Follow up on 19 year old DD | Dupuytren | Forum for Dupuytren's contracture

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Follow up on 19 year old DD
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05.02.15 16:03
Maxhenry1 
05.02.15 16:03
Maxhenry1 
Follow up on 19 year old DD

Made a post a week or so ago regarding a lump under my right palm.

Am 19 years old, and have been diagnosed with Dupuytren's is both right and left hand.

At 19, this seemed impossible to me. A disease that rarely affects anyone under 50. I feel no hope for any goal I have related to weight training. The main question that I force myself to try and answer is "why me"?

Aside from the doom and gloom, I go to a hand specialist on the 24th of February to talk about further options, whether injection, or RT. I want the nodule to go away, and never come back, though not possible or even realistic. I'm 19 and in this for the long run, for life.

Edited 02/05/15 16:04

05.02.15 18:54
spanishbuddha 

Administrator

05.02.15 18:54
spanishbuddha 

Administrator

Re: Follow up on 19 year old DD

Sorry to hear this diagnosis, but welcome to the club. 19 is quite young, and often DD is more aggressive. There does seem to be a confirmed genetic link, possibly with a further unknown external factor or factors that sets it off. There is also literature that would support trauma as being a relevant factor, although this is not proven. So maybe it is in your family history and the weightlifting is not helping. I think I mentioned that I myself play tennis, and have continued to do so, although wearing a glove. But handling a racquet has a different type of impact on the hand, although I do get hand and wrist injuries, and used to get calluses before the gloves.

The site provides your options. Lifestyle factors perhaps, cut out the Glucosamine and Chrondroitin, maybe reduce or stop the alcohol and smoking, avoid things that may lead to diabetes (diet, weight). "Wait and see", no-one likes that option, but you can still be proactive by keeping a log with photos, and plan the treatment or treatments you prefer if you find it progressing.

You really have only a few confirmed evidence based treatments: RT for early stages when it is progressing and there are symptoms such as aches, tingles, soreness, growth; NA or Xiaflex for moderate contracture; various surgical options for more advanced stages. Your mindset becomes how do I manage this with what is available?

There's a lot on the Internet about Vitamin D, E, magnesium, DMSO, SSKI, ultrasound, cold laser, verapamil, and on it goes. Read it all with an open but science based mind, then be sceptical of the claims and do not spend a lot of money on them.

That leaves a mention of some claims of success with massage, confirmed by a couple of users posting on here. You will have to draw your own conclusion, massage as part of physical therapy for a range of conditions has been shown to have benefits, so maybe it helps with early DD, and maybe not.

05.02.15 19:40
saverett 
05.02.15 19:40
saverett 
Re: Follow up on 19 year old DD

Maxhenry1:
Made a post a week or so ago regarding a lump under my right palm.

Am 19 years old, and have been diagnosed with Dupuytren's is both right and left hand.

At 19, this seemed impossible to me. A disease that rarely affects anyone under 50. I feel no hope for any goal I have related to weight training. The main question that I force myself to try and answer is "why me"?

Aside from the doom and gloom, I go to a hand specialist on the 24th of February to talk about further options, whether injection, or RT. I want the nodule to go away, and never come back, though not possible or even realistic. I'm 19 and in this for the long run, for life.

Hi Maxhenry,

I know exactly how you feel. I'm a 26 year old female (pretty rare) and have DD. I have always been into fitness and other activities that now I either cant do already, or know someday I wont be able to. I noticed my first nodule when I was at crossfit one day, I didn't understand why a "callus" would hurt so bad, but now I know why. How long ago did you notice your first nodule? I have a friend who is 23 who was diagnosed with dupuytren's about a year ago. He doesn't really have much contracting at all. Which could be a good sign for you. I think in males it progresses more slowly. I just keep thanking God I don't have Ledderhose disease. I think things can be manageable if its DD but if it takes away my feet... that would be a very difficult one to swallow. Both of my hands have DD (making it a little difficult to type right now lol). My right pinky, ring and middle finger are affected and on the left, my pinky and ring so far are affected. I have cords showing in both hands, nodules that are getting bigger, just found a new nodule forming, and pain most days. Do you have pain in your hands? Its not that common to have pain. And I really hope you don't. I'm sorry your struggling with this disease. But remember your not alone... thats why were all on here I guess... to get answers and not feel so alone because of this stupid disease.

I'm waiting a little while to see how aggressively it progresses. Once you have surgery there is no going back and I've talked to a few people who think that having surgery hastened the disease. NA is more of what I'm looking into but as I said I'm still waiting for a while. My suggestion is take pics of your hands every couple weeks and write out your symptoms, progressions, and struggles. This will help you and your docs decided how fast its progressing and if you even need to take action for a while. I know your 19 but when I was 19 I dipped into drinking, occasional smoke, and terrible diet. But if you want to give your hands the best chance I would give all of that up.

Ps. I don't eat sugar anymore (not even honey) because for some reason it makes my fingers hurt seriously bad. Also, there is really limited research on DD and if your anything like me and get depressed by what you read all the time... then STOP looking up DD info. It'll just continue to make you depressed and that is not good for your overall health anyway. Just sayin.

Hope your day is great,
Sarah

06.02.15 08:02
Seph 
06.02.15 08:02
Seph 

Re: Follow up on 19 year old DD

Maxhenry1 & saverett; In the times we live in there is sometimes too much information and it can lead to needless stress and worry. Maxhenry1 by the time I was your age I had DD in one hand and LD in both feet. saverett by the time I was your age I had DD & LD both feet and both hands and I had some contraction in the little finger of one hand.

The difference for me is that I didn't know what it was. I didn't even know that the lumps in the arches of my feet were in any way related to what was going on with my hands. I didn't know that I had a problem so I just carried on as normal and ignored the goings on with my hands and feet. I didn't get a proper diagnosis until I was in my early thirties and even then the information was very limited.

I see you both thinking about the things you won't be able to do and I say that you can let this be so if you want to or you can ignore it and just deal with the symptoms as they get in your way. I will be 61 in a couple of months so I have had this disease for more than 45 years and while my condition has been a talking point with our friends from time to time it has not stopped me doing anything.

In my late teens and 20's I was into power lifting, I played B grade squash, field hockey in the weekends and I did a bit of running. I have never been an athlete but I enjoy working out so I don't let the DD or LD get in my way. These days I am in the gym 5-7 days of the week and I still work with heavy weights, I play tennis 3 times a week and my wife and I do a weeks cycling somewhere in the world every year.

I also enjoy a glass or 3 of wine most nights.

My advice is don't give up any physical activities and go slow with treatment. You may have periods of what seems like rapid growth but then it can settle down and you may not get any activity in your hands for years. There is commentary that suggests that the more you interfere with DD the faster it grows so be a bit cautious about all potential treatments.

And above all else remember that this is the good disease. It can be a nuisance from time to time but it doesn't kill you.

08.02.15 22:24
Molloy 
08.02.15 22:24
Molloy 
Re: Follow up on 19 year old DD

Maxhenry1:
Made a post a week or so ago regarding a lump under my right palm.

Am 19 years old, and have been diagnosed with Dupuytren's is both right and left hand.

At 19, this seemed impossible to me. A disease that rarely affects anyone under 50. I feel no hope for any goal I have related to weight training. The main question that I force myself to try and answer is "why me"?

Aside from the doom and gloom, I go to a hand specialist on the 24th of February to talk about further options, whether injection, or RT. I want the nodule to go away, and never come back, though not possible or even realistic. I'm 19 and in this for the long run, for life.

Maxhenry1,
The 'why me?' question is something to try to avoid posing. Its main consequence is just to make you suffer psychologically. The only answer to the why on this is stuff that either always was or is now out of your control.

Better, I think, to use your energy to start planning on how to manage it as best you can. As Seph indicates, it may or may not actually progress enough that your weight training will be significantly affected; no use living in a possible but not certain future where it does while you still have the present. Attend a bit more to your hands, wear gloves, maybe consider changing some exercises out that are overly hard on the palms for others less stressful. And then inform yourself about options going forward should you need them. Once you know you have it, the best you can do is gather information, monitor, and above all live your life w/o capitulating to the thing before you even know what it will ultimately do.

I was just diagnosed myself in the past few months, though I am considerably older than you (almost 50). I too do some significant weight training, have done so for the past 15 years or so. I too have had some thoughts about how that might be affected, and I'm already changing some of my exercise regime to higher concentration on other activities (swimming especially), but I'm also going to continue to do what I can reasonably do with weights. Don't pack things in at the start of what you correctly note is a long-term struggle. Yes, the literature says earlier onset is statistically more likely to tend toward the aggressive, but you're not a statistical average--you're an individual and there is at this point absolutely no way to know with certainty how things will go for you. Even if it is aggressive, you're young enough that newer, more effective treatment techniques are a near certainty to appear in your lifetime. And veterans here like Seph and Spanishbuddha attest to the fact that you can have early onset and still manage effectively long-term with existing treatments (NA, collagenase, traditional surgery).

Chin up, young friend! Your whole life is ahead of you, and this is a bump in the road--life wouldn't be life without them.
all best,
Molloy

13.02.15 17:23
Mr_C 
13.02.15 17:23
Mr_C 
Re: Follow up on 19 year old DD

Maxhenry1 I really do sympathise with you my friend. I am 30 and went through a very depressing phase after first being diagnosed. The why me question as something that I have found really hard to get over. I know i'm not 19 bit I'm still younger than what some may call the 'stereotype DD sufferer'.

I have had close friends and family that have suffered from much worse, some have survived and some have not. Asking myself 'what would the best way to react to this situation?' regularly has really helped dissolve my ego and focus on what matters which is the fact I can still do 99.9% of all activities available in life, and that's not bad numbers.

Saverett, Interesting you mention crossfit. I have done that in that past as well as rock climbing. Both of these things no doubt have put huge stress on my hand (i always liked to push goals) and I can't help but suspect them as a possible cause through trauma.

I was originally planned to stop weight training completely to take the stress from my hand away and focus on other less intense forms of exercise but was encouraged through this forum and other places to say 'why bother?' I enjoy weight training and I now just carry on with it but don't push things too much. If anything this condition taught me that pushing my body to excess is not necessarily a good long term view to take from a health and longevity perspective, as it likely got me in this situation in the first place.

As a side note I have found kettle bell training to be less strenuous than weight training on my palm and give amazing results so might be worth looking at that if you haven't already.

I'm looking at RT myself, sounds like I am at the same stage as you roughly. Anything to avoid being cut or injected is my motto for now.

Again, I really do sympathise with you getting this at such a young age, but make sure you don't let it get you mentally, it almost got me for a while and it still might, but stay positive and think about all the things you can still appreciate regardless of what happens to you hand.

19.07.22 13:06
Rebecca 
19.07.22 13:06
Rebecca 

Re: Follow up on 19 year old DD

Rebecca :)
Diagnosed at 19/Female/Family History of Dupuytren

This post was a very long time ago so you might not see this message...but hi anyway! I am a female and I was diagnosed with DD in my late teens a couple of years ago.

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