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:

CalFresh

Info Dump mess – I want to come back and split this out to three different things:

  • CalFresh help since clearly there is a bunch of stuff available I found this time that I didn’t last time
  • Yelling at people who need it (I love Penelope Trunk, she yells at the world with her blog and you can pay her for coaching if you want her to yell at you privately, or take her classes if you want her to yell at others while you quietly think about how you needed to hear that – if you have a trauma background, you either are still avoiding being yelled at (read her blog so you can pretend she’s yelling at other people until you can’t resist commenting or taking a class or coaching session), you need to be yelled at but still hate it, or you recognize how helpful it is an love it.

    Oh, Penelope, that’s why we love you even if you think we hate being yelled at.
  • whatever other journal junk I need to clean out of this for those two

Stub

It took three tries requesting a call back on CalWin.

The most important thing I’ve learned recently is to say this:

I’m autistic and I KNOW my questions seem really stupid. I just need your help please.

I couldn’t say that without crying because it sucks to know how smart I CAN be and how stupid I WAS being because I couldn’t function at the moment they called and I knew I HAD to take the call.

I had to pull out a calculator and a blank document on my computer and do the math before they could answer my questions and then I cried again in relief that the solution was so easy.

The math:

If you are disabled and only get SSDI (see note below about cash help)

Then:

SSDI Amount
– Rent (LEASE amount)
– Utility exception of $500+
= Your income

If your income is 0 or negative, then you qualify for the maximum CalFresh benefit.

I had to ask the person three times and say that I was sending cash monthly and had a document in writing to the rental company promising to send the cash amount monthly before I believed them:

IF YOUR FAMILY IS GIVING YOU MONEY and you don’t live with them – THAT IS NOT UNEARNED INCOME.

Your rent is what your LEASE says the person ON THE LEASE owes, not how much of it you pay AFTER any help you receive. Yes, tell them about the help if you are doing the phone interview – so they can reassure you it doesn’t matter.

NO – DO NOT DO ANY MATH for them.

YOU DON’T KNOW THE EQUATIONS.

Or you got someone that sucked at asking questions. More likely, if you’re autistic, have an autistic relative, or think you’re smarter than the person you’re talking to – either you’re not or you’re a jerk.

Being stupid, admitting it and then thanking the person afterwards is better than being a jerk.

I thanked the person very specifically and heard a laugh of pleased surprise.

I know what that laugh sounds like, because I’ve heard it and I’ve made it enough times.

I said something along the lines that I recognized that the job sucked and didn’t pay enough and that they were doing it anyway to help people and to please keep doing it until they found a better way to help people.

Anxiety will lie to you that you can’t trust anyone. If you grew up with trauma, then you will have anxiety because that’s how you survived the trauma of your childhood.

The way you recover is that you figure out that humans are all trying the best they can to survive, and if they have anything left, then they start to thrive.

The way you thrive is to connect. And to connect you find people you want to listen to, or who want to listen to you.

You only need one mutual friend. You can be a friend to someone who needs you as a friend, and you can have friends that you need that don’t need you back. There are so many kinds of friends.

If you journal privately, you’re managing your anxiety.

If you write publicly, then you are sharing your truth just in case it helps ONE other person. So the things you’ve learned and experienced can help someone else the way you wish you had been helped.

Authors are telling the stories they need to tell. Popular authors are telling stories that many people wanted or needed to hear.

The internet has made it so we can tell our stories so many different ways so that any human can find the story they need.

I found the story of the worst of humanity and that I can see and understand the worst thing a human can do and forgive it – because that is how much they suffered and are suffering.

I understand why Nonviolent Communication is the name that author chose. And I understand why people call it NVC because they want to help people who need to learn to communicate, but are too far from pain and trauma to understand it, or too close to tolerate it.

I’m so glad that people exist that can’t even imagine existence being so painful that you don’t want to exist anymore. I was shocked to learn that my father-in-law is one of those people.

Either you understand suicidal ideation, or you don’t.

I don’t know if my husband does. I know I do and I feel sorrow because I think my child does too. I do know my father in law doesn’t. He was so confused when I asked him if he had ever WANTED to die. Like, couldn’t even imagine understanding why any human would want that level of confused.

These people are working for crap pay dealing with us at our worst because they either want to or are willing to help. If you think you’re smart, then recognize that they are the experts here and you need to trust them

You’re not being honest or helpful by “doing the math” for them, you’re giving them the wrong numbers.

Don’t bother trying to call and wait – they have a 500+ backlog as of today and every time I tried to call and wait I was 40+ in the queue and never got to a human before the call dropped after 2+ hours on hold.

Go on CalWin, request a call back on Monday, if you don’t get one or miss the call, request it again the following Monday.

Right now the state has been sending emergency aid and you might have more on your EBT card than you realize, just go try to use it or:

CalFresh EBT Balance and Login – California Food Stamps Help (icaliforniafoodstamps.com)

If you can’t find your card – report it as lost: EBT Card

People are trying to help. And the more ways we try to help, the more people we will help.

When I was functioning, I didn’t find this site, but I did look all this up on my own, so I knew my family member qualified for the maximum and was getting only 1/10th of that amount.

We got a person at some point, and they pointed us at the form to fill out and upload on CalWin so that I can talk on behalf of my family member without them having to be present to give permission each time. You can give any adult you trust permission to apply for you.

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)

Names, Face Blindness and Gait

Are you bad with names or do you have face blindness?

What is face blindness anyway?

Depending upon the degree of impairment, some people with prosopagnosia may only have difficulty recognizing a familiar face; others will be unable to discriminate between unknown faces

Some degree of prosopagnosia is often present in children with autism and Asperger’s syndrome, and may be the cause of their impaired social development. 

…treatment should be to help the individual with prosopagnosia develop compensatory strategies. Adults who have the condition as a result of stroke or brain trauma can be retrained to use other clues to identify individuals.

Prosopagnosia can be socially crippling.  Individuals with the disorder often have difficulty recognizing family members and close friends.  They often use other ways to identify people, such as relying on voice, clothing, or unique physical attributes, but these are not as effective as recognizing a face.  Children with congenital prosopagnosia are born with the disability and have never had a time when they could recognize faces.  Greater awareness of autism, and the autism spectrum disorders, which involve communication impairments such as prosopagnosia, is likely to make the disorder less overlooked in the future.

Prosopagnosia | National Institute of Neurological Disorders and Stroke (nih.gov)

I don’t know if I can recognize faces or if I rely on gait, silhouette, voice, hair, clothing (accessories or style).

I can’t tell if my kiddo has it because when we look at photos either the kiddo doesn’t know who is it or someone has said who it is once ever and now it’s memorized.

Is that why my kiddo had such a strong aversion to live action tv shows and videos for so long?

Is that why I hated when my mom changed her hair style growing up – in addition to it being change, did it also make her harder to recognize?

Is that another reason that a limited wardrobe or a signature accessory is useful/preferred?

Do any of you recognize people by their gait?

This study is telling clinicians to look at how autistic kids walk to figure out how they feel since autistic people have such a hard time saying how we feel.

A friend said: faces have so much information on them that I can’t sort fast enough and I like recognizing people by their gait.

https://www.sciencedirect.com/science/article/pii/S1877050915038065

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.

Tracing collagen through cell adhesion

Laminin – Wikipedia

Basal lamina – Wikipedia

Fibronectin – Wikipedia

The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders – PMC (nih.gov)

Brain-like organoids grown in a dish provide window into autism (medicalxpress.com)

activity & adhesion (see collagen)

Home page – Sensitivity Research

So if 30% of people are environmentally sensitive (or HSP) and 40+30 are standard or low sensitivity:

What if EDS is or is one of the traits that allows/causes the sensitivity?

What if everyone with Autism is HSP (but not all HSPs are Autistic)? Is the Autism our response/coping with the health problems? Is that why some folks “cure” Autism with diet changes? They are still HSP, but not acting Autistic because they aren’t coping with the health problems caused by toxins (that they are more sensitive to) in their diets?

From WikiPedia:

Collagen is not only a structural protein. Due to its key role in the determination of cell phenotype, cell adhesion, tissue regulation, and infrastructure, many sections of its non-proline-rich regions have cell or matrix association/regulation roles.

Fibromyalgia, Chronic Fatigue, aka

Postural Orthostatic Tachycardia Syndrome POTS aka Vasovagal Syncope

Pain – don’t write off the pain as all in your brain until you’ve explored other options – EDS can lead to pain. Someone who works with fascia or a gentle chiropractor (drop table, wedges, activator, no pop & crack) should be checked with if everything else has been ruled out.

Fatigue – POTS can cause massive fatigue & brain fog. EDS can contribute as well since muscles are compensating for tendons & ligaments.

Nonrefreshing sleep can lead to the fatigue & brain fog as well.

Dizziness – POTS/Vasovagal Syncope

Sensitivity to heat/cold – POTS again, which can lead to Raynaud’s.

Sensitivity to lights & noise seems more like a high sensitivity thing, so related but maybe not as directly. Fragrances are definitely an issue with POTS. Some of my earliest episodes during puberty were triggered by chemical fumes. I was always sensitive to lights and noise, so only the fragrance part was new.

hypersensitive central nervous system that converts some normal sensations to pain (allodynia) and heightens the sensation of pain (hyperalgesia).

Other symptoms of fibromyalgia include:

This is from a description of Fibromyalgia on verywellhealth.com: