I think I'm hypermobile, now what?
October 27, 2021 9:37 AM Subscribe
My body is falling apart at the seams. Halp! What specialists do I seek, what magic words do I say to get evaluated properly, and what sort of treatments are available? Are there any comorbidities or differential diagnoses I need to watch out for?
My right hip and shoulder are subluxed and I've got seven other joints that are deeply unstable. I get injuries all the time that just won't heal. Sometimes I'm walking and my ankle gives out and I'm.. suddenly on the ground. Not to mention my joints hurt all the heckin' time! I'm autistic, I know Ehlers-Danlos and POTS are common with us but jeez louise. I do not want to live in constant pain.
I finally have health insurance again so I can work on this issue. (Portland, OR area if you have any recs.) I know I'm going to need to make some major changes in how I move, probably involving strength training, proprioception and a PT. I am willing to dedicate a lot of time and energy to get my body back. Intense movement has always been a great outlet for me and I miss being able to run and play! Have you been through a rehabilitation process? What might that look like? What functionality were you able to regain?
My right hip and shoulder are subluxed and I've got seven other joints that are deeply unstable. I get injuries all the time that just won't heal. Sometimes I'm walking and my ankle gives out and I'm.. suddenly on the ground. Not to mention my joints hurt all the heckin' time! I'm autistic, I know Ehlers-Danlos and POTS are common with us but jeez louise. I do not want to live in constant pain.
I finally have health insurance again so I can work on this issue. (Portland, OR area if you have any recs.) I know I'm going to need to make some major changes in how I move, probably involving strength training, proprioception and a PT. I am willing to dedicate a lot of time and energy to get my body back. Intense movement has always been a great outlet for me and I miss being able to run and play! Have you been through a rehabilitation process? What might that look like? What functionality were you able to regain?
I think you want to start with a referral to a rheumatologist. They can run bloodwork and do x-rays and ultrasounds to rule out other joint issues and confirm Ehlers-Danlos if that’s what it is. They can also refer you to PT.
posted by bananacabana at 12:59 PM on October 27, 2021 [2 favorites]
posted by bananacabana at 12:59 PM on October 27, 2021 [2 favorites]
I'm so sorry you're dealing with this. I have hypermobile EDS and probably POTS and MCAS (waiting on referral to specialists for those). I had to go through so many doctors who brushed off my hypermobility. I was in severe pain for a long time.
Anyway, for me, it was a rheumatologist who gave me the initial diagnosis, then she sent me to a geneticist for the official diagnosis. Even though there is no genetic test yet for the hypermobile subtype, the geneticist is still the gold standard for diagnosis.
I've been in PT for about a year now. It's significantly improved my pain, but I have a lot of set backs, and my comorbidities have really been hampering progress. But I still have very little functioning. I used to love running and cycling and swimming and now I can only walk very short distances, very slowly.
It can be very hard to find a PT who is knowledgeable about working with EDS. The book by Muldowney, "Living Life to the Fullest with EDS" is written as a guide for both PTs and their patients. It has a full exercise progression. It's often recommended to bring this book with you to PT and ask your PT to help you work through the exercises in the book. (I didn't do this because my PT already knows the book and while we're not following the exact protocol in order to sort of go with what my body needs, we're still doing the exercises from the book).
I would recommend being wary of patient support groups or forums like reddit's EDS site. They can be helpful but also a little toxic. Mostly, I just find it discouraging to hear how badly people are doing with the disorder. But YMMV.
posted by litera scripta manet at 1:00 PM on October 27, 2021 [1 favorite]
Anyway, for me, it was a rheumatologist who gave me the initial diagnosis, then she sent me to a geneticist for the official diagnosis. Even though there is no genetic test yet for the hypermobile subtype, the geneticist is still the gold standard for diagnosis.
I've been in PT for about a year now. It's significantly improved my pain, but I have a lot of set backs, and my comorbidities have really been hampering progress. But I still have very little functioning. I used to love running and cycling and swimming and now I can only walk very short distances, very slowly.
It can be very hard to find a PT who is knowledgeable about working with EDS. The book by Muldowney, "Living Life to the Fullest with EDS" is written as a guide for both PTs and their patients. It has a full exercise progression. It's often recommended to bring this book with you to PT and ask your PT to help you work through the exercises in the book. (I didn't do this because my PT already knows the book and while we're not following the exact protocol in order to sort of go with what my body needs, we're still doing the exercises from the book).
I would recommend being wary of patient support groups or forums like reddit's EDS site. They can be helpful but also a little toxic. Mostly, I just find it discouraging to hear how badly people are doing with the disorder. But YMMV.
posted by litera scripta manet at 1:00 PM on October 27, 2021 [1 favorite]
Best answer: Oh, also, you can still be diagnosed with hEDS even if you don't currently meet the Beighton scale. I was in really bad shape when I saw the geneticist, and I was like, I could bend down and touch the floor, but it will destroy my back. So she had me do things like wrap my thumb and pinky finger around my wrist to see if they meet, and then she sort of palpated joints like my knee which allowed her to feel the hypermobility.
I'm mainly mentioning this because I used to think I couldn't be diagnosed because I no longer could do the crazy contortion tricks I used to (because I purposefully started avoiding them).
Be very wary of any kind of stretching exercise, chiropractic manipulation, or yoga. I had to basically purposefully decondition myself and start over from scratch. Recumbent bike is a good form of exercise (but wait to start PT), both for hEDS and POTS.
If you were in the Boston Area, I could recommend specialists, but sadly not familiar with what's available in Portland.
Be prepared to be assertive and push back on doctors that you see. Basically these days I try to avoid any doctor who doesn't have an EDS type specialty but obviously I can't do that completely. Since soft tissue affects so many organ systems, EDS can cause so many complex issues. Basically every specialist I get shuffled off to has no idea what to do with me (except for my rheum and PT).
posted by litera scripta manet at 1:06 PM on October 27, 2021 [1 favorite]
I'm mainly mentioning this because I used to think I couldn't be diagnosed because I no longer could do the crazy contortion tricks I used to (because I purposefully started avoiding them).
Be very wary of any kind of stretching exercise, chiropractic manipulation, or yoga. I had to basically purposefully decondition myself and start over from scratch. Recumbent bike is a good form of exercise (but wait to start PT), both for hEDS and POTS.
If you were in the Boston Area, I could recommend specialists, but sadly not familiar with what's available in Portland.
Be prepared to be assertive and push back on doctors that you see. Basically these days I try to avoid any doctor who doesn't have an EDS type specialty but obviously I can't do that completely. Since soft tissue affects so many organ systems, EDS can cause so many complex issues. Basically every specialist I get shuffled off to has no idea what to do with me (except for my rheum and PT).
posted by litera scripta manet at 1:06 PM on October 27, 2021 [1 favorite]
Sorry, last post...
I have found compression sleeves and compression clothing to be hugely helpful. They provide some stability, but also really help with proprioception. I tried a lot of cheap compression sleeves before finally trying more expensive ones. The expensive ones were worth it. Here's what I use.
For compression sleeves, I use Bauerfeind brand. They're pricier, but worth it. They hold up well. I don't wear this stuff all the time, but any time I'm walking/exercising, or any time a joint gets achy.
Knee sleeve
Ankle sleeve
Then I also use their shoulder sleeves and wrist brace.
The best thing that I discovered is this brand CWX that makes athletic compression pants with reinforcements around the hips/waist/lower back. I've never found a lumbar support or SI brace that I can tolerate. Basically, anything with straps, my body hates (I think b/c of circulation issues).
I love their endurance generator pants. They are intense though - very constricting in the waist. I had to stretch them out at first. But they get more comfortable the more you wear them.
I also wear medical compression tights under my athletic compression CWX pants. This might not be an issue for you unless you suspect POTS or ortho intolerance, but the medical compression + athletic compression also helps stabilize things a bit better. It just makes standing feel less challenging. I buy Juzo soft Tights. I also have Juzo soft arm sleeves and gloves. I get them from brightlifedirect.com.
Of course, IANAD/IANYD. My rheum and PT both suggest compression stuff, but I had already found this stuff before I started seeing them. One thing about EDS is even if you have a good medical practitioner, you're still on your own with a lot of this stuff. When it came to electrolyte dosing for POTS, my PT was basically like, experiment and see what works.
This is the one place where the forums can come in handy. Like, if you're looking for recommendations for compression gear, search the EDS subreddit. I generally find the POTS subreddit less depressing/daunting than the EDS subreddit for whatever reason.
Good luck. Feel free to memail me at any point, even just if you want to complain/commiserate/whatever. This is just a tough diagnosis to cope with.
posted by litera scripta manet at 1:16 PM on October 27, 2021 [4 favorites]
I have found compression sleeves and compression clothing to be hugely helpful. They provide some stability, but also really help with proprioception. I tried a lot of cheap compression sleeves before finally trying more expensive ones. The expensive ones were worth it. Here's what I use.
For compression sleeves, I use Bauerfeind brand. They're pricier, but worth it. They hold up well. I don't wear this stuff all the time, but any time I'm walking/exercising, or any time a joint gets achy.
Knee sleeve
Ankle sleeve
Then I also use their shoulder sleeves and wrist brace.
The best thing that I discovered is this brand CWX that makes athletic compression pants with reinforcements around the hips/waist/lower back. I've never found a lumbar support or SI brace that I can tolerate. Basically, anything with straps, my body hates (I think b/c of circulation issues).
I love their endurance generator pants. They are intense though - very constricting in the waist. I had to stretch them out at first. But they get more comfortable the more you wear them.
I also wear medical compression tights under my athletic compression CWX pants. This might not be an issue for you unless you suspect POTS or ortho intolerance, but the medical compression + athletic compression also helps stabilize things a bit better. It just makes standing feel less challenging. I buy Juzo soft Tights. I also have Juzo soft arm sleeves and gloves. I get them from brightlifedirect.com.
Of course, IANAD/IANYD. My rheum and PT both suggest compression stuff, but I had already found this stuff before I started seeing them. One thing about EDS is even if you have a good medical practitioner, you're still on your own with a lot of this stuff. When it came to electrolyte dosing for POTS, my PT was basically like, experiment and see what works.
This is the one place where the forums can come in handy. Like, if you're looking for recommendations for compression gear, search the EDS subreddit. I generally find the POTS subreddit less depressing/daunting than the EDS subreddit for whatever reason.
Good luck. Feel free to memail me at any point, even just if you want to complain/commiserate/whatever. This is just a tough diagnosis to cope with.
posted by litera scripta manet at 1:16 PM on October 27, 2021 [4 favorites]
I was recently diagnosed by a rheumatologist after a lifetime of doctors shrugging off symptoms. At this point, the only hope he’s offering is physical therapy.
posted by The Underpants Monster at 1:22 PM on October 27, 2021
posted by The Underpants Monster at 1:22 PM on October 27, 2021
I have hEDS and relate so much to your struggles, especially with the ankles. My rehab has been slow and ongoing, and I am working through what it all means to me as I age. I loved doing extreme sports, stupid human tricks and feats of strength. Now I do boring exercise and very light weights.
The struggle is part mental (what’s the point of this dumb weight?), part physical (ouch, pain). It gets easier the gentler I am with myself, which is a different way of being than I’ve been used to. The mental part also involves acknowledging and accepting a lot of negative experiences, injuries and physical trauma. Things were harder than they should have been and the pain was real, even if we’re ‘just used to it’. Therapy and coaching have helped me immensely with this.
One thing that is really key and not mentioned yet is supportive shoes. Avoid any type of flats; a small heel or rise is a must. And anything with ankle support! Flip flops are not your friends.
This will not only save your ankles but everything else. Can’t tell you how many times I’ve had and ankle give out and thrown out my arm, shoulder or hip as a failed rebalancing act.
posted by iamkimiam at 3:59 PM on October 27, 2021
The struggle is part mental (what’s the point of this dumb weight?), part physical (ouch, pain). It gets easier the gentler I am with myself, which is a different way of being than I’ve been used to. The mental part also involves acknowledging and accepting a lot of negative experiences, injuries and physical trauma. Things were harder than they should have been and the pain was real, even if we’re ‘just used to it’. Therapy and coaching have helped me immensely with this.
One thing that is really key and not mentioned yet is supportive shoes. Avoid any type of flats; a small heel or rise is a must. And anything with ankle support! Flip flops are not your friends.
This will not only save your ankles but everything else. Can’t tell you how many times I’ve had and ankle give out and thrown out my arm, shoulder or hip as a failed rebalancing act.
posted by iamkimiam at 3:59 PM on October 27, 2021
Tangential to your main question, but since you mentioned comorbidities, and there have been lots of excellent answers above about the physical aspect, at least anecdotally I see a lot of people in the Autistic community who also have some form of EDS. If you’ve ever been curious about your neurology, it might be worth looking into at some point.
posted by matildaben at 4:22 PM on October 27, 2021 [1 favorite]
posted by matildaben at 4:22 PM on October 27, 2021 [1 favorite]
I've seen some interesting pubmed articles on the surprisingly high comorbidity of autism and EDS so that definitely appears to be a thing. I read in another article that 50% of EDS patients have POTS (or maybe orthostatic intolerance more generally). I mentioned this in passing earlier, but Mast Cell Activation Syndrome (MCAS) seems to have a high EDS comorbidity as well. So having POTS/EDS/MCAS is a nice little trifecta of disorders that almost no one in the medical community knows what to do with and very few even will diagnose.
The Ehlers Danlos Society has some interesting papers/conference presentations from annual EDS conference in their archives.
Also can't believe I forgot to mention shoes! As iamkimiam mentions, they're super important. I wear running shoes all the time. I used to use superfeet green inserts in my running shoes, but I've switched over to custom orthotics that I got through my PT which are even better for me than the superfeet green. Good arch support makes a big difference. I wear rubber Birkenstock sandals in the shower, because my left foot just has no structural integrity at this point and I can't be barefoot for more than like 30 seconds.
For the diagnosis itself, just be prepared to push if you need to, and get a second, and then third, and then fourth opinion. I've had doctors tell me hypermobility is totally normal, and I'm sure it is for some people. But not when it causes you to regularly fall and end up with concussions because your ankles give out and your hips sublux all the time.
Good luck. This is really tough, but finding the right provider can make a big difference.
posted by litera scripta manet at 4:56 PM on October 27, 2021 [1 favorite]
The Ehlers Danlos Society has some interesting papers/conference presentations from annual EDS conference in their archives.
Also can't believe I forgot to mention shoes! As iamkimiam mentions, they're super important. I wear running shoes all the time. I used to use superfeet green inserts in my running shoes, but I've switched over to custom orthotics that I got through my PT which are even better for me than the superfeet green. Good arch support makes a big difference. I wear rubber Birkenstock sandals in the shower, because my left foot just has no structural integrity at this point and I can't be barefoot for more than like 30 seconds.
For the diagnosis itself, just be prepared to push if you need to, and get a second, and then third, and then fourth opinion. I've had doctors tell me hypermobility is totally normal, and I'm sure it is for some people. But not when it causes you to regularly fall and end up with concussions because your ankles give out and your hips sublux all the time.
Good luck. This is really tough, but finding the right provider can make a big difference.
posted by litera scripta manet at 4:56 PM on October 27, 2021 [1 favorite]
My most relevant comorbidity seems to be whatever's going on with my digestion, which may in fact be caused by EDS. When I can digest my food better, everything works better.
Got my Type 3 diagnosis via a rheumatologist. Did not get genetic testing - my insurance won't pay for it, for one. But the diagnosis was good enough to get group session aquatherapy in a warm pool, which really did help. Rheumatologist said that was the gold standard for strengthening without damaging. Had to learn to speak up when some exercises were too much for my joints but when I did they had alternatives at the ready.
Was told absolutely no yoga which makes a lot of sense because I previously injured my neck badly doing a "gentle stretch" during a yoga class. OTOH, a pilates class designed for older or injured people was great.
Also had some individual sessions of PT in the gym which were very helpful for personalized advice and giving the PTs more of an idea where my body was at for during aquatherapy. The gym sessions focused on core and stabilization which, e.g., helped my legs to move without my hips popping and clunking so much. And also made me realize how weak and wobbly I really am. What differed the most from my expectations going in was that very rarely did the rehab focus on the parts that hurt the most or even on any joints. It was all about basic strength, support, and stability, and some very helpful discussion about how to dissect and approach routine activities in less harming ways.
This was all during a lesser period of Covid protocols. I think it would have gone much better were touch allowed, and also if I could have brought in something to take notes with for the gym visits. Also would have liked to be able to space out the visits more - once a week, say - and only slowly amp up the frequency as I got stronger. I think the PT clinic was at the time making some scheduling decisions based on financial pressures.
Haven't had access to the pool since Covid surged locally again last winter. So the advice I'd have here is: if you get PT, try to get clear take home instructions in whatever format works for you, and work with your PT to adapt them for your living space.
Net result of PT tho? Undeniably stronger. Stairs have been much easier. Fewer non-hand injuries. The effects have been slowly wearing off over the year since I stopped because the exercises obviously need to be a continual thing and adapted as part of my daily routines.
I have a complicated relationship to shoes... supportive shoes will protect but not necessarily strengthen. I had to find a way to strengthen my feet in order to keep walking, for however long that lasts.
I frequently hurt myself while sleeping - it's the pivoting on the joints - so I try to build a pillow containment field that won't let me turn or move much.
My hands are my major all-the-time unresolved issue. I just try to keep my hands in fists a lot, not use my thumbs unnecessarily (ha), and avoid heavy and glass containers. I do use fingerless compression gloves in winter, and they help, although they don't seem to last long.
Oh, a Thera Cane can be very helpful if you cannot apply pressure with your hands/wrists/arms. Many thanks to the MeFite who gifted me mine!
@litera scripta manet thanks so much for the compression sleeve info. I've been lusting after something for my elbows for years but it's kind of an investment and did not know where to start.
posted by to wound the autumnal city at 5:52 PM on October 27, 2021 [2 favorites]
Got my Type 3 diagnosis via a rheumatologist. Did not get genetic testing - my insurance won't pay for it, for one. But the diagnosis was good enough to get group session aquatherapy in a warm pool, which really did help. Rheumatologist said that was the gold standard for strengthening without damaging. Had to learn to speak up when some exercises were too much for my joints but when I did they had alternatives at the ready.
Was told absolutely no yoga which makes a lot of sense because I previously injured my neck badly doing a "gentle stretch" during a yoga class. OTOH, a pilates class designed for older or injured people was great.
Also had some individual sessions of PT in the gym which were very helpful for personalized advice and giving the PTs more of an idea where my body was at for during aquatherapy. The gym sessions focused on core and stabilization which, e.g., helped my legs to move without my hips popping and clunking so much. And also made me realize how weak and wobbly I really am. What differed the most from my expectations going in was that very rarely did the rehab focus on the parts that hurt the most or even on any joints. It was all about basic strength, support, and stability, and some very helpful discussion about how to dissect and approach routine activities in less harming ways.
This was all during a lesser period of Covid protocols. I think it would have gone much better were touch allowed, and also if I could have brought in something to take notes with for the gym visits. Also would have liked to be able to space out the visits more - once a week, say - and only slowly amp up the frequency as I got stronger. I think the PT clinic was at the time making some scheduling decisions based on financial pressures.
Haven't had access to the pool since Covid surged locally again last winter. So the advice I'd have here is: if you get PT, try to get clear take home instructions in whatever format works for you, and work with your PT to adapt them for your living space.
Net result of PT tho? Undeniably stronger. Stairs have been much easier. Fewer non-hand injuries. The effects have been slowly wearing off over the year since I stopped because the exercises obviously need to be a continual thing and adapted as part of my daily routines.
I have a complicated relationship to shoes... supportive shoes will protect but not necessarily strengthen. I had to find a way to strengthen my feet in order to keep walking, for however long that lasts.
I frequently hurt myself while sleeping - it's the pivoting on the joints - so I try to build a pillow containment field that won't let me turn or move much.
My hands are my major all-the-time unresolved issue. I just try to keep my hands in fists a lot, not use my thumbs unnecessarily (ha), and avoid heavy and glass containers. I do use fingerless compression gloves in winter, and they help, although they don't seem to last long.
Oh, a Thera Cane can be very helpful if you cannot apply pressure with your hands/wrists/arms. Many thanks to the MeFite who gifted me mine!
@litera scripta manet thanks so much for the compression sleeve info. I've been lusting after something for my elbows for years but it's kind of an investment and did not know where to start.
posted by to wound the autumnal city at 5:52 PM on October 27, 2021 [2 favorites]
I had a course of prolotherapy (similar to PRP) and it reduced the range of motion and mobility of the joints treated. I’m sure it’s not a whole body solution but for me it’s made a big difference to those specific joints.
posted by sixswitch at 6:07 PM on October 27, 2021
posted by sixswitch at 6:07 PM on October 27, 2021
Sorry to keep popping back into the thread, but since you mentioned that you like "intense movement", I found that after I started PT, I was able to do aquajogging. Basically, you buy an aquajogging belt, and then you make running motions in the deep end of the pool so there's no impact. Takes a little while to get the hang of it, but it's actually a pretty good workout. I still miss actually running (and my lungs can't currently tolerate chlorine), but it's a good way to build strength.
As sixswitch mentioned, aqua exercises in general can be really good for EDS. It's much safer in the pool for your joints. I'm not yet at a point where I can tolerate swimming beyond lying on my back and gently kicking, but the pool was one of the things that helped me get to be a bit more active...until my stupid asthma made that a no go for the time being. Also COVID can be an issue, but I found a pool that barely anyone else went to.
And since I got lazy about linking all the other braces I'm personally using, here's the rest of the stuff:
Shoulder brace
Wrist brace
Elbow brace although if elbow is a major trouble spot, you might want to go for this version
All this can definitely be expensive, especially if you have to buy two of each brace so left and right side are covered (though I always just start with 1 and make sure it works first). Compression braces can be really helpful for hEDS and hypermobility in general, but it's worth finding the right one, and in my experience, you get what you pay for. I have a drawer filled with all the cheap braces I tried, but I find they either don't give enough support, or they cut off circulation or they slip down or whatever.
One other thing to think about is the ergonomics of your work set up (and your non work set up). I was fortunately able to get reasonable accomodations so that my job got me a sit/stand adjustable desk and a really nice chair (Steelcase Gesture with head rest...the head rest is really helpful for my cervical spine problems)
Okay, now this should actually be my last post. I've just been deep into all this stuff for the last couple years, and I've spent a lot of time and money trying things out so hopefully some of this is helpful.
posted by litera scripta manet at 7:06 PM on October 27, 2021
As sixswitch mentioned, aqua exercises in general can be really good for EDS. It's much safer in the pool for your joints. I'm not yet at a point where I can tolerate swimming beyond lying on my back and gently kicking, but the pool was one of the things that helped me get to be a bit more active...until my stupid asthma made that a no go for the time being. Also COVID can be an issue, but I found a pool that barely anyone else went to.
And since I got lazy about linking all the other braces I'm personally using, here's the rest of the stuff:
Shoulder brace
Wrist brace
Elbow brace although if elbow is a major trouble spot, you might want to go for this version
All this can definitely be expensive, especially if you have to buy two of each brace so left and right side are covered (though I always just start with 1 and make sure it works first). Compression braces can be really helpful for hEDS and hypermobility in general, but it's worth finding the right one, and in my experience, you get what you pay for. I have a drawer filled with all the cheap braces I tried, but I find they either don't give enough support, or they cut off circulation or they slip down or whatever.
One other thing to think about is the ergonomics of your work set up (and your non work set up). I was fortunately able to get reasonable accomodations so that my job got me a sit/stand adjustable desk and a really nice chair (Steelcase Gesture with head rest...the head rest is really helpful for my cervical spine problems)
Okay, now this should actually be my last post. I've just been deep into all this stuff for the last couple years, and I've spent a lot of time and money trying things out so hopefully some of this is helpful.
posted by litera scripta manet at 7:06 PM on October 27, 2021
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Physical therapy is part of my child's treatment program and since all of their care is thru Children's, the practitioners are all knowledgeable about EDS. The EDS website I linked to has a wealth of information and also lists local support groups, which might be able to assist you in finding providers who will be the most helpful. If you are truly hypermobile, running and intense movement are probably not be the best physical modalities for you to avoid future injuries, since impact further destabilizes your joints. But with good PT education and treatment, you should be able to find ways to move your body that feel good and reduce your risk of injury. Feel free to memail me if you have other questions.
posted by danielleh at 12:57 PM on October 27, 2021