Alan has no pain!!!
 

Hi all:

I just had to start a new thread because I have written about what happened on my previous thread 'The Foot Center" but no one responded and I wanted to update you on what we have found that works. (In Alan's case), so it wouldn't hurt for anyone else to try, right.

Alan has had PN between his toes for over 15 years. He tried all the rubs, creams, fentanyl, vicodin, and sure they worked for a while. Dr. Theirl did his miracle thing, which helped Alan's whole body, but he still had the pain between the toes. Sometimes not so bad, but sometimes...Horrible.

Then he got the foot ulcer. That alone is horrible but combined with PN between his toes, well somedays his level of pain was a 10. Sometimes less, but there has really never been a day (except when he exercised at the gym, or went walking), that he could actually say "I have no pain". Now his feet are completely numb, and I know that doctors say "oh, he has pain, that is good, he still has feeling". Well, they aren't the people with the pain, right?"

So yesterday, we did an experiment. On the foot with the shoe boot, (the boot helps tremendously with the ulcer, so he can walk perfectly okay, because there is no friction with the ulcer), but the pain was still there between certain toes and on the inside and outside of his pinky toe.

This is his right foot. The one with the boot.

The left foot has no ulcer, he wears crocs or a regular shoe, and he has pain between his toes. HIs IVIG helped his balance and maybe a smidge of pain relief but when he would sit in his chair and watch tv, he would be shaking his foot so I know there was pain or buzzing.

So yesterday, we took cotton balls, 3 for each toe, to be exact. I took the 3 cotton balls, wedged them between each toe. Which spread out his toes. Exactly like the person who gives a gal a pedicure and puts that gadget on them. But the cotton balls add a level of padding, besides straightening out each toe. This was 10 a.m yesterday morning, right before he slept for the day (he had just finished his security guard shift). The true test of all these cotton balls would be what happened when he woke up, right?? Would the pain return when he shifted position??

Well, this is absolutely astounding. And this might only apply to Alan, but it worked. From 10 a.m. yesterday morning, (right now it's 10 a.m.). That's a 24 hour span.

I just asked him to specifically described his pain level before and now, after using the cotton balls between the toes.

This is what he just told me.

Left foot (it had been getting a wee better since the IVIG but some days he would have some pain, very rarely he would have no pain.

Well, since we have done the cotton ball thing, His left foot now has no pain. He is sitting watching tv, not shaking his foot, he has the cotton balls between each toe.

The right foot (the one with the shoe boot thing on it, and the one with the pinky toe problem, as well as the other pn between his toes), well there is no pain at all.

So we are not talking one hour, two hours, three hours. We are talking a level of pain relief that he has never experienced before.

So in his opinion, these cotton balls de-compress the nerves (that he thinks have been compressed for 15 years), we are not sure why his feet are completely numb but according to him "who the heck cares, I am not in pain, do you know what it is like to not be in pain for a whole day??"

Now he can't return to the gym and exercise until the foot ulcer heals and he is cleared to go back by his doctors. But until then, he'll wear the boot, and when he goes back to the podiatrist, hopefully they will do the one hour of regular shoe wearing, (the regranex is doing nicely), I don't think the ulcer is fully healed but it never looked so good, it looks clean, there is only a small little hole and usually it would bleed, get black, etc. I see none of that. It's a slow process, this healing of the ulcer, but at least Alan's pain level is diminishing.

I mean, to go from an 8 to a zero. Well, I think that is something to share information about, don't you.

Oh, Alan also wanted to share with you what he has used from Harriet Carter.
Here's what he purchased:
http://www.harrietcarter.com/index.c...-3badd82e350c/

He has used it exactly once. After that one time (for 10 minutes), maybe he stretched some nerves, some ligaments, whatever he did, but his pain got less.

He can't wait to be free from the boot, no ulcer, to be able to sit there in the chair, put these things on his feet and do the toe exercises. He said these little toe flexers felt great.

Now I am not saying that this stuff will work for diabetic neuropathy or anyone else's neuropathy, but heck, if we found something after 15 years (and I could hit myself in the head for not thinking of the cotton ball thing between the toes), well I asked Alan, "how come none of your doctors ever suggested cotton balls between the toes, that your nerves might be squished together and maybe that's why you have the pain between certain toes"? He said "they don't know what causes neuropathy, they think either you are diabetic, it's your back, MS, an autoimmune, etc. Now we know that Alan has lots of autoimmune stuff going on because of what they found in his spinal fluid. So maybe the IVIG is taking care of that aspect.

But a simple stupid dollar item like stuffing cotton balls to spread out your toes, well, one can only wonder what might have happened if we did this years ago.

We are at the junction, of finding exactly how many cotton balls between which toes, but hey, right now, he's sitting, reading the paper and he's just fine.

This is a far cry from a guy who wanted to commit suicide a few years ago, let me tell you.

So if anyone cares to start stuffing cotton balls between your toes, hey, you might just have some relief. It's worth a shot.

Melody

I'd love to hear your thoughts on this!!!

I'm so glad he is pain free for that time. That is wonderful. It will be interesting to see in more time if it works or it was just a fluke. I hope it works. Maybe his toes were rubbing together and the cotton helps keep them apart. The doc probably didn't think of something outside the box like that other then a med or procedure. Sometimes little adjustments can make a huge difference. I know even a different material can send my pain in different directions. I'm sure he will be happy without his boot. I can remeber how annoying mine was but the transition was hard to the shoe. I'm glad things are looking better for him. Hopefully you guys will be dancing soon together.

All I can say is it is now 2 p.m. and Alan just said "Oh my god, I am still in no pain". We actually were able to go out to lunch.

So he is doing great. No pain. I asked him (we had to take the access-a-ride to visit a friend (who turned out not to be home, and there's Alan in a big shoe boot and we get off the acess-a-ride, turn around and get back on it to return home).

So I asked him "do you have any pain whatsoever and he said "right now, because I'm sitting down, what used to be a 10, is now a 1 or a slight 2. I said what is a 1 or a slight 2? and he said: "I don't even notice it".

So that's good.

Let's hope we stumbled onto something here.

Melody

Good luck sweet Alan and darling Mel.......Sue

Thanks Melody - it's always so wonderful to hear good positive stories. Yours sounds like a hum dinger. I am very very glad that Alan has no pain using the cottong balls.

Funny about the cotton balls, though, I had seen this item called "Yoga toes" and was thinking it would do a similar thing. The good news is that you can put the yoga toes in the freezer and that might give added pain relief (if you needed it). Cold presses seem to help me the most but I will give the cotton balls a try. I don't have too much pain between the toes as much as pain in the whole top part of the foot....hard to describe

Here's a link to the "yoga toes". If you thought about getting a patent on the "cotton balls" idea, they might beat you to it, LOL!

http://www.yogapro.com/ts/toestretcher.html

HI Mel and Alan!!
That is just SOOO great to hear that Alan has no pain! Isn't it just crazy that it's just the smallest things that help sometimes!! Soon he'll be back in the gym being Rocky Balboa!! LOL LOL (((((HUGS))))) to you two!!

Hi, your Yoga Toes look exactly like Alan's toe flexer thing he got from Harriet Carter. I never thought about putting them in the freezer for a bit.

What a great idea. I shall tell him.

He is still getting good results. I just asked him. He took off the boot (because he's sitting down and not walking around).

I just peeked and he's not shaking his foot.

He explained "yeah, I get a little pain now and then, but it's much better, and if I dont' have to think about it, it's a bonus.

So this will be a work in progress. Finding exactly how much stretching of the toe (or toes), will ultimately do the trick.

At least it's a start.

Wouldn't it be great if they could mold a device to his exact specifications, and he could just put the device between his toes, and they would spread them out and there would no compression???

Don't think that could be a possiblity because feet vary from day to day and toes go into different positions. One position that works right now, might not work tomorrow.

But I am extremely thankful that we have at least latched on to a great idea. It can only get better.

He's going to tell the podiatrist on Wednesday about the cotton balls. Better yet, when the doctor takes off the boot, and the stock, all the cotton balls will go flying. I would love to see the expression on that doctor's face. Bet he never saw that before. lol

Mel

Hey Foxie Roxy.

How are you doing over there??

mel

Mel, you and Alan are quite a team! I'll give the cotton balls a try!

Great news Mel! I hope this continues for him. He certainly deserves a break from this stuff.

Cathie

Sounds like you two have hit the jackpot, so to speak :) , this is certainly great news, who would of ever thought of that, i am happy for you both, good stuff.:) and i hope it helps others too.
all the best
Brian :)

Mel--
 

--I think your analysis is right on the money.

Many of us--I would say most of us--who have neuropathy, from whatever cause (diabetic, toxic, autoimmune, whatever) seem to be far more prone to additional neuropathic effects from compressive forces that might not otherwise bother a "normal" person. I've written before how diabetics and people with vasculitic conditions are much more prone to carpal/tarsal tunnel effects than others; this "double crush" phenomenon works by adding pressure to already compromised nerve fibers, exacerbating already existent symptoms or producing them where there were not before. I suspect my radiculopathy symptoms are increased due to the already existent damage to my nerves, and so on.

In Alan's case, he certainly has other things going on, and his neuropathy has an immune component on some level, but taking away the additional forces of compression on his nerves may just reduce the pressure enough to provide good symptom control--and hopefully with the IVIg the other processes at work can be controlled, too.

You yourself have sort of noticed this, in a way--that lovely instrument that got your feet buzzing that time likely added compressive/constricitive forces to your neuropathic processes and upped your symptoms. You may find as time goes on that shoes that allow your feet "de-compression" room make a difference as to how often and severely you feel symptoms. Shoes designed for diabetics are supposed to take this into account, of course.

You might go the cotton ball--or felt/fleece covering--route--imagine if you both had cotton balls between your toes at a doctor's appointment. (A good conversation starter, at the least.)

Hi Dakota, Hi Cathie:

I only wish his psoriasis would get a break but I did try something new and it works really well on some of his spots.

I had gone into a medical supply store near my house (we have about 10 of them in a 20 block radius. I have no idea why there are so many medical supply stores but there are. And they sell the medical shoes, the braces, the walkers, etc.

So I went in to get a better deal on bandage rolls. Because every morning, after we do the cotton ball thing, and I do the ulcer thing I have to wrap up his whole foot (like the doctor showed me). This uses almost one complete roll.

Now you can purchase these rolls for either 89 cents or 99 cents (in the dollar stores). Melody had the bright idea to go to the Medical Supply store where maybe I could buy a case of these rolls.

Oh yeah, bright idea. Do you know how much a case of rolls are?? 12 rolls in a box. $18.00. Now why on earth would I buy a box of 12 rolls for $18.00 when I can go to the nearest dollar store (or even my local rite aid and buy a bandage roll (all sealed and sterile ) for either 89 or 99 cents??(doctor says, this part of the bandaging process doesn't need the sterility, only what goes over the ulcer, so I use 4 x 4 sterile gauze pads for that part. Then the bandage roll goes over.

So the medical supply lady said "you will get a better deal in the drug store for the bandage roll". Well, she got that right!!!

So as I was looking in the store, I gaze upon a great big jar of ointment. Now I had been using A&D ointment on his dry skin. Worked pretty good. I used the generic brand. So this big jar is 16 oz and it costs $6.00. And it's not just Vitamin A and Vitamin D. It's Vitamin A and D + E.
Here's a pic of the jar.

http://i73.photobucket.com/albums/i2...t/ointment.jpg

Now I have no idea if the Vitamin E makes such a big difference, but I can tell you that Alan used to have psoriasis between his eyebrows, in addition to behind his ears, and on his calf, and (well, let's just say various parts of his body). And the ivig sometimes makes it flare up.

So I had been using regular A&D and the skin would soften, but THIS STUFF, well, his forehead, and between his eyes are as clear as a baby's behind. And the stuff on his calves and on the side of his leg (he had a big bad one there), well whatever is in this ointment, well, his skin is very different.

And right now, he's laughing his head off in the living room watching something on tv, so you know his pain levels are zero to 1 right now, so the cotton ball thing is still in effect.

So between the Vitamin A, D & E ointment and the cotton balls, well, we might just go out on New Years Eve. That would be a first in 20 years.

One can only hope. lol

Can you tell me more
 

Melody,
You have been so inventive. Did you know that you can buy toe separators from this place: http://www.supportplus.com/product_d...cfm?STYLE=R214 They might work well and they could be washed. You said you didn't need sterile anywhere except directly over the ulcer.

I'm wondering if the reduction of friction is what eases Alan's neuropathy.

Oh ..forgot, can you tell me the name of that ointment you got for Alan?

Billye

First of all BILLYE:::

Thank you, thank you, thank you.

I think I will have to put two of those things between each toe, so I would buy 3 packages of these things. Cheap enough. And it beats the heck out of cotton balls because they would stay where they are supposed to stay. I put this site in my favorite place and later, when Alan puts his boot back on, he'll mosey on over to the computer and I shall show him these. He will be amazed.

Now for the name of the ointment? That's a good question.

The only thing it says on the front of the label is H H, (look at the upper right in the pic).
There is no other indicator of what company, no p.o box, no phone number,
It does have some kind of serial number on the label.
NDC 52471-0100-16

And on the bottom of the label (which I had thought were some kind of decorative hierogliphics, it actually are the two letters H H next to each other.

But just to make sure, when I again go on 20th Avenue (right now, it's pouring outside), this store is only a few blocks from my house, I shall go in and get the actual company name, then I'll post here.

And Glenn.

I don't need cotton balls, or any other kind of balls. lol

Ever since I did the methyl b-12, I have no problems. Very little burning from time to time.

I do wear crocks, sandals that don't compress my feet (I took at look at was in my closet that I used to wear and I went "oh my god, I could never put my toes into that little toe box. (You know the kind, the dainty shoes where women squeeze their feet into?)

Well, no more of that for me. I just bought new white slides, (that cover the front, give me support, but leave my toes exposed, so on a really hot day, I can go shopping (no major walking, I have diabetic shoes for that).

And while I hate the look of the diabetic shoes, I know that they won't compress my feet so I'll wear them in the fall and winter. No sandals then. And I heard they are coming out with Winter fur lined crocks CAN'T WAIT TO LOOK AT THOSE THINGS!!! lol

So, for me the Methyl B-12, was a god send. Not for Alan, he gave up too fast. He wanted instantaneous relief. Doesn't happen that way usually.

Five minutes ago, he was sitting in the chair (wearing the cotton balls, the sock, and the shoe boot and he goes, "my neuropathy is killing me". I said "the boot is probably too tight in the toe area".

I took off the boot, took off the sock, got the toe flexor things. YOU HAVE NO IDEA HOW LONG IT TOOK ME TO GET THESE TOE FLEXOR THINGS ON HIS FEET, his toes are so screwed up, I had to jam this thing between his toes, they are so squished together. My toes look nothing like his toes.

So I get the toe flexor thing on his feet and I said "now sit there and squeeze. That's exactly what he is doing. He says "oh, that's better".

Now how do I get doctors to pay attention to this?? Do you really think they are going to take our word for this??

Melody