I am writing to this forum to see if there is any information on people who have suffered chronic symptoms from Ledderhose Disease without the normal growth of nodules in the soles of the feet as is typical of the disease.

Here is my situation:

My father is 80 and was diagnosed with Dupuytren's Contracture several years ago and recently had surgery. I have the telltale nodules on the palms of both hands, as do other siblings. I don't have any pain or contracture. I have a younger brother who works with his hands and is considering surgery, because some of his fingers have begun to painfully contract. My assumption is that the physical labor has exacerbated his condition.

My problem is that I have constant, chronic, mild discomfort in the soles of both feet, and it often makes it quite difficult to fall asleep at night. I have read that approximately 5% of those afflicted with Dupuytren's Contraction also suffer from Plantar Fibromatosis, or Ledderhose's Disease. I do not, however, have the nodules on the soles of my feet that I have on my hands. Physicians have diagnosed the discomfort I have in the soles of my feet as neuropathy or Restless Leg Syndrome. I have been prescribed medications for both conditions, but none of the medications had any effect on the discomfort.

When my father had his surgery for Dupuytren's Contractor, I educated myself on the condition as much as I could, and that's when I learned of Ledderhose's Disease, and began to wonder if the chronic discomfort I have in the soles of my feet may somehow be related. My father and I and other siblings have all had Plantar's Warts as well, which makes me wonder if there is some genetic pathology with the fascia that is responsible for these symptoms. I have an older brother who also has complained of similar, chronic symptoms in his feet - I do not know if he has the nodules.

I would be very interested in knowing if there is anything in the literature or if anyone has any relevant information. I have never been a good runner, but that is not of major importance. The inability to easily fall asleep due to the discomfort in the soles of my feet is, however, a significant issue. Any information or help would be greatly appreciated. My physician simply shrugs his shoulders.

Hey I have to tell you that at one time I was a National fighter for the United States Tae Kwon Do Team and I was really harrassed by my coach that I did not not have enough potassium in my diet. I kept getting cramps in both of my feet...this was years before the nodules. I think that there is a connection. I really have no point to my entry...just to validate the way you feel regarding your Ledderhose.

Kristine

Hi!

I am new to this forum, but am reading all the entries...I am 43, and have had Ledderhose since 1994, grew directly after I started standing on my feet for twelve hour shifts (RN). They grew rapidly, but only left foot painful, to the point in 2000 first surgery because I could not walk anymore (because I was couselled NOT to have surgery, they were huge by the time they were removed). They regrew on that foot almost immediately, but in less painful position, and because of nerve damage, less pain. Right foot lasted until 2006. Also regrew, but nodules cannot be seen, only felt inside, and show up on MRI.

Have tried most pain meds, neurontin, lyrica, tegretol, cesamet, and a few narcotics. Now on Cymbalta, which does not so much provide pain relief as give me a better outlook on the pain. Also take a narcotic (Dilaudid) on my days off so I can have a life.

In answer whether other women have increased pain premenstral, answer is YES. My MD says it is because all connective tissue is affected by hormones, so therefore more sensitive.

My nodules on one foot are growing inward, so if you did not MRI, then would appear you have none, but are none the less very painful. I had partial nerve blocks done on that foot at the pain clinic, which help a great deal with the "restless legs" neuro pain that comes at night when my foot touches the bed, but did not help with the weightbearing pain. Sleeping pills (immovane) are the best defence for me, as if I sleep well, I cope better.

I guess my point is, yes surgery is probably not the first option for most, but it can restore function. I have never regretted surgery, but I also went to a orthopedic oncologist specializing in tumors with the second foot, and he did a much better job than the orthopedic guy. Because I let them get so big before I had surgery, skin was thin and next surgery will most likely require grafts.

My question is, is any one taking any medications that work for the painful type of these tumors? I sometimes comment about amputation and getting shiny prosthetics with NO lumps, and I am only half joking. In all honesty I am not afraid of wheel chairs etc...but a lifetime of pain is not impressive. Most of the neuro drugs that have to be taken daily interfere with my concentration, and I prefer to work for a living (for now). Anyone try anything that actually works?

Hi everyone,this desease is curious for sure.I too have problems with soles of my feet,sensation and pain the same as my hands.Six months ago privately saw a neurologist had nerve tests which came back negative,was then diagnosed Restless legs syndrome,at the present time I have not lumps in my feet.Because of all my different symtons,which seem to be spreading all over my body,many many blood tests!!!! over the last 12 months all negative,negative,negetive.MRI scans on neck and legs,nothin yet again. You begin to feel yourself and see your doctors eyes, hypocondria!! of course you know thats not you but because your body is crying out to you,help,and all you have to show at this time is both palms lumpy,and really frightened about whats to come.I do know that whats going on with my feet and shins, is the same as both hands.I have refused all drugs,I want to make sure they treat the correct desease,but after reading all of you,which helps me,I feel overwhelmed.
Because I'm a women and menopausal all physical problems lumped with that,big copout!!!
I'm wondering whether I should take Acetyl L-Carnitine at this stage,as I have read here that this could help me,if anyone would kindly give me some feed back on this.Oh and another thing,does any of you feel very hot,as if you have infection!! burning,in the affected area's,especially in the tops of my feet,throb,pulse like,or perhaps after reading all this you might all suggest decapitation,and I'll understand.

Susan.

Hi again.....
I am also noticing along with cramping in feet off and on and restless legs , my muscles in my shoulder are tight and it is sometimes uncomfortable to turn head..
I have also developed a pulling feeling that runs along the outside of my leg from the buttocks to the knee cap..I am noticing that I favor this leg on standing..and again, a feeling of restless legs when I go to bed..Once I jerk my leg a burning sensation runs down my leg from the outer buttocks to the knee....I am assuming these problems are all related....Antone else have these knee and shoulder muscle symptons????
Thank you,
Linda