hypermobility

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Community Voices

Best Walker/Rollator for EDS

I've been having a lot of trouble walking without mobility aids recently. I have platform crutches that I use all the time and love, but they're a bit bulky. We have several weddings we're going to be traveling for in the near future. I'm thinking about getting a rollator, but I'm not really sure what to look for. Recommendations?

#Hypermobility #HEDS #EhlersDanlosSyndrome

2 people are talking about this
Community Voices

Accesibility!!!!

<p>Accesibility!!!!</p>
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Community Voices
Community Voices

Has anyone had success with the Mirena/progestin IUD ?

I have historically had problems with increased joint laxity and pain when using progesterone only contraceptives such as the mini pill or Implanon. However, I have recently been recommended the Mirena because the level of progestin is lower and so apparently it "might be better."

I am very feeling very cautious/skeptical of this suggestion due to the fact that insertion and removal aren't exactly a walk in the park, and I've heard a lot of negative stories about it. I was wondering if anyone else with EDS/HSD has actually had success with it?

Many thanks xx
#EDS #HSD #Hypermobility

5 people are talking about this
Community Voices

How does EDS affect your mental health?

<p>How does <a href="https://themighty.com/topic/ehlers-danlos-syndrome/?label=EDS" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7a00553f33fe991e01" data-name="EDS" title="EDS" target="_blank">EDS</a> affect your <a href="https://themighty.com/topic/mental-health/?label=mental health" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce5800553f33fe98c3a3" data-name="mental health" title="mental health" target="_blank">mental health</a>?</p>
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Community Voices

Pill/Supplement Count Challenge

<p>Pill/Supplement Count Challenge</p>
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Community Voices

Sacroiliac Pain with SPD

<p>Sacroiliac Pain with SPD</p>
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Community Voices

What’s the most unexpected or entertaining way you’ve dislocated or subluxated a joint?

<p>What’s the most unexpected or entertaining way you’ve dislocated or subluxated a joint?</p>
42 people are talking about this
Community Voices

New Group for Chicagoland

I recently started a Facebook group called "Service Exchange for People with Disabilities in Chicago." The idea is to create a tight knit community that helps and supports each other. I'm hoping we will be able to help each other out with things like rides to appointments, cleaning the house, etc. It's for people who identify as disabled as well as their loved ones in the Chicago area (including surrounding suburbs). If you're interested, please join!

#Disabled #Disability #EhlersDanlosSyndrome #Hypermobility #AutoimmuneDisease #RheumatoidArthritis #CrohnsDisease #InflammatoryBowelDiseaseIBD #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #Chicagoland #Chicago

Community Voices

Has anyone experienced hypermobility after starting visanne? #Endo #Endometriosis #Hypermobility

When I first started Visanne (Dienogest/
progestogen only pill) I pretty mutch immediately was getting Joint Pains and started to be noticeably more flexible. I was hypermobile my whole life but my problems never were as severe as now. I went to the doctors multiple times but every single one of the thinks it can’t be connected to this medication. I switched medications for a while and my symptoms improved a tiny bit. But as soon as I restarted Visanne my issues started to worsen again.

I think the explanation of one of my doctors that „it‘s just in my head“ doesn’t work out because I am „measurably“ more flexible. By that I mean I can touch the floor much easier I‘ve got many new stretchmarks that at just not explainable otherwise ect.

If anyone has ever experienced something similar or has any advice I would be very grateful to hear from you!

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