For now i try to see the DD as a way my body tries to show me what is good for me and what not. Framing it in that context helps to not be too worried about it. Still the idea of not being able to do my sports at some point in the not too far future or just having to deal with those weird unpleasant sensations is kinda scary.
Hey guys nice to be here Been in the group for a good 3 months and now i feel...
Hi Fer Ris. I'm glad you felt comfortable to post and share your story and you are so young to have this already. Any reports of diet helping or hindering DD have no peer reviewed clinical studies to confirm effectiveness. We know that many people wish to heal their disease with natural solutions and supplements and that's fine. We must all choose a path that we feel most comfortable with. It's worth a try as long as you don't jeopardize a chance to get treatment before a contracture happens that could have been improved with traditional medicine. There is a blog post from the DRG that discusses mechanical stress to the hands with rock climbing. Also there are many studies that discussed smoking and drinking as contributors to DD although as you may have read there are many people who never touched a cigarette or a drink and got the disease anyway. This disease has baffled. doctors and scientists for centuries and it is for this reason that we hope to focus a lot of our energy on DDSG on science-based medicine that will lead to the cure. What we know is the disease can wax and wane and since there is no cure all we have is treatments with limited durability. At 31 you may be too young to be treated with radiation therapy. Have you thought about supplementing with magnesium tablets or magnesium oil? There is some anecdotal evidence of improvement and it might be worth a try. It looks like you may have a slight contracture at the PIP joint on the pinky. Is that just the natural bend or is that a DD cord pulling your finger in ? We know that long-standing contractures can damage joints and it is recommended by the top treating doctors to treat early and often to avoid this problem. I'm sorry that's about all that I can offer you perhaps others will weigh in with their experience with different dietary changes. Wishing you all the best.
Hi Fer Ris, I think we need to listen to our bodies. When you have pain after certain activities, refrain from those or modify if you can. Wearing protective gear helps. Some of our members have had success with fasting or going gluten free. You said it helped you in the past, sounds like I would try it again. Try using mag oil cream, it has helped me.
Thank you Leslie. The pinky is straight, just didn't stretch out my hand comlpetely. I won't ignore traditional medicine but won't rely solely on external help either. I'm gonna try to make an appointment with Dr. Seegenschmidt sometime soon. My regular doctor doesn'really have clue about DD. I consider being proactive in this matter to be of upmost importance (if not for healing at least for a feeling of empowerment and wellbeing). I think there's a huge difference between dietary choices and fasting and consider the later to be most promising of all my momentary possibilities (that is possibilities not including expert treatment). I guess diet is very very diverse and people stating they are eating healthy don't necessarily do because they don't necessarily know what is healthy or their understanding of a healthy diet is just very different. Thx Vickie I will definetly look into mag oil.
If you can't get hold of Seegenschmiedt let us know, I know he has not been well. We can find someone else for you if necessary.
Fer Ris have a look at our Coffee Talk transcripts in the FlipBook. There is one on nutrition hosted by Laurel McBrine I'll also paste a blog post from Dr. Eaton on diet and Duputyrens.
Laurel McBrine is a talented artist and nutritionist and has LD herself and has written about her journey on her blog. http://laurelmcbrine.com/?s=Ledderhose
Forgive the misspellings and typos which I just noticed - I use voice to text and am later appalled when I see what I wrote.
Hi Fe Fer Ris im in the same situation as you and have kind of the same story. Im from germany, living at the moment in cologne. I had different appointments with specialists. Allready have been in essen as well. Where do you come from in germany, perhaps we can meet and talk about our experiences. Would be great.
I think you may be on to something when you say this: :" I don't think that the diet has a direct connection to the DD but rather that my body can deal better with it when it's not challenged by other factors like alcohol or food that is not really good for me. Wereas there was definetly a direct link with the climbing since i could feel that it was not doing the hand good and actually finished earlier because of that." Sorry that the activity you love is something that negatively affects the DD! :-( Keep us updated on your situation.
Hey Andreas, living at rudolfplatz so probably no more than a couple of minutes from where you live. Would be great to meet up indeed