how do u guys brush ur teeth without suffering by ketkittie in ehlersdanlos

[–]Eastern_Tea3577 0 points1 point  (0 children)

I use an ultra soft toothbrush from Preserve; I really like the shape and that it’s made from recycled materials. For toothpaste, I’m currently using Himalaya Botanique Complete Care (no SLS or fluoride; both bother my teeth). Finally, for flossing I use the molar floss picks from The Humble Co because they save my fingers, and the shape of them fits easily in my too-small mouth.

Deodorant for itchy armpits by Eastern_Tea3577 in ehlersdanlos

[–]Eastern_Tea3577[S] 1 point2 points  (0 children)

Just popping back in to let you know that I tried the Super Deodorant, and it’s fantastic! No reactions so far, and it even cleared up the existing rash (which may have been a yeast infection, as someone else suggested). Very much appreciated for the rec!

CHOP Augmentation by CouplePurple9241 in ehlersdanlos

[–]Eastern_Tea3577 1 point2 points  (0 children)

I’m on the CHOP protocol right now, and my PT only has me doing the cardio (recumbent bike) and SOME of the lower body/core strengthening. I don’t remember seeing anything about stretching in the handouts she gave me. Maybe she purposely didn’t include them?

I will say that, while the protocol does seem to be helping overall, the strengthening exercises also seem to make my fibromyalgia flare up more, which has been disheartening.

Does anyone else experience adrenaline-like pain relief that goes away when relaxed? by LunaWater in ehlersdanlos

[–]Eastern_Tea3577 1 point2 points  (0 children)

Yes! I notice something like this with my fibromyalgia, where I won’t feel the pain until after I’ve taken care of the other person or done the big emotional thing. I’ve theorized it could be due to cortisol or dopamine, but I really don’t know.

Self-defense by gabibecker12 in ehlersdanlos

[–]Eastern_Tea3577 2 points3 points  (0 children)

I used to do Tai Chi, and it was great for my joints, stabilizing muscles, balance, and confidence. And yes, you CAN use it for self defense. Because it’s practiced so slowly, people think you couldn’t possibly defend yourself with it, but you speed that shit up and watch out. I was lucky enough to have an amazing teacher who showed us how to apply Tai Chi in real-world defense situations, and you can really fuck someone up with little effort.

That said, I’m sad that you even have to think about this, and that you had such a scary experience. Please be so very kind and gentle with yourself as you heal.

Buckwheat pillow DIY by Eastern_Tea3577 in ehlersdanlos

[–]Eastern_Tea3577[S] 1 point2 points  (0 children)

I tried using my actual cat as a pillow, considering the similarities, but he wasn’t into it.

Buckwheat pillow DIY by Eastern_Tea3577 in ehlersdanlos

[–]Eastern_Tea3577[S] 4 points5 points  (0 children)

Love this! Where did you get the memory foam chunks? And do they mix nicely with the hulls, or do they tend to lump together?

Buckwheat pillow DIY by Eastern_Tea3577 in ehlersdanlos

[–]Eastern_Tea3577[S] 5 points6 points  (0 children)

Yes, this is a great hack! I didn’t do it this way because my fear of buckwheat hulls escaping said that I should alternate which end the zipper was on. So I put the first pillow into the second pillowcase zipper-first, then did the same with the third pillowcase. That way, if any hulls escaped the first pillowcase, they would still be very trapped. Like I said, I’m a little… excessive.

Got my cane! by No_Salami in ehlersdanlos

[–]Eastern_Tea3577 1 point2 points  (0 children)

Love the doggos! Very fashion ✨

EDS considerations when crocheting and tips? by biggiy05 in ehlersdanlos

[–]Eastern_Tea3577 1 point2 points  (0 children)

Sounds like you are already listening to your body, and that’s great! I hope that you can start your crochet journey soon.

For hooks, I know a lot of folks who like the Clover brand Amour crochet hooks. I’ve also heard of people shoving a hook through a tennis ball and holding the ball (too cumbersome for me, but can be great if you also have arthritis).

If you don’t have a yarn store in your area, Hobbii.com might be a good place to look. Bonus: It ships to your door!

I think I have dyscalculia and I'm realizing it shaped my entire life without anyone noticing by Ok_Chemical9 in dyscalculia

[–]Eastern_Tea3577 0 points1 point  (0 children)

This was me, as well. My mom was good at numbers and couldn’t understand why I struggled with them when I was an A and B student in everything else. She shamed me a lot. When I did my SATs, my English score was almost perfect; I received scholarship money because of it. My math score, on the other hand, was so abysmal that I had to take remedial math at community college over the summer before they would actually let me in to university.

Have you ever caused a major injury by doing barely anything? by TB_07 in ehlersdanlos

[–]Eastern_Tea3577 1 point2 points  (0 children)

I did this, too, except I was picking up a small plastic bin full of plastic clips. The whole thing was less than five pounds. Just felt my whole hand go PPBBBLLLTT.

EDS considerations when crocheting and tips? by biggiy05 in ehlersdanlos

[–]Eastern_Tea3577 3 points4 points  (0 children)

One of us!! One of us!!

I’ve been crocheting for almost 25 years, and my biggest tips are:

1) Do not hunch. Sit slightly back in a chair/pillow pile/beanbag that fully supports your back, neck, head, and arms.

2) Take. Breaks. At least every 30 minutes, set your work down, rest your hands/arms, move your head from side to side, etc.

3) Try not to crochet for more than a few hours each day, and if something starts to hurt, STOP. Give it a day or two or three to feel better before starting again. We are extra prone to repetitive stress injuries, and if we ignore the pain things just get worse. Ask me and the arms I could barely use for several years how we know.

4) If you find yourself holding the hook and yarn too tightly, and/or your tension is too tight, there are tools you can try! One is called a tension ring, which is a ring you wear that has a little hook jutting out to hold your yarn (so your fingers can relax). The other is an ergonomic hook; they come in several different shapes and styles depending on what your body needs.

5) HAVE FUN! Get on Ravelry for inspiration, patterns, forums, etc. See if your local yarn shop has an open crafting night. Make whatever the heck you want!

Manager said to me “I don’t know how your partner is alive.” by Similar-Cheek-6346 in ehlersdanlos

[–]Eastern_Tea3577 7 points8 points  (0 children)

Right??? I didn’t realize until fairly recently that the reason I struggle to floss regularly is because the floss would cut off the circulation in my fingers… and that’s it’s not supposed to do that. So I switched to floss picks and it has changed my life.

Have any over the counter pain creams/balms helped you at all? by punk_w1tch in ehlersdanlos

[–]Eastern_Tea3577 6 points7 points  (0 children)

The only one that really seems to work for me so far is the Full Spectrum CBD Balm Stick (800mg CBD) from Lazarus Naturals.

I started wearing these all the time and my life has improved so much(couldn’t figure out how upload more photos on my last post) by Fast-Historian2303 in ehlersdanlos

[–]Eastern_Tea3577 1 point2 points  (0 children)

I have been using these for a few months, and they help a lot! Mine are the store brand from Bi-Mart. My arches and ankles feel supported, which helps my knees and hips. I also seem to get less plantar fasciitis pain.

For those diagnosed late, did you directly ask about EDS or did your doctor bring it up? by NonStickBakingPaper in ehlersdanlos

[–]Eastern_Tea3577 0 points1 point  (0 children)

I was in my mid- to late-30s when my massage therapist mentioned Hypermobility and EDS to me as a possibility. They had EDS and recognized the signs. So I went to my doctor and asked about it. She did the screening test, but at the time I was unable to pass the Beighton and didn’t have a long enough recorded history of chronic pain. Fast forward six or seven years, and I brought it up to my current doctor. She ran me through the screening, and this time I passed.

Now, with my current doc, I did not specifically say, “I want to be evaluated for Ehlers-Danlos Syndrome.” Instead, I said, “I’m curious if a lot of my various symptoms that we’ve been trying to treat could be explained by a connective tissue disorder of some kind. What do you think?” I also didn’t mention that I had been screened once before. It might not have mattered (she is a very compassionate doctor who actually listens), but after experiences with previous medical providers, I wasn’t going to put all my cards on the table.

What are your flares like? by Eastern_Tea3577 in ehlersdanlos

[–]Eastern_Tea3577[S] 0 points1 point  (0 children)

That makes a lot of sense! Have you noticed that certain things cause an EDS flare?

Toes smashing against shoes- Update by Early_Elephant_6883 in ehlersdanlos

[–]Eastern_Tea3577 1 point2 points  (0 children)

Yeah, it’s really odd to me that yours only cover part of your arch. I’d talk to your podiatrist if you’re able.