It's been a wild few days for me. About a week ago, I noticed a weird nodule on my palm.
I've had #Lupus for over 45 years now, and am used to the #arthritis aspects waxing and waning depending on whether or not I'm in full remission at any given time.
Sometimes my hands look like the witch's in Disney's version of Snow White, sometimes they look just a bit knobby at the joints but fairly normal.
1/x
Pain is a big part of my life. As is typical for lupus, it can be quite concentrated in one place or shift all over from day to day or even be everywhere all at once.
Again, sometimes this pain is extremely bad and sometimes it is ignorable. Very rarely, it vanishes.
2/x
My hands are very important to me. I spent several years learning #ASL and eventually even got the chance to work FT as an interpreter in a school for a few years!
I always figured the fine motions I kept my hands busy with are a big part of keeping their dexterity *despite* the #Lupus and #arthritis, and I stand by that.
3/x
That said, when my joints are flaring, my hands may be able to make fine *motions* but not control fine motor movements with a pen or pencil.
Despite occasional bouts of promising skills sketching or doing caligraphy, most of my life, I have relied on keyboards and mice to write and draw.
I've treasured the occasional periods where I *could* write by hand, but mostly I can't.
4/x
This limitation proved to be excellent motivation to learn to type. And by type I mean touch-type.
I could and still can do 75 wpm on a manual mechanical typewriter. 😎
I adore typewriters, and ended up being very thankful my school hadn't upgraded to electronic crapwriters when I was learning as I built strong muscle and movement memory on those old Coronas we had to use!
5/x
I do a lot of other stuff with my hands, too. I remain grateful for an #Indigenous neighbour who taught me how to bead, and later I learned how to make my own #mukluks and other traditional winterwear.
6/x
Then there's machine sewing, #TabletWeaving, and origami.
And reading and writing (and #typing!) #Braille.
Oh! And playing #recorder and #autoharp (tho' not at the same time 😂).
Not to mention all the other stuff that we use our hands for, from flossing our teeth to combing our hair to driving a vehicle to picking up groceries from a shelf to …
The list is endless!
7/x
A couple of years' ago, I was really struggling with the recorder. Granted, I'm pretty new to attempting to play beyond little things we learned in school decades ago, but thanks to some great books and #TeamRecorder videos on YouTube, I was making decent progress from the beginning of the #pandemic.
8/x
I was having a terrible time getting the last two fingers of my right hand to cover the #recorder holes properly.
I figured my #arthritis was getting in the way so switched from #alto to #soprano because the finger distance is a bit closer.
This change helped a little, but then #wildfires literally took my breath away all summer so I had to give up, as coughing ones's guts out doesn't work well with woodwinds.
9/x
This summer, I was more successful developing ways to ventilate my residence while also keeping #wildfire smoke out, and was also able to setup a portable #AC unit for the helldays.
We also had far more safe air days this summer than prior, so I started again practising finger excercises, scales and little tunes on my #recorder.
And soon was again running into some troubles with the bottom two fingers. 🤔
10/x
My hands felt fine but I figured age was getting to them as -- despite everything -- I have managed to continue to get older. (Yay!)
Other life events that needed urgent attention among family, etc arose and I simply set my #recorder aside until I again had time and energy to try playing again.
And then I found a lump.
11/x
I don't tend to have lumps. I mean, generally when a joint is swollen it can make my hands, etc look somewhat misshapen, but I'd say that looks just like any other person with arthritis in those joints.
12/x
There WAS a lump once, but it was bigger and in breast tissue, and turned out to be #BreastCancer, but I was treated more than 20 years ago and my lab work still shows No Evidence of Disease (cancer-wise: I still have a long list of other stuff that we use routine labs to monitor and guide treatment, etc).
This was much smaller and in an odd spot -- the palm of my hand.
13/x
After examining it as best I could, I started doing research, learning that there are a few reasons one can have a lump in the palm.
Knowing my complex #MedicalHistory as well as I do, it was easy to strike off all but two possibilities: a cyst or #Dupuytrens contracture.
14/x
A cyst isn't impossible, but this lump, while in the 'palm', is actually directly beneath the knuckle of my ring finger. If you were to run a needle or something between those two points, they would be aligned as closely as possible, not angled from one another.
So I kept reading and watched a few videos and thought about the non-cyst condition, #Dupuytrens.
And realised one of my direct ancestors DEFINITELY had it!
15/x
I've been priviledged to spend time -- including holding hands -- in the final days of many of my elders over the years.
Only one had these strikingly strange hands: it was as if there were cords running from the heel of the palm to the base of the fingers, pulling them inward. The cords were raised quite high, leaving deep indentations between the skin that webbed over them.
16/x
At the time, I had assumed this was an outcome of the elder being in the trades their whole life. After all, hand tools did not used to be electrical or air powered and it makes sense to my arthritic self that decades of heavy percussion against the tendons and joints might cause such a result.
I didn't ask, just quietly made a reasonable assumption.
… or so I thought.
17/x
… because I had unknowingly made a very obvious error in my logic about the cause of my elder's hand problems.
See, if I get too fatigued when hand sawing something, I simply switch hands and use the other to saw. Lots of us #Lefties can do that and never think twice about it.
But my elder was right-handed, as as is common for such folk, staunchly so. There would be no hand-switching for tools, yet both hands were equally as damaged.
18/x
And this is critically important, because #Dupuytrens is considered genetic, although AFAIK the precise gene has not yet been identified.
This condition is also sometimes called #VikingsDisease, as it most commonly effects people from or descended from #Scandinavia and northern European regions such as the #Netherlands.
And that fits my elder's history perfectly.
19/x
After further reading and videos, I felt confident that I have discovered the early-stage of this condition clearly in my right hand, with not only the visible and tactile lump under my ring finger but some unusual contouring under my middle finger.
Apparently #Dupuytrens is most common in the pinkie and ring finger, but other fingers can be effected as well.
20/x
My age is also in the typical range for onset.
#Dupuytrens rarely starts in young people, athough Britsh actor #BillNighy is an exception, having it develop in his early 20s.
Alas, I don't think I'll ever be as stylish as Mr. Nighy, no matter what condition my hands are in! 😛
21/x
While I'm pretty fair at attempting #differential on my own, I always seek competent #medical help to affirm or reject my suspicions.
After all, I'm NOT a doctor, nor do I play one on TV!
But an important part of my life journey with many different #ChronicIllnesses has been to learn everything I can so as to either work with it or mitigate it as best as I can. And a proper diagnosis is critical for doing that well.
22/x
My research was solid, so much so that the doctor readily agreed it was unlikely to be a cyst and seemed clearly to be #Dupuytrens.
Yay! (Not "yay! another disease to notch on my belt" but "yay, I figured out the correct diagnosis!")
For me, it is a huge relief to have a framework for a problem, and that's what a diagnosis can provide.
23/x
This thread is not a humblebrag though, but a/some questions for folks out there who are personally familar with #Dupuytrens:
What are your experiences? Are there things I should avoid (whether activities or treatments)? Things I should ensure I do? Recommended resources? Resources best to avoid? Etc etc etc.
24/x
#Dupuytrens can be a very disabling condition, despite being "benign", and I am hopeful there are some effective strategies for mitigation of the condition itself.
If the reality is there are no real mitigations and I am simply facing an ongoing decline in finger/hand function, I also appreciate knowing that so I can do my best to prepare for that change while I still retain function.
25/x
As always with my rambly threads, thanks for reading, folks!
And thanks also for sharing and forwarding to folks who might be able/willing to share their own experiences with #Dupuytrens.
This will be another fascinating path to tread.
🙂❤️
26/fin
Thank you very much! This is helpful to know. 🙂
I've only run across a few post-op images so far but I was very concerned by one that to my mind would leave patients at high risk of the suture line (once healed) if the palm had high pressure on it, which (if true) would pose worse issues for me than the original problem.
Please thank your mum for me for sharing her experiences! ❤️
Likely Jan Lukas
Shelley