just thinking about that time i had a neuropsychological evaluation where i was like “yeah my body hurts all the time and i’m always so tired, i think there’s something wrong with me” and in my results the examiner was like “patient ascribes, often inaccurately, attributes/manifestations of mental distress to physical ailments, refusing to acknowledge their psychological origins” basically saying that i was blaming my symptoms of depression on some made-up, ambiguous physical illness or disorder and that when i said that something was wrong with me, physically, i was basically “in denial” that i was mentally ill (despite the fact that i was 100% certain and up-front that i was) and that i was merely describing anxiety and depression. and then i got diagnosed with GERD a few months later (hence feeling sick all the time) and fibromyalgia a year later lol. anyway im a cane user now. ✌️ why don’t you tell me again how my symptoms are just mental illness <3

water hours are 24/7

hi! ive been following/lurking for about a year now i think and i hope u dont mind, but im coming for some health advice regarding my younger sister 🥺

she's had problems with her joints, particularly her knees and hips since she was 8 (shes almost 19 now) and 5 years ago our doc suggested she might have inflammatory arthritis but nothing was really done about that. in recent months these joints have been giving her more grief and now her wrists are becoming a problem. she describes it as an achy, stabby sort of pain.

lately, EDS has been thrown around but we arent entirely sure since she doesnt seem to have all the symptoms google describes, but her joints seem too severe for inflammatory arthritis.

i was just wondering (and if it wasnt too presumptuous or rude in asking) if youd be able to offer some insight to your diagnosis? i know you had a rough trot in finally getting yours, and i was hoping that if this doesnt sound like EDS to you, that you might have an idea of what it could be? we're all sort of floundering here and we dont really know what to do or who to see.

So, for what it’s worth, according to most of the doctors I’ve met over the years, my joint problems don’t sound like EDS, but arthritis instead. But the arthritis testing always came up with zilch, and they’d tell me it was “regional pain disorder”/anxiety. It wasn’t until I saw an actual EDS specialist this year in 2020 (for what I thought was an entirely separate reason but guess not) that she realized I have Hypermobile Ehler’s Danlos Syndrome and that the inflammation that was happening was due to my joints being constantly damaged. 

I am not hyper-flexible, which most people think of when they think of EDS, nor am I double-jointed, which are the more commonly described symptoms on Google. My muscles are instead actually extremely stiff and are constantly forming painful adhesions, which we have since learned is because I am hypermobile and my muscles are splinting (occasionally referred to as protective muscle spasms) my joints to help keep them in place. 

And the thing with EDS is you don’t need to have all the symptoms; you just need to have enough on the scoring chart, which you and your sister can look at here: https://www.ehlers-danlos.com/heds-diagnostic-checklist/ 

There’s a good video on the EDS society page that shows how they rate joint mobility: https://www.ehlers-danlos.com/assessing-joint-hypermobility/

There’s also the possibility that what she has isn’t full-blown EDS, but hypermobile joint disorder, which can also cause pain similar to arthritis, while not having the full range of EDS symptoms like pale or thin skin, or slow healing times/other complications like dysautonomia, etc etc.

And if you are interested in trying to pursue an EDS diagnosis with her, or even just ruling it out? The EDS society has a global list of health care professionals qualified to diagnose and treat the disorder:

https://www.ehlers-danlos.com/healthcare-professionals-directory/

It is not an easy diagnosis to pursue, but if doctors are mentioning it, then I would think it worthwhile chasing down if only to rule out. There can be complications with EDS that are good to know about prior to things like surgery (like needing different anesthesia, pain management, and needing sutures to be left in longer) or even physical therapy. Magic Physio Man was horrified when he realized the things he was getting me to do on a weekly basis were causing me more damage because he didn’t know my ability to move in certain ways was harmful to me in the long term. From the outside, it just looks like I’m really good at doing certain stretches and yoga poses, but as it would turn out, I’m subluxating my joints to do them which is not good! So yea, sorry for the wall of text, but I was denied adequate medical care for decades because every time I brought up EDS to doctors I was shot down and told things like I was neither tall, pale*, thin nor bendy enough to have something like EDS, which a properly trained EDS specialist will be able to tell you is simply not true.

I hope some of this helps. And I hope your sister gets help with her problems too. It’s tough living with a chronic condition and never having any answers.

*And if you think “paleness” being a “basic” part of the criteria for EDS diagnosis disproportionally harms and prevents Black people and POC from getting an accurate EDS diagnosis, you’d be right! 

A spectacular bonsai tree from the lightscape I went to last week.

I'm so tired. Why am I still awake. I just finished Patreon rewards and have a stack of things to send out. But like. So tired. I drove 100 miles today. Somehow. My sister drove the last 70.

My EDS doctor is 4 hours away, but so worth seeing. He's filling out all my insurance accommodation paperwork and he signed off on the petition to get me a power chair through insurance. I'm wondering if I should call off tomorrow. For at least a half day. I could use the rest, but idk if it'll be covered under FMLA. But I haven't missed a day in a while so...

I got an informal POTS diagnosis, so there's that. I need to add more salt to my diet and be mindful of how I move. We're gonna try a new medication to see if we can help my sleep without ambien. Just another diagnosis to add to the layers.

At least for now there's nothing wrong with my heart. He did say the tilt table test results were poorly written and basically garbage. I'm just gonna avoid that hospital from now on, except my transplant stuff. 🙄

I hate it when doctors say they're experienced in rare conditions and they're not or they do sloppy work.

I think... I'm trying to do too much and it's causing me to feel super burned out. Sigh.

My sister pointed out that I've been snoring really loud lately. The soonest sleep doctor appointment I got was end of January. 🤷🏽‍♀️ My EDS doc said to not let the sleep doctors brush everything off as "you're fat" and to be sure they understand dysautonomia.

I also got a bill for $1700 for the MRI I had on my elbow in august because my insurance company claims the place is out of network. Idk about yall, but I don't have that kind of money lying around. Or available in two or three months of working part time while also trying to just live. So. Idk what I'm gonna do. I need to call on Wednesday and ask if they have a financial assistance program. They probably don't because it's not a hospital. It's too overwhelming to think about. And you know what the kicker is? The MRI showed nothing. It has been an expensive, physically and emotionally grueling experience. I've learned not to go to urgent care, xrays and imaging won't show anything, and ffs find a good ortho.

Let's pray I don't have another full dislocation anytime soon.

My crutches arrived today, so that was a highlight. I fell at the lightscape and bruised myself up pretty bad, plus my knee has been grumpy all week from it. So I decided one cane isn't enough for outings like that. Crutches it is.

I need to learn how to walk with them. That'll take some time. But I'm excited.

I might try and crowdfund that MRI bill. 😓

I just need to go to sleep. Things will look better in the morning. Or you know. In a few hours.

❤