Numb Feet / Working F/T While On Your Feet

[TOBEY32]

Is this you?
My feet are number 24/7. I'd like to think I can pull F/T off, but not sure. Call Centers are an option if you can do them, but I prefer other things.
Thanks!

David

[Lightwarrior]

Is this you?
My feet are number 24/7. I'd like to think I can pull F/T off, but not sure. Call Centers are an option if you can do them, but I prefer other things.
Thanks!

David

I work full time, but I ride a motorized scooter. Luckily I am a nurse who is on the floor most of the time but not at the bedside.

[Al]

Is this you?
My feet are number 24/7. I'd like to think I can pull F/T off, but not sure. Call Centers are an option if you can do them, but I prefer other things.
Thanks!

A certain amount of neuropathy seems to be par for this course, David. It is a nuisance, for sure, but what can you do about it? Some drugs, like gabapentin, are reputed to be at least mildly successful dealing with the neuropathy, but they are not particularly kidney friendly, so they are questionable at best. The best thing is, I think, to not get too bored. It is easier to ignore the nerve issues when you are really active. The worst times are when there is nothing else to think about.

Al

[jola57]

I have had numb feet for as long as I have wegs, 5 years and I work full time, but it's mostly a sitting job and I can move about

[Thakator]

David,
Another reason to get the old Wegs under control - - peripheral neuropathy (PN). This is not to say that your numbness will progress to a point of causing you difficulty in ambulation. But, it could. Many of us herein have PN to one degree or the other; as Al says, a certain amount of it seems to be par for this course. And, it's one reason why enlightened neurologists are on the lookout for Wegs when a new patient with PN comes threir way and they don't have either of the three most common causes of it (diabetes, vitamin B-12 deficiency or traumatic nerve injury [in decreasing order of frequency]). The next most lfrequently encountered cause is an autoimmune disease and some medical texts actually list Wegeners as the potential culprit.

My neurologist concluded and stated that Wegs most likely caused my PN and that it had been working on me (ie: badly damaging both the motor and the sensory nerves going to the feet) for several years before getting the Wegs dx and treatment. Consequently, my feet muscles atrophied and thus I now have considerable difficulty with balance and with walking in a manner that would not cause someone to say that I was anything other than drunk on my feet. Plus the numbness which is still as much of a pain in the butt to live with as it ever was. Started out with just the numbness but those years on non-treatment of the Wegs took their toll and now I simply hope to contain the damage. So, nope you're not alone; you're in the Weggie family now and we tend to have some fairly common family traits. Take care, Ron

[KathyB]

I have had PN problems since well before my WG diagnosis. Numerous of my family members have some form of it -- my younger sister is disabled from PN disease. She and I were both also diagnosed with MS in our 30s, although I believe I've only had one exacerbation whereas she also had PN which proved to be much more debilitating for her. Mom describes her feet problems as rocking/rolling (not flat) and it effects her balance terribly. My PN is in my hands, lower legs, and feet. The higher doses of prednisone definitely made it worse! On 10 mg now, it has improved.

KB

[Sangye]

Those of you with PN in your feet should definitely consider seeing a chiropractor. It won't reverse it or cure it since the process is autoimmune. But having your spine, pelvis and extremities adjusted on a regular basis will help normalize the nerve signals going and coming to the extremities. It can help with balance, weakness and proprioception.

I also suggest that you do a bit of manual PT on your feet every day:
- Hold one foot in your hand and rotate the ankle through all its ranges of motion (clockwise and counter-clockwise, too).
- Rub the entire bottom of your foot, including toes and heel thoroughly. Use your knuckles and palm to get in deeper.
- Move each toe through all its ranges of motion (be very gentle if they're stiff).
- Grasp the sides of each foot and move each side in an opposite direction and in little circles.
- Slap the entire bottom of your foot with your palm to stimulate all the nerve endings.

None of this should hurt. Back off or stop if it does. Make sure it's okay with your doctor that you do it, and don't do it if you have things like metal plates or screws in your foot or ankle due to prior fractures.

[Sangye]

I have had PN problems since well before my WG diagnosis. Numerous of my family members have some form of it -- my younger sister is disabled from PN disease. She and I were both also diagnosed with MS in our 30s, although I believe I've only had one exacerbation whereas she also had PN which proved to be much more debilitating for her. Mom describes her feet problems as rocking/rolling (not flat) and it effects her balance terribly. My PN is in my hands, lower legs, and feet. The higher doses of prednisone definitely made it worse! On 10 mg now, it has improved.

KB

Kathy, this sounds like it could be due at least in part to a vitamin B deficiency. Pred depletes B6 in particular so you'd be worse on higher doses.

[TOBEY32]

PN is such a drag at times.
It's funny: I was diagnosed last february. I went IN to the hospital with my feet just fine, I come OUT (it was 34 days I admit) with numb feet. Sometimes I think "What did they do to me while there that caused this!" Maybe it was just a timing thing, but I found it very weird.

[Al]

PN is such a drag at times.
It's funny: I was diagnosed last february. I went IN to the hospital with my feet just fine, I come OUT (it was 34 days I admit) with numb feet. Sometimes I think "What did they do to me while there that caused this!" Maybe it was just a timing thing, but I found it very weird.

Dunno about the PN, David; that was surely due to the WG. But 34 days (!!) in the hospital will mess anyone up. I went around the bend--around several bends, in fact--in 12 days. And, and as some will have observed, I haven't found my way back yet....

Al