Greetings! I’m new here. I have a CSF leak, EDS, Small Fiber Neuropathy, and an unofficial diagnosis of MCAD and CCI. I’ve been in PT for various joints and maladies over the past 6 years. My most troubling issue right now is strengthening after recovering from my epidural blood patch in March of this year. As a conservative measure I laid flat 22 hours a day for almost 3 weeks. The patch held but I became so weak… even my heart. It was the weakest I had felt before my EDS diagnosis in 2017. Since there’s no official recovery time for a blood patch I had to make my own decisions. As you all know a lot of us are left to our own devices regarding our medical care, essentially our own diagnosticians until we can confirm the diagnosis with a doctor. I’m especially feeling neglected because follow up care where I got my blood patch done is nonexistent. I’m starting from scratch but luckily I already have been in PT so many times this is such a treat to not have to leave the house. Not that I have a choice at this point lol. I’m looking forward to completing the program one step at a time, and I’m already aware that it may take time and I might have to start all over multiple times. This is EDS!!!!

Posted by Deleted (73f4d903) at 2022-08-07 22:57:54 UTC