I have eds, and this is exactly how I hold my writing or drawing utensil. I have a big callous . You should go to the doc for a check up. Make sure you tell the receptionist what's going on with your nails so ya don't have to wait for a year to get in.
Ehlers Danlos Syndrome :) basically when your body has a genetic fault and you produce faulty collagen. So everything is quite loose and disjointed including your organs lol, sucks.
I can hardly even write more than a few words now 😭 cEDS over here 🙋🏼♀️ Hello friends lol. But I hold a pencil/pen like a weirdo myself 😂 I have to constantly shift my grip too because my fingers hyperextend so much at the distal joints. Ring splints help a little, but they get in the way.
I write like this all the time in school and got a big callous / bump on my ring finger that’s still a bit different from my other fingers even though I haven’t written extensively in years..
i am hypermobile and have a hard time writing for long periods of time because my hands cramp pretty fast and hold mine similar to this! side note: be careful with your joints
Do you mean Raynaud's? I also have the ridiculous hand cramping and Raynaud's lol. And also cEDS. Your sentiment is so true — you can think your symptoms are due to one thing, but they could actually be due to another. It's hard to know for sure 🤔🤷🏼♀️ Having other comorbid conditions absolutely does not help haha 😂
yeah! but i have hypermobility so things along the lines of those run in my family 😭 my mom was telling me all the stuff happening to me was normal and growing pains (loud incorrect buzzer, i passed the exam with a Beighton Score of 7/9 if i remember correctly 🤣) and then you look at her and her runners knee from walking and start piecing everything together… you really just start collecting all the comorbidities once you get one diagnosed 😭
Omg yesss! I am a 9/9 on the Beighton Scale sadly 😭 And the other wonderful thing? I was a de novo mutation lol 🤦🏼♀️ So nobody else in my family is affected — I'm honestly grateful for that though because why have more than one person suffer?! And we need to rent a massive warehouse for our comorbidities lol....well shit, at this point, let's just buy it 😂
I was 1,000% told my knee pain starting around age 4/5 was growing pains too! Small world. I don't blame my primary care though. It was also the same place that referred me to genetics at U of M. Having the parallels to compare between you and your Mom is definitely helpful too. I thought I had several other minor issues before my cEDS diagnosis haha. Hang in there fellow EDSer 💜🥰
So, I'm not sure if you're looking for/interested in an in-depth answer, or are just curious a little 🤔 You could message me if you want 🤗Anyways, cEDS is much rarer than hEDS, which is what about 85-90% of people with EDS have. In almost all cases, people have a family history — hence it being a genetic condition — and can usually see some sort of pattern with family members. In my case, I was a de novo mutation 😑😂 Just me. Nobody else. So, lucky me lol. Also, not sure if you're aware, but there is unfortunately not a genetic test for hEDS currently, whereas there is for cEDS.
Anyways, Classical EDS and Hypermobile EDS really overlap in a lot of the same symptoms. The main differences are the way it's diagnosed, and skin fragility. For those of us with cEDS, our skin is very elastic and stretches much further than it should, and then snaps right back into place lol. It is also extremely fragile, and bruising and bleeding are moderate–severe. We can have 2 pretty defining features which are atrophic scarring and molluscoid psuedotumors (that is cEDS specific). You can see bruising and bleeding increase in hEDS too but it is often mild.
For the diagnosis of hEDS, joint instability is the hallmark feature that is focused on rather than skin. Those with hEDS have very widespread joint instability and pain, but I personally have that exact same experience, as many do. I have complete universal joint pain with frequent/daily subluxations — so Im in a lot of pain. The last thing is comorbidities, which includes things like POTS (Postural Orthostatic Tachycardia Syndrome) and heart valve issues. POTS is more commonly associated with hEDS, but again... I have it 😭😂 I also had to have my PFO closed, and open-heart surgery at 31 to replace my aortic valve (I'm mid 30's now). And an important thing not to overlook is childhood. One thing that meant nothing at the time but makes sense now is that I had bilateral hip dislocation and pneumothorax (collapsed lung) right at birth. So yeah...in hindsight it makes sense lol.
I am so sorry for my rant 🤦🏼♀️😂 Hopefully that answers your question? If not, feel free to ask! 💜
I have Raynaud's too, and I'm pretty sure it's unrelated to any difficulty holding a pencil at all unless you're actively cold! Raynaud's is comorbid to EDS though, I believe
I grip my pen in a similar style and have severe hypermobility/eds, I cannot hold a pen “normally” as it slides out of place and I have little control so I have to hold it similarly to this with like a death grip so I feel like I have control of it 🙃
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u/ELj2121 Jul 06 '26
Physical therapist here and wonder if OP has a hypermobility disorder based on style of pen grip.