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Ehlers Danlos Syndrome (EDS) & HSD, calling all types!
Bones, Joints & Muscles | Last Active: Feb 8 8:59pm | Replies (65)Comment receiving replies
Hi @healthhopefreedom,
Let me connect you with other members who have experience with Ehlers-Danlos Syndrome (EDS) and/or Hypermobile Spectrum Disorder (HSD) like @lovemyfamily2003 @katemschultz @lisafl @jthigpen @kariulrich @blossom2016, who have shared their experiences in these discussions:
- Ehlers Danlos Syndrome - Who is the best doctor to see? https://connect.mayoclinic.org/discussion/ehlers-danlos-syndrome-new-diagnosis-1/
– Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS) https://connect.mayoclinic.org/discussion/chronic-erythema-nodosum/
– Possible Ehlers-Danlos Syndrome with craniocervical instability https://connect.mayoclinic.org/discussion/possible-ehlers-danlos-syndrome-with-craniocervical-instability/
@healthhopefreedom, it sounds like you're at the beginning of confirming a diagnosis, but certainly not new to experiencing a wide range of symptoms. How long has this been going on? How are you doing today?
Replies to "Hi @healthhopefreedom, Let me connect you with other members who have experience with Ehlers-Danlos Syndrome (EDS)..."
Hello @colleenyoung, thank you for the connections.
It's interesting. Yesterday and the day before, even though walking with a cane, I felt pretty good. I had upped my CBD intake and I feel that it helps.
However, today I woke up, was in the bathroom about 5 times already, and my whole body feels inflamed from the inside out. I can't predict when I will feel well and when I won't.
I did go back to work yesterday for the first time in over 3 months (limited to 4 hour shifts) and I was happy to be there. However, on days that I feel like this, I cant imagine working. I don't know what to do about it and I heard from someone in the RAM (Rare advocacy movement) that because someone was faking having EDS on the show Intervention, Disability claims are often thrown away and I truly do feel like this is a disability!
I just need some direction... I feel lost.
Hi @colleenyoung, I appreciate you connecting me with members. I wanted to mention so that we don't get any confused connections on here that HSD was meant to be Hypermobile Spectrum Disorder, but if anyone with Hallervorden-Spatz disease can benefit or contribute to these posts, please do!
Colleen, thank you for your coordination of the site. We have been traveling and I came home wanted to find the list of the common EDS symptoms and can’t find it. It was excellent. Could you re-post that for us? Gratefully
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Here’s a good article on the vascular type: https://www.ncbi.nlm.nih.gov/books/NBK1494/
This is a great support site for vEDS:
https://thevedsmovement.org/
There are also many area specific Facebook Support groups to help you connect with others near you. You can also find info, support and virtual groups at the Ehlers Danlos Society site: https://www.ehlers-danlos.com/
Hope this helps!