I would like to share my story with a Dupuytren’s disease diagnosis. I am 32 years old, female, musician, music teacher and music therapist. I play cello, piano, guitar among other instruments, and I work full-time. I am also a rock climber. Dupuytren’s is not anywhere in my family.
Last September I noticed some strange localized bruising in the palm of my hand, below the ring finger. By November a small nodule had formed. I was also experiencing some aches and symptoms similar to tendonitis, which I have dealt with back in my college days, and generally have a physiotherapy routine I follow to address it. I also noticed my fingers feeling sluggish and less responsive, struggling to be precise, making more mistakes than I usually do. By February, the nodule had grown so I went to a my family doctor and showed her. She sent me for an Ultrasound which confirmed a Dupuytren’s nodule. She explained that this disease has nothing to do with the use of my hands and told me I could continue playing music, and to wait and see, as it progresses slowly and sometimes will not need any treatment.
I continued working and climbing. The first week of March I had to accompany a choir on piano. I practiced for two weeks leading up to the performance. One of the pieces had lots of extended, four note chords in which I had to stretch both hands beyond an octave. Over the two weeks of practicing, my hands started swelling and became painful. My skin in my palms started thickening, tightening, tethering and puckering in different spots. Some bands seemed to be tightening and pulling fingers inwards. The pain was very severe. I went back to the doctor who became very concerned about the “rapid progression” and booked an appointment with an internist while I waited for an appointment with a hand surgeon. I then performed with the choir, and immediately after, both my thumbs started “contracting”. The day after performing, I could not reach an octave (8 keys). I can normally reach a 10th. There were two thick bands that seemed to be restricting my thumbs. I saw the internist who looked at my hands and then at me, asked, “Are you Irish?”, to which I replied yes, and then he said, “100% Dupuytren’s”. I still debated this as it was so atypical, considering the pain, reactivity to playing piano, being 32 and female, and not in my family. He showed me the medical database they get their information from, and it supported the diagnosis, stating the use of hands as a contributing factor, that pain and swelling sometimes occurs, and that the gene can go dormant for generations. He said I needed to see a hand surgeon to discuss treatment options. I mentioned how about a year ago, shortly before the early symptoms started showing, I had started hormonal contraception, a very high estrogen dose pill. I personally felt as though this was related, but he said that there was no chance of that, as this was a genetic disease triggered by overuse, nothing to do with my hormones.
I could no longer play music and was forced to stop working. My doctor and I were discussing filing for a disability claim. As can be imagined, this was very emotionally distressing. I gave my hands three weeks of rest. I researched the internet. Not just google, but as I am currently working on my thesis for my masters, I have access to the medical journal database and I read as much as I could, with my lack of medical knowledge and my emotionally fueled bias. I am aware, this is not the most scientific approach. However, somewhat ashamedly, I did more research into this in a few weeks than I have into my entire thesis. I tried everything I could that I believed might help. I went off the birth control pill.
In my reading, it seemed as though this was not simply a genetic disease, but had many other influencing factors, such as microvascular changes, hormonal imbalances such as estrogen/estriol and relaxin, liver disease, diabetes/insulin resistance etc. I was very confused by the research, and confused by all the varying case reports of people and their Dupuytren’s, posted on numerous forums, showing many different presentations and symptoms. It appeared as though there were different types of Dupuytren’s, as suggested by Dr. Charles Eaton.
Story continued in part 2... apologies for the length!
I saw the hand surgeon about three weeks later, after fully resting my hands. By that point, the pain, swelling and skin changes had settled down a little, but the thumbs were still restricted and still could not reach an octave. The hand surgeon looked at my hands and listened to my symptoms and told me I do not have Dupuytren’s, but instead, palmar fibrosis. He explained that Dupuytren’s is strictly genetic, does not present with pain and swelling, and does not respond so quickly to playing piano like my hands did. He said that the restrictions in my thumbs would not result in true Dupuytren’s contractures. He said the nodule is nothing of concern, and they can happen for no reason at all. He asked about my general health, any signs of rheumatological disorders, and I told him all of my blood tests came back normal, my health is good. I told him the only change in my health was that a year ago I went on the pill. He said, “That could do it”, and explained that women on birth control have lots of fluid retention, which for most women would have no impact on their lives, but when you are using your hands daily in a repetitive motion, something like fluid retention can interfere with the bio-feedback loop and the signaling gets interrupted, resulting in inflammation, bad technique etc, which can encourage this type of repetitive injury… He said I need to work with a therapist to correct it. I have an appointment in a couple weeks to get started on a therapy program for what now sounds like a repetitive motion injury, not a genetic disease.
The reason for sharing this story is because over the one month course of being diagnosed with this disease, I was confronted with some mass misinformation and conflicting advice, not just on google searches, but from doctors, internists, and straight from the medical journals themselves. I’ve read countless stories of people with symptoms just like mine who believe they also have Dupuytren’s and that there is nothing they can do about it. The hand surgeon explained that these two disorders… Dupuytren’s and palmar fibrosis, have been lumped into the same category, but they are not the same thing. He said that the correlation with Dupuytren’s and alcoholism, diabetes, liver disease etc… is not actually a true Dupuytren’s disease, will not result in a true contracture, but instead, is palmar fibrosis, and a result of inflammation. I google searched palmar fibrosis, and found absolutely nothing on it. However, after reading everything I have in the medical journals, I believe this explanation of these hand disorders could help to tease apart the differences between the disease of which is genetic, and the disorder of which is related to underlying health conditions, repetitive motion, over use, hormonal imbalances, etc. Perhaps there are those that are dealing with both, whereas others are dealing with one or the other. I understand this story will not have much significance for those who are truly dealing with a Dupuytren’s disease/contracture, and I have much sympathy for this disease and hope that research into bio-markers and genetic identification can help to find a cure. My hope in sharing my story is for those who are dealing with similar symptoms as myself, that they will not jump on the Duypuytren’s diagnosis too quickly and believe there is nothing you can do to address your symptoms. See a hand surgeon first! If my hand surgeon is right, which I no doubt believe he is, then palmar fibrosis is a systems disorder, one of which can be treated if the underlying health issue can be addressed, and if a therapy program to manage the inflammation and repetitive strain can be followed.
I am aware that hormonal contraception will most definitely not be the “cause” of palmar fibrosis for many women out there, nor do I believe that women on birth control are placed at higher risk of developing this, as I believe myself to be highly sensitive to any medication I ever take (much more than the average bear) and substantially more involved with my hands than many/most people. I do, however, believe research into the balance of estrogen/estriol and relaxin, as well as the influence of estrogen going through your liver, causing vascular changes, could be a worthwhile pursuit for research in hand disorders. I would like to see better diagnostic criteria used to distinguish between the genetic disease of the hands versus the inflammatory disorder of the hands. I am fortunate to have access to health care in Canada, so I was able to get many opinions in a short time. For those who are not so lucky, and rely on the expensive opinion of an ultrasound or their GP, then I hope this story might offer a little more perspective without breaking your bank or crushing your hope of recovery!
In my case, the Dupuytren’s diagnosis was correct. I had an uncle who was always having hand surgery, but I never knew the cause of his problems. After my diagnosis, I inquired about him. His hand was left virtually useless, because of numerous cord release surgeries.
Dupuytren’s is genetic, but hand trauma can trigger DD. I was using a hand sander for several weeks before my nodule showed up. Hormonal changes may have played a part, as well.
I have no regrets about having radiation. The nodule in my hand is gone; however, the cord that would have caused eventual contracture, still remains. I was told that it typically doesn’t go away.
For those who truly have DD, making an informed decision is critical. Hand surgeons in the USA have not always been forthcoming with treatment options.
Your situation may very well be different, and I’m happy you found a physician you can trust. Keep playing that piano...I wish I could play! 😊
It is always useful to demonstrate photos of the involved extremities, eventually with marks on the palpable findings (circles for nodules, double lines for cords, lightning sign for pain or pressure points etc.)
Not to confuse the issue, please, differentiate between the two different medical terms "Fibrosis" and "Fibromatosis". Dupuytren Disease is also often termed in the medical literature as "Palmar Fibromatosis" but not as "Palmar Fibrosis" (please check "Wikipedia" on these different terms
(1) FIBROSIS = SCARRING PROCESS
Fibrosis means the formation of excess fibrous connective tissue with a normal tissue (e.g. skin) or organ responding to an injury as part of a reparative or reactive process. If the response is be to an injury this process is called scarring, however if the fibrosis develops from a single (proliferating) cell line the process is called fibroma (i.e. benign tumor).
Fibrosis produces deposits of connective tissue and can disturb or inhibit the normal architecture and function of the underlying organ or tissue. Fibrosis can occur as excessive deposition of fibrous tissue or as a normal process of connective tissue deposition in a normal healing process. Fibrosis results in scarring and thickening of the affected tissues and is an exaggerated wound healing response which interferes with normal organ function.
(2) FIBROMATOSIS = SOFT TISSUE TUMOR related to the SARCOMA Family (according to the World Health Organization WHO) Other names ARE "musculoaponeurotic fibromatosis" which addresses the tendency of these tumors to be adjacent to and / or infiltrating deep skeletal muscles or the term "aggressive fibromatosis" and/or "desmoid tumor." It comprises a group of soft tissue tumors which have the following characteristics features in common:
- the absence of cytologic (= cellular) and clinical malignant features - a pathohistology including proliferating well-differentiated fibroblasts - a locoregional infiltrative growth pattern / spreading in surrounding tissues without forming metastases - an aggressive clinical behaviour with local recurrence after surgical resection
There are different disorders possible within this group
- Juvenile fibromatosis - Fibromatosis colli, whih is a non-neoplastic sternocleidomastoid muscle enlargement (in children) - Infantile digital fibromatosis (of fingers and toes) - Infantile myofibromatosis (of muscles) - Fibromatosis hyalinica multiplex - Penile fibromatosis (occuring as Peyronie's disease in males) - Palmar fibromatosis (occuring as Dupuytren's contracture and part of Dupuytren disease - Plantar fibromatosis (occurs as Ledderhose disease) - knuckle pads (occurs as Garrods disaese)
In my case, the Dupuytren’s diagnosis was correct. I had an uncle who was always having hand surgery, but I never knew the cause of his problems. After my diagnosis, I inquired about him. His hand was left virtually useless, because of numerous cord release surgeries.
Dupuytren’s is genetic, but hand trauma can trigger DD. I was using a hand sander for several weeks before my nodule showed up. Hormonal changes may have played a part, as well.
I have no regrets about having radiation. The nodule in my hand is gone; however, the cord that would have caused eventual contracture, still remains. I was told that it typically doesn’t go away.
For those who truly have DD, making an informed decision is critical. Hand surgeons in the USA have not always been forthcoming with treatment options.
Your situation may very well be different, and I’m happy you found a physician you can trust. Keep playing that piano...I wish I could play! 😊
Take good care,
Lori
Hi Lori,
As I said, I realize my story won't help those who do in fact have DD, and I'm so sorry it interferes with your piano. I debated posting my story as I don't want to make those who have it feel worse, it really is an awful disease.
Partly why I wanted to post is because I am very aware of hand surgeons in the USA not being as forth coming as they are here in Canada. Surgeons here in Canada will do EVERYTHING not to operate. I don't think they have as much conflicting interest as surgeons do in the States.
I also wanted to share because what he explained to me helped to tease apart the differences between symptoms that can be treated with therapy etc, and symptoms that can't. He explained, and was very clear, there is a difference between "fibrosis" and "fibromatosis", but that they often get lumped into the same category and get treated in the same ways. For example, pain radiating up the forearm, pain in the hands, pinching sensation in the elbow, swollen thumbs/fingers, swelling in general... those are all due to inflammation and can be treated. He said the typical DD does not cause those symptoms. He said he can't guarantee that I don't have the disease, as it could be there, but its not the source of my problems, that my thumbs pulling in, my hand tightening, the pain, is due to over use and inflammation, which can be treated.
He referred me to a very specialized therapist... there was only one in Vancouver he felt was good enough. I will start with her in two weeks.
It seems that radiation therapy is definitely the best option for prevention of DD, I really, sincerely hope that helps slow yours down! And if there's any chance you are experiencing some symptoms such as mine... pain radiating up the arm etc... maybe there is some treatment for those symptoms?
To be clear, he diagnosed me with palmar FIBROSIS. Not fibromatosis. I am very aware of the differences between fibrosis and fibromatosis, but when I searched for "palmar fibrosis', I was directed to information about DD. There is not much out there that discusses symptoms and treatment of fibrosis of the palm.
The surgeon I saw explained to me, and his med student who was there for our consultation, (and who was also confused by what he was saying) that when they relate diabetes, alchoholism etc, rheumatological disorders, etc.. to DD, that it's not actually correct. He said that palmar fibrosis, not fibromatosis, is what diabetics and liver disease is related to, and it will not progress to a true DD contracture. He said that DD (or, for clarity, palmar fibromatosis), is a genetic disease that does not cause high levels of pain or swelling and rarely "progresses rapidly". He said the two have been put under the name Dupuytren's, but that the symptoms of swelling and pain, do not belong to DD. The thickening and tightening of the bands belong to both, but one will progress to contracture, and the other won't... or at least won't progress to a true, irreversible contracture.
I was skeptical, as it really goes against everything out there, including the medical journals, not just wiki. But, it makes sense the way he puts it.
He said it's possible to have both, but that the symptoms I was presenting with can be treated, that my thumbs, despite having thick bands pulling them inwards, would not truly contract. I have been doing some stretching he showed me, and though they are not released, the bands have become much more stretchy.
I wanted to post my story as I had read many others out there that described my symptoms, and they have no family history, and they had some sort of hormonal change, or they are very young and use their hands for work, and are terrified due to how "rapidly progressing" their DD is. It's possible they can treat those symptoms.
I just wanted to add that even though in quoting my surgeon that DD is genetic, that I think you are entirely right that there are things that can "trigger" or "accelerate" it... such as trauma, repetitive use, or hormonal changes. That's partly why I think it can be so difficult to tease apart whether it is fibrosis or fibromatosis, they both have some similar precipitating factors to the onset. Even though surgeons aren't always forthcoming of treatments, they should be forthcoming about differentiating the two diagnoses, one would hope.
Lisa, I just want people to know that radiation can stop DD before contracture. This disease is somewhat time sensitive. My fingers are perfectly straight and I’m very thankful. If it were to show up in my left hand, I would not hesitate to go through the same radiation protocol. If you wait until the disease is advanced, radiation may not be able to help you.
Take care, Lori PS. I can’t play piano because I never took lessons. I suppose it’s never to late to learn.🤔
I have sometimes wondered if I had could have been misdiagnosed... Or rather, if my initial self-diagnosis had been wrongly confirmed by the GP who then gave me a note enabling me to consult a hand surgeon. I mentioned Dupuytren's from the very beginning of that consultation, thus perhaps influencing the GP's diagnosis.
The hand surgeon didn't spend a lot of time examining my hands. He didn't contradict the GP's Dupuytren's diagnosis though - and just asked me to lay my hands flat on the table: which I can still do although not as easily as I used to [the articulations between proximate and intermediate phalanges of my little fingers can't totally flat out and my ring fingers feel a little stiff]. He mentioned the 3 treatment options: and told me my nodules were too thick for needle treatment [option #1]. He wouldn't consider injections [#2], as he claimed the risk of damage to the hands is too great. He said my only option was surgery [#3], but not until/unless I could no longer lay my hand flat on a table at all. He gave me a ticket for a follow-up visit in 6 months to monitor the evolution.
I'm in Montreal, Quebec - and have only consulted within the public health care system. I found one hand specialist in a private clinic in Montreal, but it costs $385 for an appointment. Perhaps I will decide to pay to get his opinion - but it I find it expensive for a single visit [excluding any treatment].
There is no Dupuytren's in my family. I've done a lot of push-ups and chin-ups over the past 30 years [am now 51], and the nodules have appeared exactly where my hands rest on the floor or grip on the bar, where the repetitive "trauma" occurred over the years. Also, people have often commented my hands were cold - and I've occasionally felt paresthesia ["pins and needles" or "falling asleep"] in my little fingers, especially in winter time [while indoors].
Your post has prompted me to question my diagnosis and seek more answers.
A second opinion to confirm your diagnosis will certainly not hurt. But your palm looks pretty much like Dupuytren's, and the middle joint of your little finger is contracted.
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