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Kassiane said in May 13th, 2008 at 19:10

YAY.

They keep saying since my writing is legible, my 9/9 beighton is irrelevant. Heh. Gotta love beaurocracy, the antithesis of logic. But I’m SOOO glad the ring splints are working for you.

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ballastexistenz said in May 13th, 2008 at 19:29

I’m nowhere near as bendy as you are. That makes no sense.

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Imbrickle said in May 13th, 2008 at 20:31

Interesting. I can also bend my fingers like your, and hold my pens the way you show in the picture without the splints. I got hassled for it a lot in school, but I only experience pain if I’ve been writing for a long time which nowadays only occurs when I have an exam.

I like that the splints are quite attractive looking. More like jewelry. How nice!

What a great, informative post!

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Flora said in May 13th, 2008 at 20:46

Amanda, thank you so much for posting this. I didn’t realize until very recently that my hypermobility was unusual. It is very helpful that you posted this wealth of information.

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Naomi said in May 13th, 2008 at 21:01

That’s very interesting - I wonder if this expains my very poor handwriting. I only scored a 1 on the Beighton test, but my grip on a pen looks very similiar to yours without the splints, and I can bend the tip of my index finger back just like you do in the picture. I never considered that being able to do that might not be normal.

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Fledchen said in May 13th, 2008 at 21:37

My fingertips bend back like yours, but I only score a 1 on that Beighton test. I had no idea that fingertips weren’t supposed to bend back like that, I guess I’ve never really looked much at other people’s hands. My handwriting has always been rubbish and the only way I can hold a pen/pencil without dropping it or at the very least have it wobble all over the place is the “wrong” way. My handwriting is most legible with a fountain pen or felt-tip pen, probably because it requires less force than other kinds of writing instruments–although pressing down hard can act as a sort of brace to keep my grip steady.

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laurentius-rex said in May 14th, 2008 at 3:04

I have the same hypermobility, I guess the old fashioned typewriter I learnt on was hard on the old fingertips considering the force it took, electronic keyboards are kinder (although there is the accumalative RSI damage further up that makes typing impossible some days.

As for handwriting, my adaptive solution to that is not to. the problems extend way beyond the fingers into the wrist which is why I gave up on it more than 25 years ago.

I have wrist splints but I find them impractical.

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Casdok said in May 14th, 2008 at 3:18

Thank you for this, my son has very hypermobile fingers.

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Kassiane said in May 14th, 2008 at 4:19

No, it makes no sense, especially as I’m long diagnosed EDS 2. To them what matters is that they can read my writing.

As more people show benefits from the splints who are LESS hypermobile, it becomes more likely that everyone who needs them can get them. Eventually.

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ArcheryGirl said in May 14th, 2008 at 5:19

I’ve known that I’m hypermobile for a long time, but looking at the photos of you writing has finally helped me to figure out why my writing grip looks so wrong. Thank you for a very informative post. I wish that someone had known this stuff when I learning to write and getting lots of comments about my weird grip!

It also makes sense of my piano playing. Everyone always assumes that it must be easy because my hands are so flexible, but I’ve always found it tricky because my fingers bend backwards and lock into positition at awkward moments. I feel a little less crazy now!

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[...] May 14, 2008 by archerygirl This blog article popped into my Google Alerts today: They should do all assistive technology this way. [...]

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ballastexistenz said in May 14th, 2008 at 12:56

Fledchen: I was surprised, too. Then I searched around for images of people writing, which are easy to come by. Most not only didn’t have the fingers bending backwards, but also had the fingers bent the proper direction, some just unbent in any direction. Then a small number, usually women, had fingers bent backwards while writing.

(And given the prevalence of hypermobility in women, that makes sense. This table lists various samples of people from the general population who were tested for hypermobility, with variation in how strict the criteria were. And some of the female samples went up to nearly 40% of women checked for it.)

I also read that hypermobility was more commonly a few joints than all joints — so having hypermobile fingers but not a whole lot else might be very common.

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The Integral said in May 14th, 2008 at 13:34

hey.I’m glad you found something that works. Yes, they are very pretty. I wouldn’t have guessed they were assistive devices..

I think if people who needed any kind of assistive technology/devices had more input into how it is made, they’d look quite a bit better.

I imagine assistive devices look very medical or whatever because people who don’t need them, made them. Many of us on the spectrum (not including yours truly. Ivan….maybe a little) are good at taking things apart and putting them back together…..and building things.

Perhaps those of us who have those skills, should start thinking about developing assistive tech devices that (in their opinions and others) don’t look hideous. Perhaps that could be another idea for the autistics.org project in the future….I know you have your hands full with that for now. Just think about it for later.

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Melody said in May 14th, 2008 at 15:46

Hm. I got a one on the beighton thing, but I have always had difficulty (and pain) with trying to hold spoons and pencils. I had absolutely no idea until this post with the pictures that the bending of the fingers might result in the pain and difficulty writing (which has allotted me more time on tests because my handwriting, and unfortunately I have an essay exam in my worst subject history in a few hours). I am more flexible than most people my age (at least, that was true in ninth grade, when they had us do state physical testing, and of about 100 people I was being the most flexible), though not nearly as much as my oldest sister, who could bend her fingers back a lot more than I could, plus other double-jointed things (I think this is why I didn’t consider for a long time that I might be unusually flexible, since I was nowhere near as flexible as my sister).

I also have pain typing, but it is much less than handwriting, so I type as much as possible rather than handwrite. Unsurprisingly, my note-taking skills have dramatically improved in the last few years I’ve been allowed to type notes.

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Julian^Amorpha said in May 15th, 2008 at 1:28

I think we actually have damaged nerves in one of our fingers from our “pencil death grip.” Um, basically, there’s a numb spot on our right index finger that never seems to go away, and sometimes hurts, which happens to line up with the place where we have it pushed up against a pen or pencil when writing. We don’t have it on our non-dominant hand, only the one we write with, so it doesn’t seem to have to do with typing or anything. We suspected for years that our difficulties with holding pens or pencils for long periods of time might have something to do with “muscle weakness,” but… gah.

The way we had to grip our pencil when writing was just one of those things we assumed to be normal for years and years. We just switched to typing everything as often as we could, when we first came in contact with the idea of word processors, and never had any idea until we read this post that these things were available. (We knew that some of the other stuff wasn’t quite “normal”– we apparently score 8 out of 9 on the Beighton scale, and other kids used to harass us about “it’s so gross how far your knees bend back, you look like a freak”– but it didn’t occur to us for a long time, for some reason, that anyone might have tried to define or study this stuff, or that it was a trait shared by anyone else, anything but us just being a “freak.”)

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David Harmon said in May 15th, 2008 at 16:09

Very cool, and yes they look quite nice.

I actually have a sort of opposite to hypermobility — my wrists don’t bend back more than 30 degrees or so. That is, I can’t do the classic “push-up” position with hand 90 degrees back from my forearm. This ran on Dad’s side of the family; my uncles assure me there’s also a limit to my shoulder range, but I’ve never had a real chance to compare that to someone “normal”.

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Kay Olson said in May 15th, 2008 at 16:27

I’ve never heard of splints like this before. I like that they’re effective AND look like funky, original jewelry. It makes me wonder if my muscle-weak stiff fingers could benefit from something related, maybe even something I could make with my rudimentary jewelry making skillz.

Thanks for sharing.

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ballastexistenz said in May 15th, 2008 at 16:40

David: Yeah, also a person can be hypermobile in some joints (and some directions) and not others.

And, just for “fun” (sarcasm alert), there can be joints that develop restricted mobility as a result of being originally hypermobile. My neck is a case in point, I now have restricted range of motion in one direction whereas I had always been hypermobile in it before. And one of my fingers is permanently restricted in motion as a result of a sprain while reaching (relatively gently, but at just the wrong angle) to pick up a book.

I talked to someone else at one point who said it’s weird how much something called hypermobility now restricts her mobility.

So I have some joints with a normal range of motion, some restricted, some hypermobile, and some a combination of the above depending on which motion is being described.

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Evonne said in May 16th, 2008 at 10:48

Ooh, pretty! And yes, in addition to the “therapeutic” label adding hideousness for some reason, it also usually adds cost, whether it applies to, say, an interactive toy, a weighted vest, or friggin’ horseback riding. I think folks are really getting cooler about making assistive stuff look more attractive, but yeah, the attractive stuff often comes from manufacturers and sellers who *aren’t* trying to milk the therapeutic label. And there’s no reason why making an assistive device look less ugly should jack up its price — for example, a cute pair of plastic eyeglasses costs just as much to make as a hideous pair of plastic eyeglasses, and holy mole, folks in the last couple of centuries actually started wearing eyeglasses for fashion! By the way, I’m still so happy I found your post about Zenni Optical back in the day . . . both my husband and I have nutty prescriptions and it’s nice to have found a site that charges fairly for what it’s selling you — which is, after all, just a piece of plastic.

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laurentius-rex said in May 16th, 2008 at 18:14

When I was young I did not believe the notion that hypermobility could be considered a disability in any way, but then I heard it could have implications for joints in later life, oh well I have found out the hard by ageing I suppose.

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mom to max said in May 17th, 2008 at 12:57

wow…that is too cool. my son with autism doesn’t have this issue but my older son who is not on the spectrum does have the handwriting issues. we have tried all sorts of things but I had never heard of this.

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Dyssocial Butterfly said in May 17th, 2008 at 19:19

Your splints are pretty!

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Emily said in May 18th, 2008 at 0:39

Hmm. My fingers do bend like yours, kind of; I’ve sometimes idly wondered about that. But as for lax joints in general - man, I wish. I seem to have the opposite problem - stiff joints, lack of flexibility/range of motion, and just an overall ungainly body. I suppose being too flexible wouldn’t be good either, but so often, what I wouldn’t give for more flexibility. Thanks for another good round of info!

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ballastexistenz said in May 18th, 2008 at 10:55

mom to max: One thing that had always confused me, by the way, was that I had always assumed I had bad fine motor skills in general, leading to bad handwriting until my motor skills matured more (but then bad handwriting again after awhile, which I couldn’t figure out). But my typing speed goes against that idea, as do many of the tests I’ve undergone of fine motor skills. So discrepancies like that are another thing to look for.

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Diana said in May 18th, 2008 at 23:02

I never knew that’s what was going on with my hands and why it hurts me me to write before.

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Kristie said in May 20th, 2008 at 2:32

My husband realized our 7 year old son’s fingers were hyperflexing “double jointed” and his teacher is failing him in handwriting. He is also being labeled as “hyperactive”. I think maybe is adapting to the pain with his “hyperactive” behavior - not realizing to say “it hurts”. I just connected the two together today… but noone seems to believe me so far that the hyperflexible fingers are an issue! I will take it to his physician if the school won’t address it with the OT there… probably should inform the physician anyways. He is also having speech issues. He had drooling issues as a toddler (bad drooling). I’m going to keep researching to see if maybe some of this is all connected. Since I’ve put it all together…. I just look at the people around him at school and think… GEEZ you guys… can’t you pick up on this! An OT and COTA I work with don’t think the hyperflexible fingers would affect his handwriting that badly…. but I think it does (of course they haven’t seen him).

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Kerrilynn said in May 20th, 2008 at 23:37

I’ve only just gotten diagnosed with EDS after years and years of dislocations and pain. I actually can’t hold thin pens anymore, I can only use super fat ones (like the PhD pens) and I hold them as if I am making a fist. Now that I know what my problem is, I am going to ask about finger splints. It’s amazing how much a tiny joint like that can hurt so incredibley much!

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Chris said in May 21st, 2008 at 9:24

I just watched your videos on YouTube for the first time after reading the Wired article in a doctor’s office yesterday. My brother, we believe, has autistic traits. He’s been mentally disabled since birth and is now 25. He has OCD and continually does the same things. Just the thought that perhaps he has an inner voice that he tries to get out in his own ways…is comforting. Thanks to you for making the videos that you do. I’d love to chat with you sometime! :-)

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Marikay said in May 23rd, 2008 at 7:55

wow!
I have been needing finger splints and had no idea where to start. someone told me about splints they saw that were like silver rings but didnt look more into it. I stumbled upon your utube blog from a anger vent blog, so a hop,skip and a jump a few websites to reach your videos and your blog. Your videos are fantastic, and what I mean by that is that they are really eye openers to those who have not had experiance with autism. after watching several videos I clicked onto your blog and saw this entry about splints and was insanely thrilled. you not only have said splints but you were kind enough to explain how they work and everything for us. I have hypermoble ehlers-danlos syndrome. mostly in my larger joints but now in my hands and stuff.
Thanks so much for sharing so much!
-Marikay

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Amy J said in May 29th, 2008 at 12:10

I’ve never heard of these and I don’t need them (though I do know people who could benefit from them) but I just have to say they are actually rather pretty!

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pewterfish said in May 31st, 2008 at 20:23

“They should do all assistive technology this way”

Yes, they really should. Compared to the cost of developing the things in the first place, the cost of making them aesthetically pleasing is pretty minimal. At the end of the day, something like a joint splint or a hearing aid (etc. etc.) is going to be worn day-in, day-out in most if not all cases, so spending a little effort on making it not look like some kind of torture instrument is a good idea.

“Looks nice” is almost certainly not on the design specification, which is probably why it doesn’t happen often. Nonetheless, it’s good to see some people are bothering to think about their products, and the way they are used. It’s surprisingly difficult to get engineers and designers to think that way, sometimes.

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Sophist said in June 1st, 2008 at 22:39

My fingers don’t bend too extreme. I can notice the difference only in my left pinky; however, I have noticed in more recent years how painful and strong a grip I have on a pen/pencil so much that my writing stamina is utter crap. Thank god for computers. I always knew I had hypermobile elbows (actually, it’s fun to kind of gross people out with bending them back in strange positions, hehehe). But I never thought about it in relation to my hands and my poor writing stamina and hard grip.

For me, however, it’s worked out well just to do most of my writing on computer and for anything in which I’m required to write by hand, I’ve been given accommodations for extended time.

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Barbara said in June 10th, 2008 at 22:17

I linked this post inside one of mine; titled “Alignment”. Thanks for the great photos in addition to all the descriptive text. Cheers.

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Lisa said in September 20th, 2008 at 1:26

I work in a child development centre as a speech Language pathologist ( so I am working with children under 6) I have never seen these reccomended by the Occupational Therapists there, I wonder if they are suitable for small children learning to hold crayons, pencils etc as well, firstly- they look awesome, like some kind of crazy body jewellery. So many assistive devices look so ” medical ” and the children and parents shy away from them because of that. I am going to go ask the OT’s I work with on Monday if they have seen these or are aware of them :)
Also to follow up on your comment on hypermobility of the joints. When we do our assessment of children we do a team assessment - Speech Path, OT and Physio, hypermobility of the joints seems to crop up very often with children that eventually end up getting an ASD diagnosis. So although I cannot quote any studies on this, speaking from personal experience I would say this is very likely a frequent co-existing characteristic.

An additional note, thank you very much for taking the time and making the effort to make your videos and also put together an informative blog on your personal experience of the world. I am finding it a wealth of information and it is giving me so much food for thought, in both my work and my personal life ( I have a child on the spectrum and also my husband has an AS diagnosis)
heartfelt thanks !

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mark p.s.2 said in September 20th, 2008 at 15:37

The hand reminds me of the character named Seven, from star trek Voyager. She had a similar cool looking hand.

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mark p.s.2 said in November 13th, 2008 at 13:27

Some star at a MTV awards is wearing some kind of metal hand device/jewelry. I can’t tell if its functional or not.
http://www.leenks.com/gallery753-0.htm

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Chelle said in February 27th, 2009 at 0:31

WOW! This just might be what my son needs. I googled “double jointed thumb hard time holding pencil” and was directed to your blog. If he “tries” to hold the pencil correctly he says it hurts and it looks a lot like how you hold the pencil with out the splint. Most of the time he just writes with a fist. Oh I’m so excited to know that there is possibly something to help him. Thank you for journaling about this.

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gecko said in April 7th, 2009 at 18:42

my finger bends like that when I hold a pencil.. I didn’t realise it wasn’t supposed to..
my hands hurt a lot when I write, and the writing is barely legible.. but I just don’t write anymore.

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Amanda said in May 13th, 2009 at 9:36

I have a 8yr daughter who is very double jointed and kids make fun of her I find at school she takes longer to do her work eventhough its neat she takes longer when writing so that it can be right children make fun of her because it takes her longer does she need ot or what can I do to help her.

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mom said in May 16th, 2009 at 21:20

I think a lot of people including some doctors don’t realize how much difficulty double joints can cause..They are so used to thinking flexibility is a good thing…and it is up to an extent…I recently told my new doctor that I can put both hands flat on the floor and he thought that was a good thing. I was telling him my hypermobile spine has given me grief in the past.
Most occupational and physical therapists understand the problems with such things and if your daughter has double jointed fingers and you are observing difficulty in holding pencils etc. it might very much be worth seeing a hand specialist. I know our daughter had much difficulty as well as pain with note taking and it took way too many years for someone to figure out the cause. I hope you are able to find ways to help yours early!

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chaoticidealism said in May 19th, 2009 at 21:31

Amanda–check your daughter’s pencil grip; if she’s holding the pencil the regular way (not bending her fingers back to do it, or gripping so hard her hand cramps up) then it’s likely she really just needs the extra time she’s taking. If you have to talk to her teacher about getting that extra time, especially if she runs short of it on tests, then do so. She will likely speed up as time goes on.

Improper pencil grip is something that’s annoyed me over the years. I learned to write before I entered school, so by the time I was taught to hold the pencil “properly” (i.e., a way that wouldn’t give me hand and arm cramps), I’d been holding it the wrong way for years. I still hold it wrong. My fingers bend back and I’m moderately flexible, so I have to hold the pencil quite hard to keep from having it slip through my fingers. Naturally, I get cramps in my hand and arm very easily using this method.

One solution your daughter might benefit from is a pencil grip that fits around her pencils. They come in different shapes and sizes, from foam to rubber, and can help you keep your pencil under better control. Triangular ones help you keep a good finger position; the rubber types stop the pencil slipping around so much; then it’s a matter of waiting and letting her muscles grow a little stronger (they have to, to make up for weak joints).

I’d also advocate teaching her to type. At eight, she’s the perfect age to start; and typing is much faster than writing. It’s a great alternative to spending a long time writing and re-writing things if you take a long time writing (or, as I do, compensate by using a pencil grip that’s painful after half a page). I actually am allowed to type essay exams on a computer at the disability services office at my school; and it’s a great advantage to be able to think about what I’m writing, where otherwise I’d be focusing on getting it over with.

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j said in May 27th, 2009 at 2:36

When I was a kid, they spent ages giving me those rubber triangular things to correct how I held a pencil. It never worked.

I hold a pen very much the way Amanda does. And my fingers bend backwards easily. But I don’t want anything that involves more doctors, diagnoses, or medical equipment.

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ballastexistenz said in May 27th, 2009 at 21:56

Yeah I had one of those triangular things too, they gave it to me the moment they saw my weird way of gripping a pencil. And it didn’t really work for writing. I loved touching the grips and smelling them (and holding them between my nose and upper lip) but using them was a whole different matter. They weren’t very useful to me at all, IOW.

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Tacitus said in May 28th, 2009 at 14:50

I hated those triangular things. Somehow they felt all wrong. So did the ergulr grips, but these days I like those better as it turns out they are slightly more comfortable.

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Methyl said in June 3rd, 2009 at 23:10

Damn. I’m fairly sure I have Asperger’s syndrome, I fit the criteria. And my fingers do that. I always thought it was normal.

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j said in June 5th, 2009 at 4:08

I know I thought everyone’s fingers did that, until I read this. But apparently, it isn’t normal.

Of course, on the other hand, I used to assume that my bad handwriting and hand cramps were pure laziness and lack of perseverance, and now I can think it’s something to do with me being built differently.

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tacitus said in June 9th, 2009 at 6:08

I don’t get hand cramps–I get arm cramps. I dun geddit

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ballastexistenz said in June 10th, 2009 at 18:02

I get both hand and arm cramps, and these things helped with both. (I was surprised they worked on things like my arms being sore up near the wrists and elbows, but they did.)

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Stefan said in June 10th, 2009 at 22:39

Most of the muscles used for gripping are in your forearm, so maybe that’s the connection.

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Andrea S. said in June 11th, 2009 at 11:35

I wouldn’t have thought of it until I saw your comment, but it makes sense that arm muscles would be affected too. You’ve mentioned gripping pens, etc., harder without the splints (so your fingers will grip the pen enough to actually move it rather than just bending backwards). I’m not exactly a muscle/physiologist/anatomy specialist, but I believe the muscles between the wrist and elbow are involved in certain types of finger/hand movements.

Incidentally, I have recently realized (after being alerted by a neurologist who was checking me out for something completely unrelated) that I seem to have mild hypermobility in some of my fingers. No other joints I don’t think. And not even all my fingers. But one very slightly affected finger does seem to be the one I use for holding a pen. So I have to wonder now if that might be part of why my handwriting is so terrible!

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Evonne said in June 15th, 2009 at 21:49

Mmmm, yes, those triangular things smelled awesome! Sweetish, and texturey. But yeah, they didn’t make writing any easier. I think they made it harder.

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Tacitus said in June 21st, 2009 at 3:48

Mucho agreement, Evonne

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Nyara said in August 6th, 2009 at 5:38

I’ve seen this post before, but I just noticed that I grip pens the same way you do without the splints. Which would explain why I write so slowly, not to mention the pain it causes. Even a short note makes my forearm start hurting. Writing anything of substantial length, like what I had to do in school, is literally agonizing. (The last time I had to hand-write an essay, my arm was spasming by the end.)

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s. johnston said in September 18th, 2009 at 10:46

Check out edfn.org–the Ehlers-Danlos website. There is lots of helpful practical advice there. Also, to be properly diagnosed it helps to see a specialist in this type of disorder (EDS, Marfan syndrome) such as a geneticist. I wear the thumb splints too, and when I wear them I have little or no pain–without them, I’m in pain again after a few days. I get a lot of “nice bracelet, kinda punkish!” comments.

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ballastexistenz said in September 18th, 2009 at 15:29

I was actually diagnosed (with hypermobility syndrome, not EDS or Marfan’s) by a jaw specialist of all things. It turns out he screens his patients for it if (like me) they’re having trouble with their jaw popping out or dislocating. Because it’s one common cause of it. (He also found some structural problems so he said it was probably a combination of both.) I’d previously been to doctors who told me I could not be in pain because I was so flexible (headdesk), so I just barely had the nerve to admit widespread joint pain to this guy. I’m glad I did though — ankle braces, finger splints, and assorted modifications to my wheelchair changed my life.

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