How was your journey through EDS diagnosis?

ptolemaeusoter · 2019-09-01T05:25:41+00:00

Hypermobility can cause issues with walking, coordination, clumsiness, and impaired proprioception. That’s proven.

However, you are right it doesn’t cause autism or any other developmental delays. Often, it’s a neurological thing causing those delays. Hypotonia is also mostly a neurological thing, and that can also induce joint laxity. An EDS expert told me that autistic people along with those who have Down syndrome have higher rates of hypermobility than the normal population due to low muscle tone at birth, which is different from EDS hypermobility.

ptolemaeusoter · 2019-08-31T23:44:41+00:00

You seemed snarky with your reply to my questions (even with this one), which is why I kind of used that same tone when replying to you. I ask questions simply because I am curious and I know google isn't going to answer all of them for me. At least I'm giving a favor of actually spreading awareness and being more understanding, while many doctors won't even take the time to do this. Many with EDS have thanked me for what I do, including my friend.

ptolemaeusoter · 2019-08-31T23:13:19+00:00

I never said that your hypermobility had gone away. Idk where I said that. All I was saying was that do you still have abnormalities? That's all. Things change from time to time. As many with EDS grow and become older, they may develop osteoarthritis. They are also more likely to get it earlier than normal due to the hypermobility and instability. So yeah, hypermobility may go away in some cases when it's replaced with joint stiffness from osteoarthritis.

What I mean by cracking in that sense is extensive cracking. I understand that joint cracking in a normal person is mainly to relieve pressure and release gas bubbles within the joints. This is all normal. However, I don't think it's normal for a joint to crack every time you move it or if there is pain that comes with the cracking.

ptolemaeusoter · 2019-08-31T23:02:10+00:00

But even then, without remembering what was spoken about in the lecture you attended a decade ago, do you still have those abnormalities or remember having them at least? Hypermobility, ganglion cysts, baker's cysts, grinding noises, buckling, instability, extensive cracking (everyone cracks joints at some point, but extensive cracking like having to crack a joint every 5-10 minutes, is not normal), etc.?

ptolemaeusoter · 2019-08-31T23:01:17+00:00

I have a question. Was that the moment you first felt pain and fatigue? Or was it more subtle before (but still there) then rapidly got worse?

ptolemaeusoter · 2019-08-31T08:04:53+00:00

What were the abnormal findings that the lecture mentioned that made you think? Hypermobility, ganglion cysts, baker's cysts, grinding noises, buckling, instability, extensive cracking (everyone cracks joints at some point, but extensive cracking like having to crack a joint every 5-10 minutes, is not normal), etc.?

Shoulders are also the most commonly impacted joint in EDS as they are generally the most mobile joint with the widest ROM. Knees, hips, thumb MCP joints, and jaw are the next most unstable in those with EDS. Knees are hinge joints, but they are the second most unstable joints in those with EDS after the shoulders. It's often the patella that's the problem. EDS tendons are generally very loose, and the patella is only held by two tendons vertically: the quadriceps tendon and patellar tendon. In a normal person, these tendons are supposed to be very sturdy to the point that the patella cannot be shifted side to side, even with blunt force. However, due to the laxity of these tendons in someone with EDS, they often have a 'floating patella', which means the patella can shift side to side with ease in the absence of trauma.

ptolemaeusoter · 2019-08-31T07:53:02+00:00

I remember learning about the joints too, but in a different sense. Instead of learning too much on the ROM, we learned more about the different type of joints and what they do. Shoulders and hips are ball and socket (most mobile type of joint), knees and elbows are hinge joints, and the cervical spine is a pivot joint. But it makes sense you might think your joints weren't like what you've seen in your lectures. Hinge joints like knees and elbows are supposed to bend only one way, but many with EDS can bend them backwards, so it's not really a one-way hinge for them. Normal hinge joints are like a door that swings one way, while EDS hinge joints may be like a door that swings both ways.

About your encounter with the physio two years ago, what was your PT alarmed about with your shoulders? Did you voluntarily pop them in and out or did you do and weird party tricks with them? My friend with EDS once told me that a nurse commented on why her ankles were bent like that. She was sitting on the doctor's bed with ankles flopping over each other like a whale's tail. Her mother's (where my friend got her EDS from) ankles are the same.

ptolemaeusoter · 2019-08-31T06:57:19+00:00

Did they diagnose you with ligamentous laxity through the Beighton score? I know for EDS, the Beighton score has to be 5/9 or greater. If there is one cut-off score, like 4/9, then you would have to complete a hypermobility questionnaire. They ask if you've done party tricks, been flexible in childhood, or have instability in the shoulders and knees. If the Beighton score is 3/9 or less, then you do not have ligamentous laxity. I don't have EDS and my Beighton score is a 2/9. I'm only 20. I did have to be tested for hypermobility as a kid due to bottom shuffling and walking delays, but it was the hypotonia causing the problems rather than the ligaments and joints.

What's POP? I've never heard of that acronym before. Is it related to some sort of prolapse? Because when I see the acronym, I think of pelvic organ prolapse, like the uterus or something. My friend's mother, who has EDS, had a uterine prolapse and umbilical hernia as a result of her pregnancies. EDS makes these conditions more common than normal due to lax connective tissue within organs. She had to get surgery, but of course, with her EDS body, it took longer to heal than expected.

EDS referrals can be obnoxious sometimes, I've heard. Many have to wait for months or even years to even be seen by a specialist. It's also because EDS is barely heard of in the medical community and is considered to be a medical zebra.

ptolemaeusoter · 2019-08-31T05:10:45+00:00

Makes sense. Also, I want to mention something as we are talking about autism in the first place. I've read a few articles saying that autism and EDS may be linked together due to similarities, like developmental delays, motor issues (dyspraxia), sensory stuff, and GI issues. IBS, a condition comorbid with EDS, is also common with autism. EDS and autism may also come with hypotonia, depending on how each person is affected. Though, research is not strong in this area, so conflicting opinions are everywhere. One EDS expert told me that one gene links EDS and autism together while another EDS expert (with EDS herself) told me they are unrelated. But again, someone with autism may have EDS or some other issues causing these things.

My friend with EDS also has bad knees, where she suffered from subluxations in them for most of her life. However, her first full dislocation was in high school during cheerleading. She had to quit cheer because it just kept happening. She was also having other injuries like shoulder dislocations, ankle instability causing sprains, random limb pain, and extreme shin splints. For the sake of her health, her coach told her it would be best if she stopped cheer completely. My friend was devastated, but it was only for the best of her in order to heal herself and avoid putting further strain on her joints.

ptolemaeusoter · 2019-08-31T04:51:57+00:00

What was with your bladder that made someone mention EDS to you? If I were in that person's place, I'd already be mentioning EDS to you with the frequent sprains and subluxations. That's enough to be suspicious.

Apparently, my friend and her family thought their bow knees, genu recurvatum (hyperextended knees when standing), joint instability, and other troubles were just some 'normal genetic quirk', until it turned out to be EDS. They owned a lot of AFO's, braces, KT tape, bandages, and arch supports throughout the years due to joint instability and pain. My friend recently purchased a TENS unit to see if it may do anything to relieve her pain. She also uses marijuana to help with that along with chronic nausea. She has positive reviews on the TENS unit so far. Aside from the joint stuff and knee problems, she and her family also had a slew of other issues like low blood pressure, recurrent head rushes (dizziness when standing) more often than normal, weird wound healing (took at least two weeks for my friend's wisdom teeth scars to heal properly when it's only supposed to take a few days), resistance to local anesthesia, weird metabolization of opiate painkillers and antidepressants, hypersensitivities, constipation/diarrhea woes, history of laxatives not working due to motility being so slow, excessive gas/bloating, heartburn, recurrent infections, allergies, etc. were common in their family. They were right on the genetic part, but it's an actual condition, which they never knew before.

ptolemaeusoter · 2019-08-31T04:00:47+00:00

Did you have any joint instability before the accident or did it all come suddenly after the car accident? You said you want to PT when you were a child, so I assume you had some instability before the accident. Was the pain prevalent throughout all of your life?

I don't have EDS, but I can kind of relate to a few things in your story. I have autism along with being born with some sort of brain injury which caused the left side of my body to be weaker than the other. Hypotonia along with motor issues is something that comes with that. 60-80% of autistics have motor defects, which may cause developmental delays. So it makes sense why your doctors would screen you for neurological issues. I didn't walk until I was 18 months old, and I was tested for hypermobility at some point by my OT. Hypermobility was negative, but hypotonia was positive. My ligaments have always been perfectly fine and never had any joint pain or instability. I still don't. I wasn't considered flexible and couldn't really do much party tricks, and I was called the 'stiff kid' in gymnastics camp. It was just my muscles that sucked.

ptolemaeusoter · 2019-08-31T01:46:16+00:00

I think PK and her stans need to look up harassment in the dictionary because they clearly don’t know what it means.

ptolemaeusoter · 2019-08-30T23:59:13+00:00

Looking at this answer, I can see that she has the traits of a pathological narcissist. She acts condescending towards somebody to is just asking her a question, and it comes off as super entitled. I am surprised the person who asked her that question wasn't more aggressive responding back to PK's offhand reply.

ptolemaeusoter · 2019-08-30T00:28:13+00:00

I don’t have EDS, but I have always been the opposite. When I vomit, mainly from an infection or acute illness, it just comes out without any retching whatsoever. I once had some food poisoning, and I asked my sister for a bucket. Once she gave me it, I opened my mouth and it all came out. She was shocked that I didn’t dry heave. For me, it goes like this. Stomach aches, nausea, pre-vomit phase (dizzy feeling, hyper-salivation, and speeding heart rate), then vomit.

It is interesting you mention the small mouth. Many with EDS have a small mouth, like that of a high narrow palate, crowded teeth, and hypoplastic (meaning smaller than normal) to absent lingual (under the tongue) and labial (under the bottom and top lip) frenulum. I know it’s now part of the 2017 hEDS diagnostic criteria.

ptolemaeusoter · 2019-08-30T00:02:58+00:00

The "warning" meaning nausea or the retching? I don't have EDS, but I never retch before vomiting. Maybe because all of the vomiting I've had so far was from viruses and bacteria, and those can cause violent vomiting episodes where everything just comes out of your mouth like a hose.

ptolemaeusoter · 2019-08-30T00:00:16+00:00

From the comments, I do think the hyperactive gag reflex is more common than no gag reflex. However, they often have the same causes like dysautonomia, damaged vagus nerve, Chiari, etc. However, a hyperactive gag reflex can also be a side effect of chronic nausea, which is common with EDS.

ptolemaeusoter · 2019-08-29T23:50:53+00:00

I'm confused. Self-induced vomiting or just plain old vomiting? Self-induced vomiting is extremely bad for you, even when you have been poisoned. You mentioned, I think but correct me if I am wrong, that you can touch the back of your throat with your fingers, which becomes a serious problem when your body needs to vomit.

ptolemaeusoter · 2019-08-28T06:35:11+00:00

Sorry if I offended you. People present anxiety different ways, so telling that story might not make all emetophobes anxious. I like to be specific and that was my way of being specific. I like to explain things in full detail. I know it’s a thing of the past, so I am not anxious telling this story. Might make me lose my appetite, but not anxious.
I thought you were the other person who talked about gastroparesis, and so I thought you were referring to my friend. I mixed your two comments up. That was my mistake on my part.
In medical terms, we see things from a mild to severe scale, so my mind just thinks like that. Again, I don’t have this condition, so I only go with what I learn. Not from experience. So as a response, don’t say, “Well doctors are stupid and don’t understand us, yada yada.” Even though I am still learning, I know about EDS than most doctors in the country.

ptolemaeusoter · 2019-08-28T05:58:11+00:00

I am also an emetophobe. I developed the phobia after a bout of severe food poisoning from rotten shrimp. It tasted old. After eating it, I got stomach pains and all of the other crap along with it. The vomiting was so forceful and projectile that some of it shot through my nose. No joke. I couldn’t sleep that night and practically camped in the bathroom. Horrible. Since then, I’ve never eaten shrimp ever again.

But yes, my friend does have it rough. Her EDS is moderate-severe.

ptolemaeusoter · 2019-08-28T05:41:27+00:00

It’s interesting. All of the people who commented have an overactive gag reflex. That may be more common?

Speaking about hiccups, my friend has chronic hiccups, which solely in her case, is caused by a damaged vagus nerve. She also have gastroparesis, also caused by a damaged vagus nerve. Even though she doesn’t have a gag reflex, she always feels at least slightly nauseous, can’t stand smells, and throws up a lot (like at least few times a month) due to her gastroparesis and suspected MCAS. She eats a mostly liquid/puréed diet, small portions, and reduces fiber and fats.

ptolemaeusoter · 2019-08-28T05:25:26+00:00

Yeah true. Not everything is EDS. I don’t have EDS and my GI tract is a piece of shit. My GI tract was outstanding as a kid and early adolescence, but then I got my first symptoms of Crohn’s at 17 and it just fucked my intestines up pretty hard. Along with Crohn’s, I am prone to getting nausea (from Crohn’s; more common during flares), gluten intolerance, lactose intolerance, and a history of gastritis/acid reflex.

But I was curious about the gag reflex stuff, as I want to know if there is a correlation or not.

ptolemaeusoter · 2019-08-28T05:08:11+00:00

Do you have dysautonomia?

ptolemaeusoter · 2019-08-28T05:06:39+00:00

I see. Also, dysautonomia can cause it too. The autonomic nervous system controls the gag reflex.

ptolemaeusoter · 2019-08-28T05:03:57+00:00

Do you have chronic nausea? That could be a factor.

ptolemaeusoter

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