Numb Feet

[RudiK]

Both of my feet are numb on the outside, with some "spotty" tingly feeling on the right foot. I lost the feeling a month before I was diagnosed, the docs call it peripheral neuropathy. On the inside they feel as if there is someone in there and poking me with a bunch of needles when I walk or move the feet. They used to itch also when I rested, but that is mostly gone after start taking 200 mg of Gabapentin. I have good circulation in both feet.

[crackers]

i did ask the docs about peripheral neuropathy at the outset of the problem but the angios proved otherwise.sangye i remember the laughs we had very clearly.my wife used to think i was losing it because i'd be sat in front of the comp giggling like a little kid.what ever happened to doug by the way.he was a real character.
john

[Stephanie78]

I haven't read all of the replies so I apologize if I am repeating anything.

John has had partial numbness to his feet as well as both hands. In the beginning he was told it was due to meds (by the rheumy) however once his main doctor changed to his nephrologist he was informed that it was more then likely NOT due to the Prednisone (as stated by the rheumy). Possibly an effect of the WG itself. He said it will get better but probably never go away. Sometimes it actually causes his feet to hurt (throb) some days are better then others.

He actually hit his foot on the bed back in July. Had no clue how bad he had hit it. Within a week it was black. He ended up having a clot that ruptured. He had lost all circulation to his toes. Amputation was talked about, but Thankfully the Plasma Exchange Treatments caused it to correct itself.

The doc told John that he would grow accustom to it. Somedays he would forget about it. Hot weather will cause it to get worse...

I hope it gets better.... Being the spouse of a WG Patient I don't have the personal experience, however I have the learning experience.

[Dirty Don]

I hope it gets better.... .

Yes, we all do. FYI, I worked with a PT right out hospital (had to relearn some things, LIKE EATING!! sheesh!)and I have a dropped left foot, numb due to neuropathy or is that neuropathy, anyway, point is, as I was and have been working on that foot, he pointed out to me that nerves, in repair, still only grow millimeters a YEAR...sometimes they get repaired, most of the time after right around 2 years, they don't. And I have known some athletes with nerve damage, pretty much the same results...depends on how lucky we are. I work on balance all the time, strengthening that area, and being very aware, even in the hot shower...easy to get burned I'm told...best of luck to you both.

[Al]

....I hope it gets better.... Being the spouse of a WG Patient I don't have the personal experience, however I have the learning experience.

Any kind of neuropathy can be not only painful and highly annoying in its own right, Stephanie, but in can also be disorienting in several ways. Your sense of being a complete person is highly dependent on having a sense of where all your body parts are at any given time, and how they fit together and move together. For a quick experience of how everything needs to fit together, try putting a patch over one eye, or plugging one ear. Suddenly, your depth perception goes away, or your feeling of being part of a social group, say, get's badly distorted. This is similar with tactile senses. Oliver Sacks writes about having the feeling, after a bad injury to his leg, that the offending leg was someone else's. The point is that this disorientation can also be dangerous. When you do not properly sense where a body part is, it tends to hit things and get damaged. Extra, and conscious, care is needed. Feet, probably because they are fairly distant from the heart, seem to be the hardest hit when it comes to neuropathy. I have some in both feet. In my case, it happened after I was rear-ended, though I am sure the vasculitis doesn't help a bit. I also have some surface neuropathy after a bout of shingles. These are truly annoying. I cannot wear normal shoes for any length of time, and the bed sheets can aggravate things, especially during pred-induced insomnia. I don't know if hot weather is any worse for me, but your hot weather and my hot weather are two different things!

Al

[Stephanie78]

Al - Do you tend to notice the colder weather bothers it? Johns doctor says that it shouldn't but John says it seems to be more sore when it is colder outside. He has also been dx with Raynauds which causes the blood vessels to shrink when cold causing his feet/hands to turn purple which I guess could cause more discomfort?!?

He hasn't really experienced the hot weather with it so I'm not sure how that will effect him. John did physical therapy however he stopped when his foot had the clot rupture (the pain was unbearable).

[Al]

Al - Do you tend to notice the colder weather bothers it? Johns doctor says that it shouldn't but John says it seems to be more sore when it is colder outside. He has also been dx with Raynauds which causes the blood vessels to shrink when cold causing his feet/hands to turn purple which I guess could cause more discomfort?!?

He hasn't really experienced the hot weather with it so I'm not sure how that will effect him. John did physical therapy however he stopped when his foot had the clot rupture (the pain was unbearable).

Well, when I was having the worst of my lung troubles, I did get a little minor cyanosis (bluing of fingertips), which was indeed worse in cold weather. This was probably due more to poor oxygen infusion rather than peripheral vessel shrinkage per se. (In any case, no DX was provided to reflect that specific issue.) Anyway, my lungs did recover a lot, and I have not had any cyanosis since. Hot weather bothers me for (probably) unrelated reasons. So do mornings, for that matter. I would imagine that, regardless of the cause, John would find the situation greatly annoying and uncomfortable. For me, the lousiest my skin nerves ever felt was when I had shingles. (A chicken pox infection, after its active stage in childhood, can lie dormant in the body for decades. Then, when the immune system is at a low ebb, or suppressed, the virus can come out to play, as shnigles. And it plays mean.) I was quite worthless as a human being. Then about the only thing that helped, temporarily, was a warm bath with a lot of aloe vera dumped into it.

Al

[Sangye]

I have Raynaud's, which started pretty quickly after I was dx'ed. It's a pain but you learn to live with it.