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30yo male, just been diagnosed, questions on my diet and next steps.
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01/22/2015 14:50
Mr_C 
01/22/2015 14:50
Mr_C 
30yo male, just been diagnosed, questions on my diet and next steps.

Hello all,

During October last year I noticed a tiny lump on my left palm (ring finger tendon). Being in the UK, I have had to spend 4 months navigating a slow and inefficient NHS, but I have finally been diagnosed with Dupuytren's this week. The lump has continued to grow and has now become visible with a slight tightening of my finger (although no bend yet). I am 30 years old.

The diagnosis hit me really hard as it was so unexpected. But being a geek at heart I have been ploughing through the research online to try and come to my own conclusions on what to do next. But the truth is I remain puzzled.

I have spent the last 3 years of my life following what I consider to be a pretty healthy 'paleo' style diet. Basically loads of fresh veg (4-6 portions a day), moderate meat/fish and a good portion healthy fats (coconut oil, olive oil and butter mostly), avoiding any inflammatory and processed foods. I also take regular exercise but have stopped lifting weights and riding my bike since I noticed the lump so as not to aggravate it. I weigh 165-170lbs.

But, I am no angel. There is also an unhealthy side to my lifestyle. I drink alcohol (maybe a few units once or twice a month), I have also used marijuana on and off for about 6 years. I intend to stop all of this now as I know it’s likely doing me no favours.

My grandfather who is 90 suffers terribly from this disease but didn't contract it until much later than me when he reached his late 50s. He was a heavy tobacco smoker and consumed alcohol on a weekly basis, he ate a moderately healthy diet.

My doctor told me that I should get surgery as soon as possible but this seems to contradict everything I read (perticularly on here). I have decided to avoid surgery for now as I don't want to make it worse. I also have little trust in the NHS as they have misdiagnosed and mistreated members of my family in the past.

This looks like a really great support network to get involved with and I've been reading a ton of info on here recently. Having a community to share my journey with is going to be really valuable.

I would love to hear peoples thoughts on what next steps I should take, diet or otherwise. I've started taking ALCAR, fish oil and bromelain supplements which I read can help ease the disease, but am aware that this is not a cure in any case.

From my limited knowledge I have been left wondering about these things:

- DSMO with vit E etc - does it work or just delay the inevitable?

- I have read about supplements like Neprinol and Sulphur but also seen mixed reviews on their effects

- Could my higher than average healthy fat intake be an issue? Eating a diet more aligned to Paleo than the standard american diet cured me of GURD and a ton of other issues. It made me feel great and lost me 15-20lbs of stubborn fat effortlessly, but perhaps its not ideal if I am pre-disposed to this condition? Could meat or fat intake be an issue? I am considering a vegan experiment or dropping the fat intake right down.

- Should I be stretching my hand to retain movement or am I risking rupturing or injuring it further? I have done a lot of yoga in the past, but I have stopped for now as I remain unsure if it’s helpful to my hand.

-RT interests me but I am still unsure about it. Would love to hear peoples thoughts. The NHS are offering me nothing other than an operation right now and even though the NHS website seems to support this treatment, my consultant made absolutely no reference to it in my appointment.


I’d love to hear people’s thoughts on what works or doesn’t work for them and get some thoughts on what direction I should take things in the early stages. experimenting with my diet is nothing new to me so I'd love to hear from anyone who's seen success in dietary changes. I intend to experiment with my diet and will post any noted results on here.

I want to avoid surgery at all costs and consider it a last resort. I am prepared to make any sacrifices necessary right now. The internet can be both useful and frustrating when researching this condition, so where better place to start than asking real people who are going through this themselves?

Thanks and I look forward to getting involved in this forum.

01/22/2015 15:37
econn 
01/22/2015 15:37
econn 
Re: 30yo male, just been diagnosed, questions on my diet and next steps.

I too have done a lot of internet research and reading on this condition. Mine started on my left hand in my mid 30s but I didn't recognize what it was until I was in my late 40s, I just thought I had permanent callouses on my hand or maybe it was caused by osteoarthritis, another condition I have. Unfortunately, there aren't many real studies done regarding how diet and supplements affects Dupuytrens. There are many variables, it seems to affect each person differently and it isn't considered a "life threatening" disease, plus it isn't widespread so it doesn't get much attention in the medical journals and research clinics.
When cords started to develop in my hand I tried for many years bending my hand straight every opportunity I had, to no avail. I have seen people recommend topical concoctions but have never heard of any real cases where it worked. I had Xiaflex (Xiapex) injections last year and the results have been amazing for me, but others have had disappointing results, recurrence being the most common. So far mine has no indications of coming back.
My right hand is developing nodules, started about 3 years ago and I will probably have injections on it unless something better is discovered.
Keep up the good diet, it certainly won't hurt anything, as far as I know...

01/22/2015 16:06
Mr_C 
01/22/2015 16:06
Mr_C 
Re: 30yo male, just been diagnosed, questions on my diet and next steps.

Thanks for the response.

It does definitely seem to effect everyone differently. I have actually been stunned at how varied success seems to be across the board with so many different treatments. I guess this points me in the direction of self experimentation based on a little research.

I have read about Xiapex and it sounds like the best first option once fingers begin to bend. With it being quite a new drug i've had trouble concluding any stats on its effectiveness.

For now I think I'm going to stick with some supplementation with a few dietary & lifestyle tweaks. I will keep this forum up to date on my progress.

I believe stress has been a factor for me as the nodule seemed to appear in the middle of one of the most stressful times of my life, and lets face it, stress is good for nothing. I'm working on combatting the stress by upping my exercise and taking a more positive outlook, but its hard work.

01/22/2015 16:07
spanishbuddha 

Administrator

01/22/2015 16:07
spanishbuddha 

Administrator

Re: 30yo male, just been diagnosed, questions on my diet and next steps.

Hi Mr_C

I'm in the UK too, make sure you check out the BDS website and say hello on the FB site. You will get 'local' recommendations if or when it comes to treatment. It's a bit odd that surgery is being suggested without a contracture. The standard UK response is wait till you fail the table top test then have surgery.

There are some good treatment centres for DD in the UK using NA, Xiapex and surgery. RT is mainly private although if you fancy a fight with your local CCG you may get referred, but whether the radiologist knows what to do is another thing; print off the NICE guideline and take it along. It's a bit the same with Xiapex which is not NICE approved. You could ask for a steroid shot, some say it helps for a while, but I'm personally not convinced.

The UK also has a pioneer in massage, claiming good success for early stages. Check him out and draw your own conclusions.

Personally I would not worry about diet and DD, except perhaps the glucosamine, diabetes risks and excessive alcohol.

Forget the DMSO and Vit E and SSKI, I have not tried this but also not found any verifiable success stories, other than the sales and marketing sites. Others suggest magnesium too; it's up to you, the power of placebo is well documented.

I play tennis, stopped for a few months due to injury, and upon resumption discoverd a new nodule on pinkie rubbing on the racquet handle. I strapped it up and carried on, and voila the nodule disappeared over several weeks. Not sure what to make of that. I still play but do wear gloves, so reconsider resuming your weightlifting taking some care.

Best wishes

SB

01/22/2015 16:31
Mr_C 
01/22/2015 16:31
Mr_C 
Re: 30yo male, just been diagnosed, questions on my diet and next steps.

Hi Buddha

I will certainly check out the BDS site, thanks.

I thought it was absolutely ridiculous to suggest surgery at this stage. The consultant clearly had no idea what he was talking about. My questions were met with what could be considered 'stock answers', it didn't fill me with confidence and I'm actually considering complaining as i would have had more benefit speaking to a brick wall than this guy.

I guess due to my success in treating so many things in my life through diet, it's easy to become fixated on it. But I can't deny this does seem to be an exception in that school of thought. I will probably still run a few self experiments but wont get my hopes up.

Who is the massage pioneer? I'd be interested to read more on this as it's not a treatment I've heard of.

I find the point you make about your nodule disappearing very interesting. Perhaps this correlates with the action taken through massage and application of pressure? I guess it's impossible to tell but glad to hear it went away for you.

Thanks a ton for the advice. Maybe I will try getting back on some light weights over the next few weeks and see how I hold up.

All the best

01/22/2015 17:10
spanishbuddha 

Administrator

01/22/2015 17:10
spanishbuddha 

Administrator

Re: 30yo male, just been diagnosed, questions on my diet and next steps.

Mr C

The massage guy is here http://www.ealingmassagetherapy.co.uk. He has posted on here a couple of times, and on the FB site. Some of his patients who are pleased with the outcome have posted too. He will share his protocol with a qualified local therapist.

01/23/2015 10:29
Mr_C 
01/23/2015 10:29
Mr_C 
Re: 30yo male, just been diagnosed, questions on my diet and next steps.

Great, thanks very much for the information I will be sure to check that out.

01/23/2015 21:04
Molloy 
01/23/2015 21:04
Molloy 
Re: 30yo male, just been diagnosed, questions on my diet and next steps.

Mr_C:
Hi Buddha

I will certainly check out the BDS site, thanks.

I thought it was absolutely ridiculous to suggest surgery at this stage. The consultant clearly had no idea what he was talking about. My questions were met with what could be considered 'stock answers', it didn't fill me with confidence and I'm actually considering complaining as i would have had more benefit speaking to a brick wall than this guy.

I guess due to my success in treating so many things in my life through diet, it's easy to become fixated on it. But I can't deny this does seem to be an exception in that school of thought. I will probably still run a few self experiments but wont get my hopes up.

Who is the massage pioneer? I'd be interested to read more on this as it's not a treatment I've heard of.

I find the point you make about your nodule disappearing very interesting. Perhaps this correlates with the action taken through massage and application of pressure? I guess it's impossible to tell but glad to hear it went away for you.

Thanks a ton for the advice. Maybe I will try getting back on some light weights over the next few weeks and see how I hold up.

All the best

Mr. C,
I'm only recently diagnosed as well, so don't have any real experience to share--I'll leave that to SpanishBuddha and other vets of this site, who are a tremendously valuable resource.

I will only echo one thing SB says: don't beat yourself up thinking what you might have done via diet or otherwise to provoke this, and don't use up too much energy trying to find dietary solutions. We don't know very much at all at this point about the cause of DD, but genetics is among the best attempts at an explanation to this point, i.e., something over which you, I and everyone else had zero control. Everything else is more or less in dispute, and I certainly haven't found anything in the way of peer-reviewed science that suggests that diet can bring it on. I have done some of the same reflection you're doing, in my case by thinking about trauma to my hands over the years and whether I could have done more to protect against it, but the research on whether that can cause or provoke is conflicted as well.

Better to turn resolutely, as you're clearly doing, to what to do to start managing the condition as best you can. Very sorry to hear that it's hit you at such a young age, but we're all lucky to have this condition at a time when treatment options are starting to open up--NA, Xiaflex, radiation, etc., and we may have some genomic breakthroughs in the foreseeable future that will provide further and more powerful treatments.

best,
Molloy

01/26/2015 09:46
Mr_C 
01/26/2015 09:46
Mr_C 
Re: 30yo male, just been diagnosed, questions on my diet and next steps.

Hi Molloy,

Thanks for the advice. I can't disagree with your points, a great deal of time can be wasted worrying about what caused it and going down the 'why me' road. The bottom line is it will get me nowhere.

As you point out, any improvements seen through diet are anecdotal at best. In terms of my diet, I have noticed that if i eat inflammatory foods like wheat, sugar or highly processed meals, I seem to experience more pain in my hand at night. Not sure what to make of that at this stage as I have only noticed this twice, which is not really enough time to make any personal conclusions.

I am considering the massage therapy already mentioned by SpanishBuddha. I have tried massaging the nodue myself recently and it does seem to provide some relief, albeit seemingly temporary.

RT seems to be a promising option at this early stage and I am going to mention it to my consultant when I can get an appointment. Although I am expecting to be told they won't support it. The support I have had so far from the NHS has only confused the situation.

Has anyone had any experience with 'natural' treatments mentioned over at http://dupuytrens-contracture.com? They claim to be an Institute for natural healing but it seems like a big marketing ploy to me, everything always seems to lead to some kind of sales page which hardly fills me with confidence.

Thanks for all the support on this thread. It's great to know I can bounce my ideas about with people who have real experience in managing this condition. I've learnt more here than in all my google searches, and believe me there have been many!

01/26/2015 10:41
wach 

Administrator

01/26/2015 10:41
wach 

Administrator

Re: 30yo male, just been diagnosed, questions on my diet and next steps.

You would probably need to massage every day for 1/2 - 1 hour and continue that for 3+ months to see an effect. A Ledderhose patient had done that and succeeded in getting rid of his nodules in the sole of his feet. Of course that does not guarantee that massaging will work for everyone but an occasional short massage most likely will not have any visible effect.

The websiite you are mentioning is a commercial website. In our forum I don't recall any success reports with their "natural medication" but you can search the forum yourself (menu on the left). Personally I do not trust any of their statements and consider them pure marketing.

Wolfgang

Mr_C:
...
I am considering the massage therapy already mentioned by SpanishBuddha. I have tried massaging the nodue myself recently and it does seem to provide some relief, albeit seemingly temporary.

....
Has anyone had any experience with 'natural' treatments mentioned over at http://dupuytrens-contracture.com? They claim to be an Institute for natural healing but it seems like a big marketing ploy to me, everything always seems to lead to some kind of sales page which hardly fills me with confidence.

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