Thank you so much for trying to educate others who just don't get it and validate those who do. It is one of the most frustrating, and lonely experiences for people to constantly misunderstand or misinterpret you. I am constantly trying to explain myself to others as to how my condition causes my heightened adrenaline which leads to anxiety, brain fog, distractibility, etc. Ive been diagnosed with ADHD, ASD, GAD, sensory processing disorder and on and on. Referrals to psychiatrists or counseling don't help when it's an actual biological issue (although not a bad idea because by the time you've been diagnosed with EDS you've likely been misdiagnosed or told it was all in your head for many many years before actually seeing a geneticist)
The reason so many with EDS have depression and anxiety stems from how we have been treated by the medical community. Show the medical community how they treat us zebras and we have medical PTSD after constantly being dismissed. Then we end up with depression from either being dismissed or being constantly ill and in pain. EDS comes first, the depression and anxiety comes later for most. I don’t think a lot of zebras would have these psychiatric illnesses any more prevalent than the normie population if we weren’t so dismissed by the medical community. 🦓🥄🦓🥄🦓
I just came from my family Doctor who is treating both my son and myself. I am so distressed and can hardly get the words down at the moment, as I am shaking... But I have always been double-jointed, or something, since childhood...maybe hypermobile. But my son was diagnosed with Hypermobility syndrome by his Chiropractor. My 20-year-old son was crying and pleading for help from our Doctor, to help him with this constant pain anxiety and depression and suicidal attempts He told him to get a hobby or something, That he does nothing to help himself. My son cried out he just wants to die. Just cut his throat: He said that is one way out! He also went on to say that his ex abusive father, that we left has won! And beaten my son. I could not believe my ears. That you putting this together and your research.
You poor thing That is worthy of reporting . We are born to be predisposed to anxiety . Anxiety has ruined my life. I Have had several breakdowns , normally after trauma Our fight / flight is over reactive . I am anxious now I may not be in two hours . I found ballet age 7 When I am in a dance studio I have no anxiety If my sister picks on me , she leaves and I feel suicidal as she is narcissistic ! She baits me I am strong , but I have anxiety It does not mean weakness Your son I will pray for as if he had got a doctor who treated him seriously , he may be able to control gos anxiety . I still can’t control mine . I try but once it hits I aj confused , feel fearful . I wish you well
I have hEDS, POTS, dyslexia, anxiety(anxiety not confirmed by a professional), sound sensitivity, light sensitivity. Thank you for the research and video.
@@suki-yuki did you get a Davis Series Xray / supine mri and a specialist confirmed it? As Light and sound sensitivity for me occurred after my neck issues started before that it was just hEDS.
@@amit7133 I was about to have a full spine MRI but covid happened. Because I get electric shock type of pain from my neck down my arms, spine and legs. Brain CT scan was fine. Thank you 🌸
Dr. Eccles study is some thing that caught my interest along time ago because of the connectivity to the prevalence of hypermobility Ehlers-Danlos syndrome and autism pots in mast cell activation syndrome they just kind of go together maybe one family member presents with one another and another and they just kind of all cohabitate together somehow…. That anxiety factor
Andethidial bubabibub you need to get a referral to see a geneticist in the US. many people say that a rheumatologist can help, however mine told me she doesn’t treat EDS.
@@Hannah-ih1qj Thanks for good advice. It is a tough road. Geneticists feel good because they validate and empathize before saying he doesn't know where to go for treatment. 2011. I still have not had treatment.. there is hope for the young because we elders have worked hard on this!
Anxiety connected to my EdS hypermobility has been a huge challenge for me and can do a spontaneous power speech on many topics with confidence of Tony Robbins , Trauma though will trigger that faulty fight / flight and lead to what presents as deep depression That said , I do get anxiety , my mouth dries up , hot hot flushing , confusion Sweating , if …. If not on time for important appointment ! My mum had anxiety My daughter and a few other in my mum’s family of 10 boys ,4 girls . Anxiety for me is torture as I can still dance at 63 Confident but I have no control at times. 🌹🌹
I tried to get an appointment to this dr for my daughter but didn't succeed. The fact that it was during lockdown might have had to do with it, of course.
Is 'hypomobility' as well as 'hypermobility' related to neurodivergence and anxiety? I know somebody who is probably neurodivergent who has anxiety, scoliosis, pes cavus and what looks like 'hypomobility'. Interesting that there is a lot of awareness about hypermobility but not hypomobility but surely it is a spectrum where both must exist at either end and cause issues with the joints, even when I have googled 'hypomobility' I get links for 'hypermobility'.
Skarry yes, the rise in health psychology ( specifically pain psychology) can be very damaging. The idea that a child should be able to snap out of pots, eds, chiari or Gp symptoms with “ tough love” can destroy parent/child relationships and self esteem. The lack of resources ( actual pain drs), diagnosis and treatment options lead to the use of gas lighting techniques.
IMPT.. PLS Don’t simply, solely nor *automatically accept* this woman’s usually biased/ very limited genuine knowledge about EDS.. as Gospel! She likes to fit her theories around her psych training W/O input from people whom actually have/ daily live with EDS and what all it does entail! We whom actually Live with EDS/ know inherently what it is like to constantly.. Not be able to simply Assume something as simple as out foot/ ankle.. knee will support us accurately, as we ‘take the next step’.. that if you suddenly find yourself writhing in pain bc your ‘knee/ ankle’ was the slightest bit ‘off’ in some capacity” it subluxed or dislocated putting you in excruciating Pain! (all the while each time this type of thing occurs is leads to more degeneration/ stripping of the gears” so to speak making your future even more precarious/ tenable.. yet so many medical professionals Do Not Listen/ believe us and instead gaslight, blame the issue on the patients weight or If they cannot do that ( for obvious reasons) often blame being.. you got they have psychologically based (mental) Anxiety!, I wonder why after decades of numerous sessions like this we no longer.. Trust! what they say! Anyway this is but one small example. The first few articles I read (years ago) by Eccles put me right off! and I am NOT alone in this thinking/ attitude! her arrogance is appalling!! It wouldn’t be IF she indicated that she was willing to be open to the patient having issues bc more than one possible basis/ cause. Dr.Eccles Please!! Try to open your mind do some research!! that isn’t selective to ‘only being psychiatrically.. schooled/ based!bc IMHO you’re just another major Gaslighter. People please do some research about this/ Various other EDS related issues ..for yourselves Please! consider starting with this video (link below) by Dr. Alan Pocinki (he is highly knowledgeable about EDS.. long been actively involved in reasoning Current/ Accurate Info re truth about what all EDS includes/ entails.. consists of esp in relation to the comorbid health issues.. Watch this video: >> Psychiatric Misdiagnosis in EDS: When is Anxiety Not Anxiety? ruclips.net/video/mBBziPPeI1E/видео.html
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This is incredible! I am a physiotherapist specialising in hypermobility, I have helped alot of people with your content!
OMG mind blown. Why doesn’t the average GP believe this? Taken yrs of pushing to get help and 10yrs later I’m still seeing Dr after Dr who has no idea
Thank you so much for trying to educate others who just don't get it and validate those who do. It is one of the most frustrating, and lonely experiences for people to constantly misunderstand or misinterpret you. I am constantly trying to explain myself to others as to how my condition causes my heightened adrenaline which leads to anxiety, brain fog, distractibility, etc. Ive been diagnosed with ADHD, ASD, GAD, sensory processing disorder and on and on. Referrals to psychiatrists or counseling don't help when it's an actual biological issue (although not a bad idea because by the time you've been diagnosed with EDS you've likely been misdiagnosed or told it was all in your head for many many years before actually seeing a geneticist)
50 years living with this mystery illness with failure to thrive. Thank you for your purposeful work 🙏
The reason so many with EDS have depression and anxiety stems from how we have been treated by the medical community. Show the medical community how they treat us zebras and we have medical PTSD after constantly being dismissed. Then we end up with depression from either being dismissed or being constantly ill and in pain. EDS comes first, the depression and anxiety comes later for most. I don’t think a lot of zebras would have these psychiatric illnesses any more prevalent than the normie population if we weren’t so dismissed by the medical community. 🦓🥄🦓🥄🦓
Exactly!!!!!
I say this all the time .
Yes.
So true
I just came from my family Doctor who is treating both my son and myself. I am so distressed and can hardly get the words down at the moment, as I am shaking... But I have always been double-jointed, or something, since childhood...maybe hypermobile. But my son was diagnosed with Hypermobility syndrome by his Chiropractor. My 20-year-old son was crying and pleading for help from our Doctor, to help him with this constant pain anxiety and depression and suicidal attempts He told him to get a hobby or something, That he does nothing to help himself. My son cried out he just wants to die. Just cut his throat: He said that is one way out! He also went on to say that his ex abusive father, that we left has won! And beaten my son. I could not believe my ears. That you putting this together and your research.
You poor thing
That is worthy of reporting .
We are born to be predisposed to anxiety . Anxiety has ruined my life. I
Have had several breakdowns , normally after trauma
Our fight / flight is over reactive .
I am anxious now
I may not be in two hours .
I found ballet age 7
When I am in a dance studio I have no anxiety
If my sister picks on me , she leaves and I feel suicidal as she is narcissistic !
She baits me
I am strong , but I have anxiety
It does not mean weakness
Your son I will pray for as if he had got a doctor who treated him seriously , he may be able to control gos anxiety .
I still can’t control mine .
I try but once it hits
I aj confused , feel fearful .
I wish you well
70% of this explains my whole life.
Mine as well
@wendyj Ha! Sorry, empathising strongly. I'm sad & angry for myself and others who were misdiagnosed or dismissed for decades.
I have hEDS, POTS, dyslexia, anxiety(anxiety not confirmed by a professional), sound sensitivity, light sensitivity. Thank you for the research and video.
Have you checked for CCI ? Cranio cervical instability, join the facebook group you will learn
@@amit7133 thank you! I've looked into to it before, but I don't think I have it.. 🤔
@@suki-yuki did you get a Davis Series Xray / supine mri and a specialist confirmed it? As Light and sound sensitivity for me occurred after my neck issues started before that it was just hEDS.
@@amit7133 I was about to have a full spine MRI but covid happened. Because I get electric shock type of pain from my neck down my arms, spine and legs. Brain CT scan was fine. Thank you 🌸
@@suki-yuki Ya same here.. delayed everything due to covid. I get same electric shocks upto my left foot. Where are you from?
Ehlers-Danlos Syndromes POTS ADHD Palpitations feeling of dread impaired basal constriction venous pooling. Thank you Dr. Eccles.
I have adhd eds type 3 depression anxiety and ocd. most days are horrible for me. :(
Thank you for doing this valuable research. It helps me feel that I am not alone and that there is hope for the future w.r.t diagnoses and treatment.
Dr. Eccles study is some thing that caught my interest along time ago because of the connectivity to the prevalence of hypermobility Ehlers-Danlos syndrome and autism pots in mast cell activation syndrome they just kind of go together maybe one family member presents with one another and another and they just kind of all cohabitate together somehow…. That anxiety factor
Thank you so much. Ive always bee anxious especially with pain.
My 11 year old daughter has eds hypermobile type. Just got diagnosed with social pragmatic language disorder and anxiety
Where did you go for the diagnosis? Looking for the right doc since yrs
Andethidial bubabibub you need to get a referral to see a geneticist in the US. many people say that a rheumatologist can help, however mine told me she doesn’t treat EDS.
@@Hannah-ih1qj YES MA'AM
@@Hannah-ih1qj Thanks for good advice. It is a tough road. Geneticists feel good because they validate and empathize before saying he doesn't know where to go for treatment. 2011. I still have not had treatment.. there is hope for the young because we elders have worked hard on this!
My geneticist was no help. Said I probably had Ehlers Danlos but refused to diagnose me because "there was no point."
So I guess I'm not dumb and stupid, my illness is causing this. I hope my family would understand this .
Thank you so much... this describes me to a T and I'm gunna bring it up with my doctor. Thank you.
Anxiety connected to my EdS hypermobility has been a huge challenge for me and can do a spontaneous power speech on many topics with confidence of Tony Robbins ,
Trauma though will trigger that faulty fight / flight and lead to what presents as deep depression
That said ,
I do get anxiety , my mouth dries up , hot hot flushing , confusion
Sweating , if …. If not on time for important appointment !
My mum had anxiety
My daughter and a few other in my mum’s family of 10 boys ,4 girls .
Anxiety for me is torture as I can still dance at 63
Confident but I have no control at times. 🌹🌹
Wonderful!
I tried to get an appointment to this dr for my daughter but didn't succeed. The fact that it was during lockdown might have had to do with it, of course.
Thanks for the upload, at least I know now why my heart rate is a steady 130 while standing and 100 lying down xd
Is 'hypomobility' as well as 'hypermobility' related to neurodivergence and anxiety? I know somebody who is probably neurodivergent who has anxiety, scoliosis, pes cavus and what looks like 'hypomobility'. Interesting that there is a lot of awareness about hypermobility but not hypomobility but surely it is a spectrum where both must exist at either end and cause issues with the joints, even when I have googled 'hypomobility' I get links for 'hypermobility'.
We got a referral for a genetic dr for my daughter
I just need to say counseling does not excuse the drs lack of of actually treating and diagnosing.
Can you expand on what you mean?
Skarry yes, the rise in health psychology ( specifically pain psychology) can be very damaging. The idea that a child should be able to snap out of pots, eds, chiari or Gp symptoms with “ tough love” can destroy parent/child relationships and self esteem. The lack of resources ( actual pain drs), diagnosis and treatment options lead to the use of gas lighting techniques.
@@JN-tw7xsI think Drs should be sued for this! They’d soon smarten up with each strike against their practice. I feel your pain!
My life
I am extremely skeptical concerning how you are attempting to treat the two but you have certainly grabbed my attention. I'll be watching.
IMPT.. PLS Don’t simply, solely nor *automatically accept* this woman’s usually biased/ very limited genuine knowledge about EDS.. as Gospel! She likes to fit her theories around her psych training W/O input from people whom actually have/ daily live with EDS and what all it does entail! We whom actually Live with EDS/ know inherently what it is like to constantly.. Not be able to simply Assume something as simple as out foot/ ankle.. knee will support us accurately, as we ‘take the next step’.. that if you suddenly find yourself writhing in pain bc your ‘knee/ ankle’ was the slightest bit ‘off’ in some capacity” it subluxed or dislocated putting you in excruciating Pain! (all the while each time this type of thing occurs is leads to more degeneration/ stripping of the gears” so to speak making your future even more precarious/ tenable.. yet so many medical professionals Do Not Listen/ believe us and instead gaslight, blame the issue on the patients weight or If they cannot do that ( for obvious reasons) often blame being.. you got they have psychologically based (mental) Anxiety!, I wonder why after decades of numerous sessions like this we no longer.. Trust! what they say! Anyway this is but one small example. The first few articles I read (years ago) by Eccles put me right off! and I am NOT alone in this thinking/ attitude! her arrogance is appalling!! It wouldn’t be IF she indicated that she was willing to be open to the patient having issues bc more than one possible basis/ cause. Dr.Eccles Please!! Try to open your mind do some research!! that isn’t selective to ‘only being psychiatrically.. schooled/ based!bc IMHO you’re just another major Gaslighter. People please do some research about this/ Various other EDS related issues ..for yourselves Please! consider starting with this video (link below) by Dr. Alan Pocinki (he is highly knowledgeable about EDS.. long been actively involved in reasoning Current/ Accurate Info re truth about what all EDS includes/ entails.. consists of esp in relation to the comorbid health issues.. Watch this video: >> Psychiatric Misdiagnosis in EDS: When is Anxiety Not Anxiety? ruclips.net/video/mBBziPPeI1E/видео.html