Thank you for this informative website. My heart goes out to you all :)

Five months ago I broke my left ring finger and a couple of weeks later the pain started, then the nodules and now the contracture.

I have been finally diagnosed with DD, however told there is no pain with DD from several doctors and surgeons in Australia and that my pain is Complex Regional Pain Syndrome and some say arthritis.

The PAIN IS DISTINCTLY FROM DUPUYTRENS. I can feel my fingers contracting over for the day with pain (they straighten up a bit by morning after wearing a splint that night). I also have pain in my left wrist, thumb and forefinger, which makes it hard to turn things. I have very stiff and sore fingers with knucklepads on all fingers except the thumb. The nodules in my palm were very sore but are fine now, however my palm still aches. This is all in the left hand but the exact type of pain is starting in the right hand also. I have pain in the arches of my feet and every joint in my body. My DD has been fast and aggressive. I do not get all this pain all at once and there are moments throughout the day where I do not get pain at all (not often). Hard to find a pain relief that works.

I am looking for a doctor and surgeon in Australia (preferably Melbourne) who acknowledges that DD can come with chronic pain for some people. I can't believe the struggle I've had trying to explain my situation. Why won't doctors/surgeons listen to their patients? They are so caught up with their medical text books. How can they learn? I know my body well. I am a slim, fit and healthy woman who has rarely got sick.

I would also like to know if there are any DD support groups in Melbourne? If not, would anybody be interested in meeting up once a month in Melbourne?

Love to hear from you.

Sandra :)

Hi Sandra,

you might be having arthritis as well, I encourage you find a rheumatologist and if they dont think you have arthritis, ask for a bone scintigraphy. It is the most sensitive test. It is a hand surgeon who prescribed this test for me. I have gone through X-ray, ultrasounds and IRM prescribed by my Gdoctor and rheumatologist and none of these have seen arthritis in my wrists and hands. I am in pain and stiffness since 9 months now. All my blood test were clean concerning arthritis and finally only the bone scintigraphy saw it. If you have an inflammatory condition such as arthritis underneath your duputrens, it is probably not helping. I have just started a treatment for arthtitis and hopefully my condition will come back to normal and my ''dupuytre's symptoms'' will go away as well. I must tell you that 2 hand surgeons diagosed me with dupuytren's BEFORE I had my bone scintigraphy, but AFTER the posistive arthritis results, I saw one of them again and he changed his mind about it and believe I only have arthritis. I have seen many of these specialists this summer and I can tell you that opinions can greatly vary!!!
good luck
jasmine

Thank you for your messages.

There is thread after thread, post after post, on this website, of people experiencing pain in different ways.
Chris Bainbridge, the Head Surgeon at Royal Derby Hospital in UK has stated that one third of his patients with DD report pain.
It is a very strange disease indeed. Different for everyone and very unpredictable.

Jolene hope your DD stays settled now you've had RT and Nan hope it all goes well for you. Jasmine I really hope you don't have DD and I will keep my mind open about things.

My pain has not been so bad these last couple of days :)

Sandra

Nan,

I also developed osteoarthritis at the exact same time as DD. I thought I had DD in that finger and through the MRI it was diagnosed as arthritis. I only have it in the DD hand and it is in the DD (middle ) and in the index finger.

I also had pain with DD and had it from the nodule all the way to my shoulder. My shoulder ached and ached and after the RT it went away. I actually got a new mattress thinking it was the mattress. After I got a new mattress and realized I was having pain radiating from my hand to my shoulder, I then went to the doctor for the pain and was diagnosed with DD.

After RT all the pain went away. I occasionally had tingling and the crawling sensation for about a year after RT. No new progression though. My arthritis also improved after RT. My fingers cracked so much prior to RT that I worried I would be crippled. Now I just get an occasional crack and really no pain.

Lori

hello Everyone just want to update on my case. The Dupuytren I thought I had is in fact arthritis related to my crohn's disease. Using my hands less and less, the muscles kind of decreased in my palms which made it all appear like dupuytrens' nodules and cords on my MCP. these actually are simply the normal hand strcutures bones and tendons just being more visible on my weak skinny hands. I cant thank enough the surgoen who sent me to bone scintigraphy and another one with long term experience I saw right after who confirmed the arthritic diagnosis. Can you belive that a rhuematologist and 2 hand surgeons (all young) were ready to operate me for conditions I didnt even have... Its a life saver I went on to ask the expertise of 2 others more experienced doctors. My mom has always thought me to seek a second opinion whenever a big decision is to be made. That is so true and make sure at least one of them comes from an experienced doctor not working in a private clinic. Good luck all and wishing you and me all the best in our different routes. Jasmine