host of other completely weird stuff.

I'll skip my long and frustrating diagnostic journey, which some members here may remember, and cut to the chase:

I got better. Almost completely better, in fact. And I did it by treating my muscular and connective tissue, which, far as I can tell, was irritating my nerves through compressive neuropathies and also producing other sensations through either referred pain or confusing my brain with a chronic pain syndrome.

I'll also skip most of my speculation about what caused it. There may have been postural issues, etc. (long computer use plus weightlifting is a deadly combo), but as I've also discussed with some folks here, there's definitely a suggestion of an autoimmune problem that got to my nerves by way of my muscles.

My ears prick up at a couple of your sx which sound distinctive to me.

Migratory burning and pain. Yes, small-fiber neuropathies can definitely produce this and we've had people on this board who had it. But the migratory pattern is still unusual and weird.

Face and mouth pain. Muscular TMJ written all over it. If you're on the East Coast, the best place to get it diagnosed and treated is at the Tufts Craniofacial Pain Center in downtown Boston.

Dizziness. In combination with your face pain, this suggests possible cervicogenic dizziness (I had that, plus cervicogenic tinnitus). Meaning, the muscles of your head, face and neck are in spasm. They are pinching nerves, causing pain. They are also confusing your brain, because your brain checks the position of your sternocleidomastoid muscles to see where your head is. If they are not functioning properly, you get dizzy.

Fasciculations. Not the first thing that comes to mind with small-fiber (i.e., painful) neuropathy, especially because these are caused by problems in motor neurons. But weird sensations are totally consistent with Benign Fasciculation Syndrome, which I had and you can find out more about at www.AboutBFS.com.

Whew! That was a lot. I didn't even get a chance to touch on my recovery regimen, which included myofacial trigger point release, manipulative physical therapy, and TMJ-specific treatments.

Anyway, it's possible something similar is going on with you. And YES, I've been told such things can be caused by thyroid problems, etc. I don't post here often anymore, but I'll try to remember to respond if you have questions.

Hey Steve, Glad to hear you are still well.

I have only one thing to add: when I get gum and teeth pain, it's not the neuropathy, it's the sinuses. And they improve with antibiotics and irrigation, and with the improvement, neuropathy symptoms improve. This might be worth looking into.

Good luck.

No pains in face or teeth or gums related to PN. My balance was terrible the first four years of having PN, and I stumbled a lot. Then I started taking Iyengar Yoga classes twice a week, and daily home practice. It was very difficult at first, but my teacher accepted no excuses to give 100% effort. Within six months, my balance had improved where I could walk without stumbling. The pain subjectively felt as bad, but I noticed that I was sleeping the night without waking from the pain for the first time since the PN started.

Now, many years later, I have excellent balance, but not as good as before PN when I was a runner and backpacker. My legs are strong, and I walk or hike between 2 and 5 miles daily at a fast pace.

Hang in there. If you look, you will find (what helps), and if you seek, it shall be answered (how to get better and get a good life).

you manage to walk that far! That gives me such hope and encouragement. I am still trying to make sure that I walk each day, so far this is pathetically short distances and I pay for it later with increased pain. I am not at all sure how to do this. I was a keen backpacker and walker before this happened, we have amazing places to walk/backpack in the UK. I have found it so hard to think that I will not be ableto do this in the future. I have hidden all my pack packing stuff away out of sight because I get upset thinking that I will not be able to do this anymore. How did you manage to get up to walking 2 to 5 miles a day? Did you gradually build up the distance you walk over time? I would be really interested to know how you manage this
Lupin

And it is important to remember that David did a lot of nutritional work during that time. If you are being damaged for lack of a nutrient or because of a toxin, remedying that is the only way your body will be free to make real improvements over the long haul.

rose

The first thing is that a good neurologist (that's usually an oxymoron) assured me that walking would not cause further nerve damage, so I felt free to ignore the pain as much as possible. I didn't and don't have arthritis or other condition that would preclude walking. When you start walking with PN, it feels like you're destroying your feet and legs with all the pain, but actually, you're helping by increasing fresh blood flow, and reestablishing balance and normal rhythmic nerve firing. Clinically, nerves firing and muscles contracting release healing endorphins that eventually reduce pain and promote healing.

I wear comfortable and roomy running or walking sneakers, with Spenco sock liners replacing the cheap foam inserts that come even with quality shoes. The athletic socks are 100% acrylic for added bounce, padding, wicking of moisture and warmth even if wet. I stretch daily, a combination of yoga and the program in the book "Three Minutes to a Pain Free Life" ( http://www.amazon.com/Minutes-Pain-F...5119057&sr=1-2 ). I was an active yoga student when starting walking again about 10 years ago, and was in extreme 24 hr. pain, but was starting to heal a bit because of the yoga and slowly getting rid of my chronic low level anger.

Like any exercise program, start slowly and don't increase more than 10% a week. Even that rapid an increase risks injury. Breaking up the walking to half the distance twice a day is worth considering, at least the first year or two. BTW, living with a dog or three (like we did back then) is a powerful motive to get out every day. They need it for their sanity and so do we. Dogs (the surviving one is now 14 yrs. old) make you feel soooo guilty if you don't take them out after all their begging and manipulating.

Realistically, I don't expect to ever run or backpack again. My last backpacking trip in 1994 ended up disastrous. Our third and final day, with about 10 mostly steep uphill miles to go to the trail head in North Zion NP my partner had to carry my pack out and come back to help me. I was almost delirious from the excruciating metatarsal foot pain with every footfall. A dream is to someday try hiking in a few uphill miles with a light pack just to get far from the madding crowd. But not out of cell phone range just in case.

Like Rose wrote, I don't think any one thing can turn our PN around except in those rare cases with a single identifiable and reversible cause. Walking or other exercise is but a part of promoting healing and reducing pain. Others aspects are learning about our health, aging, and PN, eating a healing diet, taking carefully selected supplements, cultivating love and support from family, physicians, and friends, giving back to others, and getting our emotional and spiritual lives on a serene and empowering track. Obviously, that's all a lifelong process rather than a reachable goal.

Rose wrote years ago about PN being an adventure. It can be that, a lifelong journey of discovery with unexpected challenges and rewards on the way. What a noble life quest that can be...a life enhancing gift from what seems to be disabling and life reducing. Learning to walk again through the pain and fear is part of it.

For you to be considering taking this on is an inspiration. Best of luck to you.