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What to do
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06/18/2013 22:07
Lindajlees 
06/18/2013 22:07
Lindajlees 
What to do

I decided to join the forum as I have found that many times real answers come from those who through experience share common experiences. Sometimes there are hidden answers that can come forth with enough people sharing their experiences. I am not a big computer person but I am very proactive in my health care. I was diagnosed with LD about a year ago after trying to convince myself I had stepped on a hair and developed a painful mass in my arch. I began to also have plantar faciatis and really thought that was all that was going on. When my doctor told me this I had no idea what he was talking about but when he mentioned it was in the Dupuytrens disease category a light went on. My dad had that disease in both hand and as long as I can remember both Of his hands were contracted shut so that he only had use of his thumb and index finger. Anyway as far as I know no one in my family has LD and I really didn't know what to expect. In the last few weeks I almost feel like I am being swallowed into a black hole of hopelessness as the pain is indescribable. The closest thing I can share with my family is that it feels like the bottoms of both feet have been beaten with a baseball bat and then when walking with those sore feet throw some hard marbles on a hard floor to walk over. I am a very active person and I guess I was just somehow hoping that it would just stop its progression. I have two nodules in my right foot. One that has gone from pea size to about walnut size and the other is about the same size since diagnosed very small. Right before seeing the doctor a nodule showed up on the other foot in the exact same spot on the arch as the original one. At that point I knew something more was going on than a hair stuck in my foot.
My doctor told me about all the therapies and basically told me nothing works! Very discouraging! I have done some reading and listened to personal stories. What amazes me is how one thing can help one person and then the same therapy seems to make another worse. This makes therapy choices difficult. My doctor just said to stop doing what ever makes the pain worse. I just can't seem to come to grips with this since I love to walk and garden and do so many activities on my feet. I want to know if I should be trying to rest my feet Or stay off of them or if I should just keep doing what I want to do. I don't want to make it worse. Do the nodules ever go away on their own? And besides the genetic factor do they know what turn this monster on? Is it chemicals in our water and foods? Stress? Mechanical stress on the feet? Poor fitting shoes? Is it better to go barefoot or try to bind your feet up with hard supports? Right now if I knew that stretching and ripping the tissue would help I would do it. Sometimes it feels like the tissue in the nodules are ripping. Sometimes they tingle. Sometimes they itch too! Thanks for any answers. Btw. I am almost 57 years old and am 5'5" and weigh 110 lbs. I am a Heinz 57 mix of ethnicity but am very fair and freckle easily in the sun.

06/18/2013 23:04
Seph 
06/18/2013 23:04
Seph 

Re: What to do

Hi Lindajlees; Welcome to the club. I have had LD in both feet for more than 40 years. I am 58. I also have DD both hands.

The general rule with LD is leave it alone and get on with life if you can. The problem is that medical intervention can cause the disease to spread. One doctor told me that she had seen cases where the LD had flared up along lines where biopsy samples had been taken.

Each case of LD and DD seems to be a little different. In my case there was a lot of pain when the growths first started. Doctors operated on the first foot to remove the growth. This seemed to trigger the growth on the other foot and it grew back where they operated on the original foot but twice the size. Fortunately I have no pain from the scar but I am told this can happen.

For a number of years I had pain each time I started to walk but it seemed to get better the more I walked. Also for a number of years the lumps would blister from rubbing on the bottom of my shoes but the skin eventually toughened and now no problems. In fact they now don't bother me at all. The only difficulty I have is that I can't run for more than 15-20 minutes without my feet developing pins and needles so bad that I feel I am running on block of wood.

And the itching is a sign that the growth in growing.

My view is that you should start by carrying on as normal. Try to push through the pain and discomfort. Don't stop doing things. I wear normal business shoes all types of sports shoes and bare feet at our holiday home. No special treatment.

I am active with weights in the gym and play tennis 3 times a a week (including 2-3 hours most Saturday afternoons) and I now ride 25-30kms once a week. My view is I would not be able to do this if I had started protecting my feet, wearing special shoes etc years ago.

If this doesn't work and the pain is unbearable I am told that cortisone injections can help to soften and shrink the growths.

06/19/2013 01:33
Lindajlees 
06/19/2013 01:33
Lindajlees 
Re: What to do

Thank you so much for your reply. I feel more hopeful hearing that someone has been able to continue to be very active. So have your nodules stopped growing?

06/19/2013 02:25
Seph 
06/19/2013 02:25
Seph 

Re: What to do

Yes nodules stopped growing many years ago but they are like multiple nodules that have merged and cover more than half the arch of each foot.

A liitele troubling at the moment is a mass forming on the pad just behind my toes on one foot that looks suspiciously like the same disease. An experienced doctor that I see in Paris says she hasn't seen an LD growth there before but she thinks that's what it is. No pain but feels like I have an orthotic stuffed in the front of my shoe instead of under the heal. Not troubling me yet but I am watching.

06/19/2013 09:48
Jaci

not registered

06/19/2013 09:48
Jaci

not registered

Re: What to do

Cortisone is definitely worth looking into. I had this injected into both feet with LD when I was 16. I'm now 34 and really have had little trouble since. Could be luck, could be cortisone - worth a try!

06/19/2013 10:21
wach 

Administrator

06/19/2013 10:21
wach 

Administrator

Re: What to do

I think I remember that cortisone is on an average only good for 3 years but that might have been for Dupuytren's. Cretainly worth a try if it can help for such a long time.

Wolfgang

Jaci:
Cortisone is definitely worth looking into. I had this injected into both feet with LD when I was 16. I'm now 34 and really have had little trouble since. Could be luck, could be cortisone - worth a try!

06/23/2013 04:09
flojo 
06/23/2013 04:09
flojo 
Re: What to do

Suggestion: Use the search option to find posts by Luba or Private Message her. She had radiation/Radiotherapy/RT on her Ledderhose foot and the nodules shrank and progression stopped.
She has Dupuytren's and Leddeerhose. She is very willing to share her experience and is very knowledgeable.

I have 2 small nodules on my right foot. It they start to grow fast, I plan to have RT on them. I had RT on my Dupuytren's nodules on my right hand. It stopped the progression.

06/23/2013 04:11
flojo 
06/23/2013 04:11
flojo 
Re: What to do

In case you decide to Private Message her or search for her posts, Luba's user name is LubaM.

06/23/2013 17:26
Rocket88 
06/23/2013 17:26
Rocket88 
Re: What to do

"A little troubling at the moment is a mass forming on the pad just behind my toes on one foot that looks suspiciously like the same disease."

I have this too - in addition to arch nodules. It's just under my second toe and its hard to walk. The doc wants to take it out, but I am afraid of reoccurrence. Also I have not heard of a nodule so far from the arch.

06/23/2013 21:59
Seph 
06/23/2013 21:59
Seph 

Re: What to do

Rocket88, I would be very cautious about letting someone dig around in your foot. If it is LD the risk of spreading the disease is very high.

My understanding is that the best option is to do nothing, if you can. If it continues to cause difficulty with walking you might like to consider cortisone injections. The cortisone can soften and shrink the lumps. A more aggressive option is a combination of NA and cortisone. The last doctor that saw my feet in Paris (a rheumatologist) said that she works with surgeons when treating hands but not with feet. I took that to mean - try everything before surgery when dealing with LD.

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Radiotherapy   difficulty   suspiciously   combination   everything   disease   injections   fibromatosis   indescribable   nodules   aggressive   progression   cortisone   experiences   rheumatologist   understanding   knowledgeable   hopelessness   intervention   discouraging