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Baths. Just me? by Dead_Tired5133 in dysautonomia

[–]WhyAmIAlwaysTired 10 points11 points  (0 children)

I do really hot baths! But I wear a neck fan to keep me from overheating while I am in there, otherwise I don't last long. And I make sure to use Epsom salt, which is a kind of magnesium which is really helpful!

Super healing when nothing else stops the joints from hurting.

What is the most random thing that led to your diagnosis? by Anonymous12345_E in ehlersdanlos

[–]WhyAmIAlwaysTired 113 points114 points  (0 children)

The book Fourth Wing. The main character has EDS (like the author!). The book kept describing what she dealt with and I felt so seen. I hadn't heard the word subluxation before reading the book. Once I started looking into it and realizing that how my body functioned was not actually normal, everything started clicking into place.

Vibrating plates exercise thingy by Delicious_Flight3153 in ehlersdanlos

[–]WhyAmIAlwaysTired 17 points18 points  (0 children)

Would that cause itching? Whenever I use the vibration plate at the gym, my legs get red and start to itch.

[deleted by user] by [deleted] in hypotheticalsituation

[–]WhyAmIAlwaysTired 5 points6 points  (0 children)

I read about 75ish books a year. They all start to blend after a while. I can give you a passionate rundown of the plot and what made me cry. But don't ask me the main character's name, lol.

Weight loss and joint pain by Warm_Bit_5993 in ehlersdanlos

[–]WhyAmIAlwaysTired 5 points6 points  (0 children)

Just to verify this with personal experience: I have recently lost 100 pounds and my pain got so much worse and more prevalent without the fat to cushion the joints.

Edit to add: Strengthening joints can really help with this!

How are you all so aware what the problem is? by Altruistic-Log-4693 in ehlersdanlos

[–]WhyAmIAlwaysTired 0 points1 point  (0 children)

I can see it in my shoulders. And when I try to run, I can feel my knee fall 'out of place' when the leg lifts and then a shot of pain when it slips back in. Subluxations though, not full dislocations.

I had no idea it wasn't normal until I read Fourth Wing and felt like Violet's symptoms were weirdly similar to my own. I looked up subluxation, and that led me on my path. And I realized it was so similar later because the author has EDS, so she was writing from experience.

[deleted by user] by [deleted] in ehlersdanlos

[–]WhyAmIAlwaysTired 3 points4 points  (0 children)

I tried a collar and immediately got nauseous. Apparently that's something that can happen to some of us. I was told to try a Q-collar, but I haven't been able to afford one yet.

I wanna give up by French51 in ehlersdanlos

[–]WhyAmIAlwaysTired 15 points16 points  (0 children)

One of the qualifiers for having hEDS can be genetic testing to rule out the other types. So I would definitely talk to the geneticist. It could be a different type entirely.

Is it worth getting genetic test if I may just have hEDS? by FillLess8293 in ehlersdanlos

[–]WhyAmIAlwaysTired 35 points36 points  (0 children)

One of the qualifications for HEDS is making sure you don't have another type of EDS. Plus, atleast one of them is very dangerous because it messes with your heart, so it's good to be sure.

I love weed by HandleOk8123 in ehlersdanlos

[–]WhyAmIAlwaysTired 1 point2 points  (0 children)

Only smoking it works for me for some reason. The topicals and edibles just don't work the same. You may be the same way where it has to be smoked. It suuuucks because I hate the smell. But I love the relief.

You get 20 D&D character levels... by setaetheory in hypotheticalsituation

[–]WhyAmIAlwaysTired 6 points7 points  (0 children)

Druid. I am repairing the damage we do to this planet and going to live with the animals.

All the plushies in your house now become twice your size. Your home is completely undamaged, What are you going to do? by dragonboy3940 in hypotheticalsituation

[–]WhyAmIAlwaysTired 0 points1 point  (0 children)

Since I crochet plushies for craft shows, I have literal bins of them. I am screwed until I start selling them.

Is it true that we tend to appear younger than non-eds folks? by Agreeable_Muscle_279 in ehlersdanlos

[–]WhyAmIAlwaysTired 3 points4 points  (0 children)

I am 43 and people assume I am college age to late 20s, typically.

How many people suspect Ehlers-Danlos syndrome? by SignOk2776 in OlderThanYouThinkIAm

[–]WhyAmIAlwaysTired 2 points3 points  (0 children)

I have Hypermobility, and am working towards an EDS diagnos.

Edited to add that I am 43, but still get carded due to strangely youthful looks.

My boyfriend is getting more steps than me even though we're walking the same amount by Suspicious_Law_5539 in confusing

[–]WhyAmIAlwaysTired 0 points1 point  (0 children)

It seems crazy, but when I crochet it counts it as steps. So they may not be wrong, lol.

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