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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

04/22/18 13:18
morgain 
04/22/18 13:18
morgain 
Re: I'm 26, lederhose in both feet, beginning of dupuytrens in one hand, my story so far

Hi Seph, new on this site as only diagnosed in January of this year, have three painful nodules on left foot, slightly bigger than January, I am very interested in what you said about the pain being for a few years, do the tendons and nerves surrounding the nodules get used to it all so the pain subsides which would make sense, as I believe the nodules themselves don;t give pain, its the surrounding tissue contracting on the pressures of trying to walk.

I am gathering information and tips like mad, overwhelmed with it all, what suits one doesn;t another. I was never sportive but loved tai chi, which I now find painful, trying to keep it up but not overdoing things, loved to walk, but its painful but still do it but not as often. Is the idea to keep active even with the pain until it all relaxes, I understand the lumps won;t but I can live with that but the pain gets you down.

Trying to find footware, looking at running shoes as I read a lot of people use those, have had orthotics made which I am also trying to get used to. Welcome any feedback, I live in the UK by the way.

04/22/18 14:56
Seph 
04/22/18 14:56
Seph 

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

Hi Morgain; Let me give you an update on my previous comments. I have mentioned that I had new nodules forming behind the toes of one foot. I was wrong. What I thought was a nodule was just pressure causing flesh to form a mound behind my toes.

A couple of months back the nodule appeared. Photograph attached.

When this nodule appeared it caused a fair bit of pain. So much so that I was contemplating surgery and I wrote to the Doctor in Paris who has done the last 6-7 NA treatments on my hands. I asked for advice on who I should see but she responded saying she couldn't diagnose from the photograph as she had to feel the lump. I understand why she said this but I can feel it and I know what it is.

I came close to seeing an Australian surgeon but I knew that they would want to do surgery. Thats what surgeons do. I carried on playing tennis going to the gym etc but loosened the laces on my shoes. I started taking my shoe off in restaurants because the pressure was troubling me. I would come off the tennis court thinking that I was going to have to give the game away. I resorted to taking nurofen before I went on the court.

Then one day, as in the past, I came to realise the pain had gone. I have now forgotten my feet again and my focus is now back on my misshapen hands.

I think the pain was caused by the nodule putting pressure on bones, nerves, tendons etc in my foot. Once they all became used to the new order of things and found their new position everything settled down.

So, once again, I am convinced that push through is the best option. Forget the orthotics. Just give the feet endless hard work and they will take care of themselves.

Attachment
SG Left Foot 1a.jpg SG Left Foot 1a.jpg (16x)

Mime-Type: image/jpeg, 668 kB

04/22/18 17:35
morgain 
04/22/18 17:35
morgain 
Re: I'm 26, lederhose in both feet, beginning of dupuytrens in one hand, my story so far

Thanks so much for getting back to me, this is all fairly new although I must have had it for a while but now the nodules are there are a tiny bit bigger, it hurts. I do believe the mind plays a big part where pain is concerned, trouble is with pain we focus on it, its normal, but when I am doing something else I enjoy it fades into the background more. Like you did I take my shoes off if I am in a restaurant, etc., and don't do so much standing tai chi as it can be done in a chair, but I don;t like giving into it

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