2014 FACEBOOK FORUMS ON DUPUYTRENS and LEDDERHOSE, A LIFE SAVER FOR ME

The Facebook Dupuytren's Contracture group leads me to a new Facebook group April 2014
 
So I joined the Dupytren's Contracture Facebook group.  https://www.facebook.com/groups/DupuytrensContracture/There are tons of people from the USA on here and some of them even have Ledderhose Disease!  I am finally feeling validated for my feelings.  Many people are experiencing  the exact same symptoms I am having.  Many people on this site have the more common Dupuytren's Disease and many of them are having surgery for it.  I read more and find out that disturbing this collagen seems to put this disease into an active mode and it starts to grow.  I found out there is NO CURE. Cutting it out is not an answer, but seems more like a curse.  My pain is at an even more all-time high and honestly, I am willing to do anything for some help at this point.

While on this group, there is a small sector of people discussing this "radiation therapy" I had read about in Germany.  AND....someone in the USA has had this done!  I am sucked into this group, trying to absorb all the information I can. The comments being made about this seem to be concerning, why would anyone elect to have radiation therapy?  Isn't that for people that have cancer?  I've never known anyone to elect to have radiation therapy.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html 

 The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given  should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.

 

2013/2014 DUPUYTREN'S CONTRACTURE FACEBOOK FORUM FOUND

I found a Facebook group for Dupuytren's Contracture!    Late 2013/early 2014
 https://www.facebook.com/groups/DupuytrensContracture/
One night while laying in the bed with my heating pad on my right foot (as always), I am in so much pain and I roll over, grab my ipad and on a whim I log onto Facebook and search to see if there is a group formed about this disease.  Low and behold there is!!!!  It is called Dupuytren's Contracture.  I immediately apply to join the group.  It's a closed group and by now I can't sleep at all.  I have to wait to be admitted to the group.  It has almost a thousand people in it.  It was an Oh My Gosh moment for me.  I was admitted the following day and this is the link that will change my life forever!
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html 

 The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given  should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.

2013, MY INTERNET BREAK THROUGH ABOUT DUPUYTRENS and LEDDERHOSE

My 2013 Internet break through!
While searching on the internet I finally found out this benign nodule is also called a plantar fibroma.  More research led me to Ledderhose Disease.  I then find it is associated with Dupuytren's Disease.  When I look up Dupuytren's Disease and I see advanced photos, I realize this is exactly what my Dad has in his hands!  I cannot tell you the shock and saddness I felt when I found this out.  Devastated was an understatement!

I research further for an answer, actually I am on a mission to find the treatment/cure. I am in more pain than I could every imagine for a "benign and non-painful" disease. The more I read, the more devastating I become.  Why?  Because my dad has Dupuytren's Contracture and his hands are contracted.  I am 52 years old now and I do not want contracted feet!  

More research and I find some that say in Germany they have actually delivered radiation therapy as a treatment (not a cure) for this disease on the hands and the feet.   And that this has been done in Germany for years (meaning just over 10 years).  Better info comes as I keep researching this that radiation therapy helps the pain and reduces nodules about 75% of the time.   Now....keep in mind this is in Germany and I live in the USA.

http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease-.html 

 The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given  should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.

2013 UNBEARABLE PAIN FROM MY LEDDERHOSE DISEASE

2013 UNBEARABLE PAIN
The pain is unbearable.   There is nothing that I am doing to get any relief.  The inserts are not working, the heating pad isn't working, the mounds of shoes and inserts I have bought are not working, the nodule is now protruding under my skin like a stone, the small fibroma is now large enough to see and feel.  The big toe is killing me.  The doctors tell me there is nothing they can do, there is no treatment available.  I am in constant pain, a 10/10 on the doctors pain chart.  I've again resigned my employment again and gone back into real estate so I don't have to stand to much at all.  At this point I am consumed with searching on the internet.
http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html 

The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given  should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.

2012 FAST FORWARD TO FINDING THE 1st LEDDERHOSE FIBROMA ON MY RIGHT FOOT

2012

Fast forward to January 2012.  My plantar fasciitis was at an all time high and during a foot massage "the" fibroma was found.  Scared to death was probably exactly the way I felt.  I immediately made an appointment and went to the podiatrist.  After an x-ray and MRI, it was confirmed I had not one plantar fibroma but two!  The larger one is in the very soft skin area in the arch area of my foot (the typical location).  The smaller fibroma, which was tiny and I could barely feel was just above the visible one and appears on the tendon also toward the big toe.  The doctor said it's just a benign nodule, use these shoe inserts and wear them to that any pressure off the fibroma.  He mentioned in a very authoritative voice to "never ever allow anyone to perform surgery".  I completed my office visit with him saying that if I wanted I could try an injection which has appx 50% success with reduction in the nodule and that is would be a very painful injection.  I opted to pass on the "painful injection".  He last stated again it's a benign disorder and these pads should help and again don't allow anyone to perform surgery.  

So, I leave the doctor's office. I use the inserts.  Nothing is helping the plantar fasciitis.  I had previously resigned my employment because I was standing on concrete 8 hours a day and find something that I will be off of my feet more.  I move on in 2012 with more pain and discomfort, my fibroma is now in an active mode and growing, it's visible just by looking at the bottom of my foot.  My vacation to Las Vegas is fun AND very painful.  In one day we walked over 18,000 steps.  I thought my feet were literally going to fall off.  Zero relief from anything, even medications.

http://www.dupuytrensdiseasesupport.com/what-is-ledderhose-disease.html 

These are the shoe inserts my Doctor's office sold.  I found them to be somewhat helpful. http://drjillsfootpads.com/retail/home/14-arch-steppers.html

 
The statements or any opinions expressed within this website or any related or advertised sites are not intended to diagnose, treat, cure or prevent any disease. Any advice or comments given  should not be relied upon as individual medical advice. No doctor patient relationship is intended everyone is advised to consult their own doctors for medical advice specific to them. There is no endorsement nor recommendation of any treatment nor physician noted on this site.