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Dupuytren's Contracture

Posted , 8 users are following.

jimbob0802
jimbob0802

Hi

People may have seen from my previous posts that I've had issues with my hands. I've been curious as to whether the weakness I had was due to Carpal Tunnel, RA or the ongoing back issues I've been having.

One thing I can't deny now is that I definitely have Dupuytren's, and have been diagnosed as so...quite a galling prospect for a 33 year old.

My affliction has developed over the past year, no doubt accelerated a result of botched-up trigger finger surgery I had a decade ago (and probably some unnecessary stretching on my part). At the moment I have no contracture - only the occurrence of some rather large nodules which is stretching the skin quite badly. Usually I make a laugh of it and draw a couple of faces on (see 'Larry and Barry' in the new Mad Max!) But after seeing how white it was after an hour's run this morning in the cold, I've decided I need to start treating the damn thing. Really interested to gain some advice here...I've read on other website's that massaging the nodules with lanolin oil is a good idea?

Would really appreciate some advice on this if anyone has any info they can share.

Thanks

Jim

2 likes, 12 replies

12 Replies

  • Jb9
    Jb9 jimbob0802

    Posted

    Hi Jimbob,

    I don't have any advice (I came here for that too) but though I have not yet been officially diagnosed, I am also sure I have Dupuytren's in my hands and like you, I'm on the younger end of the typical spectrum at age 37. I'm worried this means that my condition is aggressive, and dismayed by how little conclusive information there is out there. I have been searching for a good forum on the subject where I can discuss it with others who have it, but most of the options I found are not very active. I think this probably due in large part to the age demographic of most Dupuytren's sufferers, since older generations don't tend to interact as much online as younger ones. No one in my family or community I'm aware of has this problem and even my doctor appears to have not seen it before or know much about it. I will post more about my symptoms soon and look forward to following your experience too.

    Best,

    Jenny

    • jimbob0802
      jimbob0802 Jb9

      Posted

      Hi Jenny

      Good to hear from you. I agree with you entirely - it's a really frustrating topic, as there doesn't appear to be an agreed way forward for DC sufferers - especially those like you and me in our 30's. I have been looking at video's on Youtube to see if I can find any solutions - one of such is rubbing lanolin oil into the nodules, so I've bought some of that. Another revealing post was one which talked about a link between C8 of the cervical spine and the pinky finger/4th digit on both hands - this is interesting to me as I'm currently seeing a chiropractor about fixations along my spine, with some particular issues around the sterno-clavicular joint. Nightmare!

      Another interesting video I came across talked about using a combination of magnesium oil, saturated potassium iodide and DMSO as a mixture to massage the nodules. You'll find it - it's an Aussie guy who's made the video. I haven't ordered these yet as want to give the lanolin oil a go.

      Of course the most frustrating aspect for me was my recent trip to the doctors, where he advised that there was nothing that could be done until it got worse i.e. wait until the digits start contracting then have surgery. Great. What was frustrating about this is that on NHS choices, it seems that there are a load of options available. But he shot those ideas down in flames and told me to just straighten the fingers as much as possible, by placing the palm flat down and then raising it using the fingers. As you'll see from the photos, it's quite a deformity I've got going on, although I can still straighten the fingers. Only issue here is I've read (and heard) elsewhere that this actually thickens the nodules and cords, so not sure whether I should just leave it or attempt to do these self-care things?

      In conclusion, I'm confused, frustrated, and dreading the next term in my job as a teacher. Marking books is an absolute nightmare at the moment with my back and neck, but luckily I'm right handed and haven't got DC in that hand...I hope. Although it clicks like mad, as done every other joint in my body - yet another ailment I've seemed to pick up! It's hard to stay positive but I'm trying to stay active, that's for sure.

      One thing I would say is, get in touch with your family members and see if anyone else has had it. I was completely unaware that my second uncle had it, and has surgery twice. Like I said to him though...it's not as fun when you're 33 and dealing with these issues.

      All the best, and keep in touch.

      Jim

  • jimbob0802
    jimbob0802

    Posted

    Here's an image of my hand
    • jimbob0802
      jimbob0802

      Posted

      And another - you can see how much the nodules stick out
  • jimbob0802
    jimbob0802

    Posted

    This is Barry and Larry :-p
    • Jb9
      Jb9 jimbob0802

      Posted

      Hah, I should name the double-set of nodules on my right pinky. I have them on all fingers but that one is the beast of the bunch, even though my first signs are in my left hand.

      I have been researching voraciously since my initial reply, and I have learned a great deal, including a lot more symptoms in my family, links between this and other body quirks I have, and most importantly, I found an active forum that has more than I even hoped for. It is called the Dupuytren's Disease Support Group and it is on Facebook. I highly recommend you join and take advantage of the wealth of real time support, information and amazing compilation of resources available there. Even if you don't have a Facebook account, it is worth getting one to participate in this group. In addition to lots of active members who share our condition, several members are hand specialists and medical researchers who volunteer their time to answering questions and keeping the latest data updated.

    • jimbob0802
      jimbob0802 Jb9

      Posted

      Jenny, this is awesome, thank you. I saw earlier that you've been on the forum at dupuytren-online info, a couple of the fellas on there are really helpful too. But it's good to hear there's something on Facebook, as obviously it's faster and easier to use on smaller devices.

      Maybe we should set up a movement to name/draw caricatures on our respective Dupuytren's?! Although that may not be medically advisable...

    • Jb9
      Jb9 jimbob0802

      Posted

      ☺️ good idea. Glad you joined the FB group!
  • sai71946
    sai71946 jimbob0802

    Posted

    Just came across this post. A family member has Dupuytren's Contracture and he had organic therapies at Synergy Organic Well Being in North Carolina. Within a month more than 50% of it went away and his claw-like hands are now almost normal.I don't have their number but this place is really good for Dupuytren's Contracture. I hope this helps.

  • Zoom_Zoom
    Zoom_Zoom jimbob0802

    Posted

    Hey Jimbob,i too have dupuytrens on both hands,also it affects both feet and also my penis,which is called peronies which is the curvature of the penis.My hands are less two baby fingers due to the contra ture being so severe.my feet have noduals that are very sore ,had both feet oporated on but they grew back and even developed infection and almost loss one foot.My left hand is worse,my index fingers are affected and may even if doc says too,removal of finger,pain is always present and actually hinders my moving and using my hand,i was diagnosed in my late 20s and now i am 48 with two boys and my hands are always sore.My noduals are too severe for cream but good luck to you,and also the feet ,its called planter fibrosis.My case is unusual as i have all three which they are all conected to each one.
    • hope4cure
      hope4cure Zoom_Zoom

      Posted

      Hello zoom zoom and all.... This is a 2 year old post and Zoom Zoom you posted a day ago. I will hope to add my experience can help your hand and no pain in your palms. 

      I have DC in both RT and LF hands. Left hand had needling. They numb the areas of the hand and use a needle to break up the small nodes in the facia area on the cords.

      The right hand had advance nodes and contraction so surgery was done on one pinky. Surgery caused the facia to become active and the nodes became larger and doubled in count as a result my pinky contracted to a fist and along with the third and fourth fingers . So instead of one finger after surgery three fingers were curled up to a fist  instead of the one pinky. DONT ALOW ANY SURGERY!

      I learned later surgery is generally the last to try because the risk of it becoming active. Also learned that a hand surgeon is not enough to qualify ... it must be a surgeon experienced with  DC.

      I then had Xiaplex injections a bio drug I read about on the Internet. It's for Dupuytren's Contracture and also for Periones. Simple technique and really works like a charm. The injections are done in three areas of the numbed areas of the Palm near the nodgules then return to the dr office after a few days the area numbed again the fingers are manipulated to a straight position. That worked on all my three fingers on right hand I had my hand back and can use all my fingers. And then A few weeks of PT and splints.

      That was 6 years ago . I have not had the fingers curl back up because I wear a Fixxglove splint nightly, see on Internet.. If I don't wear a night splint the hands will curl up over time depending on how active the disease becomes over time. I have had no further treatment so far... fingers crossed ...the normal way...not the DC way.....hehe. 

      Gogle xiaflex flex and dupytrens society. Good luck. Let me know if you decide on any treatments. 

      The Dupytrens Society online is also helpful and on face book. It's in Europe  and they post yearly symposiums on treatments and doctors who treat dupytrens sometimes in the US the symposiums are held. They also use low dose radiation treatments to treat the nodgules which is usually found in this country only by radiologists that use low radiation to treat cancer patients no experie pence with DC and gloves are made to protect the good tissue in the had so only the nodes are exposed to radiation . From what I have read it usually takes several treatments of low dose radiation to see results ...shrinkage of the nodes. Most reports on the DC forum have had no nodes return with RT. It's difficult to find radiation treatment with experienced techs in the US.

      Google Xiaflex and Dupytrens Society forum they are on Facebook too. Good luck. Let me know if you decide on any treatments. I'm in the US west coast.

      On feet Ledderhose is also treated similarly. I have it in one foot and wear well fitted shoes with arch supports .....very important. This has kept the speed of nodgules in check for several years. Of course no hi-heels for me....EVER. Don't care don't want em just happy to walk pain free also have plantarfaciatitis. 

      Good Luck....to you ! Keep in touch . 

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