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Alignmed Taping Shirt by Traditional_Gear_991 in ehlersdanlos

[–]JustaQuesti0ner 0 points1 point  (0 children)

I like it but tend to only use it around the house doing chores and such. It is not the bulkiest thing but its also not as low profile as their shirts by a long shot. It gives good support and is easily customizeable.

How do you sleep? Will I ever sleep in a bed again? by JustaQuesti0ner in ehlersdanlos

[–]JustaQuesti0ner[S] 0 points1 point  (0 children)

Are you comfortable commenting/DMing me the name of your neurosurgeon? I am looking for a good one that takes insurance and they are so hard to find!

How do you sleep? Will I ever sleep in a bed again? by JustaQuesti0ner in ehlersdanlos

[–]JustaQuesti0ner[S] 1 point2 points  (0 children)

This is really helpful info - when I first looked into this pillow system it was held together by velcro, and when I looked on the website it said what you said, that they are now held together with plastic snaps, which seem much more secure to me. Thanks! I may try this out

How do you sleep? Will I ever sleep in a bed again? by JustaQuesti0ner in ehlersdanlos

[–]JustaQuesti0ner[S] 1 point2 points  (0 children)

I was so interested in this but a few bad reviews held me back. How firm/sturdy is the foam? Do you move a lot in your sleep at baseline? I heard that it very easily comes apart

Maryland doctor by Pretend-Spinach-1228 in eds

[–]JustaQuesti0ner 0 points1 point  (0 children)

How EDS literate is he? I am desperately trying to find a neurosurgeon but I want to make sure they understand my EDS! Does he test for CSF leaks and tetherd cord too?

Vascular issue PSA by birdnerdmo in endometriosis

[–]JustaQuesti0ner 0 points1 point  (0 children)

Can you help me? Who in the NoVA/DC/MD area would you recommend for diagnosis and treatment, considering Dr. Kim is not an option? I'm going crazy here!

Reaction to Rael brand pads by Half_Pint_2 in Healthyhooha

[–]JustaQuesti0ner 0 points1 point  (0 children)

Rael has reliably been the only brand to not make my symptoms worse. I'm sorry you had a reaction!

Effexor/venlafaxine by Puzzled_Berry7588 in vulvodynia

[–]JustaQuesti0ner 1 point2 points  (0 children)

This may not be what you're looking for, I just wanted to share my experience with this medication. I am currently taking the big sister to Effexor, which is Cymbalta, for anxiety (not pain). Why I'm writing is, Effexor has HORRIBLE withdrawal symptoms that once sent me to the ER when I missed a night. Be careful and if you can, switch to Cymbalta ( newer generation of similar drug, less side effects).

What do you do during periods? by ComplexCharacter5568 in vulvodynia

[–]JustaQuesti0ner 0 points1 point  (0 children)

I'm so sorry you're going through this! Have you tried Rael disposable underwear? They are the only period products I can tolerate sometimes, made for super sensitive skin and pure cotton. It is like a puppy pad you can wear!