Peripheral Neuropathy Question (Feet)

[TOBEY32]

Does anyone know if using your feet more (being more physical) can cause Foot PN to worsen?
Started a job that's more physical than I anticipated. Keeping my eyes open for a better "fitting" job, but wanted to try and stay at this while looking - yet my "dogs" are not just barking but yelping!

David

[Dirty Don]

I had/have very minor PN across the top of my feet...after a year, only a portion of it remains in my left foot only. I don't have it on the soles of my feet at all. I golf (don't say a thing, I'm retired!! LOL), so I rely on balancing my feet a lot and walk a lot on the course...while I've fallen a few times cuz I forgot about THAT numb foot getting up and over things, I still have functioned well enough although you're right, the feet got very tired, not sore, just tired. I guess what I'm saying is that, for me, the PN has reduced quite a bit and hasn't really screwed things up. I've done foot massages (self!! LOL, again!) and calf massages, and they seemed to help the circulation quite a bit.

[TOBEY32]

NOW I have to ask (Dirty Don) WHAT makes PN go away? You make it sound like it was time. Thought it was sort of a forever thing.
The feeling I get after being on them extensively is more of the same: burning, "pings & pangs", and that "like walking on bubble wrap" feeling.

[drz]

I have had serious peripheral neuropathy for many years since my diabetes was misdiagnosed for many years, even longer than my Wegs. PN refers to death of nerves and usually appears first in portions of body most extreme from the brain and heart like your feet or fingers and is usually noticed in the sensory nerves first with feelings of tingling, numbness, burning, freezing, feeling of having electric shocks, or feeling like you were stabbed with a pin or needle or similar such feelings. Motor nerves and autonomic nerves can also be damaged. Damage to motor nerves will usually be noticed as weakness, spasms, cramps, and may impair your balance and coordination. I had many stumbles and falls till I learned to walk differently to compensate for dying motor nerves.

Attacks on autonomic nerves are probably more serious and likely to create problems in blood pressure, heart rate, control of bladder, constipation or the alternative, sexual dysfunction etc. Damage to autonomic nerves are probably more like to happen with diabetes than Wegs but very serious to those unfortunate enough to be afflicted.

In my experience the worst thing for me is sitting still for any long period. I have to get up every couple hours at least and walk around to try reduce the numbness a little. If I don't the numbness increases. High blood sugars and limited activity increase the numbness sometimes half way up or more to my knees. It feels like my feet are wrapped in twenty pairs of heavy wool socks or thick cotton batting. Massages and light exercises help reduce the numbness somewhat by improving circulation. So does reducing my blood sugars closer to normal levels. This is done by taking more insulin and limiting intake of carbs.

If I over do my exercising by trying to walk too much I will have increase in problems in motor nerves like cramps, weakness, spasms etc. For me 15-20 minutes of slow walking up to half mile is generally safe. Often I can double that but some times not. For me an hour of physical activity is almost certain to result in a increase in symptoms of neuropathy to my motor nerves.

I can't sort out what over doing physical activities does to my autonomic system since those issues are compounded by the many meds i take, my diabetes, and the damage to organs like kidneys and lungs from the Wegs.

More info is on the Wikipedia site including this quote which describes something that might sound familiar to some readers:" Mononeuritis multiplex may also cause pain, which is characterized as deep, aching pain that is worse at night, is frequently in the lower back, hip, or leg. In people with diabetes mellitus (https://en.wikipedia.org/wiki/Diabetes_mellitus), mononeuritis multiplex is typically encountered as acute, unilateral, severe thigh pain followed by anterior muscle weakness and loss of knee reflex." The second cause listed for this MM is Wegener's granulomatosis and other vasculitis.

Electrodiagnostics can help sort out the severity of your neuropathy but it is a rather unpleasant experience. The other slight temporary benefit is it seems to reduce my neuropathy a little for a short time.

Good luck at work and l hope the job goes well.

[Dirty Don]

I don't know that it WILL go away...I was told to give it about 6 months or so by the physical therapist (he also had me doing many balancing exercises just for the legs and feet usage)...if it was still there, then most likely would remain there. Mine started in my shins and across tops of both feet in both legs, subsided completely in the right leg but left with the worst in left leg. It's basic nervous system damage which is always iffy at best...have known many football players with nerve damage...some healed, some never did. Has a lot to do with how badly the nerves were damaged/stretched. If they're torn, then no improvement - surgery is tenuous at best. If they're stretched, takes time to regenerate connections. If they're inflamed, chances are good it can be reduced. I did a lot of rubbing of shins & tops of feet, heavy massaging, working the blood to the affected areas...if nothing else, it felt good! I hoped it was my doing somewhat, but after about 6 mos. the greatest part of the numbness went away. So, yeah, probably time is the greatest factor. You may also look into blood circulation...sometimes poor circulation can cause similar symptoms. -Don

[TOBEY32]

I've had my PN from day one of all this - a year and a half.
It's never been any better. Always about the same. At times, it seems a little more, a little worse.

[Dirty Don]

I only assume you have gathered advice from other than here...podiatrists, orthopedic docs, neurologists, etc. As you describe the PN you have and the length of time, in my mind, the door has probably shut on you unless it is truly a side effect from the drugs of WG...but, I know, mine was incurred at the hospital while in ICU...docs never had much to say about it, docs still don't except that the damage is done and 'may' be with me forever. IF, in fact, it is permanent, I would be looking for relief rather than a cure. Look at MayoClinic.com to see what they, or Hopkins or the like, say about this kind of WG damage. Best of luck!

[TOBEY32]

Thanks for your 2-cents drz and Dirty Don.

Would you believe I have NEVER gone to any doctor regarding my feet. Even with the way they feel sometimes.
I guess in the beginning I thought it would go away, and now I think it's too late.
Also, I thought they were just gonna tell me to deal with it.
I feel a little foolish for assuming certain things, as maybe they would've had some other (better) news.
I will look into it now though.

[Dirty Don]

Don't EVER feel foolish or shy or be assumptive (I assumed too much and it almost killed me! Yikes!) about this damnable disease...it's so strange, so out of the blue...keep at it, you'll find your peace with it, just keep on keepin on! Take care!

[AmyA]

I too have been having trouble with foot pain. I always thought it just didn't sound serious to say "my feet hurt". At the end of my work day (and sometimes in the middle) it feels like I've injured my feet just by being on them again. Originally my rheumy gave me some pain meds for comfort, but they don't seem to help. After my last visit with good lab work, my rheumy is sending me to a neurologist for the pain. She thinks I may have suffered some nerve damage somewhere along the way. I see the neurologist on Monday and hopefully what I find out can help you too. For me a nice long pedicure with massage always helps a little! haha

[AmyA]

Tobey, I did go to a neurologist and had a nerve test where they shocked my legs and feet for almost an hour! According to that doctor, nerve damage isn't my problem. He suggested I get x-rays of my feet to check for stress fractures or have a bone density test. I ended up calling my rheumy to let her know my pain has since gotten worse. Somedays I feel like the pain is moving up my legs. Luckily my rheumy is taking my complaints seriously and I have a follow up appointment on Tuesday. I too work on my feet all day and know that the pain can be brutal and goes far beyond sore. I hope I can find out some more good info to pass on to you.

[Pete]

Tobey, I did go to a neurologist and had a nerve test where they shocked my legs and feet for almost an hour! According to that doctor, nerve damage isn't my problem. He suggested I get x-rays of my feet to check for stress fractures or have a bone density test. I ended up calling my rheumy to let her know my pain has since gotten worse. Somedays I feel like the pain is moving up my legs. Luckily my rheumy is taking my complaints seriously and I have a follow up appointment on Tuesday. I too work on my feet all day and know that the pain can be brutal and goes far beyond sore. I hope I can find out some more good info to pass on to you.

Hi Amy,

If you have to stand in one place all day, you may want to ask your boss to provide you with a stool to sit on as a reasonable accommodation under the Americans with Disabilities Act.

[RudiK]

I was diagnosed with PN about a month before being diagnosed with WG. Three different specialists gave me three different answers as to what it was or what caused and what to do about it. Once I was diagnosed with WG they all blamed it on WG. At the beginning I had no feeling on the bottom and sides of both feet, and no feeling at all in my toes. The feeling on top of the feet consisted of some "tingling". But, the worst part was the constant itching and burning inside my feet any time I moved them, with the worst feeling being in the area where the toes "connect" to the feet. After three months of trying different medications and different dosages, we found that 200mg of Gabapentin worked the best, at least it reduced or eliminated the itching and burning when I rested. It is still there when I walk and gets worse when I get tired and walk. And just like others have stated here, I have to be careful when I walk and have fallen on my face many times, mostly at home when I work in my field and in my garden. When we go out I use a walker to help me and to keep me from loosing my balance and fall. Since I'm retired, I can plan my "work schedule" as I see fit. The NP has now "spread" to my right hand and my left arm. I have only limited feelings in the finger tips of my thumb, the index finger and the middle finger of my right hand. I suffer sporadic numbness in my whole left arm, especially when I hold the arm in one position for several minutes. Doctors did some nerve testing a circulation testing and couldn't find anything, it is all caused by WG. Although I'm in remission, WG is still causing problems. At least that is what the doctors say.

[AmyA]

Pete,
While I do have a stool and a note from my doctor saying I should sit more often, the challenge is getting a chance to do it. I work in a pharmacy where multi-tasking is a must. It's hard to get a good rest when I'm constantly running from drive-thru (my worst enemy) and people in the store. I've been there for 9 years now, but with my new friend Wegener's, I do sometimes feel guilty telling the staff and my pharmacist that I have to sit. I have pretty good insurance and worry about job security. I know my main focus should be my pain, but I do worry about my job performance as well.

[Pete]

That's a tough situation. You probably have to be careful about pain meds, too. :-(

[KathyB]

Hi Amy -- not knowing what type of job you have (and duties) prior to the last post, I would have recommended a cushy mat on which to stand (sell them in Home Depot type of stores as well as at restaurant vending stores/online). Sounds like you have to juggle a number of different duties! I would hate to think your employer would dismiss you because of WG -- seems discriminatory. ??? I have neuropathy issues in my family (mom describes her's like her feet are round on the bottom; my sister is permanently disabled with PN to include drop foot and hands -- she was a hairdresser!). Many of our family members have a touch of neuropathy in the feet -- I'm no exception. In my hands, too. Please be careful on your job!! My sister turned quickly while in her kitchen a few years ago and literally left her leg behind when moving forward (she had her braces on, too) and broke her leg badly! It can truly be more than a nuisance!!

KB

[pberggren1]

That totally sucks Amy. I sure hope you can hang onto your job somehow, maybe even less hours.

[drz]

I was diagnosed with PN about a month before being diagnosed with WG. Three different specialists gave me three different answers as to what it was or what caused and what to do about it. Once I was diagnosed with WG they all blamed it on WG. At the beginning I had no feeling on the bottom and sides of both feet, and no feeling at all in my toes. The feeling on top of the feet consisted of some "tingling". But, the worst part was the constant itching and burning inside my feet any time I moved them, with the worst feeling being in the area where the toes "connect" to the feet. After three months of trying different medications and different dosages, we found that 200mg of Gabapentin worked the best, at least it reduced or eliminated the itching and burning when I rested. It is still there when I walk and gets worse when I get tired and walk. And just like others have stated here, I have to be careful when I walk and have fallen on my face many times, mostly at home when I work in my field and in my garden. When we go out I use a walker to help me and to keep me from loosing my balance and fall. Since I'm retired, I can plan my "work schedule" as I see fit. The NP has now "spread" to my right hand and my left arm. I have only limited feelings in the finger tips of my thumb, the index finger and the middle finger of my right hand. I suffer sporadic numbness in my whole left arm, especially when I hold the arm in one position for several minutes. Doctors did some nerve testing a circulation testing and couldn't find anything, it is all caused by WG. Although I'm in remission, WG is still causing problems. At least that is what the doctors say.

I have neuropathy years before the Wegs due to diabetes but the Wegs made it worse. I am very careful to try avoid a fall due to warnings about risk due to osteoporosis from the pred meds. I am taking some vestibular rehab to try maintain my balance but the worsening neuropathy is making the balance issues harder. I have had vesitibular hypofunction on right side since Wegs took all my hearing in right ear and broke my balance mechanism. I have had and still have the symptoms you describe with loss of feeling in the feet, also starting in finger tips now, and occasional burning, itching, and or stabbing sensations in toes. I often use a cane to help me walk straighten and reduce risk of falling. I have gone through Fall Prevention classes three times and attend whenever they are offered near me. I have learned to walk sort of like a duck or like a frogman wearing flippers to keep stumbling from foot drop from neuropathy. I had many falls and injuries till I figured this out. I also found the Gabapentin also made my balance and coordination much worse and caused me to bump into things so I gave it up. Once the numbness increased most of the pains decreased in frequency.

[drz]

Pete,
While I do have a stool and a note from my doctor saying I should sit more often, the challenge is getting a chance to do it. I work in a pharmacy where multi-tasking is a must. It's hard to get a good rest when I'm constantly running from drive-thru (my worst enemy) and people in the store. I've been there for 9 years now, but with my new friend Wegener's, I do sometimes feel guilty telling the staff and my pharmacist that I have to sit. I have pretty good insurance and worry about job security. I know my main focus should be my pain, but I do worry about my job performance as well.

Sounds like a tough conflict and heavily dependent upon how accommodating your employer and co-workers are for your medical issues. Some are great, others not at all.

[KathyB]

Tobey, I did go to a neurologist and had a nerve test where they shocked my legs and feet for almost an hour! According to that doctor, nerve damage isn't my problem. He suggested I get x-rays of my feet to check for stress fractures or have a bone density test. I ended up calling my rheumy to let her know my pain has since gotten worse. Somedays I feel like the pain is moving up my legs. Luckily my rheumy is taking my complaints seriously and I have a follow up appointment on Tuesday. I too work on my feet all day and know that the pain can be brutal and goes far beyond sore. I hope I can find out some more good info to pass on to you.

Owwww! I had a whole battery of those tests back in my 30's when I was diagnosed with MS. Fortunately, I got a clean bill of health years later when they decided the exascerbation may have been a "one time" deal. (No lesions on my brain, just in the 4th and 5th lumbar/neck region.) My sister has both MS and peripheral nerve disease and has had EVERY SINGLE area of her body (even lips, eyelids, etc) "shocked" more than once. I remember the pain and fright of it all -- all I had to hold onto was the rail on the wall next to the bed. But after knowing what my sister went through, I had it easy!

KB

[AmyA]

Well, I recently had a bone scan and x-rays of my feet. I have a heel spur and what my doctor thinks is plantar fasciitis. Irritation and swelling of the thick tissue on the bottom of the feet. A typical patient is an active MAN age 40-70. I'm neither of those :) Right now my doctor wants me to try physical therapy. I already go to one doctor or another once to twice a month! I just don't know if that's something I can fit it my schedule. I've been reading up on some stretches I can do first thing in the morning and through out the day. I also have been forcing myself to take a seat more often at work. Life in a pharmacy these days are crazy with fall colds and flu shots so my chances are rare. From what I've read the condition usually improves with a year. Too long to suffer if you ask me.... Thanks for all the encouragement. Nobody gets it like you guys.

[drz]

Well, I recently had a bone scan and x-rays of my feet. I have a heel spur and what my doctor thinks is plantar fasciitis. Irritation and swelling of the thick tissue on the bottom of the feet. A typical patient is an active MAN age 40-70. I'm neither of those :) Right now my doctor wants me to try physical therapy. I already go to one doctor or another once to twice a month! I just don't know if that's something I can fit it my schedule. I've been reading up on some stretches I can do first thing in the morning and through out the day. I also have been forcing myself to take a seat more often at work. Life in a pharmacy these days are crazy with fall colds and flu shots so my chances are rare. From what I've read the condition usually improves with a year. Too long to suffer if you ask me.... Thanks for all the encouragement. Nobody gets it like you guys.

Before I was finally diagnosed with Wegs I spent about a year getting treatment for "supposed plantar fasciitis" with little or now relief in pain and cramps. It finally turned out to be a stress fracture in one ankle and Wegs. All the pain seemed to disappear after treatment for Wegs began. I guess I would be skeptical about such a diagnosis, it could be correct, but I would want a lot more confirmation that it wasn't just the Wegs dog biting you. Some where I still have a couple hundred dollars worth of braces and supports for plantar fasciitis that never did me any good. Good luck? PS do you have any other symptoms of possible Wegs flare?

[Girly3800]

My husband's first sign of the disease was neuropathy in one foot quickly followed by vasculitis lesions in his legs. The doctors are divided about the prognosis and even the name of it. The rheumatologist says it may in fact be permanent and has him on Neurontin for the symptoms - it does actually seem to help. It only treats the symptoms though. The neurologist calls it neuritis and feels that with time (and if the Wegener's is ever fully controlled) there is a good chance of improvement even without the Neurontin. My husband has resigned himself to the condition - to him it seems a fair residual effect of the disease if the rest of it fully goes away.