1 Year After Being Diagnosed -LIFE UPDATE
- Sami
- Sep 9, 2022
- 2 min read
Well, I'm not sure how it happened, but it's been a little over a year since being diagnosed with Hypermobile Ehlers Danlos Syndrome. I figured I would post a little life update on how things have been going, especially since it's been a hot second since I've posted!
1. I have continued to learn about EDS
Favorite Book about EDS: Understanding Hypermobile Ehlers Danlos Syndrome and Hypermobility Spectrum Disorder by Claire Smith
Favorite Podcast about EDS (especially dancers with EDS!): BendyBodies
2. I have tried new treatments
Most recently I've been doing Acupuncture/Dry Needling
- I'm not sure how I feel about it yet. The acupuncturist is amazing and understands EDS, but I haven't seen any substantial benefit. I would say it gives me about 10% relief, but because I teach so often, that relief doesn't last long.
- I'm going to continue doing it once a week for at least 6 more weeks because she said it might just take longer since I go into my typical pain pattern so quickly. - Biggest downsized for me is that it hurts. I've had so many needles (especially with PRP and Prolo) but this is might take the cake with most painful needle. - Essentially the needle goes into a muscle and gets moved around to release the tension. Your muscles can even twitch if you get a good response! I included a little video I found (not me) if you want to check it out.
I'm getting a device for my mouth next week
- My amazing physical therapist figured out that my jaw does not sit in an appropriate resting position. This has been causing neck issues, which then adds to my shoulder pain.
- In these appointments I work with my PT and a dentist
- I will write a separate post on this after I get the device because it's so cool and fascinating!
My bruise that lasted 4 weeks from dry needling😂
3. I have re-visited old treatments
I had another Cortisone injection (+ some other fun)
- My shoulder doctor, who found the broccoli in my shoulder, tried one last go at breaking up the calcified bursa in my shoulder. I kid you not when he tried to break up the scar tissue in my shoulder the needle going through the tissue made the sound of a hand slamming a table.
- It felt like trying to stick a thin needle through a thick car tire
- After that, he injected some cortisone to see if there was any relief
- Biggest bummer was that I had no improvement. No more cortisone for me!
I'm getting Prolo Therapy
- I had Prolo Therapy done to my shoulders and hip about one year ago. The goal was that it helped my joints from subluxing as much.
- My neck (C2-4) has been subluxing nearly every day. I'm really hoping prolo will do the trick!!
4. I started a ZeBrave Instagram
A few of my students convinced me to start an instagram account, and I am thankful I did.
I always have guilt and weird feelings about posting about my chronic illnesses. I don't want it ever to be perceived as "oh poor me." Truly I started this blog as a way for me to record all of my trials/errors and help other people; the instagram has just become an extension of that. EDS is not publicly know, and I am happy to put out my story in hopes of helping others. When I get messages from my blog or instagram saying that I helped someone, it makes my day.
There is a really awesome little EDS community on Instagram. It makes me feel so validated about my experience, and has helped me feel like others are going through similar experiences.
Also it's just fun to be goofy because that's who I am!!
5. I have hope of feeling better
I have come to terms that I will most likely never not have pain. However, I feel like I am on the road to better pain improvement and management.
My hip pain has significantly improved since doing prolo therapy, getting good orthotics, and working with my PT.
I am (sometimes) able to get my shoulder back in if it subluxes. Silly shoulder just really likes to sublux and then get stuck!
I will be honest, I am awful about just pushing myself through pain. I know I can push through, but that really doesn't mean I should. I've been trying my best to figure out how to still teach, but adapt when I know I need to reset.
My PCP (who diagnosed my EDS) started Washington's first EDS Clinic! I'm so excited for her and can't wait to do my first visit.
Okay, I guess a lot has happened recently! Thanks for being a part of this journey with me. 💕🦓
Be Brave. Stay Kind. Much Love.
Sami
I love this post so much! And especially the funny reels! I wonder who made you start an Instagram!! Love youuu!!!