What do I do?
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Hi All, New to the sub, and recently diagnosed with a hypermobile connective tissue disorder, but my specialist told me I am just one tiny marker from a standard EDS diagnosis and if this were 2016 I would have had a full EDS diagnosis. Anyway, I have severe hypermobility issues, severely injury prone, and I've had insane chronic back pain that never goes away since 2021. I should mention I just turned 32 and am a female. My ribcage moves often and causes a lot of back pain and nerve pain. I've been in and out of physical therapy, and currently I won't be able to go back to PT until August because YAY AMERICAN HEALTHCARE!! I've been in Pelvic floor pt, standard pt, and I'm just out of my wits end at this point with how much pain I'm in constantly despite trying to work out and take care of my body. I also am undiagnosed autistic, with ADHD, severe CPTSD, so routine, mental health, and sensory issues are a major setback for being consistent with my exercise. At this point, I have no idea what to do. I was offered a special medicine last year but when I researched it, the addiction rate was sky-high and I'm a recovering addict from substances. My back feels like giant, hard ropes of knots and inflammation. I have a PCP appointment next week but again, I can't go back to physical therapy until this summer at best due to Insurance. What do you all do for something like this? Are there herbal or holistic ointments you guys have used and had good luck with? I've invested in a stim/TENS machine and at-home cupping set, which helps to a degree, but I have to rely on my boyfriend who is also struggling with his own health and I'm trying my best not to dump my own health despair on all the time. I'm horrified at how young I am and having this much pain already at such a young age... What am I going to do as I get older?
Details
- Subreddit
- r/ehlersdanlos
- Author
- u/freyjakittylord
- Posted
- Feb 12, 2026 at 11:00 PM UTC
AI Analysis
- Condition
- hypermobile connective tissue disorder (hEDS), chronic back pain, pelvic floor issues, ADHD, autism (undiagnosed), CPTSD
- Barrier
- insurance coverage
- Geography
- us confirmed