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I'm 26, lederhose in both feet, beginning of dupuytrens in one hand, my story so far
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09/11/17 17:08
GaryCr 
09/11/17 17:08
GaryCr 
I'm 26, lederhose in both feet, beginning of dupuytrens in one hand, my story so far

I can't remember when I first noticed these 2 painful pea sized lumps on my left foot. Then about 4 or 5 years ago my right foot joined in on the game and went one step further, pardon the pun, and produced what feels like 3 lumps just slightly larger than the others on my left. Sent to a private specialist by my GP, basically I was told that he didn't want to know. A few months later I kept noticing their gradual growth on the right foot to stretch the full length of my tendon and the largest being approx 1.5cm while the left remained unchanged but no less as sore as the right. Cramps in my feet in the mornings, rushing out to university or work and jumping out of bed too quick and having to take 5 or 10 minutes to allow the sharp pains to relieve in my feet.
Back to my GP I went, then forwarded to a specialist in the NHS. 5 or 6 I'll call them visitors later after me explaining my full story about my feet and the previous doctor brushing me off, then finally the last person to walk in said you again and when I looked up it was the same doctor from the private clinic. He stated that the various trainee docs and some nurses wanted to see my feet as they hadn't seen lederhose before or this bad at my age.
That day (Although I had researched already and diagnosed myself by the power of google) was told that I had lederhose which is hereditary and this was understandable as my mum has dupuytrens in her hand which this year after her operation she was told was the worst case this specific doctor has ever seen. I was sent for orthotics, attempted to wear them for a month but were very painful, kept trying them every now and again until my next review which I forgot to bring them to, they were quite unbearable at times.
Then last year at my review in October I brought them with me to find out they were not moulded to my feet whatsoever therefore were painful. I received new ones in January which yes are better but i still get the pain and at my review in april i was told if they are worse in a years time before my next review they may have to remove them, therefore removing my tendon in the right foot. On the same day after the specialist looking at my hands he confirmed I have the beginning of duputrens in my left hand (yay).
The main lump is the size of a ping pong ball on my right foot. I work in a residential care home full time and study part time, looking to further myself and study medicine in the near future. Surgery seems the only way to go but can anyone give me some advice based on experience or profession?

Also, physiotherapy was great with the free massages etc but I was dropped as nothing could help ease the pain and I am also flat footed with no arch whatsoever. They tried building an arch then agreed with me that it's more comfort needed than trying to build the arches.

Gary

09/11/17 18:08
spanishbuddha 

Administrator

09/11/17 18:08
spanishbuddha 

Administrator

Re: I'm 26, lederhose in both feet, beginning of dupuytrens in one hand, my story so far

Hi Gary

Sorry to hear your story so far. LD under the NHS is probably a mystery. Have you seen Gary's blog, also a young UK patient with LD. His story had a happy result, and lots of info on options.

[urlhttp://ledderhose.blogspot.co.uk][/url]

09/12/17 01:00
Seph 
09/12/17 01:00
Seph 

Re: I'm 26, lederhose in both feet, beginning of dupuytrens in one hand, my story so far

Hi Gary; Welcome to the club.

First let me say that your path and experience is very familiar. I have been there but that was 50 years ago when even less was known about this disease. And there was no internet.

I developed my first lump in the arch of my left foot in my early teens. The pain you describe and needing to start slowly all sounds so familiar. Before I was 15 doctors operated to remove the lump not knowing what it was. Within a couple of years the lump returned in the same spot and twice the size. By the time I was twenty I had lumps in the arches of both feet and by the time I was your age I also had dupuytrens in both hands.

I have never had pain with the dupuytrens but the pain with the ledderhose I remember to this day.

There is the bad news, the good news and the advice. I will be a little more forceful than I normally would be as you case sounds so familiar.

The Bad - It is going to hurt for a few years.

The Good - With the right approach it will pass and you will be unrestricted

The Advice - Forget the orthotics and the pampering of your feet and whatever you do don't let a doctor cut into it. Not even a biopsy. You dig in to the Ledderhose nodules and you risk spreading them.

It is my view that the pain is caused by the growing nodules displacing and putting pressure on nerves and tendons. You need to push through the pain. In my twenties I would take my troubled feet for a run. By the 5km mark I would have pins and needles and by 8-10km my feet would feel like I was running on blocks of wood.

The nodules grew and would rub on the soles of my shoes resulting in blisters. I would pop the blisters and apply methylated spirits. In my twenties I also played squash and was a regular in the gym.

Eventually the pain went away and the skin over the nodules became leathery so no more blisters. Today I play tennis 3 times a week, go to the gym 5-6 times a week and go on a week long cycling adventure each year. Plus lots of walking when visiting new places. Sometime more than 20km in a day. My arches have lumps and in recent years I have grown new lumps on the balls of one foot behind my toes. All very annoying but no pain at all.

Frankly I no longer think about my feet as an issue. Which cannot be said for my hands. I have had surgery once and have had NA 8-9 times. The most recent just 6 week ago.

Most people don't want to here my advice as they want someone to fix it for them but if you can push through the pain I am confident that you will end up in a better place.

Seph

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