Amanda Crist

Writing about #hEDS 🦓, #muscle, health☕️, genetics, and how I’m trying to walk again🌱 #bedbound #homebound #calfproblems #zoology

[Amanda Crist @ZebraLoveCo]

My best top 20 tips for walking again.

I've done it twice and now a third.

Shoes—make sure you can move your big toe up and press it down as this signals the entire walking chain up through the adductor magnus, pelvic floor, and then abdominals and glutes.

[Amanda Crist @ZebraLoveCo]

@makemevisible24 Basically most of my symptoms are muscular –I was able to for example lift my camera and I hadn't lifted it in seven years. I can do multiple photo shoots like two days in a row and not have PEM or very little.

[Amanda Crist @ZebraLoveCo]

So I'm feeling better on treatments and I'm trying to fit in with normal people and I'm not so certain I can do it…

I'm trying to start a company to raise money but it's like when you're coming from a place of severe ME/CFS, and all the things that go with that…

[Amanda Crist @ZebraLoveCo]

@Margare91095496 @makemevisible24 Wow that's so great to hear that she's improving –I hadn't heard of the beetroot shot before…sounds like we're on some similar treatments. With the Amlexanox I had a major improvement within a week where I started walking- I hadn't walked any steps forward at all in two years

[Amanda Crist @ZebraLoveCo]

@Gmwetz A lot of things—I'm happy to share my full list, but i would say top ones are Tirzepatide, LDN, Amlexanox, Colchicene, Sulodexide

[Amanda Crist @ZebraLoveCo]

@ComebackGrid Wow I love that thank you so much for sharing your story –I think there are whole number of us that really need support from each other! And I think you're right about normal people also, people are pushing too hard really, and I'm guilty of that even when I was healthy!

[Amanda Crist @ZebraLoveCo]

@makemevisible24 Two of the most recent ones are colchicene and Tirzepatide. Very life-changing!! I'm also on amlexanox, sulodexide, and LDN. All of these have made a huge difference and I have a number of supplements also

[Amanda Crist @ZebraLoveCo]

@ahandvanish Oh that's amazing!!

[Amanda Crist @ZebraLoveCo]

@NeleHelena So horrible I'm so sorry

[Amanda Crist @ZebraLoveCo]

@rebeccavrse Yes I would actually like that! As long as it's a slow pace!

[Amanda Crist @ZebraLoveCo]

@chydorina wow thank you for saying that, that means a lot. really we all do, I have to remember that!!

[Amanda Crist @ZebraLoveCo]

@bad_berrie Yes, and it's like why do I have to walk this tightrope again??

[Amanda Crist @ZebraLoveCo]

@liamsLCjourney Yes it's really something—I wouldn't trade my health but I also don’t feel like I belong with healthy people . . . so it’s very lonely i think

[Amanda Crist @ZebraLoveCo]

@chydorina Yes, people die because of authors like him

[Amanda Crist @ZebraLoveCo]

@JackHadfield14 @robinsoped101 Yes exactly

[Amanda Crist @ZebraLoveCo]

@WIRED Oh please stop, I tried all the brain retraining for years but as soon as I had the right medication I started doing better—I went from not being able to feed myself to running a company.

Good grief.

[Amanda Crist @ZebraLoveCo]

@hannahspierMD Oh no I didn't realize people like you were still saying things like this. Probably because I'm living my life and not paying attention- I got treatments that actually worked. Before that I would've had what you call an illness narrative, because the hospital didn't treat me!!

[Prof Doug Kell CBE #FBPE #FBPA🔶🇪🇺 @dbkell]

Online version of a new paper with @resiapretorius Pretorius, E., Venter, C., Nunes, J. M., Thierry, A. R. and Kell, D. B. (2025) Surface cues shape procoagulant properties of amyloidogenic microclots. Cell Death Dis, online.
https://t.co/uCiJ8WSEpl #TeamClots #pwLC #pwME

[Amanda Crist @ZebraLoveCo]

@dbkell Congratulations!! This is so great– we need more attention on your work!!

[Amanda Crist @ZebraLoveCo]

@JackHadfield14 I had improvement with Amlexanox. I started taking steps after a couple years of not even being able to stand up straight.

[Amanda Crist @ZebraLoveCo]

@JackHadfield14 Oh wow I had never heard of this! Why don't they ever look at anything I don't get it…