View Full Version : anyone want a challenge? link between ADHD & Ehlers-Danlos


agirlandherdogs
04-24-14, 10:00 PM
ADHD and Ehlers-Danlos Syndrome? There seems to be a handful of people that think there is a link ... I have no clue how that would be.. I know there are several people here that can wrap their scattered brains around this concept much better than me. If you do can you break it down for me? I'm pretty much a mess lately with this new diagnosis ...

thanks
Amy

Greyhound1
04-25-14, 12:17 AM
ADHD and Ehlers-Danlos Syndrome? There seems to be a handful of people that think there is a link ... I have no clue how that would be.. I know there are several people here that can wrap their scattered brains around this concept much better than me. If you do can you break it down for me? I'm pretty much a mess lately with this new diagnosis ...

thanks
Amy

Great question Amy! I wondered about a connection today after my EDS diagnosis.

I asked to have this thread moved to Science because there are a lot of very intelligent people in here. Please post any thoughts or links you believe could exist. Thanks,
Hound

SB_UK
04-25-14, 03:30 AM
Connection between another connective tissue type monogenic disorder and ADHD.
http://understandingwilliamssyndrome.blogspot.co.uk/2012/09/williams-syndrome-behavior-profile-adhd.html

Elastin - not Collagen.

Why are these 2 proteins often mentioned together ?
http://www.annmariegianni.com/whats-difference-collagen-elastin/

SB_UK
04-25-14, 03:47 AM
http://przyrbwn.icm.edu.pl/APP/PDF/118/a118z1p12.pdf
Heating of collagen leads to denaturation, glass transition and water release, which are reflected in changes of electrical conductivity ... ...

Collagen, Elastin - major protein components of body.

First thought - something to do with electrical properties of body ?

immabum
04-25-14, 04:05 AM
there is an overlap with chronic fatigue/sleep disturbances and anxiety (especially amongst the hypermobility type) which would likely affect ones ability to focus. Comorbid anxiety could be part of the link.

Greyhound1
04-25-14, 01:27 PM
http://przyrbwn.icm.edu.pl/APP/PDF/118/a118z1p12.pdf


Collagen, Elastin - major protein components of body.

First thought - something to do with electrical properties of body ?

Thank you for your research and your posts. It has given me a lot of food for thought.

Greyhound1
04-25-14, 01:30 PM
there is an overlap with chronic fatigue/sleep disturbances and anxiety (especially amongst the hypermobility type) which would likely affect ones ability to focus. Comorbid anxiety could be part of the link.

That is an interesting point. I have ADHD, co morbid anxiety, EDS, Raynauld's syndrome and sleep issues. It feels like they are somehow interconnected.

dvdnvwls
04-25-14, 01:38 PM
Greyhound: Is Raynaud's something you already had before ADHD medication? Was it changed by medication? (I guess by this I'm assuming you take stimulant meds for ADHD.)

Greyhound1
04-25-14, 02:28 PM
Greyhound: Is Raynaud's something you already had before ADHD medication? Was it changed by medication? (I guess by this I'm assuming you take stimulant meds for ADHD.)

Yes, I have always had severe Raynauld symptoms but just recently discovered it was a syndrome. Adderall doesn't seem to effect it one way or another.

daveddd
04-25-14, 02:32 PM
I can't link it. But like Williams that SB pointed outt

Fragile x is a monogenic tissue connectivity disorder with a 95 percent ADHD rate

agirlandherdogs
04-26-14, 09:04 PM
That is an interesting point. I have ADHD, co morbid anxiety, EDS, Raynauld's syndrome and sleep issues. It feels like they are somehow interconnected.


I do not have anxiety, unless it's when I'm taking an exam and getting the result, but that's IT :). I only developed insomnia related to early menopause ...

I'm riddled with osteo issues however!

Greyhound1
04-26-14, 11:44 PM
I do not have anxiety, unless it's when I'm taking an exam and getting the result, but that's IT :).

I'm riddled with osteo issues however!

Every year I am getting more and more arthritis issues. Especially in my larger joints and lower back. Do your joints crack frequently, is that an EDS trait? I have to frequently crack my joints or they get stiff and painful. They are just so loose. Something cracks about every time I get up or move.

That's great you don't have the anxiety. Mine has been pretty high since my diagnosis. Just waiting on the unknown until they determine which subtype I have is stressful.

It appears that I have a lot of traits from types 1,2,3 and 4. Not knowing which one I have causes me lots of anxiety and distress. I just need to know ASAP so I can quit thinking about all of the "what ifs" and focus on the "what is."

meadd823
04-27-14, 04:58 AM
I have primary Raynauld's , sojourns, Hishmatoes hypothyroid and recently developed arthritis with mine starting in my finger joints - The thing is my mom has all of these also minus sojorns and ADD - I have always have had sleeping issues. I think they accidentally set my internal clock 36 hours days at the factory because I would do much better if the days were longer.


I have started decreasing my gluten intake done wonders for my IBS - however with menopause it is hard to tell about my primary Raynauld's except my feet still have it - Oh how lovely it is to have the top half hot and sweaty and the bottom half cold with purple toes - Heating pad on one end fan on the other, husband on the couch claiming insanity!!!!

TygerSan
04-28-14, 09:10 AM
Some genetic syndromes cause both joint laxity, and ASD-like symptoms (sometimes with associated brain abnormalities that will only show up in an MRI).

While this (http://www.rarechromo.org/information/Chromosome%20%206/6q%20deletions%20from%206q26%20and%206q27%20FTNW.p df) syndrome is a bit more extreme than what we're speculating about here, it does lend some evidence to the idea that joint problems and cognitive problems can be part and parcel of the same genetic disorder.

I also found in a quick search for ADHD and EDS one (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1757176/pdf/v038p00493.pdf) study that found a direct link between ADHD and joint laxity in a chromosomal syndrome. So in terms of direct, genetic linkage of both syndromes, while there *are* syndromes that cause both directly, they are fairly rare.

That said, there are rumblings in the autism community as well, wondering about potential connections, and this connection (http://www.sciencedirect.com/science/article/pii/S0890856709647250) has not completely escaped the attention of the clinical community.

Time will tell whether there are either other inherited conditions that have both connective tissue and cognitive symptoms, be that a chromosomal abnormality or merely a perfect storm of polygenetic inheritance.

Kunga Dorji
01-02-15, 07:49 PM
ADHD and Ehlers-Danlos Syndrome? There seems to be a handful of people that think there is a link ... I have no clue how that would be.. I know there are several people here that can wrap their scattered brains around this concept much better than me. If you do can you break it down for me? I'm pretty much a mess lately with this new diagnosis ...

thanks
Amy

Hi Amy,
this post of yours predates a couple of threads I have started on this subject.
For the record, I work as a family physician, mostly with ADHD patients.
I also have ADHD as do both of my children.
Currently I have out of 100 or so patients on permit about 6 with Ehler's Danlos syndrome, either fully assessed, or still being worked up.
That is a very high number given that the condition supposedly occurs in about 1:5,000 patients.

In September I attended a lecture by a physician who works with Ehler's Danlos and related syndromes and also with patients with orthostatic intolerance (inability to maintain blood flow to the brain while upright).

He gave a very interesting talk- that described a symptom set that, amongst other things, described the symptoms of the low cerebral blood flow caused by the orthostatic intolerance and the secondary sympathetic (stress) response caused by the brain's attempts to upregulate blood flow to it.

One thing that is highly significant is that the stress response preferentially decreases blood flow away from the frontal and temporal lobes in a pattern that is very characteristic of the pattern that is usually seen on SPECT scan.
This switching off of the reasoning brain is an evolutionary advantage when in an emergency situation (one needs to be able to move to brainstem reflexes to get away from threat very fast. Thinking slows down your responses).

In fact the ischaemic symptoms can be broken down to such global symptoms as brain fog, sleepiness and mental dullness, word finding difficulty and into symptoms that are associated with failure of frontal lobe inhibition of various brain networks.
Of most significance is failure to suppress the limbic system- impulsive emotional behaviour, and the "default mode network"- leading to uncontrolled thinking and rumination- and hence the endless busy brain of ADHD.

Then you throw in the symptoms of a stress response- which can include restlessness and fidgetiness, anxiety and anger, and that can describe many more of the hyperactive impulsive symptoms of ADHD.

The bottom line is that the more flexible vein walls in Ehler's Danlos leave an individual much more prone to pooling blood in the veins in the abdomen and the legs when standing or sitting for prolonged periods, especially when unfit or in poor posture. ( The tissue hyperflexibility also predisposes towards poor posture and increases the risk of injuries that may well lead to lack of fitness).

Ehler's Danlos syndrome patients have a cardiovascular system that is inherently more difficult to regulate. ADHD is essentially a disorder of self regulation of attention, emotion and alertness. All these neurological functions are underpinned by the blood supply to the brain. So it makes perfect sense that a connective tissue hyperflexibility syndrome might show up as symptoms of ADHD. People with Ehler's Danlos syndrome, or indeed anyone with connective tissues significantly more flexible that the average inherit a physiological system that is inherently harder to regulate than everyone else's.

I have commented elsewhere that the standard scientific characterisation of ADHD as a genetically based neurodevelopmental disorder is neither science based nor intellectually sound- and the issue of the Ehler's Danlos/ADHD linkage perfectly illustrates the point, because this association cannot be explained by the standard neurologically based model. In fact that model makes the association incomprehensible.

For a fuller discussion of the association look at these 2 links:

http://www.addforums.com/forums/showthread.php?t=165588

https://atlassubluxation.wordpress.com/2014/11/02/adhd-a-proposed-model-of-its-aetiology/

Kunga Dorji
01-02-15, 07:52 PM
I would add that much of the neurological difference seen in ADHD may well be due to the differences in brain maturation in an individual who grows up physiologically less able to attend to things well. After all neuroplastic shaping of the brain depends on focused attention to current tasks while they are being performed.

Kunga Dorji
01-02-15, 07:53 PM
Turk J Rheumatol 2011;26(3):187-192 doi: 10.5152/tjr.2011.029


Original Article


Benign Joint Hypermobility Syndrome in Patients with Attention Deficit/Hyperactivity Disorders
Dikkat Eksikliği/Hiperaktivite Bozukluğu olan Hastalarda Benign Eklem Hipermobilite Sendromu
Şebnem KOLDAŞ DOĞAN,1 Yasemen TANER,2 Deniz EVCİK1
1Department of Physical Medicine and Rehabilitation, Medical Faculty of Ufuk University, Ankara, Turkey; 2Department of Psychiatry, Medical Faculty of Ufuk University, Ankara, Turkey

daveddd
01-02-15, 09:28 PM
KD

some of these genetic tissue connectivity disorders involve a mitrol valve prolapse

i think that can cause changes in parasympathetic tones?

could that play a role in self regulation disorders?

Skyf@ll
01-03-15, 12:09 AM
Every year I am getting more and more arthritis issues. Especially in my larger joints and lower back. Do your joints crack frequently, is that an EDS trait? I have to frequently crack my joints or they get stiff and painful. They are just so loose. Something cracks about every time I get up or move.

That's great you don't have the anxiety. Mine has been pretty high since my diagnosis. Just waiting on the unknown until they determine which subtype I have is stressful.

It appears that I have a lot of traits from types 1,2,3 and 4. Not knowing which one I have causes me lots of anxiety and distress. I just need to know ASAP so I can quit thinking about all of the "what ifs" and focus on the "what is."

Don't worry Greyhound...remember we can think about these things far too much.

I can remember as far back when I was 8 years old and every time I went into the squat position my joints cracked.

Arthritis runs in my family....but I think it goes to f-f. I got a medical recently with the grip test and they basically says I could crush a grapefruit with my bare hands...

My joints still crack all the time!!!

Don't worry....

Greyhound1
01-03-15, 12:20 AM
Don't worry Greyhound...remember we can think about these things far too much.

I can remember as far back when I was 8 years old and every time I went into the squat position my joints cracked.

Arthritis runs in my family....but I think it goes to f-f. I got a medical recently with the grip test and they basically says I could crush a grapefruit with my bare hands...

My joints still crack all the time!!!

Don't worry....

Thanks Skyfall, I appreciate your concern. My anxiety at the time concerned my recent diagnosis of Ehlers Danlos Syndrome. There are different subtypes and mine is unknown.

Having arthritis and joints cracking are just symptoms I deal with along with others. I can dislocate most of my joints easily as well. It's all related to my EDS. My joints are super flexible.

Skyf@ll
01-03-15, 12:33 AM
Thanks Skyfall, I appreciate your concern. My anxiety at the time concerned my recent diagnosis of Ehlers Danlos Syndrome. There are different subtypes and mine is unknown.

Having arthritis and joints cracking are just symptoms I deal with along with others. I can dislocate most of my joints easily as well. It's all related to my EDS. My joints are super flexible.

In that case I cant comment on that my friend, I was just hoping that it was the same thing I experienced so I could give advice.

take care

Greyhound1
01-03-15, 12:40 AM
In that case I cant comment on that my friend, I was just hoping that it was the same thing I experienced so I could give advice.

take care

Thanks for trying my friend! I am glad you don't have to worry about EDS. :)

What's your experience with cracking joints and arthritis?