Biomechanics for poor spatial reasoning
September 14, 2023 6:56 PM Subscribe
I want to better understand some issues I'm having with musculoskeletal pain and nerve irritation, possibly involving hEDS. I believe better understanding of biomechanics would help my self management but my spatial reasoning is really bad, which makes it really difficult to conceptualize the anatomy. Any suggestions?
YANMD of course. I'm working with docs as well. I am a certified yoga teacher and had a lot of anatomy lessons to become one, but it's still very hard to see how everything fits together for whatever reason.
I've got this great Human Body coffee table book, yoga anatomy books, and a 3D visual phone app that I use to locate acupressure points. Surely some of these things can be used for my self education.
I have had knots in my neck and shoulder lasting many months, with radiating nerve discomfort down into my middle rib area on the outside of my body (suspect maybe "thoracic outlet syndrome" with some other stuff), flank pain worse in the mornings (kidney issues already ruled out; doc agrees it's probably turning 40 with 20 years of ballet behind me), unpleasant pelvic region pain like I have an irritated-not-quite-compressed nerve in my SI joint area that irritates my sacral nerve root under the pelvis, and I also feel the irritation on the outside of the leg.
I believe if I understood the biomechanics better I could make appropriate lifestyle modifications to reduce my pain as I work with medical providers to address it in other ways. I want to understand if the upper body and lower body stuff is related and how one impacts the other.
My rheumatologist did some cursory five question evaluation when I brought up my suspicion of having hypermobile EDS and I scored positive on the questions. She offered to refer me to an EDS center in the nearest major city for more thorough evaluation since she's not technically qualified to diagnose it. I'm not sure what a formal diagnosis would get me when I clearly just need to manage the instability and can get PT for specific problems just as easily.
But basically I am hurting and it's interfering with my self care as my exercise routine is getting more difficult to do without these issues from trapped nerves or almost trapped but not quite. The neurologist did imaging on my neck and it's the same thing. Basically I am hypersensitive to mild nerve compression - imaging shows that there's an issue, but it is not that severe so I shouldn't notice it as much as I do.
Except I do notice, and it sucks. So I feel like understanding how these things all work together, examples of movements or postures that cause this type of pain in a person, visuals of stretches to counter those problems, all of that could help my self management greatly. (Maybe I can even avoid a nerve conduction test or EMG!) I don't know where to go for this, if there is a specific term for it, or what. Any suggestions are appreciated.
YANMD of course. I'm working with docs as well. I am a certified yoga teacher and had a lot of anatomy lessons to become one, but it's still very hard to see how everything fits together for whatever reason.
I've got this great Human Body coffee table book, yoga anatomy books, and a 3D visual phone app that I use to locate acupressure points. Surely some of these things can be used for my self education.
I have had knots in my neck and shoulder lasting many months, with radiating nerve discomfort down into my middle rib area on the outside of my body (suspect maybe "thoracic outlet syndrome" with some other stuff), flank pain worse in the mornings (kidney issues already ruled out; doc agrees it's probably turning 40 with 20 years of ballet behind me), unpleasant pelvic region pain like I have an irritated-not-quite-compressed nerve in my SI joint area that irritates my sacral nerve root under the pelvis, and I also feel the irritation on the outside of the leg.
I believe if I understood the biomechanics better I could make appropriate lifestyle modifications to reduce my pain as I work with medical providers to address it in other ways. I want to understand if the upper body and lower body stuff is related and how one impacts the other.
My rheumatologist did some cursory five question evaluation when I brought up my suspicion of having hypermobile EDS and I scored positive on the questions. She offered to refer me to an EDS center in the nearest major city for more thorough evaluation since she's not technically qualified to diagnose it. I'm not sure what a formal diagnosis would get me when I clearly just need to manage the instability and can get PT for specific problems just as easily.
But basically I am hurting and it's interfering with my self care as my exercise routine is getting more difficult to do without these issues from trapped nerves or almost trapped but not quite. The neurologist did imaging on my neck and it's the same thing. Basically I am hypersensitive to mild nerve compression - imaging shows that there's an issue, but it is not that severe so I shouldn't notice it as much as I do.
Except I do notice, and it sucks. So I feel like understanding how these things all work together, examples of movements or postures that cause this type of pain in a person, visuals of stretches to counter those problems, all of that could help my self management greatly. (Maybe I can even avoid a nerve conduction test or EMG!) I don't know where to go for this, if there is a specific term for it, or what. Any suggestions are appreciated.
My wife was recently diagnosed with EDS and has noticed a bunch of advantages:
- Having a formal diagnosis makes healthcare providers in general much more willing to be curious about unexplained abdominal pain
- Getting hooked in to EDS support groups online has helped her get referrals to EDS-competent care. She independently found an EDS-specialist massage therapist, and she has helped her immensely.
- There is genetic testing for *some* types of EDS, and some of them (vascular in particular) come with potential cardiac complications or other things that it is a very good idea to be on the lookout for.
- Everything assenav says about physical therapy. My wife had seen physical therapists for various things for years, and they mostly didn't help or made it worse.
- The one thing that *did* really help, other than the specialist massage, was Feldenkrais. That method's focus on balancing tension was the first thing that really helped Alex start to feel where her body *should* be and what actually felt good vs bad.
So yeah, pursue the EDS thing, and do some digging into the many EDS groups online and talk to those folks. Your experience sounds very much like Alex's, and the diagnosis was really the key for her to understand a lot of her problems.
posted by restless_nomad at 5:30 AM on September 15, 2023 [2 favorites]
- Having a formal diagnosis makes healthcare providers in general much more willing to be curious about unexplained abdominal pain
- Getting hooked in to EDS support groups online has helped her get referrals to EDS-competent care. She independently found an EDS-specialist massage therapist, and she has helped her immensely.
- There is genetic testing for *some* types of EDS, and some of them (vascular in particular) come with potential cardiac complications or other things that it is a very good idea to be on the lookout for.
- Everything assenav says about physical therapy. My wife had seen physical therapists for various things for years, and they mostly didn't help or made it worse.
- The one thing that *did* really help, other than the specialist massage, was Feldenkrais. That method's focus on balancing tension was the first thing that really helped Alex start to feel where her body *should* be and what actually felt good vs bad.
So yeah, pursue the EDS thing, and do some digging into the many EDS groups online and talk to those folks. Your experience sounds very much like Alex's, and the diagnosis was really the key for her to understand a lot of her problems.
posted by restless_nomad at 5:30 AM on September 15, 2023 [2 favorites]
Check out the book "Living Life to the Fullest with EDS". It's written by a physical therapist, and has a very detailed physical therapy protocol for hEDS. For me, the key was first stabilizing my SI joint - but the reason why that book is so helpful is you really need to balance how you build up strength. I tried so many other PTs, so many doctors, and following that protocol was the thing that actually got me to a point where I could start truly making progress.
posted by litera scripta manet at 5:58 AM on September 15, 2023 [1 favorite]
posted by litera scripta manet at 5:58 AM on September 15, 2023 [1 favorite]
The one thing that *did* really help, other than the specialist massage, was Feldenkrais
I don’t have EDS but I have issues due to an injury and came in to recommend Feldenkrais. The Alexander method might help too. I follow this guy on YouTube and some of his tips and exercises have really helped. Especially, weirdly, walking lessons.
posted by warriorqueen at 6:35 AM on September 15, 2023 [1 favorite]
I don’t have EDS but I have issues due to an injury and came in to recommend Feldenkrais. The Alexander method might help too. I follow this guy on YouTube and some of his tips and exercises have really helped. Especially, weirdly, walking lessons.
posted by warriorqueen at 6:35 AM on September 15, 2023 [1 favorite]
Popping back in to say, be especially careful with stretching until you've been evaluated for hypermobility. At my diagnostic appointment, I was told to never stretch beyond 80% of my total ability, because I was overstretching my ligaments and hurting my joints. Poor proprioception goes into this too--people with EDS don't have good awareness of where their bodies are in space or how their body parts work together, so tend to overdo it.
posted by assenav at 8:16 AM on September 15, 2023 [2 favorites]
posted by assenav at 8:16 AM on September 15, 2023 [2 favorites]
Yes, the stretching thing is a great point! My PT (who specialized in EDS) and the geneticist who did the full diagnosis process with me both mentioned this. With hEDS, you can easily end up stretching the joints, not just the muscle, and the last thing you want is to have more range of motion. I would be very cautious with yoga, and with any exercise routine.
Here's a link to that book with a PT protocol for EDS. I would be very cautious with any exercise protocol not specifically tied to EDS.
I have had knots in my neck and shoulder lasting many months, with radiating nerve discomfort down into my middle rib area on the outside of my body (suspect maybe "thoracic outlet syndrome" with some other stuff), flank pain worse in the mornings (kidney issues already ruled out; doc agrees it's probably turning 40 with 20 years of ballet behind me), unpleasant pelvic region pain like I have an irritated-not-quite-compressed nerve in my SI joint area that irritates my sacral nerve root under the pelvis, and I also feel the irritation on the outside of the leg.
IANAD, but it wouldn't surprise me if most/all of this stuff is EDS related. EDS can cause GI issues. I used to have tons of knots in my shoulder and neck - it turns out, those knots were my bodies way of trying to stabilize unstable joints. I had horrible issues with my SI joint. Some of the pelvic pain may be from you unconsciously using your pelvic muscles to stabilize your SI joint.
YMMV, but it was totally worth it to me to get the diagnosis. I still have some doctors who dismiss me/don't take me seriously, but especially b/c the EDS damage to joints etc often don't show up in lab tests/imaging, it helps to be able to get you to take people seriously. Plus, any doctor who has even a little familiarity with EDS should understand that EDS can be sort of a wildcard. It makes symptoms present differently, it manifests differently in each patient, and changes over time b/c connective tissue is everywhere.
posted by litera scripta manet at 10:32 AM on September 15, 2023 [1 favorite]
Here's a link to that book with a PT protocol for EDS. I would be very cautious with any exercise protocol not specifically tied to EDS.
I have had knots in my neck and shoulder lasting many months, with radiating nerve discomfort down into my middle rib area on the outside of my body (suspect maybe "thoracic outlet syndrome" with some other stuff), flank pain worse in the mornings (kidney issues already ruled out; doc agrees it's probably turning 40 with 20 years of ballet behind me), unpleasant pelvic region pain like I have an irritated-not-quite-compressed nerve in my SI joint area that irritates my sacral nerve root under the pelvis, and I also feel the irritation on the outside of the leg.
IANAD, but it wouldn't surprise me if most/all of this stuff is EDS related. EDS can cause GI issues. I used to have tons of knots in my shoulder and neck - it turns out, those knots were my bodies way of trying to stabilize unstable joints. I had horrible issues with my SI joint. Some of the pelvic pain may be from you unconsciously using your pelvic muscles to stabilize your SI joint.
YMMV, but it was totally worth it to me to get the diagnosis. I still have some doctors who dismiss me/don't take me seriously, but especially b/c the EDS damage to joints etc often don't show up in lab tests/imaging, it helps to be able to get you to take people seriously. Plus, any doctor who has even a little familiarity with EDS should understand that EDS can be sort of a wildcard. It makes symptoms present differently, it manifests differently in each patient, and changes over time b/c connective tissue is everywhere.
posted by litera scripta manet at 10:32 AM on September 15, 2023 [1 favorite]
Response by poster: Thanks everyone, I am working on getting an appointment for formal evaluation thanks to your feedback. I happened to find a massage therapist with EDS. First one I have found that I don't have to take five minutes to get off the table in multiple stages after learning that just getting up makes my back go out for a few days.
I was diagnosed with pelvic instability and sacral hypermobility during yoga teacher training because of all the stretching. I consistently hear that I need more strength to balance the flexibility I have. It's just hard when strength training is so boring.
I definitely meet the original criteria but I'm not sure I meet the current criteria for a diagnosis of hEDS. But this place seems cutting edge and they take fringe diagnoses like POTS and MCAS seriously so I can at least trust the results of the diagnostic process. Presumably an HDS diagnosis will also open some doors for insurance to cover certain things, even if it wouldn't open as many doors as hEDS.
Chronic awareness of nerve inflammation is a distinctly unpleasant, distracting type of pain. I really want to understand how my daily activities contribute to the patterns of pain I'm experiencing so I can address the triggers within my own control. I'll be checking out that book for sure as well as Feldenkrais/Alexander method.
posted by crunchy potato at 12:37 PM on September 15, 2023
I was diagnosed with pelvic instability and sacral hypermobility during yoga teacher training because of all the stretching. I consistently hear that I need more strength to balance the flexibility I have. It's just hard when strength training is so boring.
I definitely meet the original criteria but I'm not sure I meet the current criteria for a diagnosis of hEDS. But this place seems cutting edge and they take fringe diagnoses like POTS and MCAS seriously so I can at least trust the results of the diagnostic process. Presumably an HDS diagnosis will also open some doors for insurance to cover certain things, even if it wouldn't open as many doors as hEDS.
Chronic awareness of nerve inflammation is a distinctly unpleasant, distracting type of pain. I really want to understand how my daily activities contribute to the patterns of pain I'm experiencing so I can address the triggers within my own control. I'll be checking out that book for sure as well as Feldenkrais/Alexander method.
posted by crunchy potato at 12:37 PM on September 15, 2023
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If it is hEDS, a diagnosis will help in that there are many comorbidities that can contribute to musculoskeletal pain and discomfort (including bad proprioception!) and a diagnosis and access to an EDS aware pain management doc or/and Hypermobile aware PT will be helpful! PT with a Hypermobile person who isn’t aware of their hypermobility can actually cause more damage, because the joints, muscles, ligaments, and tendons actually don’t work together the way they are supposed to. So “managing the instability” is still important, but needs to be approaches differently.
If it is not EDS and you’re not Hypermobile, then you can rule that out and move forward with another strategy, but because of the risk of injury, I would strongly suggest starting with that.
posted by assenav at 7:15 PM on September 14, 2023 [3 favorites]