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NEWLY DIAGNOSED AND HAVE QUESTIONS!
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08/28/2012 10:41
anna2825 
08/28/2012 10:41
anna2825 
NEWLY DIAGNOSED AND HAVE QUESTIONS!

I am a 51 year old woman and in the last three months I found I was waking up to very very stiff joints in my hands and not being able to straighten up my fingers fro the pain. It almost felt like arthritis but I know you cant develop that in 48 hrs! After a few weeks where it didn't improve I went to my Doctor and he has told me I have Dupuytrens Disease of the Palm. He has prescribed me Ibugel to massage on 6 times a day and ibuprofen - neither of which help at all. I have, of course, researched the condition extensively on the internet and whilst I have read an extensive amount about peoples experiences, treatments etc there has never been any mention of anyone in any pain. I am! Could it be my Dr is fobbing me off with this diagnosis or does anyone else have genuine Dupuytrens WITH pain??!!

08/28/2012 12:14
wach 

Administrator

08/28/2012 12:14
wach 

Administrator

Re: NEWLY DIAGNOSED AND HAVE QUESTIONS!

Hello Anna,

welcome to our forum! This might be the right place for finding answers to your questions. Dupuytren's is typically not painful but for some of us it definitely is. Probably that depends on whether Dupuytren's nodules are close to nerves or press on nerves.

If you are looking for Dupuytren's patients experiencing pain you can search this forum. Click on "Search forum" on the left menu and enter pain. You will find close to 2,000 posts referring to pain. That's about 10% of all posts and might indicate that pain is not such a rare experience (although some posts are referring to pain after specific treatments, like surgery).

It's not surprising that Ibugel and Ibuprofen don't help with Dupuytren's. They are not an established treatment for this disease. My guess that your doctor tried to reduce your pain, not to treat Dupuytren's. BTW, Dupuytren's doesn't come over night either. Typically it takes quite a while, in most cases years, to develop Dupuytren's disease. A significant contracture might even take 5-10 years, although some patients develop it in a year or less.

Have you considered getting a second opinion? You might suffer from something else, not Dupuytren's. Unfortunately there are very few Dupuytren's specialists (treating Dupuytren's doesn't seem to be good business). If you read through some of the pages of this web site you might yourself get an initial understanding of Dupuytren's . Educated patients are important for good treatment. A good start would be http://www.dupuytren-online.info/dupuytrens_contracture.html and http://www.dupuytren-online.info/dupuytr..._therapies.html. If you are living in the US you find a list of doctors offering NA on http://www.dupuytren-online.info/NA_list_North_America.html. NA might not be the treatment you need but those docotors usually are familiar with Dupuytren's and ought to be able to diagnose it.

Wolfgang

08/28/2012 12:14
lori 
08/28/2012 12:14
lori 
Re: NEWLY DIAGNOSED AND HAVE QUESTIONS!

Anna,

I seem to be one of the minority that had pain. I was diagnosed when I was 53. Mine started as a red spot in the palm of my hand, then a knot formed. I thought it was a calus. My hand ached and felt tight and I blamed it on my computer. I had pain that radiated to my shoulder. I blamed that on the bed. My hand ached and ached and felt cold at times. I could not get comfortable at night and was in so much pain that I finally went to the doctor for the pain in my hand. At this point I had the beginnings of a cord. She did not know what I had in my palm and referred me to a hand specialist/surgeon. He diagnosed DD.

Some things I tried helped the pain. I wore a "wristie", which helped keep my hand warm. I started wearing padded gloves when doing chores, driving, or anything that would touch my palm. I bought a heated mattress pad. The heated mattress pad worked the best for backing off the pain so I could sleep at night. I don't like taking drugs and would have had to continually be on them for the pain. Nothing really eliminated the pain until I had RT. The pain, tingling, itching, crawling feeling, and of course watching my palm change from having a red spot and a nodule to a cord running up the middle of it to my middle finger in less than 6 months convinced me that my DD was extremely active and that I needed to treat it. I chose RT because I was at an early stage, my DD was active and it was the least invasive. I felt it was a good first choice and if it worked then that was great, and if it didn't I still had NA, or other options available. The only thing that stopped the pain was RT. It has been 3 years and the only time I have pain now is when I over use my hand.

Let me know if you have any questions.

Lori

08/28/2012 12:29
anna2825 
08/28/2012 12:29
anna2825 
Re: NEWLY DIAGNOSED AND HAVE QUESTIONS!

Thanks to both of you for the response. No red spot on my palm but the Doctor assures me I have nodules under the skin and it hurt a lot when he pressed. He also told me it wasn't a sudden thing but had probably been building up over a year or so and something I did aggravated it. I wasn't able to think of anything until yesterday when I suddenly remembered I had painted my bedroom - or tried to - about two months ago. Exactly around the time I woke up with the pain! Anyhow, I would like a second opinion but not sure how to get one seeing as the Doctor I saw was the Head of Practice!! I am trying to find a suitable hand splint I can wear at night which is the worst time of all for me. Proving tough though!

Anna

08/28/2012 21:54
stephenp 
08/28/2012 21:54
stephenp 
Re: NEWLY DIAGNOSED AND HAVE QUESTIONS!

Anna

I too would urge you to seek a second opinion. I did not experience chronic pain but rather a dull ache and tightness which is common. However, I did get acute pain shooting up through the affected fingers when reaching for something or stretching my hand. I also had a patch of numbness on the side of one finger suggesting to me that a nodule (of which there were several) was compressing or had damaged a nerve. At 12 months post RT, the nodules have regressed (but not gone), the acute pain no longer occurs and the numbness has mostly gone.

Stephen

08/30/2012 21:46
pia2some 
08/30/2012 21:46
pia2some 
Re: NEWLY DIAGNOSED AND HAVE QUESTIONS!

Hi Anna,

I started developing nodules around the age of 43. My mom and lots of other relatives have Dupuytrens and I knew what it was immediately. In the last two years the contractures started getting bad. In the last 9 months, it has progressed rapidly. I had Xiaflex injections in one cord on my right hand this past spring.

I have a lot of pain! Deep throbbing pain. When I wake up, my hands are stiff and swollen and painful. Some days the throbbing is bad enough to keep me from doing a lot with my hands. Other days they don't hurt at all. I also have lupus and diabetes and the doctors have suggested that those diseases exacerbate the pain.

Hang in there!

~ dawn

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