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Greetings! New Diagnosis.
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04/21/2014 17:17
pinkfidget 
04/21/2014 17:17
pinkfidget 
Greetings! New Diagnosis.

Hello,

Just diagnosed with DC today; I'm a lady in my early 30s living in the US.

I've been dealing with issues in my index and middle finger for two years though, starting with pain and swelling in my fingers and then palm, diagnosed as tendonitis, then trigger finger, and treated by multiple cortisone shots. Last fall, i started noticing a lump in my hand and was told by one dr that i had a cyst and to wait. then i switched insurance, so when the lump continued to grow, i went to see a new dr who said today that it was DC.

I'm trying to learn more. It seems that this is odd in people my age, and particularly women my age. (any lady's out there?) It is also not typically in the middle finger (no problems with my pinky or ring finger at all). No family history that I know of, but I'm researching. So far, no pain or aching, or even loss of movement or contraction, but the cortisone shots could still be helping with those symptoms. Just the lump/node on my palm

I've heard that when this onsets in younger years that it often progresses more quickly. Any experiences like that? I'm an artist, and hope to have kids in the next few years. I would like to do what i can to help keep this progressing as slowly as possible.

Thanks for the advice!

B

04/21/2014 19:12
spanishbuddha 

Administrator

04/21/2014 19:12
spanishbuddha 

Administrator

Re: Greetings! New Diagnosis.

Welcome pinkfidget

My standard advice is start keeping a record, with photos, of your hand(s), symptoms, flexion or stretch measurements, do the research which you have started of treatment choices, doctors, make lifestyle changes if you can and have any of the predispositions that are indicated, and ... wait. Most people develop symptoms very slowly and if they get a contracture that too develops slowly. Most people, but not all.

Oh yes, take good care of your hands, gloves from now on, in the kitchen driving, garden, sport, activities, ..., not sure how that would affect an artist (I play tennis - with a glove, and piano - without a glove.) What sort of artist with your hands?

If your record, shows objective changes are occurring quickly, or start becoming quite active, you could consult a doctor for a consideration of RT as your next step. Otherwise apart from the changes mentioned, carry on with your life.

Best wishes

SB

04/21/2014 19:47
pinkfidget 
04/21/2014 19:47
pinkfidget 
Re: Greetings! New Diagnosis.

Thanks SB! That's a good idea to keep a journal/record of the progression - i imagine it helps with future Dr. visits immensely. I'll keep researching and learning more, too. Drs. like to give diagnoses, but they just don't have time to go into it all with you, really. :P

I have already been wearing a gel padded cycling glove on my affected, dominant right hand for a while - it was recommended when i was diagnosed with trigger finger. I use primarily for the gym and travel, but will start to make more use of them for other daily activities. I also switched my "mouse" hand a while ago. My job requires a lot of computer work and it's helped my right hand a lot.

I am a painter primarily - so there's some dexterity involved in using a brush. But I do many other kinds of 2D work, from drawing, to ink, to stitching, to collage/mixed media. I could wear a glove, but i don't know that it will impact it as it's not heavy lifting. I guess we'll see. I think piano would require a much stronger dexterity than the work i do, which is precise, but not quick. This doesn't seem to cause tremors, so that's good.

I guess this is one more thing that is going to help build my tolerance for ambiguity, and patience. I'm just hoping for the best right now.

Thanks again - you rock!

04/24/2014 09:54
humana 
04/24/2014 09:54
humana 
Re: Greetings! New Diagnosis.

I'm also early 30's (33), female and no family history of dupuytren's. I was in denial when I was 1st diagnosed because everything I read was not a description of me. Now, nearly two years later, two surgeries later, it's undeniable. The cords that I have in my thumb/index web space and in my thumb are stubbornly recurrent. I have cut them and tried to remove them but 8 weeks later they grow back. My disease never starts as a nodule, just straight into cords and contracture.
As a mother of young children, I'm not able to baby my hands as much as I should. Food preparation is my nemesis. I always wondered who bought the bag of pre-chopped vegetables that costs 3x as much as the fresh vegetables... Well that's me now!! :(

04/24/2014 14:28
Christl 
04/24/2014 14:28
Christl 

Re: Greetings! New Diagnosis.

Humana, go to the hardware store and get some foam pipes -the one you cover your outside pipes so they don't freeze - cut them and wrap them around knife handles, etc. Works for me!

I use foam pipes for everything with a handle and cycling gloves for everything else. I had RT 2 years ago on both hands and - knock on wood - so far so good. I do have some new cords, but they are just there.

Christl

04/24/2014 20:03
pinkfidget 
04/24/2014 20:03
pinkfidget 
Re: Greetings! New Diagnosis.

Wow - that sounds rough, and like it went from 0-60 very quickly and just doesn't let up. And that's strange that you have it in your thumb/index; that must be extremely rare. yeah, I just turned 31, so we'll see what happens. I like the idea of buying the prechopped veggies :) good solution. (and the foam handles!)I can imagine that you want to use your hands more for doing things with your kids than chopping!

Someone on a facebook group mentioned that they typically don't so RT for people under 40 because of the exposure to radiation?!

Thanks for the responses, Humana and Christl!

04/25/2014 18:27
ellenpao 
04/25/2014 18:27
ellenpao 
Re: Greetings! New Diagnosis.

Glad that you found this site! I too was diagnosed early - and held stable with the lump in my palm only for about 10 years. Then cords grew and we were off to the races. I too have no involvement of pinky or ring finger, but deal with the middle and pointer fingers being my problems. I also have Garrod's pads in those fingers. I have had 5 NAs and 1 round of Xiaflex (which I didn't react well to).

Getting ready for another round of NA soon. I refer to these NAs as my 50,000 mile checkups - like a car, I think Dupuytren's is a maintenance issue for me - when I feel the contracture getting past 50 degrees, off I go for NA. Hopefully, I can continue doing this ad infinitum!

Hang in there - be glad that it's 2014, and there are many options available to you (Radiation, NA, Xiaflex).

Good Luck to you!

04/25/2014 21:57
moondanc 
04/25/2014 21:57
moondanc 
Re: Greetings! New Diagnosis.

ellenpao:
I have had 5 NAs and 1 round of Xiaflex (which I didn't react well to).

I refer to these NAs as my 50,000 mile checkups - like a car, I think Dupuytren's is a maintenance issue for me - when I feel the contracture getting past 50 degrees, off I go for NA. Hopefully, I can continue doing this ad infinitum!

Good Luck to you!

I have about the same history as you do-- a few more NAs, bad luck with Xiaflex. Your mention of 50 degrees was of interest to me. I've generally done it every 2-2.5 years when I get to 30 degrees. My last round was NOT successful. Who is your NA doc?

What degree of contraction do others use to know it's time for another round of NA?

Diane

04/29/2014 17:27
ellenpao 
04/29/2014 17:27
ellenpao 
Re: Greetings! New Diagnosis.

Moondancer - I generally go a little earlier than 50 degrees - but the middle finger on my right hand is my problem child - and the last time I had it done, it wasn't so easy. I guess I've been putting it off cause I know how much it's going to hurt this time!

I use Dr Pess in Eatontown NJ - my hero!

04/29/2014 17:57
pinkfidget 
04/29/2014 17:57
pinkfidget 
Re: Greetings! New Diagnosis.

That's hopeful - I'll wish for the best over the next decade and we'll see how it goes. If i can get through babies with my hands doing ok.

It's interesting to hear when people tend to start getting the NA procedure done. My dr just said come back when you can't put your hand flat on the table; which was a little vague to say the least.

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