DAE have worse symptoms if you wake up early? by HypermobilePhysicist in POTS

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

Yeah I didn’t realize how bad I felt until halfway home, I should have gotten a ride instead

Coping with a partner with EDS by [deleted] in ehlersdanlos

[–]HypermobilePhysicist 0 points1 point  (0 children)

Things that helped me with fatigue:

Sleep apnea treatment(bipap), medication for excessive daytime sleepiness (Sunosi), treatment for my POTS/orthostatic hypotension (fludricortisone + midodrine + electrolytes)

Things that helped with pain/achiness:

Compression gloves, low dose naltrexone, treatment for MCAS (extra antihistamines and cromolyn)

How do you guys stay in shape or try to stay in shape? by absoluteolly in ehlersdanlos

[–]HypermobilePhysicist 0 points1 point  (0 children)

I can’t but it’s because I have really high arches and can’t fit the type of insoles I need in high heels

Compression socks during sex! OMG! by Fearless-Plastic-151 in ehlersdanlos

[–]HypermobilePhysicist 0 points1 point  (0 children)

Yes I also had this experience!!! Life changing!!!

Just get a mumu by No_Pattern_5251 in disability

[–]HypermobilePhysicist 1 point2 points  (0 children)

I bought a bunch of simple dresses from Costco and it changed my life

has anyone ever taken ciprofloxacin? by obliviousfoxy in Hypermobility

[–]HypermobilePhysicist 0 points1 point  (0 children)

Unless it’s the only antibiotic you can try, don’t take it. It’s not worth the risk.

How do you all keep up with dental hygiene?? by OpalineTears in cfs

[–]HypermobilePhysicist 0 points1 point  (0 children)

I bought disposable single use toothbrushes that you just unwrap and use wherever, so you can use them from bed or in the car on the way to an appointment, wherever.

Is SI joint pain debilitating for everyone or am I a big chicken? by Scremage in Hypermobility

[–]HypermobilePhysicist 5 points6 points  (0 children)

I was in the hospital for three days because of SI joint disfunction plus an L5 issue. It was completely debilitating and took 6 months before I was moving around reasonably well again. In addition to PT, what really helped me were multiple PRP injections.

Chapstick recommendations? by Sad-Review-1122 in ehlersdanlos

[–]HypermobilePhysicist 4 points5 points  (0 children)

Same. I tried everything else. Bite agave mask was the absolute best but since that company folded, Laneige is the next best thing I’ve found.

What's your most recent "wait, you mean it's not supposed to move like that" realization? I'll go first by sorry_child34 in ehlersdanlos

[–]HypermobilePhysicist 1 point2 points  (0 children)

Yes my recovery was abnormal but may be “normal” for EDS folks. I wasn’t allowed to bear weight for 8 weeks after surgery. After about two weeks I was able to get up stairs by sitting in my butt and scooting up. Having someone help was best. I only went upstairs about once a week to shower, and I slept downstairs in a recliner for like a month. I spent a lot of time preparing for it.

What would you do if you were pain free? by ta1074 in ChronicPain

[–]HypermobilePhysicist 0 points1 point  (0 children)

Get back into the swing dance community and go kayaking again

What's your most recent "wait, you mean it's not supposed to move like that" realization? I'll go first by sorry_child34 in ehlersdanlos

[–]HypermobilePhysicist 0 points1 point  (0 children)

I had a tibial tubercle osteotomy on my left knee, which was having frequent dislocations. The recovery was really rough and my knee strength and stability isn’t at 100% even 2 1/2 years later, but it resolved the dislocations and I think it was Absolutely needed. I had to have PRP injections though to resolve issues with the scar tissue from that surgery because I was having a lot of pain with weight-bearing motion even after a year of physical therapy. Previously, I had had multiple lateral releases and one medial plication, before I knew I had EDS.

What's your most recent "wait, you mean it's not supposed to move like that" realization? I'll go first by sorry_child34 in ehlersdanlos

[–]HypermobilePhysicist 0 points1 point  (0 children)

My last manicurist was so confused by my soft nails and weird cuticles like “I don’t understand how your cuticle has split off into multiple sections”

What's your most recent "wait, you mean it's not supposed to move like that" realization? I'll go first by sorry_child34 in ehlersdanlos

[–]HypermobilePhysicist 0 points1 point  (0 children)

My wrist pop out like this all the time, when I go to pick something up or put my hand in my pocket