Speaking as someone with autism and EDS who's wound up needing way too many joint surgeries, if you've hit your OOP max for the year, there are two things you should do:
1. See an EDS specialist and go over all of your joints with them, including a detailed discussion about what sorts of exercise and activities you like to do (lifting, etc.). They can give you a formal diagnosis if you don't have one already, and can help with the second thing, which is....
2. Physical therapy. There's proactive physical therapy you can do for EDS to strengthen the stabilizing muscles around the joints that can help mitigate-- not prevent, but mitigate at least-- the stretching of the ligaments and tendons. It can make a huge difference and lessen the likelihood of things like this (potential distress or tear/rupture to the ligaments or tendons) happening in the future.
Going to second physical therapy! I had a fantastic physical therapist that got me back to my previous activity levels 6 months after an invasive orthopedic surgery. Because I also was an established patient, it made it a lot easier to get on her books for other injuries that I experienced post-op.
This is hugely helpful and I had no idea that these were even options for me. I don't officially have EDS, or if I do it's a less common subtype because I don't meet a lot of the traditional symptoms, but even knowing that this is an option is really helpful. Thank you
We don't need a diagnosis to get the therapy. We just wrote up the prescription for hypermobility and got it.
I lost the use of both of my hands 2 years ago after a minor injury and needed OT for my hands and PT for my elbows, shoulders, hips, knees, feet.. the whole things.
It's a whole skill to learn. One of the things we do is instead of activate the muscles for movement is pivot on our joints to lift weight, which ends damaging. And once we start to activate our muscles they..twitch and shake a lot more than what others are experiencing, my brain simply doesn't know where my body is in space due to the different in the connective tissue/nerve connections. But I'm getting stronger and healing up. Worth it.
the EDS society website has a checklist for hEDS you can fill out and/or print if you want! also going to third physical therapy. i have a copy of kevin muldowney's "living life to the fullest with ehlers-danlos syndrome" that i bring with me to PT and we mostly go off of that. (you can find it on libgen but you didn't hear that from me) if you end up not having EDS then doing the exercises won't hurt or do anything negative, but if you do then it's a good way to start being proactive about strengthening yourself.
Hmmm, I don't seem to meet any of the criteria for heds other than the hypermobility, as far as I can tell. But I know there's many different types of EDS. I will keep looking into it, thank you!
Really great read! Interesting to me as a Brit living in California right now experiencing the American medical model first hand for the first time is really quite the culture shock. I have a late diagnosis of adhd and autism but my hypermobiltiy was never an issue until menopause and the drop in estrogen raged through my joints and my pain sensitivity went up. I was a wood carver until jsut 2 years ago and now I can't. I'm interested to see how this turns out for you long term, I hope you fund so good pain relief in the mean time . I find a lot of relief from high quality full spectrum cbd topicals for my hands and thumbs. I wish you so much good health, thanks for the continued great reads.
This is not a punishment for all your writing. Your work has done so much for so many people, me included. It’s just a combination of overuse, possible T side effects, and autism-related hypermobility. Life happens. It just fucking happens.
The grief for your former abilities is the fucking worst. Feel your grief. Don’t shove it down. Let yourself be sad and furious and annoyed and allll that shit. There’s not much I can say except keep up the adaptations and see if you can find a 3D printer at the nearest library to print some open-source occupational therapy aids to make your ADLs easier/less painful. For writing, keep up the speech-to-text and use the inbuilt spell/grammar check as often as possible.
As for the insurance side of things, once you hit that OOP, work with the docs to prescribe over-the-counter stuff wrist braces, topical pain relief, etc. so it’s on the insurance company’s dime instead of coming directly out of your wallet. Check the website of your payor to find the medical necessity guidelines they use (if they use Interqual instead, hit me up) and your doc can write your clinical notes aligned with said guidelines, making denials much less likely.
All in all, I just wish you more low-pain days than high-pain ones. Surgery is likely the best option once there’s more imaging, but whatever happens, I hope you get some pain relief and recovery. 🫶🏽🫶🏽🫶🏽🫶🏽🫶🏽
Thank you so much for all of this Blessing. There is so much about navigating the healthcare system that remains inscrutable to me, of course that's by design, and so many things that I didn't even know I could ask for. Thanks for letting me know about some of these options.
been following your hand saga and you've been in my thoughts. a hand injury is so scary and i'm wishing you a speedy recovery, stabilization, adjustment, or whatever other positive development the future holds. thank you for being so transparent and vulnerable with your emotional experiences and your interactions with the medical system. take care of yourself!!
This was a compelling read thank you for sharing this story. Health wise we share some things in common. I'm a 36yo auDHD trans guy who was diagnosed with EDS in 2022. I've been chronically ill all my life but it wasn't until I got too sick to work or take care of my basic needs that I started persuing diagnosis, health management solutions etc. fiercely. I'll try and briefly share some wisdom I've picked up specifically about these "suprise" injuries. Reading about this cluster of chronic illnesses has become a special interest for me especially in the last few years.
Because the overlapping spectrums of so many chronic illnesses (perhaps especially hypermobility disorders) are underresearched and considered "rare" by most I have found even with the absolute best intentions medical professionals really struggle to provide us with the support we need or even be honest and say "I can't help". I recently wrote here about my personal experience over seven plus years seeking medical help purely for joint injuries, learning to nothing but dead ends. Medicine just isn't prepared for us yet, they barely know we exist and the common belief is simply "eds is uncurable" which is far from the whole truth.
in late 2021 I had a similar experience with a thumb injury that just exploded out of thin air. I didn't get access to diagnostic scans, it was so interesting/validating to see what's going on inside your thumb while the injury is still active. I hope this won't be the case for you too but after I had this one injury I then became more vulnerable to other suprise injuries. It's thought that there is a neurological component to our vulnerability to injury because of how how our muscles tense to hold our joints together in place of crap ligaments and it's also thought that may cases of long COVID are actually PoTS that has been triggered into life by COVID. One compelling theory is that this affects people who have other stuff in common (like neurodivergence, gender stuff, hypermobility, GI stuff, etc.) because we share genes that are expressed only if triggered by a trauma like illness.
I've also asked of myself many times "did I make myself disabled by transitioning". As it happens, I started HRT a few months before the thumb episode. I did ask my gender clinic and, weirdly affirmingly at the time, they thought it was laughable that I would even consider there might be a relationship between sex hormones and pain conditions / connective tissue disorders. Now I know that there is thought to be links between a type of progesterone and many of our symptoms including fatigue (look up RCCX theory if you want to read about this). This theory isn't even at the point of medical study but it rings true to me and many others who find they are consistently "sicker" in a lot of ways during and around periods. That's a score for testosterone in to me - it stopped my periods and therefore effectively cured me of all the issues I had related to them. With the benefit of years to dwell on this I've come to the conclsion that it doesnt matter whether HRT helped me along the way to getting sicker or not because it's necessary. Maybe it made me "worse". Maybe it's actually helped. Maybe it's both or neither but for me HRT is a non negotiable, it's not a choice that's on the table because I've always been disabled and was always going to be regardless but if I was given the choice between transitioning and being able bodied I would transition every time.
I have never been excited about surgery, especially since it's thought to be less successful in hypermobile folks and carries extra risks too. Obviously if the tendon is torn it might be unavoidable but perhaps you might want to have an opinion of an additional surgeon or ask how they might approach it given you likely have a connective tissue disorder. I recall reading a study that talked about using a type of membrane to strengthen hypermobile tissue surgery for example and they might be able to take precautions to minimise the amount of scar tissue they create
I found a lot of the physiotherapy I was given was not tailored to me at all and my enthusiasm to follow instructions has actually ended up getting me more injured in many occasions. I think this is sadly a typical experience. Perhaps you can find a hypermobility movement specialist in your area? Personally now I have the miserable knowledge that hospitals can't help me with my injuries I feel less panicked when I get hurt because I know caring for myself is in my hands.
I could say a lot more but this feels like a lot for a comment, I've tried to focus in just on what might be helpful in Devon's circumstances and anyone going through similar. I'm new to Substack and would love to hear from other people here are in there same spectrums so I can read what you're saying too across the whole rainbow of things we're affected by.
thank you so much for being so incredibly generous with your time and experience in writing this comment, Bobby. some of it is a bitter pill to swallow, having hoped that seeking out orthopedists and getting all my appointments in line as quickly as possible could have saved me, but it fits with my experience so far as well as the stories of so many other autoimmune condition sufferers that I know that what I actually have going on here is something that few professionals are equipped to treat. It is scary to look at what could lie ahead. so I am very grateful to hear from people who have walked through much a similar thing, and had to do so much to find their own answers. I'm sure I'll have many more questions and need a ton more advice in the weeks to come to be honest.
I hear you so loud, the feeling of wanting to "do something". What you wrote about moving and stressing the joint I think will be relatable to a lot of people, I hope this is a comforting thought - there's another universe where you saw a doctor before you stressed the joint and they told you to move and exercise it exactly the way you did. You might even have stuck at it longer trusting that you were doing it under medical advice. How unbearable is can be to "sit with it" when you want to fight.
Sorry about the bitter pills, I have a habit of being that guy especially in recent years, I get excited in an ND way about having pills of any kind that can help someone, I'm working out how to hand them out one at a time! It's funny when I read your response I thought you were echoing something I'd written because I sent that EDS UK link to a friend this week with the warning that it's a bitter pill that can take some time to digest on it's own. We're born with suffering sneakily baked into our genes but there's so much of our suffering that comes from medical mismanagement rather than from inside. I take a lot of pride from being able to snatch a little bit of that suffering away, seriously fuck emergency rooms.
You've got this. The fact that you're still finding ways to write and follow your purpose shows you've already got that fighting crip spirit in you.
Thanks, Bobby, for your post. For this autistic, at least, there is never too much information! I have not been officially diagnosed with hEDS or hypermobility, but I have it. Back in my 20s I had two favorite party tricks - bending all of my fingers over each other and popping out my hips. I stopped doing either years ago, but I can still do it for medical professionals. 😏 Your information is extremely helpful, not only to Devon but to all of us who are searching for answers.
Thanks Tracey that's so kind of you. It was very freeing for me to realise that having one of these differences made me more, not less likely to have or develop others too. I'm proudly disabled but I'm also grateful to have clawed back a surprising amount of ability over the years by, mostly just reading a lot and using myself as a test subject when the approach of the medical professionals who I'd previously have trusted to "work things out" for me has been towards illness acceptance rather than understanding. This autistic, to steal your phrase, finds it very difficult to accept things I can't get at least a believable explanation for!
I’m very lucky in that my sister, who is both autistic and even more hypermobile than me, has been very active in learning about connective tissue disorders. She’s made me aware of how hypermobility may affect other aspects of my health. The connectedness of these conditions, while frustrating IRL, is also fascinating!
Dear Bobby, I second everything you’ve said and I admire your thinking. These connections, the “all the things,” plus ND have been a special interest of mine also. I’m new to substack also. I do think there’s a book in this given how informative it is for us, how scattered the papers and people are, and the depth and breadth of abuse by physical and mental health practitioners as they struggle to ignore and blame us for both the physical physical and neurological physical. Best wishes
There's not nearly enough research being done but what there is is facinating and if I don't end up writing that book I would read it. Are you also a writer?
I'm not sure how relevant this is to you, (especially if you're in early stages where there's still a lot to discover) and I think there's a good chance you're already across it, but for me it was revelatory:
The only thing I've ever really found helpful with my chronic health issues (not much direct overlap, but we have significant loss of function in common) is trying to respect and surrender to the lack of control I have over my body.
Of course it's good to do what you can and keep up with appointments etc, but also I think it's really easy to become obsessive. I had periods where found myself winding myself tighter and tighter around my condition, spending all my time doing things I thought would help, taking supplements and special diets, researching and thinking about it, denying myself real mental rest and the capacity to do other things. I think it also reflected/reinforced a fundamental sense of self blame and the weird idea that I am or could be completely in control of myself, my body, and everything that happens to me (this idea is the antithesis of wisdom imo, even though for some reason our culture has decided it's the most virtuous way to think)?
Now that I'm trying to only do the things that I've found to make a big, undeniable difference and otherwise let things be how they are, I feel like I have a life again. Even if it is different from the abled standard I was chasing, at least it's real. Plus, my health now is about the same as it was when I was doing Everything. Go figure!
you know, I was just laying in the MRI machine a few moments ago when I was reminded of a tattoo a friend got during an especially turbulent period in her life that ultimately required making sacrifices: "Surrender." i am the type to push myself too hard and to attempt to control everything, so your comments are needed.
This is excellent advice and is similar to where I’ve ended up, but I’m not doing as well as you. I appreciate you saying this! It’s logical, and I’m not much worse, and what a relief to stop thinking there’s help out there--this med, that procedure, blah blah blah. Each appointment was so stressful, and then there weren’t effective treatments, if any, for the diagnoses anyway. Living with it all is not much of a life, but it is more peaceful to accept it. Though I really need pain treatment, and would accept palliative care at this point. I have pots, hEDS, so many of the other “rarely diagnosed” but not really rare things among us. I was told for decades that the symptoms (even interstitial cystitis, dislocations and eosinophilic diseases) were not only in my head, but that I was actively choosing them:). They really cultivated some nasty stuff, and I would have been much better off avoiding their toxicity but it was all the “help” that was ever offered. Acceptance, and a small, flat life (pots), is the best I can do now. Thankfully I don’t currently have an issue like Devon is dealing with, that requires active medical help.
No medical advice from me -- nothing useful like that -- only a lot of parasocial love along with my paid subscription. Your writing and videos have been so important to me as a late-diagnosed Autistic person. I'm very glad to support your work. I'm sending good wishes to you and every one who cares for you, medical or otherwise.
I'm sorry you had to go through this, Devon, not just the physical pain, but all the medical red tape shenanigans. :( And I thought the Canadian wait times were horrendous...
Right now, I'm seeing a physiotherapist for a shoulder injury that I've had for a few years. Well it's been some months of physio and it still doesn't seem any better. It's a good excuse to barely cook and just rely on takeout. :/
For speech-to-text, I recommend the Dragon software from the company Nuance. I'm always on mobile rather than on my computer, so I use their mobile app Dragon Anywhere. It's probably one of the most advanced speech-to-text software out there. A friend who has a permanent typing injury recommended this. He remarks that speaking is also a lot faster than hand typing, which is true.
This is unrelated, but lately, my dad recommended a book to me that I find really uplifting, and that you might enjoy as well. (Assuming you haven't already read it!) It's "The Deficit Myth" by Stephanie Kelton. Kelton is a Professor of Economics, and a former Chief Economist on the U.S. Senate Budget Committee, Democratic staff. I'm not someone who normally reads books on economics, but I'm enthralled by this one.
The book challenges so many beliefs about the economy, taxes, government, etc. The central message is that the federal government absolutely has the ability to lift people out of poverty, homelessness, and unemployment. Yes, I know not everyone agrees with this (the approach is called Modern Monetary Theory). But wow, I find it so inspiring that this could be a possibility. Or we can at least aspire to it.
I especially loved the idea of guaranteed jobs, so that nobody who wishes to work, needs to be unemployed anymore. My dad thinks it's too utopian and costs too many resources to be possible. But hey, our Ontario government funds some employment agencies here, so that jobless people can get help from career coaches for free, which benefited me at the time. So we could at least move towards that.
Looking for a job can be such a shit show. So it's satisfying to imagine a future where everyone gets help in finding a job (if they wish to work). Rather than just being expected to land a job through endless trial and error... :( This wouldn't be for just any job, but they would match you with your skills and preferences. But yeah maybe that does sound utopian. Still really nice to think about. And sometimes dreams do come true!
Anyway, I thought you might love this book too. In these bleak times, it's so wonderful to read something that gives us a ray of hope. It's written by an actual economist who has insider experience with the U.S. government too. So it's backed up with evidence, not just wishful longing. It makes me think that this kind of thing, might actually be real one day.
Sounds like a great read -- definitely in line with a lot of UBI-type programs potentially. Thanks for the rec. I'm just now reading the book Technofeudalism, and finished a biography of Marx before that, so I'm in an econ kick already!
Highly recommend Dragon for dictation. The one-time-payment version is prohibitively expensive, but there's a subscription app with almost as many features. The main reason I prefer it to other options is that you dictate the punctuation yourself instead of relying on the app to insert it correctly. It means there's a higher learning curve, but (at least for me, who cannot compose prose in the cadence of conversational speech) a lot less frustration in the long term. I have not yet found an alternative that provides this option. (Google claims to, but it doesn't work for anything but the most basic punctuation. I write fiction, so not being able to use quotation marks is a dealbreaker for me. Your mileage may vary.)
I cannot recommend the Dragon enough! I'm on mobile all the time, so I use Dragon Anywhere. Yeah being able to dictate punctuation and even spacing/ paragraphing, is amazing!
I had to have orthopedic surgery a while ago and it was a big flash point in my life. Beforehand, I treated my body like molten plastic that I crushed into shape. Now, I have to stretch regularly or my body will break and I'lll spend months picking up the pieces. For context, I'm in my mid-20s and while it is frustrating to be hyperaware of my body's need for stretching, I'm glad that the care I show my body now will lead to a less painful future. I hope the rest of your medical journey has far less road bumps!
Just want to say thank you to Devon and everyone in the comments being so generous with time and resources. Autistic with newly diagnosed hEDS after years of doctors scratching their heads at me. So much for me to research here.
Here in New Orleans we have a dedicated clinic that came out of a research clinic at Tulane. I’m sure some folks have heard of it. They are doing some really interesting research around hEDS, hyper mobility, and folate deficiencies. Linking the article. The first thing they had me do when I got in to the clinic for treatment was start taking methylated folate (which is easy to access, affordable and benign for the most part) and I started noticing a difference in inflammation and pain levels within 6-8 weeks.
There is also a published medical case study you’ll find if you Google and their website (also linked below) has a lot of resources as well.
Autistic (maybe also ADHD), queer NB-femme, and hypermobile person here (living with other complicating conditions)!
Want to affirm that physical therapy is incredibly helpful for hypermobility *when the provider knows what hypermobility is and how to treat it*. I've been to PT for decades for various issues (since elementary school; I'm in my early thirties now) but only diagnosed with HSD a few years ago (hypermobile spectrum disorder -- I didn't qualify for hEDS given the lack of internal organ issues). Let's just say providers who didn't know what they're were dealing with often made matters worse.
Two resources I'll recommend are FibroGuy's Zone Moving course (https://www.thefibroguy.com/product/zone-moving-course/) and the 24 week Hypermobility Course (https://www.thefibroguy.com/product/hypermobility-course/). He's hella informative and has a fantastic approach that works better for me than any other. Jeannie deBon is also a famous hEDS physical therapist who has a robust online community and resource library. I personally didn't benefit much from her videos (she doesn't explain the internal sensations well imho, so I end up trying to imitate her without actually knowing how it's supposed to feel from the inside), but many love her and the sheer number of folks on the platform is a great resource for gathering ideas / info.
It's free, has some of the best speech recognition out there, can be used to dictate & edit text, control your computer, and—with some configuration —control any application.
It runs on Windows, macOS, and Linux—unfortunately, not on phones—but it can be a bit tricky to get started. If you're interested and run into trouble, I’d be happy to take a moment to help you out.
Fellow neurodivergent/queer/trans/chronically ill human checking in who moved to Chicago a few years ago with a bunch of ‘mystery illnesses’ and list of old doctors in my previous state who called me a freak and said they didn’t know what to do with me (yay, love our medical system!)
I’ve spent the last few years devoting allllll of the time/energy/money to figuring out what was wrong with me and how to get well. It’s fucking exhausting and miserable and full of endless bullshit and burnout, but alas, the life I was given.
For the fun list of acronyms: I have Hypermobile Ehlers Danlos Syndrome, POTS/dysautonomia (https://www.today.com/health/essay/pots-syndrome-tv-reporter-rcna46907 was basically what happened to me one day out of the blue), Mast Cell Activation Syndrome (surprise, I am now allergic to anything my body wants…randomly?), Chronic Fatigue Syndrome/Central Pain Syndrome (why yes, I am tired and in pain) (and probably gastroparesis, yay). I've seen a LOT of doctors/specialists/therapists, had a lot of tests done, tried a lot of medications, and a lot of assistive tools/therapies. (and again, am very tiiiired).
My experience has been a lot of STRONGLY having to advocate for myself and play the game, having to come in with a 3 page printed List of everything I am/have/need/symptoms and be prepared to be sick but not too sick but also friendly and play along but not too well, and to basically have to ignore being nonbinary so that I can be chronically ill (it’s a binary…right?!) and hopefully get treatment (vs wanting to burn it all down because nobody, not even howard brown or center on halsted, respects anyone’s pronouns around here).
ANYWAY - Here’s some Chicago specific Medical Mystery Tour info:
(fuck FB, but I use it for Dr info/chronic illness groups - "Dysautonomia International - Illinois Support Group" & "Chicago EDS Support Group" for local info, and "Trans EDSers" is also great)
For this specifically general chronic illness starter pack (EDS/POTS/CFS/etc), there are two main places to start here - Dr. Octavia Kincaid at RUSH Neurology (takes insurance, probably months of wait time if she’s still taking patients, but is totally worth doing whatever you can to get an appointment) and Dr. Victoria Brander at her own office through Northwestern (doesn’t take insurance so a lot of money per appointment, but easier to get in quickly).
Brander is great if you know *exactly* what you want. I started with her and it was great because I brought in every piece of info and reports from other drs I had, lists of symptoms, etc, and she spent over an hour with me going through them and making a plan. I had a list of all of the (blood/other) tests I wanted her to run, the procedures I wanted her to order, the referrals I wanted her to make, and medications I wanted to try. She didn’t give me any push back and I got a lot done through her. You do have to wait a long time (bring something to do) and at that time her staff was so difficult to work with (be ready to follow up and advocate for actually logistically getting what she said she’d do). But her knowledge and expertise has been questioned by other ~experts~ in town (that she overdiagnoses and can order unnecessary things), so take it with a grain of salt also I guess (why is this so hard??)?
Kincaid will be really helpful and real with you, but would take an age to get an appointment. It was really really really worth it for me.
Hypermobility isn’t always EDS and EDS isn’t always the hypermobility type (others are spookier and more threatening, like vEDS) - there are different hypermobility spectrum disorders and connective tissue disorders. You can get a genetic test (I had Brander order it for me, but I believe you could also maybe self pay and/or get one of their doctors to order it?): https://www.invitae.com/us/providers/test-catalog/test-434340 (but there isn't a genetic marker specifically for hEDS yet, hopefully soon!)
For PT in the city, I’ve seen a ton and most fucking suck. Here are the good ones:
Dr. Melissa (https://www.chimera-health.com/ ) - doesn’t take insurance but does come to your home - a fucking life saver after I had top surgery, that one. Is polyamorous competent & more queer/trans competent than most providers, but doesn’t hit it 100% of the time. She’s got all the acronyms as well and has lived the similar unwell life so is really helpful there.
Lauren Goldammer (https://www.chicagophysicaltherapists.com/our-team/lauren-goldammer ) does take insurance and is virtual only (which actually rules for 2x week longer term PT) and is really EDS/etc educated. Was queer/trans/polyamorous competent for the level which it came up, but it came up less than with Melissa. I believe she might be going on maternity soon, if she hasn’t already though.
As a curveball rec, I did see this PT a few times specifically for help with some shibari/kink hypermobility stuff, as he contributed to a guide, and he was good there. Doesn’t take insurance. He mainly works with rock climbers, so should know some hand stuff, and I’d definitely rec him over a random roll of the dice PT Bro https://www.leeptchicago.com/
The other main recs I had a great time with were Dr. Dickerson at Northshore (he’s Kincaid’s BFF) as a Pain Specialist, Dr. Chawla at RUSH as a Sleep Specialist (holy shit everyone get a sleep study it’s life changing to get better sleep), and Joanne Davis through RUSH if you ever need a hilarious podiatrist. Chicago Hearing Specialists were nice for audiology. If you need a Rheumatologist, I saw Barbara Drevlow at Northshore once who was kind but said my other doctors already overlapped with what she would do, but I would see her again for sure if needed.
Unfortunately, I saw the Midwest Orthopedics at RUSH for a hand specialist (I have awful constant hand pain) and they fucking sucked and were really rude, so no rec there. If down the line you need to get silver ring splints (would recommend if you’ve maxed your insurance and they cover the DME), Meghan H. at the Athletico in Evanston fitted mine and had actually done it before and was helpful (unlike the person at Midwest Orthopedics who went ‘idk how to do this, whatever, i’m not going to tell you they’ll be $500 and non-returnable, hehe).
For MCAS, I haven’t found a great Allergist (Billimoria and Chou are the two most recommended and I’ve seen them both and not had the best time personally....but getting on chromolyn sodium was a game changer so it was worth someone being awful to me ultimately, sigh). A GI doc and Cardiologist are also ones I don’t have a great rec for but recommend seeing as a part of the medical mystery tour.
If you’ve maxed your insurance, and if the Neurologic Wellness Institute is accepted, and you feel like it meshes with the symptoms you want to go for at the time, it could be an option. It’s hit or miss and more fringe and takes a lot of time (and $$ if outside of insurance), but has been helpful to a lot of people and they’re all quite kind. I went covered through insurance (and would do that again) but wouldn’t personally have paid out of pocket for it.
Okay geez this is a big ol infodump, I'm gonna stop here. I hope something in here is helpful to you!! If you have any specific questions I’m happy to help however I can!!
So incredibly sorry you're going through this, how truly exhaustingly painfully awful. I really hope you’re able to get answers and support and relief and a good care team built up.
wow! thank you for letting me and the people reading this comment section get to dine on the fruit of your labors. you have clearly been through the fucking ringer, and done a ton of work to advocate for yourself and find whatever resources are available. I have no idea what extent of care I will need yet at this point, but it is great to have all of this for the Rolodex. thank you so much sincerely.
Totally! It was definitely exhausting and weird and lonely trudging out into it on my own, so I'm always down to share resources and info :)
Sending luck, resilience, commiseration, and an endless shared refrain of "I am gonna make it through this year if it kills me" (my way of dealing with the chaos).
I thought of some other non-doctor things that could be more tangibly helpful for you rn too:
And in general - doing an audit of what I do during the day that fucks with my hand, (and being really real with myself, like what am I actively doing that hurts me and makes things worse - bc even though i'm in constant pain, I can actually decrease it with some thought and changing of behaviors).
(I also have poor proprioception, and am in constant pain, so I tend to overgrip or undergrip everything with my hands, and that is ultimately something that causes me more strain/pain, so something I beg myself on the daily to be more aware of it and try to adjust behaviors (but is a constant brain fog/fatigue/disassociation/executive function battle))
Like for me, using my phone and opening shit are spots where I regularly am in pain (/cause more pain to myself).
So I got these to help me open things easier/sustainably to not hurt myself
And I got phone grips and stands and things to encourage me not to hold my phone. And try to respond to larger messages on my computer or via voice memos, and read books on my phone up using this instead of holding and tapping
this is SO helpful. i definitely overgrip things like a motherfucker. also whenever it is cold out i randomly lose the ability to turn keys? so grateful for this resource drop.
Another Chicago queer here has the EDS/POTS/MCAS/etc roundup! Sachiko, thank you for posting this! I’ve been trying to find someone local (and not out in Naperville!) for silver ring splint measurements, and haven’t been able to track down a trusted referral for like 3 years! So you’re my hero!
Also, I second Melissa Koehl for PT! I’ve worked with her for the past few years, and she took me from wearing a neck brace and panicking about CCI spinal surgery to being able to a much more stable and managed place! And she’s fun and likes sci-fi and animals, and also really helped my trans husband out when he also had some issues pop up!
It feels so stereotypically AuDHD/EDS to say this - but the thing that has helped me the most with not destroying my little Trex hands and wrists while I sleep is hugging a squishmallow. I don’t know what it is about the specific texture of those things, but they really do work when more expensive pillows have failed.
Wow, reading your excellent comment made me wonder if we’re cousins. But probably not, it’s just that we share a phenotype that is unrecognized and Unacknowledged. I second all your advice to Devon.
Hi! I’m a junior in college and have loved your writing for a long time. Two weeks ago a doctor repeatedly stabbed a nerve in my left hand while trying to find a vein which has rendered it a bit unusable. I don’t have anything helpful to say, but I just wanted to share that the same thing (weird left hand injury) happened to me at the same time, so I guess we are going through this together! Maybe there is some comfort in that.
I relate so hard to this. Also Autistic and currently working through diagnosis of an autoimmune disorder (for me it’s high RNP antibodies). Thumb and hand pain are some of the worst symptoms. I found the voice to text writing style compelling and just as readable as your other work, perhaps more so. I second Dragon dictation. Get to know your phone’s shortcut features and voice “assistant.” And rest that hand!
Speaking as someone with autism and EDS who's wound up needing way too many joint surgeries, if you've hit your OOP max for the year, there are two things you should do:
1. See an EDS specialist and go over all of your joints with them, including a detailed discussion about what sorts of exercise and activities you like to do (lifting, etc.). They can give you a formal diagnosis if you don't have one already, and can help with the second thing, which is....
2. Physical therapy. There's proactive physical therapy you can do for EDS to strengthen the stabilizing muscles around the joints that can help mitigate-- not prevent, but mitigate at least-- the stretching of the ligaments and tendons. It can make a huge difference and lessen the likelihood of things like this (potential distress or tear/rupture to the ligaments or tendons) happening in the future.
Going to second physical therapy! I had a fantastic physical therapist that got me back to my previous activity levels 6 months after an invasive orthopedic surgery. Because I also was an established patient, it made it a lot easier to get on her books for other injuries that I experienced post-op.
This is hugely helpful and I had no idea that these were even options for me. I don't officially have EDS, or if I do it's a less common subtype because I don't meet a lot of the traditional symptoms, but even knowing that this is an option is really helpful. Thank you
We don't need a diagnosis to get the therapy. We just wrote up the prescription for hypermobility and got it.
I lost the use of both of my hands 2 years ago after a minor injury and needed OT for my hands and PT for my elbows, shoulders, hips, knees, feet.. the whole things.
It's a whole skill to learn. One of the things we do is instead of activate the muscles for movement is pivot on our joints to lift weight, which ends damaging. And once we start to activate our muscles they..twitch and shake a lot more than what others are experiencing, my brain simply doesn't know where my body is in space due to the different in the connective tissue/nerve connections. But I'm getting stronger and healing up. Worth it.
the EDS society website has a checklist for hEDS you can fill out and/or print if you want! also going to third physical therapy. i have a copy of kevin muldowney's "living life to the fullest with ehlers-danlos syndrome" that i bring with me to PT and we mostly go off of that. (you can find it on libgen but you didn't hear that from me) if you end up not having EDS then doing the exercises won't hurt or do anything negative, but if you do then it's a good way to start being proactive about strengthening yourself.
Hmmm, I don't seem to meet any of the criteria for heds other than the hypermobility, as far as I can tell. But I know there's many different types of EDS. I will keep looking into it, thank you!
Another +1 for PT. Helped my knees so very much, and I actually need to get back into the habit.
Excellent ideas! I’d also recommend going to a dermatologist if you haven’t recently for a mole check.
Really great read! Interesting to me as a Brit living in California right now experiencing the American medical model first hand for the first time is really quite the culture shock. I have a late diagnosis of adhd and autism but my hypermobiltiy was never an issue until menopause and the drop in estrogen raged through my joints and my pain sensitivity went up. I was a wood carver until jsut 2 years ago and now I can't. I'm interested to see how this turns out for you long term, I hope you fund so good pain relief in the mean time . I find a lot of relief from high quality full spectrum cbd topicals for my hands and thumbs. I wish you so much good health, thanks for the continued great reads.
Yesss. And Pelvic physical therapy! Many things come back to our breath and circulatory systems.
This is not a punishment for all your writing. Your work has done so much for so many people, me included. It’s just a combination of overuse, possible T side effects, and autism-related hypermobility. Life happens. It just fucking happens.
The grief for your former abilities is the fucking worst. Feel your grief. Don’t shove it down. Let yourself be sad and furious and annoyed and allll that shit. There’s not much I can say except keep up the adaptations and see if you can find a 3D printer at the nearest library to print some open-source occupational therapy aids to make your ADLs easier/less painful. For writing, keep up the speech-to-text and use the inbuilt spell/grammar check as often as possible.
As for the insurance side of things, once you hit that OOP, work with the docs to prescribe over-the-counter stuff wrist braces, topical pain relief, etc. so it’s on the insurance company’s dime instead of coming directly out of your wallet. Check the website of your payor to find the medical necessity guidelines they use (if they use Interqual instead, hit me up) and your doc can write your clinical notes aligned with said guidelines, making denials much less likely.
All in all, I just wish you more low-pain days than high-pain ones. Surgery is likely the best option once there’s more imaging, but whatever happens, I hope you get some pain relief and recovery. 🫶🏽🫶🏽🫶🏽🫶🏽🫶🏽
Thank you so much for all of this Blessing. There is so much about navigating the healthcare system that remains inscrutable to me, of course that's by design, and so many things that I didn't even know I could ask for. Thanks for letting me know about some of these options.
been following your hand saga and you've been in my thoughts. a hand injury is so scary and i'm wishing you a speedy recovery, stabilization, adjustment, or whatever other positive development the future holds. thank you for being so transparent and vulnerable with your emotional experiences and your interactions with the medical system. take care of yourself!!
This was a compelling read thank you for sharing this story. Health wise we share some things in common. I'm a 36yo auDHD trans guy who was diagnosed with EDS in 2022. I've been chronically ill all my life but it wasn't until I got too sick to work or take care of my basic needs that I started persuing diagnosis, health management solutions etc. fiercely. I'll try and briefly share some wisdom I've picked up specifically about these "suprise" injuries. Reading about this cluster of chronic illnesses has become a special interest for me especially in the last few years.
Because the overlapping spectrums of so many chronic illnesses (perhaps especially hypermobility disorders) are underresearched and considered "rare" by most I have found even with the absolute best intentions medical professionals really struggle to provide us with the support we need or even be honest and say "I can't help". I recently wrote here about my personal experience over seven plus years seeking medical help purely for joint injuries, learning to nothing but dead ends. Medicine just isn't prepared for us yet, they barely know we exist and the common belief is simply "eds is uncurable" which is far from the whole truth.
in late 2021 I had a similar experience with a thumb injury that just exploded out of thin air. I didn't get access to diagnostic scans, it was so interesting/validating to see what's going on inside your thumb while the injury is still active. I hope this won't be the case for you too but after I had this one injury I then became more vulnerable to other suprise injuries. It's thought that there is a neurological component to our vulnerability to injury because of how how our muscles tense to hold our joints together in place of crap ligaments and it's also thought that may cases of long COVID are actually PoTS that has been triggered into life by COVID. One compelling theory is that this affects people who have other stuff in common (like neurodivergence, gender stuff, hypermobility, GI stuff, etc.) because we share genes that are expressed only if triggered by a trauma like illness.
I've also asked of myself many times "did I make myself disabled by transitioning". As it happens, I started HRT a few months before the thumb episode. I did ask my gender clinic and, weirdly affirmingly at the time, they thought it was laughable that I would even consider there might be a relationship between sex hormones and pain conditions / connective tissue disorders. Now I know that there is thought to be links between a type of progesterone and many of our symptoms including fatigue (look up RCCX theory if you want to read about this). This theory isn't even at the point of medical study but it rings true to me and many others who find they are consistently "sicker" in a lot of ways during and around periods. That's a score for testosterone in to me - it stopped my periods and therefore effectively cured me of all the issues I had related to them. With the benefit of years to dwell on this I've come to the conclsion that it doesnt matter whether HRT helped me along the way to getting sicker or not because it's necessary. Maybe it made me "worse". Maybe it's actually helped. Maybe it's both or neither but for me HRT is a non negotiable, it's not a choice that's on the table because I've always been disabled and was always going to be regardless but if I was given the choice between transitioning and being able bodied I would transition every time.
I have never been excited about surgery, especially since it's thought to be less successful in hypermobile folks and carries extra risks too. Obviously if the tendon is torn it might be unavoidable but perhaps you might want to have an opinion of an additional surgeon or ask how they might approach it given you likely have a connective tissue disorder. I recall reading a study that talked about using a type of membrane to strengthen hypermobile tissue surgery for example and they might be able to take precautions to minimise the amount of scar tissue they create
I found a lot of the physiotherapy I was given was not tailored to me at all and my enthusiasm to follow instructions has actually ended up getting me more injured in many occasions. I think this is sadly a typical experience. Perhaps you can find a hypermobility movement specialist in your area? Personally now I have the miserable knowledge that hospitals can't help me with my injuries I feel less panicked when I get hurt because I know caring for myself is in my hands.
This is a page from a UK charity giving advice about how to handle joint injuries for people with hypermobility disorders. I found it really useful to read this info, and get the people close to me to read it too, so that when shit happens there's already a plan. Knowing when it's okay to not go to A&E saves so much anxiety. https://www.ehlers-danlos.org/information/managing-dislocations-and-subluxations-in-hypermobile-ehlers-danlos-syndrome-and-hypermobility-spectrum-disorders/
I could say a lot more but this feels like a lot for a comment, I've tried to focus in just on what might be helpful in Devon's circumstances and anyone going through similar. I'm new to Substack and would love to hear from other people here are in there same spectrums so I can read what you're saying too across the whole rainbow of things we're affected by.
thank you so much for being so incredibly generous with your time and experience in writing this comment, Bobby. some of it is a bitter pill to swallow, having hoped that seeking out orthopedists and getting all my appointments in line as quickly as possible could have saved me, but it fits with my experience so far as well as the stories of so many other autoimmune condition sufferers that I know that what I actually have going on here is something that few professionals are equipped to treat. It is scary to look at what could lie ahead. so I am very grateful to hear from people who have walked through much a similar thing, and had to do so much to find their own answers. I'm sure I'll have many more questions and need a ton more advice in the weeks to come to be honest.
I hear you so loud, the feeling of wanting to "do something". What you wrote about moving and stressing the joint I think will be relatable to a lot of people, I hope this is a comforting thought - there's another universe where you saw a doctor before you stressed the joint and they told you to move and exercise it exactly the way you did. You might even have stuck at it longer trusting that you were doing it under medical advice. How unbearable is can be to "sit with it" when you want to fight.
Sorry about the bitter pills, I have a habit of being that guy especially in recent years, I get excited in an ND way about having pills of any kind that can help someone, I'm working out how to hand them out one at a time! It's funny when I read your response I thought you were echoing something I'd written because I sent that EDS UK link to a friend this week with the warning that it's a bitter pill that can take some time to digest on it's own. We're born with suffering sneakily baked into our genes but there's so much of our suffering that comes from medical mismanagement rather than from inside. I take a lot of pride from being able to snatch a little bit of that suffering away, seriously fuck emergency rooms.
You've got this. The fact that you're still finding ways to write and follow your purpose shows you've already got that fighting crip spirit in you.
Thanks, Bobby, for your post. For this autistic, at least, there is never too much information! I have not been officially diagnosed with hEDS or hypermobility, but I have it. Back in my 20s I had two favorite party tricks - bending all of my fingers over each other and popping out my hips. I stopped doing either years ago, but I can still do it for medical professionals. 😏 Your information is extremely helpful, not only to Devon but to all of us who are searching for answers.
Thanks Tracey that's so kind of you. It was very freeing for me to realise that having one of these differences made me more, not less likely to have or develop others too. I'm proudly disabled but I'm also grateful to have clawed back a surprising amount of ability over the years by, mostly just reading a lot and using myself as a test subject when the approach of the medical professionals who I'd previously have trusted to "work things out" for me has been towards illness acceptance rather than understanding. This autistic, to steal your phrase, finds it very difficult to accept things I can't get at least a believable explanation for!
I’m very lucky in that my sister, who is both autistic and even more hypermobile than me, has been very active in learning about connective tissue disorders. She’s made me aware of how hypermobility may affect other aspects of my health. The connectedness of these conditions, while frustrating IRL, is also fascinating!
Dear Bobby, I second everything you’ve said and I admire your thinking. These connections, the “all the things,” plus ND have been a special interest of mine also. I’m new to substack also. I do think there’s a book in this given how informative it is for us, how scattered the papers and people are, and the depth and breadth of abuse by physical and mental health practitioners as they struggle to ignore and blame us for both the physical physical and neurological physical. Best wishes
There's not nearly enough research being done but what there is is facinating and if I don't end up writing that book I would read it. Are you also a writer?
I'm not sure how relevant this is to you, (especially if you're in early stages where there's still a lot to discover) and I think there's a good chance you're already across it, but for me it was revelatory:
The only thing I've ever really found helpful with my chronic health issues (not much direct overlap, but we have significant loss of function in common) is trying to respect and surrender to the lack of control I have over my body.
Of course it's good to do what you can and keep up with appointments etc, but also I think it's really easy to become obsessive. I had periods where found myself winding myself tighter and tighter around my condition, spending all my time doing things I thought would help, taking supplements and special diets, researching and thinking about it, denying myself real mental rest and the capacity to do other things. I think it also reflected/reinforced a fundamental sense of self blame and the weird idea that I am or could be completely in control of myself, my body, and everything that happens to me (this idea is the antithesis of wisdom imo, even though for some reason our culture has decided it's the most virtuous way to think)?
Now that I'm trying to only do the things that I've found to make a big, undeniable difference and otherwise let things be how they are, I feel like I have a life again. Even if it is different from the abled standard I was chasing, at least it's real. Plus, my health now is about the same as it was when I was doing Everything. Go figure!
you know, I was just laying in the MRI machine a few moments ago when I was reminded of a tattoo a friend got during an especially turbulent period in her life that ultimately required making sacrifices: "Surrender." i am the type to push myself too hard and to attempt to control everything, so your comments are needed.
This is excellent advice and is similar to where I’ve ended up, but I’m not doing as well as you. I appreciate you saying this! It’s logical, and I’m not much worse, and what a relief to stop thinking there’s help out there--this med, that procedure, blah blah blah. Each appointment was so stressful, and then there weren’t effective treatments, if any, for the diagnoses anyway. Living with it all is not much of a life, but it is more peaceful to accept it. Though I really need pain treatment, and would accept palliative care at this point. I have pots, hEDS, so many of the other “rarely diagnosed” but not really rare things among us. I was told for decades that the symptoms (even interstitial cystitis, dislocations and eosinophilic diseases) were not only in my head, but that I was actively choosing them:). They really cultivated some nasty stuff, and I would have been much better off avoiding their toxicity but it was all the “help” that was ever offered. Acceptance, and a small, flat life (pots), is the best I can do now. Thankfully I don’t currently have an issue like Devon is dealing with, that requires active medical help.
No medical advice from me -- nothing useful like that -- only a lot of parasocial love along with my paid subscription. Your writing and videos have been so important to me as a late-diagnosed Autistic person. I'm very glad to support your work. I'm sending good wishes to you and every one who cares for you, medical or otherwise.
thank you so much for your kindness.
I'm sorry you had to go through this, Devon, not just the physical pain, but all the medical red tape shenanigans. :( And I thought the Canadian wait times were horrendous...
Right now, I'm seeing a physiotherapist for a shoulder injury that I've had for a few years. Well it's been some months of physio and it still doesn't seem any better. It's a good excuse to barely cook and just rely on takeout. :/
For speech-to-text, I recommend the Dragon software from the company Nuance. I'm always on mobile rather than on my computer, so I use their mobile app Dragon Anywhere. It's probably one of the most advanced speech-to-text software out there. A friend who has a permanent typing injury recommended this. He remarks that speaking is also a lot faster than hand typing, which is true.
This is unrelated, but lately, my dad recommended a book to me that I find really uplifting, and that you might enjoy as well. (Assuming you haven't already read it!) It's "The Deficit Myth" by Stephanie Kelton. Kelton is a Professor of Economics, and a former Chief Economist on the U.S. Senate Budget Committee, Democratic staff. I'm not someone who normally reads books on economics, but I'm enthralled by this one.
The book challenges so many beliefs about the economy, taxes, government, etc. The central message is that the federal government absolutely has the ability to lift people out of poverty, homelessness, and unemployment. Yes, I know not everyone agrees with this (the approach is called Modern Monetary Theory). But wow, I find it so inspiring that this could be a possibility. Or we can at least aspire to it.
I especially loved the idea of guaranteed jobs, so that nobody who wishes to work, needs to be unemployed anymore. My dad thinks it's too utopian and costs too many resources to be possible. But hey, our Ontario government funds some employment agencies here, so that jobless people can get help from career coaches for free, which benefited me at the time. So we could at least move towards that.
Looking for a job can be such a shit show. So it's satisfying to imagine a future where everyone gets help in finding a job (if they wish to work). Rather than just being expected to land a job through endless trial and error... :( This wouldn't be for just any job, but they would match you with your skills and preferences. But yeah maybe that does sound utopian. Still really nice to think about. And sometimes dreams do come true!
Anyway, I thought you might love this book too. In these bleak times, it's so wonderful to read something that gives us a ray of hope. It's written by an actual economist who has insider experience with the U.S. government too. So it's backed up with evidence, not just wishful longing. It makes me think that this kind of thing, might actually be real one day.
Sounds like a great read -- definitely in line with a lot of UBI-type programs potentially. Thanks for the rec. I'm just now reading the book Technofeudalism, and finished a biography of Marx before that, so I'm in an econ kick already!
Hope you like it! Ooh, I'll check out Technofeudalism. Yeah I never realized that econ books could give us more hope too. :)
Highly recommend Dragon for dictation. The one-time-payment version is prohibitively expensive, but there's a subscription app with almost as many features. The main reason I prefer it to other options is that you dictate the punctuation yourself instead of relying on the app to insert it correctly. It means there's a higher learning curve, but (at least for me, who cannot compose prose in the cadence of conversational speech) a lot less frustration in the long term. I have not yet found an alternative that provides this option. (Google claims to, but it doesn't work for anything but the most basic punctuation. I write fiction, so not being able to use quotation marks is a dealbreaker for me. Your mileage may vary.)
I cannot recommend the Dragon enough! I'm on mobile all the time, so I use Dragon Anywhere. Yeah being able to dictate punctuation and even spacing/ paragraphing, is amazing!
I had to have orthopedic surgery a while ago and it was a big flash point in my life. Beforehand, I treated my body like molten plastic that I crushed into shape. Now, I have to stretch regularly or my body will break and I'lll spend months picking up the pieces. For context, I'm in my mid-20s and while it is frustrating to be hyperaware of my body's need for stretching, I'm glad that the care I show my body now will lead to a less painful future. I hope the rest of your medical journey has far less road bumps!
Just want to say thank you to Devon and everyone in the comments being so generous with time and resources. Autistic with newly diagnosed hEDS after years of doctors scratching their heads at me. So much for me to research here.
Here in New Orleans we have a dedicated clinic that came out of a research clinic at Tulane. I’m sure some folks have heard of it. They are doing some really interesting research around hEDS, hyper mobility, and folate deficiencies. Linking the article. The first thing they had me do when I got in to the clinic for treatment was start taking methylated folate (which is easy to access, affordable and benign for the most part) and I started noticing a difference in inflammation and pain levels within 6-8 weeks.
There is also a published medical case study you’ll find if you Google and their website (also linked below) has a lot of resources as well.
https://news.tulane.edu/pr/could-vitamin-deficiency-cause-double-jointedness-and-troubling-connective-tissue-disorder
https://hypermobilityclinic.org/
Autistic (maybe also ADHD), queer NB-femme, and hypermobile person here (living with other complicating conditions)!
Want to affirm that physical therapy is incredibly helpful for hypermobility *when the provider knows what hypermobility is and how to treat it*. I've been to PT for decades for various issues (since elementary school; I'm in my early thirties now) but only diagnosed with HSD a few years ago (hypermobile spectrum disorder -- I didn't qualify for hEDS given the lack of internal organ issues). Let's just say providers who didn't know what they're were dealing with often made matters worse.
Two resources I'll recommend are FibroGuy's Zone Moving course (https://www.thefibroguy.com/product/zone-moving-course/) and the 24 week Hypermobility Course (https://www.thefibroguy.com/product/hypermobility-course/). He's hella informative and has a fantastic approach that works better for me than any other. Jeannie deBon is also a famous hEDS physical therapist who has a robust online community and resource library. I personally didn't benefit much from her videos (she doesn't explain the internal sensations well imho, so I end up trying to imitate her without actually knowing how it's supposed to feel from the inside), but many love her and the sheer number of folks on the platform is a great resource for gathering ideas / info.
Relatedly, in case this helps: a pretty comprehensive presentation on the trifecta (hEDS, MCAS, POTS -- commonly seen together) can be found at https://www.ehlers-danlos.com/wp-content/uploads/2022/12/2018-EDS-Webinar-Chopra.pdf
Hope this helps! Blessings to you on your journey.
I've had a hand injury for the past four years and I use Talon Voice to control my computer:
https://talonvoice.com/
It's free, has some of the best speech recognition out there, can be used to dictate & edit text, control your computer, and—with some configuration —control any application.
It runs on Windows, macOS, and Linux—unfortunately, not on phones—but it can be a bit tricky to get started. If you're interested and run into trouble, I’d be happy to take a moment to help you out.
Allo!
Fellow neurodivergent/queer/trans/chronically ill human checking in who moved to Chicago a few years ago with a bunch of ‘mystery illnesses’ and list of old doctors in my previous state who called me a freak and said they didn’t know what to do with me (yay, love our medical system!)
I’ve spent the last few years devoting allllll of the time/energy/money to figuring out what was wrong with me and how to get well. It’s fucking exhausting and miserable and full of endless bullshit and burnout, but alas, the life I was given.
For the fun list of acronyms: I have Hypermobile Ehlers Danlos Syndrome, POTS/dysautonomia (https://www.today.com/health/essay/pots-syndrome-tv-reporter-rcna46907 was basically what happened to me one day out of the blue), Mast Cell Activation Syndrome (surprise, I am now allergic to anything my body wants…randomly?), Chronic Fatigue Syndrome/Central Pain Syndrome (why yes, I am tired and in pain) (and probably gastroparesis, yay). I've seen a LOT of doctors/specialists/therapists, had a lot of tests done, tried a lot of medications, and a lot of assistive tools/therapies. (and again, am very tiiiired).
My experience has been a lot of STRONGLY having to advocate for myself and play the game, having to come in with a 3 page printed List of everything I am/have/need/symptoms and be prepared to be sick but not too sick but also friendly and play along but not too well, and to basically have to ignore being nonbinary so that I can be chronically ill (it’s a binary…right?!) and hopefully get treatment (vs wanting to burn it all down because nobody, not even howard brown or center on halsted, respects anyone’s pronouns around here).
ANYWAY - Here’s some Chicago specific Medical Mystery Tour info:
(fuck FB, but I use it for Dr info/chronic illness groups - "Dysautonomia International - Illinois Support Group" & "Chicago EDS Support Group" for local info, and "Trans EDSers" is also great)
For this specifically general chronic illness starter pack (EDS/POTS/CFS/etc), there are two main places to start here - Dr. Octavia Kincaid at RUSH Neurology (takes insurance, probably months of wait time if she’s still taking patients, but is totally worth doing whatever you can to get an appointment) and Dr. Victoria Brander at her own office through Northwestern (doesn’t take insurance so a lot of money per appointment, but easier to get in quickly).
Brander is great if you know *exactly* what you want. I started with her and it was great because I brought in every piece of info and reports from other drs I had, lists of symptoms, etc, and she spent over an hour with me going through them and making a plan. I had a list of all of the (blood/other) tests I wanted her to run, the procedures I wanted her to order, the referrals I wanted her to make, and medications I wanted to try. She didn’t give me any push back and I got a lot done through her. You do have to wait a long time (bring something to do) and at that time her staff was so difficult to work with (be ready to follow up and advocate for actually logistically getting what she said she’d do). But her knowledge and expertise has been questioned by other ~experts~ in town (that she overdiagnoses and can order unnecessary things), so take it with a grain of salt also I guess (why is this so hard??)?
Kincaid will be really helpful and real with you, but would take an age to get an appointment. It was really really really worth it for me.
Hypermobility isn’t always EDS and EDS isn’t always the hypermobility type (others are spookier and more threatening, like vEDS) - there are different hypermobility spectrum disorders and connective tissue disorders. You can get a genetic test (I had Brander order it for me, but I believe you could also maybe self pay and/or get one of their doctors to order it?): https://www.invitae.com/us/providers/test-catalog/test-434340 (but there isn't a genetic marker specifically for hEDS yet, hopefully soon!)
For PT in the city, I’ve seen a ton and most fucking suck. Here are the good ones:
Dr. Melissa (https://www.chimera-health.com/ ) - doesn’t take insurance but does come to your home - a fucking life saver after I had top surgery, that one. Is polyamorous competent & more queer/trans competent than most providers, but doesn’t hit it 100% of the time. She’s got all the acronyms as well and has lived the similar unwell life so is really helpful there.
Lauren Goldammer (https://www.chicagophysicaltherapists.com/our-team/lauren-goldammer ) does take insurance and is virtual only (which actually rules for 2x week longer term PT) and is really EDS/etc educated. Was queer/trans/polyamorous competent for the level which it came up, but it came up less than with Melissa. I believe she might be going on maternity soon, if she hasn’t already though.
As a curveball rec, I did see this PT a few times specifically for help with some shibari/kink hypermobility stuff, as he contributed to a guide, and he was good there. Doesn’t take insurance. He mainly works with rock climbers, so should know some hand stuff, and I’d definitely rec him over a random roll of the dice PT Bro https://www.leeptchicago.com/
The other main recs I had a great time with were Dr. Dickerson at Northshore (he’s Kincaid’s BFF) as a Pain Specialist, Dr. Chawla at RUSH as a Sleep Specialist (holy shit everyone get a sleep study it’s life changing to get better sleep), and Joanne Davis through RUSH if you ever need a hilarious podiatrist. Chicago Hearing Specialists were nice for audiology. If you need a Rheumatologist, I saw Barbara Drevlow at Northshore once who was kind but said my other doctors already overlapped with what she would do, but I would see her again for sure if needed.
Unfortunately, I saw the Midwest Orthopedics at RUSH for a hand specialist (I have awful constant hand pain) and they fucking sucked and were really rude, so no rec there. If down the line you need to get silver ring splints (would recommend if you’ve maxed your insurance and they cover the DME), Meghan H. at the Athletico in Evanston fitted mine and had actually done it before and was helpful (unlike the person at Midwest Orthopedics who went ‘idk how to do this, whatever, i’m not going to tell you they’ll be $500 and non-returnable, hehe).
For MCAS, I haven’t found a great Allergist (Billimoria and Chou are the two most recommended and I’ve seen them both and not had the best time personally....but getting on chromolyn sodium was a game changer so it was worth someone being awful to me ultimately, sigh). A GI doc and Cardiologist are also ones I don’t have a great rec for but recommend seeing as a part of the medical mystery tour.
If you’ve maxed your insurance, and if the Neurologic Wellness Institute is accepted, and you feel like it meshes with the symptoms you want to go for at the time, it could be an option. It’s hit or miss and more fringe and takes a lot of time (and $$ if outside of insurance), but has been helpful to a lot of people and they’re all quite kind. I went covered through insurance (and would do that again) but wouldn’t personally have paid out of pocket for it.
Okay geez this is a big ol infodump, I'm gonna stop here. I hope something in here is helpful to you!! If you have any specific questions I’m happy to help however I can!!
So incredibly sorry you're going through this, how truly exhaustingly painfully awful. I really hope you’re able to get answers and support and relief and a good care team built up.
wow! thank you for letting me and the people reading this comment section get to dine on the fruit of your labors. you have clearly been through the fucking ringer, and done a ton of work to advocate for yourself and find whatever resources are available. I have no idea what extent of care I will need yet at this point, but it is great to have all of this for the Rolodex. thank you so much sincerely.
Totally! It was definitely exhausting and weird and lonely trudging out into it on my own, so I'm always down to share resources and info :)
Sending luck, resilience, commiseration, and an endless shared refrain of "I am gonna make it through this year if it kills me" (my way of dealing with the chaos).
I thought of some other non-doctor things that could be more tangibly helpful for you rn too:
This IG is an amazing hand resource: https://www.instagram.com/hand_coach_corinne/?hl=en
&& wanted to also share some ~product links~
what's worked best for my hand pain management (warmth mostly (though I crave the cold)):
https://www.amazon.com/gp/product/B086QPQ2FZ/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&th=1
https://www.amazon.com/gp/product/B0CLWVCTBG/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&th=1
https://www.amazon.com/gp/product/B0BCJWKG36/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&th=1
https://www.amazon.com/gp/product/B07RYNTVNF/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
here's what's recommended for braces for thumbs:
https://www.amazon.com/gp/product/B07CDCJF3R/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
https://www.amazon.com/gp/product/B00GTXCMCG/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&th=1
And in general - doing an audit of what I do during the day that fucks with my hand, (and being really real with myself, like what am I actively doing that hurts me and makes things worse - bc even though i'm in constant pain, I can actually decrease it with some thought and changing of behaviors).
(I also have poor proprioception, and am in constant pain, so I tend to overgrip or undergrip everything with my hands, and that is ultimately something that causes me more strain/pain, so something I beg myself on the daily to be more aware of it and try to adjust behaviors (but is a constant brain fog/fatigue/disassociation/executive function battle))
Like for me, using my phone and opening shit are spots where I regularly am in pain (/cause more pain to myself).
So I got these to help me open things easier/sustainably to not hurt myself
https://www.amazon.com/gp/product/B089NQK2CJ/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&th=1
https://www.amazon.com/gp/product/B000HMC5JA/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&th=1
And I got phone grips and stands and things to encourage me not to hold my phone. And try to respond to larger messages on my computer or via voice memos, and read books on my phone up using this instead of holding and tapping
https://www.amazon.com/gp/product/B09Q98RS92/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&th=1
Sorry bout that massive Amazon drop, but I hope it at least gives some ideas for things that could be good for recovery & support for you/anyone!
this is SO helpful. i definitely overgrip things like a motherfucker. also whenever it is cold out i randomly lose the ability to turn keys? so grateful for this resource drop.
Another Chicago queer here has the EDS/POTS/MCAS/etc roundup! Sachiko, thank you for posting this! I’ve been trying to find someone local (and not out in Naperville!) for silver ring splint measurements, and haven’t been able to track down a trusted referral for like 3 years! So you’re my hero!
Also, I second Melissa Koehl for PT! I’ve worked with her for the past few years, and she took me from wearing a neck brace and panicking about CCI spinal surgery to being able to a much more stable and managed place! And she’s fun and likes sci-fi and animals, and also really helped my trans husband out when he also had some issues pop up!
It feels so stereotypically AuDHD/EDS to say this - but the thing that has helped me the most with not destroying my little Trex hands and wrists while I sleep is hugging a squishmallow. I don’t know what it is about the specific texture of those things, but they really do work when more expensive pillows have failed.
Wow, reading your excellent comment made me wonder if we’re cousins. But probably not, it’s just that we share a phenotype that is unrecognized and Unacknowledged. I second all your advice to Devon.
Hi! I’m a junior in college and have loved your writing for a long time. Two weeks ago a doctor repeatedly stabbed a nerve in my left hand while trying to find a vein which has rendered it a bit unusable. I don’t have anything helpful to say, but I just wanted to share that the same thing (weird left hand injury) happened to me at the same time, so I guess we are going through this together! Maybe there is some comfort in that.
Wow that is awful! I hope you get some sweet malpractice money from a medical screw-up like that, sounds awful!
I just want to say how thankful I am every single day for your words. As a social worker, therapist, neurodivergent, queer person - thank you so much.
^^^
I relate so hard to this. Also Autistic and currently working through diagnosis of an autoimmune disorder (for me it’s high RNP antibodies). Thumb and hand pain are some of the worst symptoms. I found the voice to text writing style compelling and just as readable as your other work, perhaps more so. I second Dragon dictation. Get to know your phone’s shortcut features and voice “assistant.” And rest that hand!