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 double jointed? Or is it Ehlers-Danlos?

While hilariously and sadly Ehlers-Danlos (EDS) is a “rare” disease, it’s actually just an adaptation that can have both upsides and downsides.

It’s also very simple to check for, just go through this scale and see if you score 5 or more (or would have as a teen – often we develop stiffness or arthritis later and aren’t able to move the way we used to):

https://www.ehlers-danlos.com/assessing-joint-hypermobility/
For elbows and knees I wasn’t sure for a while, but apparently they aren’t supposed to go farther than straight.

Abdominal Pain

Just putting some of my ideas out there in case they can help someone:

Our path:

I was asked by a doctor once how I’ve been able to self diagnose things like my Ehlers-Danlos, and this is an example of how – the above article mentioned “liver in the arterial phase” and I wasn’t sure what that was.

I looked it up and came across a reference to Budd-Chiari Syndrome, so I looked that up: https://rarediseases.org/rare-diseases/budd-chiari-syndrome/ – because EDS is associated with Chiari formation so I was curious.

So some degree of this ability is due to my search for connections, my choice of search terms and ability to speed read and make good choices of which links to skim.

And holey-moley does the web of information connect!

Connective Connections

So looking up stuff about abdominal pain/liver – I come across hemacromatosis – then it turns out that links to Fleischer Rings in the eye – which are associated with Keratoconus. So digging more on that I come across this pdf, which has this info:

Although CN6 palsy is most common throughout the lifespan of all patients, in patients with EDS, exotropia, possibly due to CN3, is the most common palsy. Esotropia is going to present most often with fusion and near, and uncrossed diplopia at far, or a divergence insufficiency. Cranial nerve 3 trouble, even partial CN3 which will leave the lid not involved, and perhaps have such a small hypotropia that you won’t see it, with no pupil involvement, will generally cause more problems at near than at far. The reason being that it’s harder to fuse the images at near, so instead of getting a DI, as you would with a CN6 palsy and diplopia at far, you will get a CI with diplopia at near with problems with the medial rectus, which is innervated by CN3.

James Kundart OD, MEd, FAAO, FCOVD-A
https://online-ce.opt.pacificu.edu/course_downloads/1411046365ehlers-danlos%20in%20the%20eye.pdf

It’s much easier to find info and connections than it was a decade ago, partially due to people sharing information online and a good part towards Diana Driscoll who James mentions elsewhere in the above pdf. I found her when she was still just writing for her blog Pretty Ill

I have EDS, I believe my kiddo does too, and we recently finished his CI (convergence insufficiency) therapy. And another immediate family member has double vision. Eventually I’ll test myself for CI too. I definitely think it’s a possibility, because when I tried doing the CI exercises with the kiddo, they were difficult and painful for me also.

My spouse has hemacromatosis in his family and keratoconus himself, which is why I even went down that rabbit hole and found these connections.

EDS is NOT a connective tissue disorder. It is a COLLAGEN disorder, connective tissue just being one of the most obvious traits/challenges since it is the main structural component of connective tissue. Collagen is present in pretty much every body system (I actually couldn’t find one that had none):

Collagen is a protein. In fact, it’s the most abundant protein in your body. There are at least 16 types, but the most common are Type IType IIType III and Type IV.

Collagen is made up of strong and stable fibers that work like glue to hold things in your body together and strengthen them. You can find collagen everywhere, from head to toe, including hair, muscles, bones, tendons, ligaments, organs and all over — in your skin. Collagen also creates elasticity that allows us to move, bend and stretch.

Dr. Liz Liotta
https://www.healthywomen.org/your-health/collagen/what-is-collagen-and-what-does-it-do

So it can cause all sorts of problems all over the place that get written off as unknown causes or lumped into a syndrome (a syndrome is just a collection of symptoms that appear together – which they may or may not know the cause of).

Autism, Comorbidities and Mindset

Hey, I’m autistic!

I wonder what story you just told yourself about what I just wrote?

The stories we tell affect everything we experience, and usually we are unware of them.

You see someone flapping their hands and tell yourself there’s something wrong with them.

I see that and wonder what they are expressing or coping with.

When I’m wiggling my fingers near my face, I’m actually flipping through the file folders in my mind trying to find what I’m looking for. And that physical movement often helps me focus and remember.

I had to practice at first – catching the stories I told that made me feel bad (What a rude driver!) and then thinking of one that didn’t (I bet they have to pee REALLY bad). But it comes pretty naturally now.

So for those of you who have such negative associations with the word Autism, why don’t you check why that is and what stories you’re telling. Maybe try: hmm, I wonder what this means and if I/they have a special skill? What challenges are there to be faced? And wow, so many of the individuals who revolutionized the world had similar minds, I’m so excited to stop trying to be/make someone into something they are not and be authentic and get support!

As far as comorbidities, I’m just going to info dump so folks can maybe find connections they weren’t aware of.

I have Ehlers-Danlos Syndrome and there are initial findings that EDS has a higher rate of diagnosis among the ASD population.

Most likely due to the EDS I also have: Postural Orthostatic Tachycardia Syndrome (POTS), Raynaud’s Syndrome. Waiting to get a diagnosis on Mast Cell Activation Syndrome.

I also have anxiety, insomnia, fatigue and until I got my tongue tie released recently I had 3 day long cervicogenic headaches (misdiagnosed as migraines, which I also got until I stopped working some years back) regularly and rib pain daily. It was also the first time in 7 years my knees didn’t need adjustment, when I went to the chiropractor after the surgery.

Oh, I had tongue tie that the floor of my mouth was stretching up for so it was compensating to a lower level of disfunction, I’m think that’s EDS, extra stretchy.

Additional comorbids are dermatillomania, keratosis pilaris.

I used to have exercise induced asthma due to my ribs and sternum being out, getting adjusted fixed it, after 20 years of having it. I have ADHD. I’m hyperlexic. I have aphantasia. I’m a Highly Sensitive Person (hsp). I have pelvic floor prolapse due to EDS and childbirth.

And none of those labels limit me any more than saying I’m a bookworm and love music does. They are more like a band t shirt that allows me to find like minded folks. And they give me a shorthand to use when folks understand the labels, so I don’t have to waste time explaining.

Time to sleep!

I

Pregnancy and Ehlers-Danlos

Since I did a lot of searching and only a little finding, I figured I should share my experience with being pregnant and having EDS.

I already had POTS, and so far (week 20), it’s been waaay better since getting pregnant. Probably due to the increased blood volume.

I started having some round ligament pain in week 6-7. It’s just started getting at bit worse around week 18-20.

Week 21 starts tomorrow and I’ve just started to have back pain yesterday and low back pain today. And I was holding my lower abdomen a lot, so probably time for a belt already even though my stomach isn’t very big yet.

I don’t have vascular EDS, we got the gene test to be sure. So far pre-term labor is the only risk the doctors have mentioned.

My joints are looser and so far I’m needing to see the chiropractor weekly (he uses a drop table, not adjustments – no crunching!) and he’s taught my husband a couple things to do at home that help. I can’t drive more than 5 minutes without joint/back pain, so needing a ride to every appointment has been the worst thing so far. Even walking messes up all my joints, so I’m having to stick to swimming. And grocery shopping I have to keep short and I still hurt by the end of it from walking.

I’m having new pregnancy migraines that a nap on my tempurpedic with a heat pad on my head seems to cure. Napping on other beds with the heat pad didn’t help, had to get some cranial sacral work done instead. Working on the muscle/ligaments that connect from the clavicle to the skull helps too. So I think these migraines are EDS related.

I’ll try to make more updates as things progress.

Normal pregnancy stuff: first trimester fatigue, increased sensitivity – so more contact dermatitis.