Hi, my name is stephlietz. I am a PhD student with severe POTS, Hypermobile ehlers danlos, fibromyalgia, and mental health issues. I am looking for support in recovery and help finding new ways to manage my illness
So, after insisting that I did not have joint laxity/instability the first time my physical therapist (who specializes in chronic pain and always screen's for hEDS)- I finally realized that I do meet most of the diagnostic criteria. Some of the issue was me being taught to ignore the constant pain as a child and minimizing my symptoms. My PT and I reviewed the diagnostic criteria that she could check and I'm within 1 point of a diagnosis. She said that means we will definitely address hypermobility in our sessions. Next step is talking to my primary doctor about referral to a geneticist.
Even without the genetic conformation or an official diagnosis, EDS explains so much about my experience of pain, medical complications, mental health, and even dental issues. I know it wasn't all in my head before- but somehow that's so much more real to me now. It's not a defect in my character (which it never was anyway but sermed like because the tests always came back "normal"), it's a physical problem that makes the everyday so much more challenging.
Just so relieved to potentially have so many answers to questions I was afraid to ask. My symptoms haven't changed- but knowing more about why seems to make them a bit easier to manage.
Thanks for reading my ramblings. Looking forward to more information and a deeper understanding of what this condition means for me and how I choose to live my life going forward.
#HypermobilitySyndrome #PTSD #Fibromyalgia #ChronicFatigueSyndrome #PolycysticOvarySyndrome #OrthostaticHypotension #Migraine #longcovid #Dysautonomia
Hi, my name is chronically_cole. I'm here because I have Ehlers-Danlos syndrome, gastroparesis, superior mesenteric artery syndrome, and orthostatic hypotension. I want to find braces that work, meal ideas, and motivation.
A little history: I’ve had GI problems for my whole life, yet only first started seeking care when a newer problem arose in 2006. Then after 2017, I just didn’t put in time for my health since college courses and work were my priority.
However, recently, I started investing my time to my health because there were too many problems interfering with every aspect of my life and having gone unaddressed for far too long.
I’ve been trying to track / manage my pain and fatigue; and lately my significant other has been commenting negatively about my frequent bathroom use. Recently I attended a workshop on nutrition relating to one of my conditions which made me see more urgency in getting my GI issues better managed. Then I’ve started a headache program that indicated a link with GI issues to headaches.
But I spoke with a doctor yesterday, covering for my primary provider; she wouldn’t let go of this idea that my symptoms were related to Covid or long-Covid, even though I clearly stated these issues have been ongoing since 2006. She wouldn’t refer me to a specialist either. So end result: she said to try over the counter medication (again) and to do the FODMAP diet, which would be easier to accept if I wasn’t financially restricted getting groceries for 2 people and the condition/space of my kitchen was better for 2 very different diets.
I’m just so tired of having to track, monitor and be aware of so many things relating to my health - then also having to do this for other areas of my life. There are so many variables; too many in fact!
**Does anyone have any recommendations on how to make adjustments and tracking more manageable when there are so many symptoms and variables to track?**
I have a pain journal, but I’m finding it hard to organize it effectively to track and monitor all these various symptoms and conditions (thanks to ADHD overwhelm). Could really use help or tips on what has worked for anyone else who has had to make a lot of adjustments for various conditions in a relatively short span of time - I just started getting care and treatment for multiple conditions this May, and primarily have focused on pain management, ADHD, and PTSD. #JointHypermobilitySyndrome #Fibromyalgia #ADHD #ChronicOrthostaticIntolerance #ChronicFatigue #ChronicPain #ChronicIllness #IrritableBowelSyndromeIBS #HypermobilitySyndrome
I haven’t been able to really find the answer for it. But does anyone else feel like their body is getting more “loose” as you age? I’m in my mid 20’s but my joints feel like a old doll being held together by string. My hands are so mobile and always pop out of place x_x and in general everything is more noticeable the more time that passes.
I’ve done PT (insurance stopped covering it) but I do exercises at home but it’s all falling apart LMAO. Does it stay like this forever or what???