Question Regarding PN (Numb Feet):

[TOBEY32]

Besides just being terribly uncomfortable (and I can't take walks or jog) I wonder if I cause more damage by walking/standing for periods?
Yeah, I know to ask my docs, but someone here knows too.
I hate the thought I could never take walks/jog again. I never say never though. God can do what He wants if He chooses, but I do have to accept what I am presently given.

David

[Al]

Besides just being terribly uncomfortable (and I can't take walks or jog) I wonder if I cause more damage by walking/standing for periods?
Yeah, I know to ask my docs, but someone here knows too.
I hate the thought I could never take walks/jog again. I never say never though. God can do what He wants if He chooses, but I do have to accept what I am presently given.

David

Why can't you walk or jog, David? is it joint pain? Or does the PN mean that you don't trust the position of your feet, or is it something else? I don't know your situation, but it seems to me that, whatever "harm" you would do by walking or jogging is vastly outweighed by the harm in standing/sitting all day.

I have some PN in my feet, which is quiet different than diabetic PN. I have plenty of sensation, but it just feels like my feet are on fire. I can't wear leather shoes for more than a few minutes at a time, but I can walk, and do, at least a couple of miles a day. At home, I always wear my slippers, or just socks.

Al

[TOBEY32]

Al,
I can walk (from A to B), but walking/hiking (extended types) and jogging is a no go. The "numb level" is so high it just wouldn't be enjoyable. I don't/didn't really feel that walking required by most people day-to-day damages anything, but wanted to ask. Was looking at this from more the standpoint of returning to work and what I can/cannot expect to do: a standing/walking job of 8 hours would be terribly uncomfortable after about 4 - and yet (over something like a call center) that's what I prefer.

[TOBEY32]

Should mention that anemia (worse some times than others) also plays a part. Much less strenuous physical tasks can cause my heart to race. Things that wouldn't have been so physical before, or with most people...

[annekat]

My PN is getting better as my WG symptoms in general are improving and I'm getting closer to a possible remission. I'm sorry to hear that both of you are having the problems with it that you are. My feet have never felt like they are "on fire"; the main pain I get is from bunions. I do get some cramping which can be painful, but that is improving, too. Good for you, Al, walking a couple of miles a day. I'm not sure my bunions would allow that, although I have recently found some better fitting footwear.

Anne

[Trudy]

Hi Tobey
I am still not sure of the origin of your PN. My husband has had PN for years from diabetes. I also have it from vasculitis. It seems to affect us very differently and mine progressed very suddenly and severely. The past three weeks I have been in a wheelchair, but I am slowly regaining function. Along with the function I have more feeling, however in a painful way. Everything I have researched seems to support "if you don't use it, you lose it" therory. Like Al I am pushing through the pain for the ability to keep going. Afterall your whole body needs that exercise. My feet start out numb in the morning and I have very little range of motion. After concerted efffort of exercising them thoughout the day, I can curl my toes and flex in all directions by day's end.
During my research I came across a site that sells a B vitamin formula specifically for PN. My husband ordered some and has already used it for a month. He takes the lowest amount and has already seen a marked improvement. He also wears compression support socks when exercising. Neuropathy, the pain of nerve damage and what can be done about it (http://www.mcvitamins.com/neuropathy.htm)
I think we all hope for our old life to return, but if it never can trying for the best quality of life is a good goal!

[Al]

Should mention that anemia (worse some times than others) also plays a part. Much less strenuous physical tasks can cause my heart to race. Things that wouldn't have been so physical before, or with most people...

Not sure about this, David. The racing heart doesn't sound connected to anemia. More like oxygen deprivation. Have you had your oxygen level checked under conditions like stair-climbing?

Al

[Al]

My PN is getting better as my WG symptoms in general are improving and I'm getting closer to a possible remission. I'm sorry to hear that both of you are having the problems with it that you are. My feet have never felt like they are "on fire"; the main pain I get is from bunions. I do get some cramping which can be painful, but that is improving, too. Good for you, Al, walking a couple of miles a day. I'm not sure my bunions would allow that, although I have recently found some better fitting footwear.
Anne, I found a real shoe guy, recommended by several podiatrists, and splurged for some good walking shoes with an orthotic insert. For me, it made a ton of difference. Don't know about the bunions, though.

Al

[Al]

During my research I came across a site that sells a B vitamin formula specifically for PN. My husband ordered some and has already used it for a month. He takes the lowest amount and has already seen a marked improvement. He also wears compression support socks when exercising.
I think we all hope for our old life to return, but if it never can trying for the best quality of life is a good goal!

Trudy, as lack of certain B vitamins is associated with some kinds of neuropathy, this seems like a good approach. In my case, this is not an issue. I have none of the known risk factors, and the neurologist just put it down to "idiopathic neuropathy". I originally blamed physical trauma, as I had just had been severely rear-ended. Actually, I still believe in the physical trauma theory, but now associate it with the WG as well: Physical trauma can serve as a trigger in precisely the same way that infections can, by inciting pro-inflammatory pathways in the immune system.

I have found some socks that are sold to diabetics, and are non-binding around the ankles. These are quite comfortable for everyday use.

Al

[Trudy]

Al

The third listed cause for PN is usually autoimmune.Between pain and drugs I forgot to reply to my own thread weeks ago! It seems you can have an attack of Sciatica and Neuropathy at the same time. My left foot was numb from neuropathy and I stubbed it against the center support of our couch, flew into the air “Superwoman” style landing safely on the couch. I couldn’t stop laughing…it was really funny. The next morning I awoke to excruciating pain from the base of my spine, across my hip, and down my left leg ending at the peroneal tendon (ankle). According to the neuropathy specialist I saw, my nerves were already inflamed and vulnerable; then I bruised the sciatic nerve bundle when I fell. The result escalated the neuropathy leaving me unable to walk. This may be what happened with your accident.

[Dirty Don]

"idiopathic neuropathyAl

I got the same response while in hospital. I complained often that the sock on my left leg/ankle was too tight and being pumped up even tighter. The docs/nurses explained it as above, except in my case it was 'IDIOT neuropathy'! But, it's funny that that is where the worst of my neuropathy has taken hold. Didn't know how to respond at the time, and now the damage seems to be done! Sheesh!

[Al]

Trudy,

Interesting story, and an entertaining one--except for the ensuing pain, of course! In my case, it would not have been sciatica. True, my back spasmed badly soon after the accident, but the neuropathy started about 8 days later, and was on the tops of both feet. The neurologist did run an ANA test, which was slightly elevated, but not high enough to suspect lupus. But he did not look for any other autoimmune involvement. These days, the recommendation is to do an ANCA test for any unexplained mononeuritis. But he did not order such a test at the time. But from other evidence, I know that I had had disease activity some years before it it was diagnosed.

Al

[drz]

Should mention that anemia (worse some times than others) also plays a part. Much less strenuous physical tasks can cause my heart to race. Things that wouldn't have been so physical before, or with most people...

I had this for many months in the rehab facilities after release from hospital treatment. I needed weekly transfusions the first month and any exercise like walking up ten steps would raise my pulse 25-30% and cause wheezing from shortness of breath if I pushed myself further. As lungs healed and bleeding reduced and kidney function improved, anemia improved along with breathing and ability to exercise more. I can now (18 months later) walk a half mile on most days with only mild shortness of breath requiring a short rest.

I had serious neuropathy for years from diabetes before Wegs attack but the Wegs made it worse. Mine is usually worse in mornings or when I am sitting down like a couple hours. Walking seems to help improve the circulation which seems to reduce the numbness a little but it is always present but some times worse than others. For me much of the pain decreased as numbness increased but then weakness and nerve damage also increased which decreased my mobility and added a higher risk of stumbles and falls along with loss of balance from Wegs which is very bad combination and dangerous for me with my osteoporosis from diabetes and Wegs (pred meds).

Finding a job that you can handle can be a challenge when your endurance is limited from the Wegs. Could you try working half days to see how it goes for you?

[annekat]

Anne, I found a real shoe guy, recommended by several podiatrists, and splurged for some good walking shoes with an orthotic insert. For me, it made a ton of difference. Don't know about the bunions, though.

Al Al, I've been researching shoes and orthotic inserts, too, and get the feeling many of them can help the pain of bunions, too, by improving the overall dynamics of your feet... alignment of bones, arch support, etc. I should go to a podiatrist, but it seems to be on the back burner at the moment with my having neglected dental and vision problems on top of dealing with WG.

Anne

[Sangye]

A racing heart is common with anemia, since the heart is trying to work harder to get oxygenated blood to the tissues. The important question is why are you anemic? It needs to be dx'ed and treated.

As far as standing/walking for prolonged periods with moderate to severe PN it is very individual. You can test it out yourself before applying for jobs that require it.

[Al]

Anemia is closely related to kidney issues, as they produce the hormone that tells the bone marrow to make red blood cells. I am familiar with anemia. My hematocrit, the prime indicator of marrow issues, is now at 32, which is my best in months. It is still way low, compared to "normal", but is actually a big improvement. But my O2 levels are pretty good, and my lungs have mostly recovered. You take your improvements where you find them.

About the neuropathy: Interestingly, I have the most trouble when I am sitting in place wearing leather shoes, or in bed. Walking or otherwise being active is good; staying busy seems to help immensely, but going one-one-one with the sheets is a nuisance.

Anne, if you have a need for new shoes, I can recommend a great vendor in Seattle. You don't get that kind of service at Nordstrom's, or at Neovita, which is sort of the HairMasters of shoe fitting. (The podiatrist said that he could make a custom orthtic for me at so many dollars, but that this guy could give me a shoe and the orthotic for less. Plus he would give me some stretching exercises. I have had no foot problems since, other than for the neuropathy, which will always be with me.

Al

[annekat]

Anne, if you have a need for new shoes, I can recommend a great vendor in Seattle. You don't get that kind of service at Nordstrom's, or at Neovita, which is sort of the HairMasters of shoe fitting. (The podiatrist said that he could make a custom orthtic for me at so many dollars, but that this guy could give me a shoe and the orthotic for less. Plus he would give me some stretching exercises. I have had no foot problems since, other than for the neuropathy, which will always be with me.

Al

Thanks, Al,

I've found a pair of waterproof hiking boots that have more room than most in the front of the foot, important for bunions, and also seem to give good overall fit and support for my feet. I've used gel toe separators and bunion pads in them with success. Other than that, I'll be trying a couple of somewhat more stylish but practical things I've bought, when all this Pacific Northwest muck starts to dry up. I spend a lot of the year in sandals, have already found some that are therapeutic for my bunion feet, and have been investigating others..... there are orthotic shoe and sandal companies online and other sites especially for people with bunions, and quite a selection of bunion aids that can be worn with shoes. I know there are a lot of shoes I can't wear, but am finding more and more encouragement that there are decent alternatives. But if I get discouraged, I might want to know the name of that vendor. If you'd like to PM me with his name, I'll save the info! Otherwise, I'll PM you and ask you, should that time come.

Anne