[Ron9]

This is long but .... wanted to give as much info as I could.

My feet have hurt for almost five years now. My PN came on April ‘04. Tested - unknown cause.

I am so use to the tight/ache feelings ..... I mostly just try to ignore it (no meds - never did take anything).

I also (mostly) ignore my feet all together. I realize I should not ignore them but ....... I do.

I am 63 years old. I have biggish (12.5 US) flat feet. Second toe is longer. I’ve been told I am not diabetic (blood testing). Not overweight.

About a month ago (in the shower) I noticed my 4th toe on my right foot was “hooked”. It was also stiff.

About a week ago (in the shower) ...... ugg ALL five toes were hooked (right foot). Big toe also bent in along with the joint bent down.

All five toes were/are stiff.

After reading what I could find ... it looked like claw toe to me but .... most of the things I read claim neither for the big toe. Well my big toe is also affected. I guess claw toe in the big toe is a no go due to not enough joints for claw toe so ......

It really don’t make much difference if it is claw toe or hammer toe or any of the two or three other names I found .... it is a mess.

A couple of days after the bad news discovery - I discovered something else that kind of gave me a tad of hope.

Sitting on a chair legs straight down ankle 90 bent (foot 90 degrees from leg) the five toes are bent bad.

If I slide that foot out (like 45 degree ankle bend) the toes mostly straighten out (mostly not totally).

So ....... it is obvious there is an imbalance in what ever muscle/tendons or what ever ...... something has shrank (tightened up) or something has lengthened or weakened to cause the imbalance.

TWO POTENTIAL SELF INFLICTED CAUSES:

A. This entire winter I’ve worn shoes all day (unlike ever before). I sit at my desk all day and really don’t walk all that much. The shoes are soft but do have a firm fixed sole and I think my toes were smashing the end ...... (esp with B.) My legs are normally on a shelf under my desk (pretty much straight out from my hips).

B.
I may have caused this (or aggravated it helping to to “come on”) by something I did for 18 hours a day - seven days a week for a month.

I am trying to get “Ron’s Race Night” going as a ...... umm fun thing lol.

I have five Nintendo DS units (had held video game units) I get a racing game (or three or five) and complete them. Then I lend a unit and a game to someone so they can practice whenever the want for ........ race night.

The last set of games were HARD HARD HARD to complete and very very tense and ......... stressful.

I noticed I clinched up my feet in the thick of the races (trying to win to unlock cars and other races).

So ...... 18 hours a day - seven days a week with clinched up feet ........ then wham bent toes .......

It hit low 60s yesterday here in Kansas City ...... that meant fire up my motorcycle and get out of the house ..... well .....

I put on my boots and ...... could not bare the pain and was forced to abandon the get away.

At this point all five toes are still flexible. I’ve bought some gel “caps” - toe crest cushion - toe spreaders and ...... getting into some exercises.

1. Is this very common in people with PN? (some reading list PN as a possible cause along with tight toe box shoes)

2. Is there any hope of me stretching what ever has tightened up and getting my toes better with exercises? - or (more likely just going to get worse and less and less flexible?

3. Is there any chance at all this is (could be) temporary due to the hours and hours of strong toe/foot clinching I did? (I know I doubt that also).

4. Anyone else have some form of this - anything you did help?


Thanks ........

[Jomar]

Hi ,
I'm not sure about the PN or if it is related to it.
But it sounds like might be worth it to go see a physical therapist for an evaluation, therapy and stretches.

[glenntaj]

--I know you've had a certain amount of testing done, but to your knowledge, have they done any testing for some of the hereditary neuropathies, such as Charcot-Marie-Tooth, that tend to produce symptoms like that when the feet become de-enervated?

Take a look at some of this:

http://neuromuscular.wustl.edu/time/hmsn.html

http://neuromuscular.wustl.edu/synmot.html#distalsma

http://neuromuscular.wustl.edu/time/hsn.htm


The lists of hereditary syndromes is very long, and while some are more common than others, very few neuros not at research centers are all that aware of them or the testing for at least some of them . . .

[Raglet]

I have claw toes on both feet. I have been told that if it is possible to straighten the toes (even if you have to use your hands to do it) then it is not a tendon problem. If the tendons tighten and claw up the toes, they become stuck in that position.

My claw toes are caused by muscle weakenss, which means the stronger muscle predominates and curls up the toes. Actually some of my toes are paralysed, my big toes haven't moved for years and are actually curled upwards for some reason. The same thing is starting to happen to one of my hands.

best thing to do is to ask your doctor - if you can move your toes I would take that as a good sign. My toes barely move, and my big toes don't move at all.

hth

raglet

[Ron9]

I would like to thank - the three of you for your comments.

I actually thought this problem would be more prevalent in the PN community - than it seems to be. That is good. PN people don’t need even more problems to deal with. Some of my reading mentioned PN (or other nerve damage as a potential cause of this). Mostly they talk about type of shoe. Well since I’ve worked at home for 25 years ...... shoes are not used as much as most other people.

Jo*mar - I’m really not in the position to go to the “professionals” all that much. No insurance and living on my social security. Also often (most of the time) the professionals tell me the very same thing that my research has already told me.

The messages are normally “deal with it” or “spend thousands and thousands first THEN deal with it”. >>> "want some pills?"

glenntaj - while it could be - hereditary (in my case) is not as logical of an avenue (for me to dig into) as other potential causes and potential things that could help. What I am saying - that may be later in my research. No one in my family has any of this but .... I am not sure my father was my father. He was in a “dad” way but I’ve been told - not in a bio way.

Raglet ....... ugg - we have something to deal with ok. I have studied (need more) about the imbalance - weakness that causes it.

Right now I am digging at some potential logical causes (in my case). Some things I have done (and some born with) - some I have acquired (as others have) are my first places to start. ESPECIALLY things that might help - reduce the problem.

The cause is important - only from the STOP that standpoint. I am much more interested in things I can do about it - to reduce the negative effects on my life. I have a hermit type of lifestyle (after being married most of my life) but do like to get out of the house at least some. To me that means - motorcycle. I am not a “biker” but I am a motorcycle guy and have been for 50 years. Besides my motorcycle gets 71 MPG in town lol.

- PN
- smoked my entire life
- crunched my feet (clinched) 18 hours a day for a month
- toe stands - I’ve done toe lifts several times a day for four or five years now (thinking it would help - may have actually hurt)
- wore shoes all day long (for three months) - while sitting at my desk ........ I’ve never done that before EVER
- being born with big flat feet - longer 2nd toe

Rather than nothing - I got right on it. Research about it and research about potential helpful things.

There has already been “some” improvement. It could be mostly wishful thinking but .... really I think I have helped myself “some” already.

- toe stretchers ... silly as it sounds - I think EVERYONE should get some. I got some cheap ones from the drug store to use (and start getting use to) while some better (gel) ones were ordered (got them yesterday - HealthyToes).

These help your feet feel better folks ....... at least my feet and hundreds (yeah hundreds) of reviews from all kinds of people - with and without foot problems. YUP they are helping me.

- toe exercises

- understanding (kind of) about things like The Extensor Hallucis Longus / brevis

- shin stretches

- toe spacers

- toe crest cushions

- I altered my motorcycle boots. I went from “I can not walk 5 foot in them” - to “hey this is not too bad at all” - part alteration and part big toe getting / acting better.

and so on ........

Most of the improvement (so far - real or imagined) is in the big toe - and boy - any improvement there is very helpful.

At first - I had to move it by hand. Also my ankle could not be at 90degree (leg/foot 90degree).

NOW - I can wiggle all five toes without touching them.

AND - I can straighten my big toe - (without touching it) even at a 90degree (leg/foot) angle.

It still bends on its own (hammertoe-ish) when I pull my foot back (90degree angle) and straightens (on it own) if I slide my foot out from from straight down.

I am not sure if I am really on the way to helping myself but .... I really do think I have created at least SOME - improvement or slowed it down some or something.

When I first got PN - I bought a very very nice foot vibrator (250 bucks) and used it some - I am using that more also. I often use it while I have the toe stretcher on. I also think that is helping.

Thanks again guys for your comments.

[pabb]

read up on magnesium

[dahlek]

I have really only found two-only one is are on PT exercise lists. The one on the lists is the 'towell curl your toes' one... Never could do that even when I'd had 'good feet'! The one I've found works best for me is the marble one...

Get a dozen marbles, put them on a towell on a big tray and a bowl of some sort...the goal is to get and release the marbles into the bowl .... The first week I did this? I had the worst foot pain imagainable! I couldn't spread my toes to 'get' the marbles as they just did not work? So I'd mash them inbetween the toes and let gravity drop them into the bowl. It got easier after a while tho. But, it worked out and those digits did get more flexible after a few weeks of careful exercise. This is NOT one you want to go and do full out right off for sure! Your whole foot will complain loudly if you try.

When we have PN, we do NOT use our feet properly, including the toes. Like other muscles and attachments these become lax or contract thru disuse.

GOOD Physical therapists can and are useful to getting one to 'walk' more normally and use the body more like we should similar to before all our pain defense mechinisms did that good old number on us. That includes the toes?
I understand your physical and other limits tho... Who knows? You mite find someone and get lucky.....

Toe exercises are limited, as shown here under 'toe':
http://www.fairview.org/healthlibrar..._index_2.htm#T

Wish there were more to contribute. And yep those dangling digits are disconcerting!

Try playing with marbles - at our age, why not? 's - j

[Ron9]

pabb - thanks for reminding me about magnesium. While I could not find any (exact) direct links from my toe problem and magnesium - I did find “close enough logic”.

I use to take the magnesium / calcium / zinc supplement - I had been out of it for months. I went and got some.

Since nothing (none of the many many supplements) I was taking seemed to make any difference - I had slacked off many (most) of them over the last few years. I had mostly just stayed with 1 aspirin a day, one multi vit and my very small amount of beta blocker. About a year ago I got serious again with fish oil. Over the last few weeks I am back on several that are suppose to help circulation.

dahlek - I had read about the marble exercises but had yet to include that into my toe exercises. I could not find any marbles around the house but did find some board games. I now have a pouch of 24 items including some dice. I mostly try to use the right toes (the messed up ones) and it is tuff as the 4th toe and little to are so scrunched up - if I pick up one in that area - it is hard to release into the bowl. If I try it around my big/2nd toe area there is so much space - they are hard to pick up but ........ I keep going until I get them all. I pick up a few with my left toes also but put most of the effort in with my affected foot. I have now included that in twice a day.

With the alterations (took out a pad - cut three slices above the toe box) in my boots and the gel toe crown pad - gel sleeve over my big toe - I was able to get out on my motorcycle Saturday. I was out for a couple of hours and included some walking around at WalMart - no pain - no raw spot on my toe(s) from rubbing the (now altered) boots.

Not that it matters but - no one will even notice the boot alterations. I am partial to those boots (Dr Martens) I bought about 15 years ago (still made in England at that time). I was sad to think I might have to replace them and had started looking for boots with a bigger toe box.

Since I am about 80% engineer anyway .... I started getting creative ideas. I wanted to try to save my old buddies (the boots) and ..... I did.

[mrsD]

read your labels on the cal/mag/zinc.

Magnesium Oxide is not appreciably absorbed...it is useless.

[dahlek]

my 'experiences with marbles' was less than enthralling as well.
I had NO toe-tone? At all. I 'slaved' thru therapy by just smushing the marbles between my toes and holding them over the 'dish' until gravity happened. [THAT is what gravity is for?] Took about 2 weeks of daily smooshing before toes decided to sort of work. Got better about the 'letting go' part, but that is when my whole feet started to ache from the insteps to the arches, ankles and beyond! It was part and parcel of the using those muscles again I believe. That's why I urge you to go slow! I'd felt as if I'd broken a new metatarsal bone or something, it was soo painful. Of course Tramadol made NO impression on this pain. Not anything did, but more but slow workouts. Cut back if you start to get that pain. But keep it up, and don't give up. Hugs and hope always - j