So I just got diagnosed two days ago and I'm still trying to process. I'm 27 and a female, and first had symptoms at the age of 22-23. It started with a dull ache in my palm and lowest joints of my fingers, my fingers felt stiff and everything hurt so badly I wore a warming brace for arthritis, and eventually went to a rheumatologist, who said my xrays were unremarkable and I didn't have any indications of autoimmune disease. He sent me home with Mobic and said "idk, fibromyalgia?" It became clear that mobic, aleeve, ibuprofen, tylenol, all do nothing. For five years it's a been a slow progression of more stiffness and a dull aching pain like my hands are constantly bruised. I had doctors tell me to stop writing so much (i'm a student) and that It was writers cramp, or that I strained my hand. I showed my doctor a nodule on my joint and she said it was probably a cyst and that it'll be fine.

The past 6 months the nodule has grown from a small sesame seed size to larger than a pea, but is only noticed if you feel the palm. The pain has been worse as I am studying and taking notes this past month because of finals approaching and I actually wasn't able to hold a pencil for a few days. I showed my mom my hand as she works in healthcare and herself has carpal tunnel and a trigger finger, and she noticed I have 3 pits forming in my hand, and that my nodule has a cord forming, and sent me to her hand surgeon. Within 2 seconds he frowned and said its textbook dupuytrens, and that due to my age and the pain that it is likely aggressive type. He basically told me, do nothing or have radiation. I can still put my hand flat, though can no longer extend my middle finger backwards at all, and don't need surgery or injections yet. I'm told the radiation can halt progression, etc and has been showing good results, and was told to give magnesium oil a shot as some people swear by it. I was also unaware that I have it in both hands, but he pointed out multiple nodules in both hands, and dimples in both hands.

Just not sure where to go from here, I'm in the US and uninsured so radiation would be astronomical in cost. I also can't take the steroids he offered because oral steroids give me extremely nasty side effects and have been advised against using them ever again by several doctors. I'm a biotechnology student so I have some faith in the fact that one day I will be working in the field that is actively researching new treatments and cures and am familiar now with several studies underway, but for now it just feel like I'm sitting back doing nothing, waiting for my hands to start deteriorating. I also have a history of terrible plantars fasciitis leaving me unable to walk for weeks, and now I'm starting to think it could be related to ledderhose.

I have no dupuytrens in my family that we know of but both parents have carpal tunnel, cubital tunnel and trigger fingers, etc so I'm sure it somewhere in my family there is a carrier or someone with an unnoticed mild case.

Any advice for someone who is literally brand new to this, I don't even know what I should or shouldn't do, stop writing so much and rest my hands, continue normal activity, do physical therapy exercises, or what. I have a referral for an oncologist to do radiation, but being in the US, uninsured, and in a state with no expanded medicaid I am kind of out of luck with treatment. I immediately went online and joined the research, and have been looking to no avail for active clinical trials near me because at this point I'll do anything to prevent this.

Edited 04/21/18 19:18

Hi Elle,

radiotherapy might help reducing the pain in your hand and slowing down progression but there is no guarantee for that. Radiotherapy per se is a statistical process and sometimes it helps and sometimes it doesn't. As you are young I would start with gentle but regularily massaging the cord and nodules. You could do it with your other hand or use some harder device, like a wooden ball or roll. Again, as with most treatments for Dupuytren's, massaging may or may not help. If you feel that the cord/nodules are getting softer and the pain is reducing you are on the right track. If massaging has no effect then you might as well stop it but you shoud give it at least 3 months of daily massaging to see any effect.

I agree with your view of steroids. They are a very effective treatment in some cases but not good for long term use, side effects are too strong. Radiotherapy I would, if possible, postpone for another 5 or 10 years, to reduce the risk of additional fibrosis or even cancer (though this risk it very low).

As Henry wrote, it might be wise to not damage your hand with excessively strong labour or exercises. Writing is not the cause of Dupuytren's, it might just conflict with pain in your hand and your body will tell you when there is a conflict. Besides that, read the information on this website as Henry suggested as starting page. When I myself learned that I am suffering from Dupuytren's it was quite a shock for me. Today I have been dealing with it for 35 years and am still doing OK, so my last advice would be to not worry about it too much, get informed and take it from there. It's a managable disease. And congratulations to your mom for sending you to a good hand surgeon.

Wolfgang
PS: if you are interested in experience with radiotherapy abrod you might read some of the reports on https://www.dupuytren-online.info/dupuyt...xperiences.html

Edited 04/22/18 09:18