created a poll in Ehlers-Danlos Uncensored.

%d comments
  • they just released some stuff at the conferece with ednf going over this exact thing they have found several kids that were being treated for adhd, bipolar and all sorts of menta dx's when they were actually just eds.....the person doc who talks about this says its linked with the inability to sleep or rest well which in turn causes the body to produce adriniln to compensate the lack of sleep the body cant rest due to the eds symptoms so it creates extra adrenilyn spelling butcherd i know but you know what im trying to say here...they are treating symptoms of eds instead of treating the eds they found that in a large number of these kids putting them on sleeping meds completly reversed the problem they were no longer adhd or considered bipolar and this is a school problem becuase schools want these kids medicated therefore they are medicated and parents listen becuase they see them as professionals when truly their overlooking the actual problem. So if eds runs in your family you need to create a dialoge with yoru child of how they sleep and what their bodies feel like and actually treat the problem.

  • I do not have any children of my own but my brother's son is autistic.

  • So there seems to be an association between EDS and the sensory/spectrum/behavior issues. But I wonder if the EDS makes us and our kids act different. For kids their bodies feel weird and they act out because they don't know what to do with those feelings.

    I do believe that kids with low tone/hypotonia can be sensory seakers. My son needs so much more sensory input to feel the sensation due to his low tone. But then on the other hand when he's reached his limit, he can tolerate much stimulation at all. Like loud noises.

    I just wish I didn't pass this lousy EDS to my son. It's not fun watching him have to feel do different.

  • I know I keep talking about chiari here, but in the eds/chiari overlap folks some of these diagnoses are directly and easily explained by the chiari. Chiari can cause small seizures, mess with your awake/asleep signals, etc. It often leads to a misdiagnosis of being bipolar, or panic attacks. Turns out I just get partials after years of going through the "you're a woman, you must have an anxiety disorder" crap. I think the EDS has to do with some of the sensory issues though, and sensitivities. I know I have them and have since I was a kid.

  • Betsy my son cody has redacted never endings therefore he does not feel pain the way we do i know its different from what your saying but the same theory applies....if i hit my thumb with a hammer it hurts like hell....if he hits his thumb with a hammer its like no big thing...he is full blown eds and he hurts himself all the time and doesnt realize it untill it gets to deep tissue...he is all the time pushing the envelope to show that eds is not getting him the way it does me the other day it resulted in him playing basketball for ten hours straight and he broke three bones....i told him this is getting out of hand...last night he was walking from the living room to dining room and there is a step up that you have to take and he said UGH very low and i said what was that about he said what? i said that UGH! are you in pain he said NO, i dont know why i said it....I said ok well i started watching and notice that everytime he takes that step up he makes a pain sound very low kinda under the breath and i sat him down and said son something is hurting you wehn you step up and your not realizing it and so we went over to the step and had to discuss what he was feeling when he stepped up and by the time we were done we realized he had a sublaxed hip it was just not bad enough to visually notice but when we got it lined back up he was fine no more stresses me alot because pain is our bodys way of saying slow down and cody does have A LOT of pain but by the time it turns into something he feels its already gone past being soemthing that can be simply remidied it is something that requires severe medical treatment. When he broke his ankle and foot in three places he was walking around like it was no big deal it was swelling and turning purple and i basically had to force him to go to the doctor then they put him in a cast and he was miserable he said point blank momma it couldnt be that bad i was walking on it......but untill the swelling became so bad that it was serious enough for him to say hey im hurt the dammage was already done.

  • Alyssa see your describing exactly what i am saying they always try to figure out how to make it into a mental illness when its a physical illness chari causes a domino effect of problems just like eds does and once the dominoes start falling there not stopping till the entire maze is blown to when these kids are having adhd bipolar or schizophrenic issues then all bases need to be covered to make sure its not a physical disability causing psychological symptoms.

  • Yes, the Pocinki presentation is enlightening. I don't have Chiari, but I manifest a lot of symptoms that seem to come from adrenaline. And have since childhood. And when they checked my levels for my PCOS diagnosis over 20 years, my adrenals were way high. When I see my rheumy in October I plan to discuss beta blockers with him based on Pocinki's theories. If anyone wants to see the PDF of his slide presentation, I have it.

  • We both have high pain tolerances and very few pain medications work. Some of the other weird quirks are no food can touch on the plate, meals alone because with the ear sensitivity one can hear all the other sounds and can't be tolerated, food textures are a huge issue. Weird, huh. I think we just made our own *rules* for everything but didn't bother speaking it out so much and now we are seeing there are issues and talk about our weirdness now that we understand what it is.

  • Cyrilla please do post the slides in here i saw it in ladies only but did not save it. I this this question is smack on target for what the presentation talks about

  • Done!