Your discussion of medicine and psychiatry of medicine and psychiatry conflating classificatory and diagnostic labels reminds me of a conversation I had recently with my uncle... my aunt and their son are both psychotic but have different diagnoses with my aunt technically only being diagnosed bipolar despite her tendencies to scream at poles for hours. My cousin is only diagnosed schizophrenic. Presumably both are caused by the same genetic markers but the cause is so little known. I suspect they are just applying many labels to the same underlying cause, with slightly different expressions. I imagine psychosis is particularly hard to study just because paranoia makes patients less likely to cooperate; my uncle commented on my aunt neglected to mention many things to her doctor. I have paranoid tendencies which most resemble what I've heard of Cluster A personality disorders, probably also caused by similar genetic markers. But when I did briefly see a therapist about it when I was 18, they wanted to diagnose me with things as diverse as autism (because I was socially awkward, because I didn't talk to people because I was convinced they would stab me), OCD, depression, anxiety and schizophrenia. She was convinced I would devolve into a schizophrenic unless I took antipsychotics (which I read up on, convincing me not to take them). I ultimately became largely functional even though some of those tendencies remain.
Interesting. I score a 9 of 9 on the Breighton test and also have scoliosis, stretchy skin and probably have narcolepsy (at least something has always been screwed with my sleep and I get sleep paralysis regularly). I have never bothered trying to get any of this diagnosed or done anything about any of it, because my understanding is that there's nothing to be done. I meant except for the scoliosis which they diagnosed in school when they tested everyone for it for some reason...also mysterious given there was nothing they could do about that, either.
I'm not inclined to get diagnoses for things they have no treatments for. Get to the age where you might want to buy life or disability insurance and you will find out they will deny you for having stuff like that in your medical record (at least in the US).
Fwiw, I started taking joint supplements three months ago (just the standard Glucosamine and Chondroitin) and after two months I noticed an improvement. Could be placebo effect.
Interesting article, EDS / connective tissue spectrum stuff is very far from rare in my adhd clinic, most of my female patients feature on Beighton/somatic scale and scores indicating likely EDS common. And yes having bendy connective tissue brings other issues chronic constipation, haemorrhoids, orthostatic hypotension, foot issues, gait, biomechanical, dental. It's not diagnosable from genetic data I believe apart from the rare really awful types, none of those in my clinic. I advise my patients not to seek diagnosis as medicine can't help, fluids electrolytes compression wear, podiatry assessment, joint supports for sport/upright, stimulant laxatives, stool softeners, and of course I do wonder if perha[s ADHD language processing issues might relate to bendy brain in some way. I think if it was recognised as a slightly different type of human it wouldn't be such a problem for most. I'm looking at starting to use LDN for some of my very complex patients. Ehler's Danlos society is amazing great support groups and educational resources,Good luck,
The only advantage of being diagnosed that I have experienced is access to low dose naltrexone (for which there is basically no evidence) and low dose amitryptaline (for which the evidence is quite poor), from which I do get decent pain relief. I understand the 2017 criteria for hEDS will likely change with the conclusion of HEDGE at the end of the year, with the Beighton criteria specifically being reviewed.
On a side note, I think it's likely I do not have EDS. The fact that my siblings have elevated (but not similarly elevated) hypermobility suggests the connective tissue dysfunction is polygenically caused. If it was primarily monogenic, then they would either be similar to me or not at all.
Perhaps your parents fed you the gum gum fruit and you dont remember
Your discussion of medicine and psychiatry of medicine and psychiatry conflating classificatory and diagnostic labels reminds me of a conversation I had recently with my uncle... my aunt and their son are both psychotic but have different diagnoses with my aunt technically only being diagnosed bipolar despite her tendencies to scream at poles for hours. My cousin is only diagnosed schizophrenic. Presumably both are caused by the same genetic markers but the cause is so little known. I suspect they are just applying many labels to the same underlying cause, with slightly different expressions. I imagine psychosis is particularly hard to study just because paranoia makes patients less likely to cooperate; my uncle commented on my aunt neglected to mention many things to her doctor. I have paranoid tendencies which most resemble what I've heard of Cluster A personality disorders, probably also caused by similar genetic markers. But when I did briefly see a therapist about it when I was 18, they wanted to diagnose me with things as diverse as autism (because I was socially awkward, because I didn't talk to people because I was convinced they would stab me), OCD, depression, anxiety and schizophrenia. She was convinced I would devolve into a schizophrenic unless I took antipsychotics (which I read up on, convincing me not to take them). I ultimately became largely functional even though some of those tendencies remain.
Interesting. I score a 9 of 9 on the Breighton test and also have scoliosis, stretchy skin and probably have narcolepsy (at least something has always been screwed with my sleep and I get sleep paralysis regularly). I have never bothered trying to get any of this diagnosed or done anything about any of it, because my understanding is that there's nothing to be done. I meant except for the scoliosis which they diagnosed in school when they tested everyone for it for some reason...also mysterious given there was nothing they could do about that, either.
I'm not inclined to get diagnoses for things they have no treatments for. Get to the age where you might want to buy life or disability insurance and you will find out they will deny you for having stuff like that in your medical record (at least in the US).
Fwiw, I started taking joint supplements three months ago (just the standard Glucosamine and Chondroitin) and after two months I noticed an improvement. Could be placebo effect.
Interesting article, EDS / connective tissue spectrum stuff is very far from rare in my adhd clinic, most of my female patients feature on Beighton/somatic scale and scores indicating likely EDS common. And yes having bendy connective tissue brings other issues chronic constipation, haemorrhoids, orthostatic hypotension, foot issues, gait, biomechanical, dental. It's not diagnosable from genetic data I believe apart from the rare really awful types, none of those in my clinic. I advise my patients not to seek diagnosis as medicine can't help, fluids electrolytes compression wear, podiatry assessment, joint supports for sport/upright, stimulant laxatives, stool softeners, and of course I do wonder if perha[s ADHD language processing issues might relate to bendy brain in some way. I think if it was recognised as a slightly different type of human it wouldn't be such a problem for most. I'm looking at starting to use LDN for some of my very complex patients. Ehler's Danlos society is amazing great support groups and educational resources,Good luck,
The only advantage of being diagnosed that I have experienced is access to low dose naltrexone (for which there is basically no evidence) and low dose amitryptaline (for which the evidence is quite poor), from which I do get decent pain relief. I understand the 2017 criteria for hEDS will likely change with the conclusion of HEDGE at the end of the year, with the Beighton criteria specifically being reviewed.
The good news is, depending on your EDS type, you may be a hyper-responder to jelqing.
I think I'll leave that hypothesis untested.
On a side note, I think it's likely I do not have EDS. The fact that my siblings have elevated (but not similarly elevated) hypermobility suggests the connective tissue dysfunction is polygenically caused. If it was primarily monogenic, then they would either be similar to me or not at all.