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Every day management of Ledderhosen
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01/22/11 19:34
loonsong 
01/22/11 19:34
loonsong 

Re: Every day management of Ledderhosen

Di,

I am surprised a light flexible shoe works for you with LD. That is the type of shoe that made my condition worse.

I need a very firm shoe that is not flexible for the more I flex the arch the more the fibromas flare.

Also my orthotic is very inflexible a previous orotho place made me a very flexible one that ruined my feet. I need a firm rather stiff orthotic to keep my arches from flexing.

I thought it was the same with everone with this condition? Although the pdocs have said mine is a very bad case. After one had riuined my feet he said I had more problems with my feet than any one he had ever seen (well he had caused some of it by giving me the wrong orthotic and shoe).

The fibromas are huge now b/c of the flexible orthotic and wrong shoe. But I am slowly shrinking some of them with the gel. One on my left foot however is the size of a quarter and it does not seem like it is going to return to its smaller size after months of treatment. And that used to be the foot with very small fibromas.

I hope the flexible footwear works for you, it ruined my feet.

Loonsong

Edited 01/22/11 19:37

01/24/11 13:51
Cyclist 
01/24/11 13:51
Cyclist 

Re: Every day management of Ledderhosen

Chobe2:
Hi Di,

Where do you find Nike Bare's? I googled it and went to Nike's site but couldn't find them.

Diane



Hi Diane
I apologise - I mistakenly referred to 'Nike Free' shoes as 'Nike Bare' (cos they feel like you're barefoot)
I'll go back and edit my post now so I don't confuse anyone else!

Di

01/24/11 14:02
Cyclist 
01/24/11 14:02
Cyclist 

Re: Every day management of Ledderhosen

debrr:
Can someone tell us more about these Nike bare, please?

Can't believe they quit making Smart Wool socks!!! :-( Love Thorlo for cushioning though!

Hi Debrr
Whoops - they're actually called Nike Free's

Great, so far, especially for warmer weather

Di

Edited 11/10/11 12:28

01/24/11 14:19
Cyclist 
01/24/11 14:19
Cyclist 

Re: Every day management of Ledderhosen

wach:
Hi Di,

Seegenschmiedt is a long distance runner (ran 100 km on his 50th birthday)http://www.runners-power.de/inhalt/index...5&Itemid=43 . He ought ot know what shoes are good!

Wolfgang

Hi Wolfgang
I have been inspired by stories about the Prof's fitness ability. The good Prof doesn't have our condition though does he?

I should add that I have this second-hand information and I'm not sure whether Prof S wears them casually or for running

While I might have your attention, I would like to take this opportunity to thank you for your contribution to our well-being with this wonderful website

Regards
Di

01/24/11 14:24
Cyclist 
01/24/11 14:24
Cyclist 

Re: Every day management of Ledderhosen

Soonerfan:
I thought I was the only one, mine seem to hurt or bother me more when my feet are bare, even when I am just sitting, must have socks on or socks and shoes all the time. I have also found the Asics are the most comfortable athletic shoe.

Hi Soonerfan
You know what else, which might be related? I can't stand a fan blowing on or near my feet and not even the socks help prevent this!
Di

Edited 11/10/11 12:28

01/24/11 14:39
Cyclist 
01/24/11 14:39
Cyclist 

Re: Every day management of Ledderhosen

loonsong:
Di,

I am surprised a light flexible shoe works for you with LD. That is the type of shoe that made my condition worse.

I need a very firm shoe that is not flexible for the more I flex the arch the more the fibromas flare.

Also my orthotic is very inflexible a previous orotho place made me a very flexible one that ruined my feet. I need a firm rather stiff orthotic to keep my arches from flexing.

I thought it was the same with everone with this condition? Although the pdocs have said mine is a very bad case. After one had riuined my feet he said I had more problems with my feet than any one he had ever seen (well he had caused some of it by giving me the wrong orthotic and shoe).

The fibromas are huge now b/c of the flexible orthotic and wrong shoe. But I am slowly shrinking some of them with the gel. One on my left foot however is the size of a quarter and it does not seem like it is going to return to its smaller size after months of treatment. And that used to be the foot with very small fibromas.

I hope the flexible footwear works for you, it ruined my feet.

Loonsong


Thanks Loonsong!
I wouldn't be surprised at if your advice about firmer support is transferable to others - at least as a pain management strategy, if not to prevent more nodules cropping up. One contrasting narrative that has given me hope is that many people continue to run and exercise without experiencing additional nodules. Of course this may just be luck and we may never know for sure.

From a personal perspective, I have noticed lately that it's not good to stretch my toes back, which strikes me as reminiscent of your yoga poses on toes? Ouch . I find that although I get the urge to stretch them this way because of the tightening sensation around the balls of the feet, it always takes the pain and discomfort to the next level (tingling, heat and if unlucky - nerve pain)

I will experiment with your theory about shoes and let you know how it goes

Di

01/24/11 14:57
Cyclist 
01/24/11 14:57
Cyclist 

Re: Every day management of Ledderhosen

drumhead:
I wear the best Asic running shoes, with Thorlo socks all the time. I can manage with dress shoes for a wedding or funeral, but the socks need to be thick. Socks provide some cushion all the time. Look into RT for treatment. And, I agree with the Asics being the best shoe = I have some A+ hiking shoes, but the arches in the shoe are a little different, and after a day of several miles, I suffer the next day with some sort of soreness.

Keep in mind = it's not how much you walk/run or time on your feet, it's the amount of IMPACT on the nodules that are the most problematic = if that is repeated, say in the course of playing golf, softball, or tennis, whatever, they more they are impacted, the more it's gonna hurt. But, if you take a long walk, with proper shoes and good socks, you may not experience much, if any, problems. I have found that once you feel that 'burning, rocks in the shoe' feeling? It's time to stop. I do know that much. I think that burning sensation is irritation of the affected area = and to anyone reading this who has had a burning/soreness in your foot/feet? Be keenly aware of what LD is, as I remember that being the first signs of problems for me when I had NO idea what was going on (this was some 20+ years ago).

Read up and follow this forum = you will learn from real people who have real experience with this junk.

drumhead (still glad I had RT) results will happen slowly, but I'll report whatever happens


Hi Drumhead
Thanks for your post and your advice. I'm familiar with Thorlo's and will get into them. I have decided to have RT and will post about my experiences soon too, thanks.

Interesting about the impact on the nodules being the deciding factor in pain management. I have noticed that after about 40 mins on my bike, my feet first start to ache all over and then at around an hour the nodules start to feel tight and bruised. I haven't quite worked out at which point to stop, but did think that it was a bit much once the nodules start to tighten and hurt.

A competing story I've noticed is that some people manage to run marathons with these feet. They do report some pain though and it would be interesting to hear more detail about how they manage to keep going

I get a lot of burning in my feet, sometimes without any exercise. What's your story with the burning and do you have any tips on how to avoid it or keep it to a minimum?

Di

Edited 11/10/11 12:30

01/24/11 15:18
Cyclist 
01/24/11 15:18
Cyclist 

Re: Every day management of Ledderhosen

loonsong:

I get a massage every 2 weeks mainly b/c I have fibromyalgia she does not do much with my feet at my request. When LD first popped out and I did not know what they were the massage th at that time, totally avoided the area. And she was very advanced so I think I am making the right decision in continiung to avoid massaging them. She just works the toes and accupressure points and around the sides of my feet. I am not sure massage would be good for them and I am leery of stiring them up.

I used to get my feet UP every day at lunch time but lately I have not been doing that I have had so much energy. But at night I sit in a chair and my feet come UP. But I can not stay that way for too long as I have restless leg syndrome so I get up and walk arround do chores etc.

In front of my sink and stove I have two gel pad thick mats bought at "Bed, Bath and Beyond" they are so soft worth the $99 a piece any day. I would highly recommend the envestment of such a mat or 2 in your kitchen your feet will thank you. I find on snowy days I wander over to the mats to stand a bit to relieve the pressure off my feet.

Thanks for the interesting topic

Loonsong

Hi Loonsong
The smart wool socks sound worth a look

I can really understand about not wanting to flare anything up with massage, especially after having a few really bad flare-ups that last a long time. Also, I think it would be hard for someone else to massage the nodules without causing more pain. I don't know about anyone else that massages, but some days the nodules are harder, bigger and more sore and the sorest parts of the nodule changes daily. I usually have to start off really carefully to desensitise the nodules and then work up to massaging them quite hard after a minute or so. After desensitising them, the massage starts to actually feel really great!

I try to get my feet up regularly without attracting too much attention at work as it might look like I'm not working hard enough! I find that when I sit for long hours with my feet constantly down computer without moving around much, I get home and my feet are much worse than when moving around.

I wonder if anyone else has a similar experience.

Thanks for your posts Loonsong

Take care
Di

01/24/11 15:20
wach 

Administrator

01/24/11 15:20
wach 

Administrator

Re: Every day management of Ledderhosen

Cyclist:
... The good Prof doesn't have our condition though does he? ... While I might have your attention, I would like to take this opportunity to thank you for your contribution to our well-being with this wonderful website

Regards
Di
Di, I don't think he is suffering Ledderhose - and thank you for your kind comment!

Wolfgang

01/24/11 18:47
loonsong 
01/24/11 18:47
loonsong 

Re: Every day management of Ledderhosen

Di,

Burning feet can be a Pantothenic Acid deficiency, its in the B complex family.

About my thick Smart wool socks I wear them year round even in the hot humid Southern summers, wool breathes, I have less sweating than I did with cotton or other fibers. I am not familiar with Thorlo mentioned here, maybe they are thin and would work for dress up. I really need the cushion daily.

And in hiking boots I put my orthotic in them taking out the arch support that comes with the shoe. My orthotics go in all 3 pairs of shoes I have, a little hard to take out and put in but worth the trouble. If I wore the other 2 pairs enough I would have ordered more pairs of orthotics but at $200 a pair one will do since I rarely use the other 2 pair of shoes. I would not be able to walk in them without my orthotic in about an hour without orthotic my fibromos would double in size! Yikes

Loonsong

Edited 01/24/11 18:49

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Seegenschmiedt   wonderful   flexible   walking   condition   without   wilsongolf   osteopath   orthotics   running   definitely   Ledderhosen   nodules   because   orthotic   recommended   Loonsong   management   experience   massage