Hello everybody,


I've been following this forum for a while in order to find a bit of reconfort and hopefully find a solution like everyone.

I'm a 25 years old french guy. I think I discovered that I have dupuytren when I was around 15 years old. I remember showing my hands to my gym teacher with this strange feeling of having something hard on the tendon. He said : "this is a blister, just burst it ! " I said " Well, I know what is a blister but this one looks different, but ok I will try to burst it" . And of course, it wasn't a blister...

I've been using my hands maybe a bit to hard as I love sport and mostly those involving the utilisation of my hands (such as gymnastic, motocross, breakdance, and so one..). So might it be the reason of my dupuytren ?

Well yes it might be the reason as I have no diabet, nobody in my family have it and I'm not a hard alcohol drinker and a no smoker. But why is it happening with my hands and not my friend's hands ?

Otherwise, 2 years ago I have started up my own company and of course it is involving responsabilities. During these two years my hands where getting paintful and worst.. As far as after a year I visited a doctor in Paris to try NA and get my hands able to be straight again on the table. It was a good experience and not painful. But after a year of hard work and stress it's back again and worst as I have it on my left hand as well..

Do you think it can be connected with the stress ?

I'm not afraid of trying everything to fix it but I'm feeling like any of these treatment is just for a short term. What about firstly find the cause of it ? and maybe treat it ?


I really hope that one day a miracle solution will appear and everyone will be eased !

Thanks in advance for any answer and wish to all of you good luck !

William

Hi William; Reading peoples experiences on this web site over time I have formed a view that DD/LD have a genetic causal connection for some people and environment for others. Those getting DD/LD early in life are more likely to be genetic since the other factors are less likely to have come into play.

Certainly it seems that trauma may be a factor in triggering DD and, as spanishbuddha has commented, stress can be a factor in many conditions. On the other hand it could be that for those with a genetic predisposition environmental factors have very little relevance. It may be that cutting back on sporting activity and reducing stress will have no impact on the progression of the disease for these people.

For my part I developed LD in both feet in my early teens and DD in both hands in my late teens. In my my late teens I took up weight lifting and I have continued with a lot of gym work with heavy weights to this day. In my twenties I was a regular runner then took up squash and for the past 15 years I have played tennis 3 times a week in addition to the gym sessions. I am now 60.

I mention this only to make the point that my physical activity with my hands and feet has been constant for the past 45 years but the progression of my DD and LD has been sporadic. Sometimes years go by with little change then I seem to have periods of rapid growth with the DD highly active in a variety of places at one time. At other times I feel the DD slowly building. It seems to me that, in my case, the DD and LD is not reacting to physical activity or the way I treat my hands.

Similarly I cannot see a stress link. In my late 20's I was involved with a rapidly growing a business that turned into a spectacular failure and I followed this up in my late 30's building a new business from scratch. During the periods of greatest stress in my early 30's and mid 40's I do not recall there being any different rate of growth of the disease. Right now when my world is virtually free of stress I feel that the DD is at is most active and has been for the most sustained period of time. That might be the environmental factor called age kicking in.

Given that you have developed the disease at a young age it is likely that genetics are at play in your case. At present there is no cure but the good news is that this is not a life threatening disease. My view is that you should treat the symptoms and don't worry about the cause.

Seph:

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Hi William; Reading peoples experiences on this web site over time I have formed a view that DD/LD have a genetic causal connection for some people and environment for others. Those getting DD/LD early in life are more likely to be genetic since the other factors are less likely to have come into play.

Certainly it seems that trauma may be a factor in triggering DD and, as spanishbuddha has commented, stress can be a factor in many conditions. On the other hand it could be that for those with a genetic predisposition environmental factors have very little relevance. It may be that cutting back on sporting activity and reducing stress will have no impact on the progression of the disease for these people.

For my part I developed LD in both feet in my early teens and DD in both hands in my late teens. In my my late teens I took up weight lifting and I have continued with a lot of gym work with heavy weights to this day. In my twenties I was a regular runner then took up squash and for the past 15 years I have played tennis 3 times a week in addition to the gym sessions. I am now 60.

I mention this only to make the point that my physical activity with my hands and feet has been constant for the past 45 years but the progression of my DD and LD has been sporadic. Sometimes years go by with little change then I seem to have periods of rapid growth with the DD highly active in a variety of places at one time. At other times I feel the DD slowly building. It seems to me that, in my case, the DD and LD is not reacting to physical activity or the way I treat my hands.

Similarly I cannot see a stress link. In my late 20's I was involved with a rapidly growing a business that turned into a spectacular failure and I followed this up in my late 30's building a new business from scratch. During the periods of greatest stress in my early 30's and mid 40's I do not recall there being any different rate of growth of the disease. Right now when my world is virtually free of stress I feel that the DD is at is most active and has been for the most sustained period of time. That might be the environmental factor called age kicking in.

Given that you have developed the disease at a young age it is likely that genetics are at play in your case. At present there is no cure but the good news is that this is not a life threatening disease. My view is that you should treat the symptoms and don't worry about the cause.

Edited 09/01/14 11:29

William; I have had surgery once on one foot when I was about 14 (Doctors didn't know what it was) and once on one hand in my mid 30's. The operation on my foot was a failure in that the growth came back twice the size. The operation on my hand was more successful but didn't stop the progression of the disease. I have also had NA five times and I am having another procedure at the end of the month.

My past NA procedures have been done in Paris by either Dr Badois or Dr Manet-Chopin but this month I am going to see how I go with Dr Dilley in Sydney where I live.

My DD is painless most of the time. It is the rubbing against the nodules that causes me issues but over time the skin toughens where it is rubbing and the issues go away. I have had a lot of blisters on hands and feet over time. Right now I have a cord that is pulling in the ring finger on my right hand and this is causing pain down the outer edge of the hand when I play tennis. That is why I am getting the next NA procedure. Otherwise I would wait until I am in Paris late next year.

I guess I tend toward minimal intervention and just carry on as normal and make adjustments only when you have to. I have thickened my tennis racquet grip to give more padding and to better allow my bent fingers to hold it. I also find that I get cramp if I have a normal size grip. And I wear gloves in the gym to reduce the rubbing on my nodules.

When I have issues with pain I take nurofen. I had bi-lateral frozen shoulder a few years back (You are highly likely to get this at some stage). Mine lasted about 18 months but I played tennis (Badly) and went to the gym throughout. To play tennis I would take 5-6 nurofen. Not recommended but I am a big guy and it didn't seem to do me any harm.

You should consider the possibility that your NA may settle down and left alone you may go for years without the disease progressing.

Seph

Hi William; I haven't been able to do pushups with my hands on the floor for 20 years but I get around this by using pushup handles or dumbells when no handles are available.

It seems to me that, given your age, you are going to be managing this disease for a long time. I haven't really formed a view on RT. I wonder about the recurrence rate and whether it is going to be effective for someone who has many years ahead to manage the disease. I think it is a much more simple option for a person who first develops the disease in their 50's.

The tingling that you describe indicates that the disease is active. I sometimes have months where I have that strange tingling feeling and then it will stop and no activity for a time. Most often when I get the tingling itchy feeling there will be a change in my hands but not always.

The Colchicine treatment sounds a bit weird. I would be cautious there.

I guess the question is what works for you. If NA seems to be managing the disease why not stick with that unless you have a problem that it can't manage. My view is that with NA I have no risk of turning a non life threatening disease into something else.

Seph