{"id":425,"date":"2026-03-02T03:31:01","date_gmt":"2026-03-02T03:31:01","guid":{"rendered":"https:\/\/nocoffei.com\/?p=425"},"modified":"2026-03-03T21:23:14","modified_gmt":"2026-03-03T21:23:14","slug":"my-life-with-ehlers-danlos-syndrome-part-1","status":"publish","type":"post","link":"https:\/\/nocoffei.com\/?p=425","title":{"rendered":"My Life with Ehlers-Danlos Syndrome, Part 1"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">In October 2024, I felt a strange tingle in my hands. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">One year later, I was unable to use a computer.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">It wasn&#8217;t RSI. It wasn&#8217;t psychosomatic pain. It wasn&#8217;t carpal tunnel, nor cubital tunnel, nor, in fact, any of the usual culprits. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">This article is half-rant, half-awareness post, about trying to understand an unexplainable problem and how it feels to become disabled at a young age. It&#8217;s about Hypermobile Ehlers-Danlos Syndrome, a health issue I&#8217;ve never seen discussed in our neck of the woods (like, the &#8220;hacker&#8221;-ish community, Lobste.rs and the like), what it takes to get diagnosed for it, and what it did to me.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Once we&#8217;ve established that, I can talk about some fun accessibility technology I&#8217;ve uncovered in a Part 2.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">The Tingle<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">So in Splatoon 3 there&#8217;s this sub weapon called the &#8220;Fizzy Bomb&#8221;. It&#8217;s a chargeable bomb that you engage by mashing buttons. The faster you mash, the faster it charges.<\/p>\n\n\n\n<figure class=\"wp-block-video aligncenter\"><video controls src=\"https:\/\/clips.morbinti.me\/fizzy_mash.mp4\"><\/video><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">When combined with the Aerospray MG main weapon, this becomes a veritable spam cannon of bombs, bullets, and an exploding inflatable shark.<\/p>\n\n\n\n<figure class=\"wp-block-video aligncenter\"><video controls src=\"https:\/\/clips.morbinti.me\/battle_aerospray\/2024082321584200-4CE9651EE88A979D41F24CE8D6EA1C23.mp4\"><\/video><figcaption class=\"wp-element-caption\"><em>If you aren&#8217;t lobbing ten Fizzies a minute you&#8217;re playing the weapon wrong<\/em><\/figcaption><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">I felt an odd sensation after a few hours of this starting in October 2024. I didn&#8217;t think much of it at the time. The tingles progressed somewhat over the next two months, jumping over to keyboard and mouse issues around the new year, and I decided to get it looked at in January 2025. A career in tech is bound to have hand issues, so I should nip it in the bud early, right?<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I first saw a &#8220;sports medicine&#8221; doctor, who looked at my hands under an X-Ray, told me I didn&#8217;t have carpal tunnel syndrome, and sent me to a hand clinic. That hand clinic told me I DID have carpal tunnel, prescribed me some wrist braces to lessen the impact, and said that, basically, the key to resolving RSI is to get the inflammation down, then do some muscle strengthening to prevent recurrence. They gave me some exercises to do as well.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">It is worth defining carpal tunnel at this point. I am NOT a medical professional, but basically carpal tunnel syndrome is an overworked set of muscles through the &#8220;carpal tunnel&#8221; in the hand, which become inflamed and cause pain as they bunch up against the tunnel. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">After a few sessions, it became clear that not only was the inflammation not decreasing, it was accelerating. And for some reason, I wasn&#8217;t able to do <em>any<\/em> of the exercises prescribed to me without pain. After it became clear that the clinic had become puzzled at my symptoms and didn&#8217;t know what to do, I stopped coming. I relied on the wrist braces more and more, wearing them almost all day, every day.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I saw my first hand surgeon in June hoping for a real explanation. I was sorely disappointed. She looked at my hands and said something to the tune of &#8220;I have no idea what&#8217;s wrong with you, you don&#8217;t have carpal tunnel and as far as I can tell your hands are healthy.&#8221; She suggested maybe contacting a rheumatologist, but given how dumbfounded she was I didn&#8217;t even consider following that lead. I should have.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">What on earth?<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">And on it went. I didn&#8217;t notice, but my functional ability at work steadily declined. On reflection, it&#8217;s hard to concentrate mentally when it hurts to use a computer, but I blocked the pain out. I pushed through. And I didn&#8217;t even realize it.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I was already finding excuses to leave early almost daily by March. By July, I was probably working less than half the amount I should have been. When I went to Defcon 2025, I noticed something truly bizarre&#8211; the absence of pain, as I didn&#8217;t use a keyboard the whole week. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I tried acupuncture. They said they saw many cases of traditional medicine failing RSI patients, and that I&#8217;d be healed up in 6 weeks, no problem. Six weeks passed and nothing changed.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Three experts had failed to properly diagnose me, so I was ignoring the problem. But by September 2025, things had become so severe I couldn&#8217;t even work for an hour before I was subjected to incapacitating pain. A peer in the local 2600 group suggested that I take medical leave, which is quite liberal in Massachusetts, where I live. As a last-ditch effort, I posted to Lobste.rs <a href=\"https:\/\/lobste.rs\/s\/o0x7rb\/your_mouse_free_setups\">asking for advice on keyboard-only interfaces<\/a>, thinking that, since my right hand hurt the most while using a mouse, I could try ditching it.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">While it was lovely reading about all the suggestions people had (some of which I adopted, as I&#8217;ll discuss in Part 2) it turned out that keyboard-only interfaces were not the solution I needed. After a day of trying to learn <a href=\"https:\/\/github.com\/niri-wm\/niri\">Niri<\/a>, a shortcut-focused &#8220;floating&#8221; window manager that is indeed very cool, I was in as much or more pain than an average workday.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I wrote to my employer requesting medical leave the next day.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Getting an ACTUAL diagnosis<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">So there I was. In crippling pain, blocked from doing any of the things I loved (any typical computer use, sewing, 3D modeling, CAD design, video games, biking) and with no clear path forward, but lots of time to find one. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I just want to point out that I&#8217;m terribly lucky to have been in a position, from an employment standpoint, and state and federal laws, to be granted the time to seek the help I needed. This is not something I take for granted, and it&#8217;s the first of many opportunities I got that helped me heal, and without which I would have almost certainly ended up exiting the industry or perhaps even wound up homeless.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I made three more appointments with hand surgeons, and waited two weeks to see them. <\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p class=\"wp-block-paragraph\">By the way&#8211; that&#8217;s an immensely short turnaround. Lucky me. But still, it took two weeks of just twiddling my thumbs to even get started.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Medical leave is not all sunshine and rainbows. I couldn&#8217;t do anything I wanted to do. That said, when life gives you lemons, make lemonade&#8230; I took a lot of trains, for one.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">If this were RSI, healing would have come naturally as the tendons would have decreased in inflammation. But as expected at this point, after two weeks of absolutely zero computer use I was aching just as bad as day one.<\/p>\n<\/blockquote>\n\n\n\n<p class=\"wp-block-paragraph\">I wanted three more opinions, since the first three were useless. I also started to wonder. Could this somehow have a connection to a Hypermobile Ehlers-Danlos diagnosis in the family? That&#8217;s a genetic condition, I understood, that could cause all sorts of weird things in the body.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The first guy turned out to be the wrong person to talk to.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The second was terribly dismissive, a total jerk, and also didn&#8217;t know what was going on.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The third, though&#8230; He came in 40 minutes late, but sat there, politely and patiently, and carefully examined me with the diagnosed relative on the phone. He agreed&#8211; It was an hEDS-based issue. &#8220;Look at how this joint flexes,&#8221; he said. &#8220;That&#8217;s called a VISI instability, where the muscles in your wrist are simply too weak to hold themselves together.&#8221;<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p class=\"wp-block-paragraph\">I can&#8217;t do this anymore, but basically, the motion was something like this. The red line is the wrist.<\/p>\n\n\n\n<figure class=\"wp-block-image aligncenter size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"876\" height=\"436\" src=\"https:\/\/nocoffei.com\/wp-content\/uploads\/2026\/02\/image.png\" alt=\"\" class=\"wp-image-426\" style=\"width:441px;height:auto\" srcset=\"https:\/\/nocoffei.com\/wp-content\/uploads\/2026\/02\/image.png 876w, https:\/\/nocoffei.com\/wp-content\/uploads\/2026\/02\/image-300x149.png 300w, https:\/\/nocoffei.com\/wp-content\/uploads\/2026\/02\/image-768x382.png 768w\" sizes=\"auto, (max-width: 876px) 100vw, 876px\" \/><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\"><br>It was possible to wobble the entire hand up and down, out of its straight line, at the wrist joint.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">You are not supposed to be able to do that.<\/p>\n<\/blockquote>\n\n\n\n<p class=\"wp-block-paragraph\">Then came a tricky part&#8211; finding the right people to see. &#8220;I don&#8217;t know how to help you&#8221;, said the hand surgeon. &#8220;What you have defies expectations, and surgery can&#8217;t help. You need a specialist that understands your condition.&#8221;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I struggled with this for a couple weeks. Then I learned about the <a href=\"https:\/\/www.ehlers-danlos.com\/echo\/\">EDS ECHO<\/a> program. This system solves exactly the problem I have&#8211; finding professionals who actually understand us.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">EDS ECHO has a map of healthcare providers who can help with hypermobility disorders. I contacted a few of them, then started actively working with two that seemed to best fit my needs.<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p class=\"wp-block-paragraph\">And again, especially in the U.S., I&#8217;m <em>exceptionally<\/em> lucky to have had the ability to see whatever provider I wanted. Good healthcare is hard to come by. <\/p>\n<\/blockquote>\n\n\n\n<h2 class=\"wp-block-heading\">The injury, and treatment<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">I&#8217;m not a hand surgeon, nor a physical therapist. In fact, I don&#8217;t understand the physiology of the hand much at all. But I&#8217;ve scrapped together enough from working with physical therapists and a bit of reading to understand what&#8217;s wrong with me.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Basically, what seemed to happen was that from a combination of naturally poor posture (raise your hand if you can sympathize with that&#8230; go on, everyone reading this should have their hand up by now), extreme overuse, and my bodys natural hypermobility, all the muscles in my wrists gradually stopped taking the force they&#8217;re naturally supposed to. Since my hands were still doing things, the forces I put on them started being taken by other muscles instead, a possibility made trivial by hEDS. Compensation, I&#8217;ve learned, for incorrect posture comes naturally to us, as hypermobility allows things to flex in normally impossible ways seamlessly (and ultimately in a damaging way.)<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The three exact muscles that took the brunt of the misplaced strain were the flexor carpi digitalis, the flexor carpi radialis, and the flexor carpi digitorum superficialis.<\/p>\n\n\n\n<figure class=\"wp-block-image aligncenter size-large is-resized\"><img decoding=\"async\" src=\"https:\/\/www.getbodysmart.com\/wp-content\/uploads\/2017\/10\/ant-forearm-deeper-muscles-1-Flexor-Digitorum-Superficialis-1024x1024.png\" alt=\"\" style=\"width:500px\"\/><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">As these three muscles terminate at the carpal tunnel, it looked like carpal tunnel syndrome, since part of the pain originated there; but in reality the affected muscles were hurting all the way up the arm, where they terminate at the humerus.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The key was understanding that the affected muscles were not, in fact, the ones that were hurting. From there, it was possible to start rebuilding strength in the muscles that were actually affected.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Being that these muscles had completely atrophied to the point of being useless, this was embarrassingly slow at first. I struggled to lift a 2 pound (~1kg) weight in one particular exercise. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The treatment is&#8230; Physical therapy. Lots and lots of PT, and reps, and working out, overseen by someone who really gets your condition. As I mentioned earlier, PT with a traditional therapist who doesn&#8217;t understand hypermobility will only make the problem worse; the problem is that this condition is rare, and in med school, students are taught, &#8220;when you hear hoofbeats, think horses, not zebras.&#8221; This adage means that you should assume the most common source of a problem; this is why people with EDS tend to refer to themselves as &#8220;zebras&#8221;.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Especially in the early stages, it&#8217;s critical to reengineer your life around avoiding further injuring the damaged muscles. This meant giving up a lot of things. I don&#8217;t play Splatoon anymore. I haven&#8217;t sewn anything since July of last year. I took a lot of hikes. I remained on medical leave for an additional 1.5 months because I was too weak to use a computer. Every morning I&#8217;d wake up, see all the things I wanted to do with my time, and continue on with my daily reps in the hopes of someday, maybe being strong enough to achieve them again. Although in theory I could do them right there and then, doing so would deal tremendous pain afterwards, and the &#8220;ignore it&#8221; mentality had not done me any favors up to that point. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Treating this kind of injury is like shaking a can of soda. You have to shake it, deliberately, some in order to heal. But shake too much, and the can pops. When that happens, that&#8217;s a flare-up, and recovery from that takes days or weeks.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">There&#8217;s a lot of little things I do to manage it, too. Heat, ice, pain cream, this wonderful device called &#8220;KT Tape&#8221;&#8230;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I&#8217;m writing this in March 2026, five months after I started PT. Things are improving, definitely, but I&#8217;ll likely never be quite right. There will be no more Fizzy Bomb spam in my future.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Takeaway (Stop scrolling now)<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">The point I&#8217;m trying to make is&#8211; this sucks. This is a post complaining about my disability and how it affects every aspect of my life. Of course, I&#8217;d love to have a normal body that doesn&#8217;t fight me every step of the way just to have a normal life, but that&#8217;s not the way things are.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I&#8217;m doing this to set the stage for the technology that helps me get through the day. If I&#8217;ve managed to convey a hundredth of the angst I&#8217;ve been through trying to make this body function again, I&#8217;ll hopefully have successfully convinced you of the importance of such technology that helps me use a computer normally in spite of my issues&#8211; and why it&#8217;s important that attention is paid to it now before it goes away forever.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I&#8217;m also doing this to hopefully convey the angst of <em>any<\/em> kind of physical condition to our peers. Too often I see, &#8220;yeah I had carpal tunnel, it sucked, I had to do a whole lot of stuff to heal from it&#8221;. OK, well, what I&#8217;m trying to convey is that it sucks A LOT, and if you&#8217;re struggling&#8230; You&#8217;re not alone.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Finally, Ehlers-Danlos syndrome is a horribly under-researched and poorly recognized condition. In the many suggestions I heard from Lobste.rs, only one <a href=\"https:\/\/lobste.rs\/c\/jjxrla\">even hinted<\/a> at the true nature of my injury: <\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p class=\"wp-block-paragraph\">[Try] Reformer Pilates. You look crazy while you are doing it and I was the least in shape person in the class (and still am). This strengthens all the small muscles in your arms, back, chest and legs and seemed to better distribute the load of repetitive actions. The first classes were agony but after six months I was more or less back to normal.<br><\/p>\n<\/blockquote>\n\n\n\n<p class=\"wp-block-paragraph\">Some people go their entire lives without being diagnosed. Between my relatives diagnosis and mine, we&#8217;ve started to, as a family, re-contextualize the decades of suffering our elders went through without ever truly understanding why, other than a &#8220;bad back&#8221;.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">So if I can convince even one more person to investigate their body and find that they have this condition too, it will be worth it. The exact injury EDS dealt to me is individual in nature; it can do all sorts of insane things that most doctors have no explanation for.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">[Part 2 coming soon.]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>A fairly rant-y post about becoming disabled.<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-425","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/nocoffei.com\/index.php?rest_route=\/wp\/v2\/posts\/425","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/nocoffei.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/nocoffei.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/nocoffei.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/nocoffei.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=425"}],"version-history":[{"count":5,"href":"https:\/\/nocoffei.com\/index.php?rest_route=\/wp\/v2\/posts\/425\/revisions"}],"predecessor-version":[{"id":436,"href":"https:\/\/nocoffei.com\/index.php?rest_route=\/wp\/v2\/posts\/425\/revisions\/436"}],"wp:attachment":[{"href":"https:\/\/nocoffei.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=425"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/nocoffei.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=425"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/nocoffei.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=425"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}