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earlymorningechoesTwo weeks ago, I had a video visit with a rheumatologist, because my physical medicine doctor was trying to get to the bottom of my chronic pain and a test result had come back as positive that can come back as positive in autoimmune disorders like lupus and rheumatoid arthritis (it can also come back positive for no reason, but mine is very high, apparently, so they wanted to check).
The rheumatologist is like "so I doubt you have an autoimmune condition, seeing as your primary symptom is joint pain. However, can you do these stretches/hand movements for me," I do them, and she smiles.
"You're double-jointed. You're hypermobile."
Cue me shrieking.
I've heard of hypermobility before. I've heard of Ehlers-Danlos syndrome because my oldest friend and her sister and mother all have it. I was CONVINCED I wasn't hypermobile because I misunderstood the diagnostic tests when I read about them online. I can move my thumb back to touch my wrist...by pushing it with my other hand, which is the part of the test I'd missed while reading online. I didn't know other people can't do the reverse-prayer yoga pose, or reach their whole back, or or or.
Hypermobility syndrome is what they put on my chart, but it sounds like "Hypermobility Spectrum Disorder" is the newer term (this system also was still using Asperger's as a label much more recently than it was retired from the DSM, so I'm not surprised they're still using older terminology). A large number of people are hypermobile - something like 20% of the population has at least one hypermobile joint - but once it causes you pain, you get into HSD territory. And reading about it is just like reading about my life. Recurrent sprains. Appearing more flexible than you theoretically should. Clumsy. Poor proprioception.
Holy shit. I also have some minor symptoms that are more correlated with hypermobile EDS rather than straight HSD, but regardless, the standard treatment for both is mostly supportive/physical therapy/occupational therapy-type stuff. I'm already in PT (although the PT treats me like I don't want to get better), and I'm starting OT this week.
I'm just so so so happy to have an ANSWER. A NAME for what's happening to me and why it keeps happening and getting worse. Even if the answer is just "keep doing what you're doing, sorry."
In other good news: my best friend had surgery last week and it went supremely well!!
In bad news: the company I work for laid off two people I care about today. They've been proud of themselves for not laying off anyone during the pandemic, and then they laid off two people on the first of December. Two people who were being trained for a job done by a person who's already given his two weeks, who now needs to train two new people to do the job the two laid-off people were trained to do...in four days.
Time for a new job.
So good medical update, good friend update, bad work update.
The rheumatologist is like "so I doubt you have an autoimmune condition, seeing as your primary symptom is joint pain. However, can you do these stretches/hand movements for me," I do them, and she smiles.
"You're double-jointed. You're hypermobile."
Cue me shrieking.
I've heard of hypermobility before. I've heard of Ehlers-Danlos syndrome because my oldest friend and her sister and mother all have it. I was CONVINCED I wasn't hypermobile because I misunderstood the diagnostic tests when I read about them online. I can move my thumb back to touch my wrist...by pushing it with my other hand, which is the part of the test I'd missed while reading online. I didn't know other people can't do the reverse-prayer yoga pose, or reach their whole back, or or or.
Hypermobility syndrome is what they put on my chart, but it sounds like "Hypermobility Spectrum Disorder" is the newer term (this system also was still using Asperger's as a label much more recently than it was retired from the DSM, so I'm not surprised they're still using older terminology). A large number of people are hypermobile - something like 20% of the population has at least one hypermobile joint - but once it causes you pain, you get into HSD territory. And reading about it is just like reading about my life. Recurrent sprains. Appearing more flexible than you theoretically should. Clumsy. Poor proprioception.
Holy shit. I also have some minor symptoms that are more correlated with hypermobile EDS rather than straight HSD, but regardless, the standard treatment for both is mostly supportive/physical therapy/occupational therapy-type stuff. I'm already in PT (although the PT treats me like I don't want to get better), and I'm starting OT this week.
I'm just so so so happy to have an ANSWER. A NAME for what's happening to me and why it keeps happening and getting worse. Even if the answer is just "keep doing what you're doing, sorry."
In other good news: my best friend had surgery last week and it went supremely well!!
In bad news: the company I work for laid off two people I care about today. They've been proud of themselves for not laying off anyone during the pandemic, and then they laid off two people on the first of December. Two people who were being trained for a job done by a person who's already given his two weeks, who now needs to train two new people to do the job the two laid-off people were trained to do...in four days.
Time for a new job.
So good medical update, good friend update, bad work update.
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