Ehlers Danlos & Neurodiversity Research

I’m so excited, a friend of a friend just shared all this:

Dr. Eccles specific research areas are Neuroscience, Psychiatric and neurodevelopmental features of connective tissue disorders, Mechanisms of chronic pain and fatigue.

The quickest way to see a summary of all her 67 published medical research with active links to each is here: https://www.researchgate.net/profile/Jessica-Eccles-3

Some titles of pubs just within the last 2 years:

  • Towards a Neurodiversity-Affirmative Approach for an Over-Represented and Under-Recognised Population: Autistic Adults in Outpatient Psychiatry
  • Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain
  • Variant connective tissue (joint hypermobility) and dysautonomia are associated with multimorbidity at the intersection between physical and psychological health
  • Connecting brain and body: Transdiagnostic relevance of connective tissue variants to neuropsychiatric symptom expression

You Tube Videos:

Scripts to Self Advocate with Doctors

  • You see WNL or your health care provider says results are “Within Normal Limits”
    • What demographic was used to establish the normal limits? Are you in that demographic? If no, then more information is needed.
    • If yes, what is the bell curve and where are you on it?

For example: I was WNL for thyroid hormone, and my IVF doctor put me one thyroid hormone replacement therapy because they had found an effect on fertility at “sub-clinical” (WNL but the low end of the bell curve) levels. It cleared up the fatigue I had developed in the prior year even though my thyroid had been checked when the fatigue flared up, so that “couldn’t” be the cause. Except it was.

  • “The test result is slightly abnormal, and it could be several things.”
    • Reply: Ok, so best case it’s nothing, what’s the worst case and the most common case – if those are two separate things? And what’s the next step to rule out (find the differential diagnosis) the worst case scenario?
  • You need an ESR test.
    • The ESR (erythrocyte sedimentation rate) test measures inflammation. Just refuse it and probably go find a new doctor. As far as I can tell ALL illness is caused by inflammation and there is no such thing as “all in your head” meaning not in your body. Your brain has incredible control over your body, so it might be causing the problems, but the ESR test won’t really help direct you.
  • You need a full body CAT scan.
    • I would refuse it, it’s just radiation and the doctor having no clue where to focus. Find someone with a clue. Unless you’re doing it for a research study, in which case, awesome, thank you and how do I sign up? 😀
  • When picking a surgeon, ask:
    • how many of that specific surgery they have done total and annually for the past 3-5 years.
    • what their worst outcomes have been. If they don’t have any, I wouldn’t trust them. Either they are hiding inexperience, or they haven’t done enough to come across a hard case.
    • what the worst possible outcome might be, say with a less experienced surgeon – (look up the answer either before or write it down to look up after so you can verify if they actually know and are willing to tell you the risks)

For example, I asked Dr. Zaghi of the Breathe Institute and his worst cases were some excessive bleeding and having to go back and redo the surgery. He also acknowledged that permanent nerve damage and pain was a possibility even though he’d never had that outcome before.

  • “medically unexplained but not dangerous”
    • This means that they don’t know the explanation, not that one doesn’t exist
    • how do they know it’s not dangerous if it’s unexplained?

This is a great one:

What They Say vs. What They Mean: How Doctors and Patients Miscommunicate | National Headache Foundation (headaches.org)

Assume every medical worker is Neurodivergent – bring a list of questions in order of highest to lowest urgency. Urgency should be based on how much/often it impacts your ability to perform activities of daily living.

References:

What Your Doctor Really Means When He Says . . . (menshealth.com)

How do doctors determine that symptoms are medically unexplained? (healthtap.com)

Autistic Inertia vs ADHD?

PDA and/or ADHD (executive function problems) – It took reading a bunch of comments to realize that Autistic Inertia is probably just comorbid ADHD executive function challenges.

How to ADHD on YouTube has a lot of great videos on various ways to manage problems like this. Wall of Awful, Motivation Bridge, Procrastination, tools like SunSama, Pomodoros, Bullet Journals, body doubling (co-regulation for adults), accountability buddies

More of the same:

What is autistic inertia? https://autismawarenesscentre.com/what-is-autistic-inertia/

I’m not sure that giving things a new name is helpful. It’s executive function difficulties no matter what the “reason” is and know that means it’s easier to find solutions.

Trauma Journal

I want to explore adding back the Adderall as the first most important change to my medications now that I’m out of the hospital.

I think restarting at the lowest dose once a day is fine and working back up from there.

I can keep taking the Depakote without triggering a histamine dump if I loosen the gel caps, take 5 at a time with food or a protein shake and then wait 30-60 for the next dose and snack. It’s only a mildly annoying hassle that I’d like to get rid of once my psychiatrist and I can agree it’s not doing anything for me.

Now that this is the first time I’ve gone without any stimulant medication for more than a weekend – I realize how much it helps me slow down and focus. I also don’t want to risk driving without my Adderall available, which is drastically increasing my support needs. I’m lucky to have support, but not everyone does, so I’m hoping documenting this and educating more medical professionals will help someone else.

I am really sad that I have to spend most of my days hiding away from my nuclear family because I can’t focus well enough to be kind and communicate clearly. I’m home and yet I still miss them. This is the first thing I remember being sad enough about to cry about since coming home. Definitely the experience was traumatic, but I had a traumatic childhood and didn’t even realize it until this year, so trauma is something I’m used to coping with.

When ADHD Medication Wears Off – TotallyADD Why I have to avoid my loved ones right now. 🙁

Adjusting

Life changing chiropractic for about $20:

Dr. Ruch’s books (WAY cheaper than an adjustment):

Knees: AmazonSmile: GOT KNEE PAIN? Where is Your Tibia?: 9781977224149: Ruch, William: Books

Hips/pelvis (as important as the spine since they mess up everything else if they are off – it’s not just for birthing): The Level Pelvis Method: for Pregnancy and Birthing Ease – Kindle edition by Ruch DC, Dr. William J.. Health, Fitness & Dieting Kindle eBooks @ AmazonSmile.

Slooooooow it down: eating

Infographics video – processed foods taste good when eaten quickly and not so good when eaten slowly. I would guess that eating slowly makes it easier to taste the various additives.

Chew a bite of food 10 times (aim for 5-10 seconds) – it can reduce the desire for processed food. Unprocessed foods – chewing for at least 10 seconds helps unlock more nutrients and makes it easier to digest the food.

Obesity wasn’t a thing until 1800s, recognized as deadly mid 1900s? Ted Ed

1 hour activity daily kids?

average time daily eating 1.75 hr (ex. Spain meals 1 hour usually, up to 2 with family)

If meals are an hour – and you chew thoroughly and slowly – then you have time for questions and stories. Ask a question, take a bite, chew slowly and focus on listening to the answer. This avoids interrupting, eating with mouth open (small bites make it easier to close mouth), or talking with food in your mouth.

We use “chew, chew, swallow” to encourage finishing a bite before talking. We also wait until the person is done to say or ask anything to reinforce that slowing down didn’t cause them to lose their train of thought or their place in the conversation.

Small bites, lots of chewing. Put down utensils between bites. Wipe hands on napkins. Sip water between bites. Chewing slowly preps your digestive track – if you swallow before food is completely crushed and mixed with saliva, it won’t digest as well and could lead to heartburn, constipation, indigestion. Lack of chewing can lead to gastroparesis because there wasn’t enough chewing to signal stomach acid production. Or it can contribute to SIBO (small intestine bacterial overgrowth) because things don’t get moved through as quickly as they should either because the system wasn’t revved up or the food was harder to move. Things moving through the system slower also leaves it more open to fermentation or contributing to gut permeability and inflammation.

TLDR; Take small bites, chew at least 10 times and aim to completely liquify the bite by thoroughly mixing it with saliva before swallowing.

Self – You’re the problem

While I can’t dismiss that there are more influences than just me, I’m finding again and again that whatever maladaptive thing the kiddo is doing, if I slow down and ask where it came from? It me. /facepalm

Tries to solve perceived problems without help? Yup

Ignores or hides pain instead of sharing and asking for help? Yup

Assume the worst or focus on what is missing instead of what is there? Yeah. I’ve been aware of and working on this, and I realize now I still have a loooooooooooooooooooooooooooooong way to go.

Ignore other people’s boundaries if they aren’t clear and direct? Ugh, yup! They should still be clear and direct. And I could tell people that I need them to be clear and direct so I don’t miss what they are trying to communicate.

Not express my boundaries clearly, kindly and firmly? Definitely me.

Struggles to do things that are boring or anxiety inducting? Oh heck yeah that’s me.

And now I think my meds have worn off cause I’m ready to keel over and sleep. On the plus side, the ice pack and stretches have helped my head pain.

Self-Care

I woke up at 5 in a lot of pain. I realized that to learn to be vulnerable I needed to learn to stop masking my physical pain.

I started writing out my pain stories. I started to get sleepy which usually happens when I’m REALLY trying to avoid something. My rib was really painful though and heat wasn’t helping. I was able to play some YouTube videos that gave me some instant pain relief.

Next step, how do I make sure I actually do exercises regularly?

I need to work dance/song into it. Probably sing the instructions while doing the exercises to turn them into dance moves. Also get out the foam roller.

And I need to set up a music playlist to move me through the day.

I can do the wall arm one while I supervise my geriatric cat eating. And the shoulder squeeze I can do anytime and helps with the pain right away.

Are you impatient, or is it anxiety?

So I started taking anxiety meds not because I thought I needed them (because anxiety is a lying turd), but because I was willing to try anything to help with occasionally yelling at my kiddo. I knew that no matter how “necessary” it felt, it was still also harmful.

Holy beans but was I anxious!!!! And until I went on the meds I couldn’t tell. I magically (pharmaceutically) had so much patience!