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Women with Dupuytren's
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05/04/18 03:27
Lori-T 
05/04/18 03:27
Lori-T 
Re: Women with Dupuytren's

Hi Anastasia,
I wouldn’t have RT if you are trying to get pregnant. I was insanely careful about every decision I made during that time in my life. Maybe the injections will help prevent contracture. That said, studies (from six years ago) showed that targeted RT doesn’t seem to have a negative effect on your health. I was not willing to go the route of injections, numerous surgeries, long recoveries and possibly losing the use of my hand. I have absolutely no regrets about my treatment. I read numerous articles and studies done in Europe, and that convinced me the U.S. was really NOT up to speed on this disease. I feel fortunate that I found a doctor here at home, and that my treatment was covered by insurance. My radiologist used the German RT protocol.
I hope that everything goes well for you...especially having little ones!
Best wishes,
Lori

02/09/19 06:12
Barbara 
02/09/19 06:12
Barbara 
Re: Women with Dupuytren's

Thank you for all your posts on this thread I found the reading very interesting especially Lori's sharing on RT. I was diagnosed with DP about two years ago and didn't really think much of it. The doctor told me not to worry about it like I hear so many of you say. The nodules started on my right hand and have now shown up quite prominently in my left hand which definitely has me concerned. They are painful to the touch and the disease seems to be progressing quite quickly. I'm 52 and of north European dissent with Swedish lineage.

Barbara

02/22/19 16:25
Vmvmvm 
02/22/19 16:25
Vmvmvm 
Re: Women with Dupuytren's

I have the disease and it started as soon as I had a hysterectomy and went into menopause.i had a frozen shoulder that did clear up. I’ve dont the needle apathy. As well as the medicine that breaks down the collagen. Which did help for one. But that was extremely painful. I now have in both hands uggggg and have surgery next month fingers crossed it helps somewhat. I find tho I do get a chill in my arm all the time tho and now have some pain in my elbow. Not sure if it’s linked but I think it is. Will be looking into it as well.


Anyone else find this happens to them?

02/23/19 02:12
nanshands 
02/23/19 02:12
nanshands 
Re: Women with Dupuytren's

Barbara:
Thank you for all your posts on this thread I found the reading very interesting especially Lori's sharing on RT. I was diagnosed with DP about two years ago and didn't really think much of it. The doctor told me not to worry about it like I hear so many of you say. The nodules started on my right hand and have now shown up quite prominently in my left hand which definitely has me concerned. They are painful to the touch and the disease seems to be progressing quite quickly. I'm 52 and of north European dissent with Swedish lineage.

Barbara

Hi Barbara, Wondering if you decided to pursue RT in light of your rapid progression of DP?

02/23/19 02:34
nanshands 
02/23/19 02:34
nanshands 
Re: Women with Dupuytren's

Vmvmvm:
I have the disease and it started as soon as I had a hysterectomy and went into menopause.i had a frozen shoulder that did clear up. I’ve dont the needle apathy. As well as the medicine that breaks down the collagen. Which did help for one. But that was extremely painful. I now have in both hands uggggg and have surgery next month fingers crossed it helps somewhat. I find tho I do get a chill in my arm all the time tho and now have some pain in my elbow. Not sure if it’s linked but I think it is. Will be looking into it as well.


Anyone else find this happens to them?

Yes! Most definitely with some people this disease is triggered by shoulder issues, and continues thereafter, especially if shoulder problems persist. And, highly likely they do to one extent or another since frozen shoulders, even when better, typically cause some loss of shoulder rotation. Rotator cuff the same situation.
Personally, since both my shoulders have had problems, when I stretch or do exercises involving my shoulders and arms, I can feel the pulling in the cords, in my hands. If I do too much I can feel pain radiate up into my forearm and sometimes elbow. I rarely do anything with weights more than a couple of pounds or much lifting; it can trigger nerve pain. And, I can also get chills in my left arm at times. My left hand worse with DP. Minor contraction.
Because you state you are having surgery next month, and have tried NA, I am going to assume you have pretty bad contraction in fingers. I am very sorry to hear things have not gone well for you. Are you considering RT as follow up after surgery? Many people have found success with RT after surgery to prevent return. Just something to consider.
Hoping the best for you! Nan

03/06/19 16:58
Shelly 
03/06/19 16:58
Shelly 
Re: Women with Dupuytren's

Vmvmvm:
I have the disease and it started as soon as I had a hysterectomy and went into menopause.i had a frozen shoulder that did clear up. I’ve dont the needle apathy. As well as the medicine that breaks down the collagen. Which did help for one. But that was extremely painful. I now have in both hands uggggg and have surgery next month fingers crossed it helps somewhat. I find tho I do get a chill in my arm all the time tho and now have some pain in my elbow. Not sure if it’s linked but I think it is. Will be looking into it as well.


Anyone else find this happens to them?


I do believe estrogen can be protective for DD. I had a complete hysterectomy at age 50 and then noticed development of nodules and chords in hands (developing aggressively ) shortly 6 months after surgery. I was diagnosed with DD at that time with no previous signs prior to my hysterectomy. I also experience pains in my lower arm at times.

03/09/19 09:36
Signet19 
03/09/19 09:36
Signet19 
Re: Women with Dupuytren's

I have just been diagnosed with DD and also have Ledderhose to both feet. It just about came around all at once about 12-18 mths ago but the lump and pulling with one hand caused me to go see the GP. I did have ultrasounds on both feet 12 mths ago with nothing diagnosed other than lumps requiring surgery to remove if they get worse. Now the recent hand ultrasound actually diagnosed DD and s revisit about my feet also diagnosed LD. It’s interesting reading in this forum and a lot can be learnt. I am in Sydney although my GP is at a loss as to what to recommend for me. As far as I am aware no one in my family has had this issue but having said that I was the only one in my family with rare VHL as well. 😟

Edited 03/09/19 09:43

03/22/19 05:06
dorislisa

not registered

03/22/19 05:06
dorislisa

not registered

Re: Women with Dupuytren's

yep, in menopause this year and DD was triggered by a fall, had first set of 5 radiation on hand. sounds like could be a factor with the injurty

03/28/19 22:40
lisaanne 
03/28/19 22:40
lisaanne 
Re: Women with Dupuytren's

Hello everyone!

I posted my story with a Dupuytren's diagnosis in a new topic titled.. "Dupuytren's vs Palmar Fibrosis"... as after four DD diagnoses, with two GP's, an ultrasound/radiologist, and an internist, I saw a hand surgeon who told me what I have is in fact palmar fibrosis. I am a 32 year old female, musician, and it appears this diagnosis of palmar fibrosis was related to starting birth control about one year ago... 4 months prior to the onset of the nodule. As I state in the story, my experience may or may not be of use to you, particularly if what you are dealing with is a true Dupuytren's contracture... but I wanted to share my story in case others might relate to my symptoms and might find that they also do not have an accurate diagnosis... or perhaps to generate more discussion of these hand disorders and their relationship to hormones.

By the sounds of it, palmar fibrosis can be treated/rehabbed. So if there are any out there that relate to my story, I hope it might help you find a better treatment plan for what you are dealing with.

https://www.dupuytren-online.info/Forum_...1553808308.html

Edited 03/28/19 22:50

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