Reversing Regain (with Ehlers-Danlos Syndrome)

[mil_unloaded 80]

Hey friends! I haven’t been around in a while…well, I’m going to be back now…as I feel like this community has been extremely helpful and supportive in the past, and I need to be here. I NEED it.

So I had my surgery on December 30, 2020. I lost about 110 pounds from my highest (308 to 198, surgery day I was 289). I am currently 227.9, but I regained to 235.2.

I know what to do, kinda. Log my food, eat my Protein first, then veggies, then carby-carbs (what I call things like bread, potatoes, Pasta, etc), move my body… However on Tuesday my hip subluxed (partial dislocation) while I was making a delivery for my job (I’m a home baker)… I kicked the curb with my foot and my momentum kept moving forward, I ended up on the ground with my knees scraped, and my left leg a total mess because of the Ehlers-Danlos Syndrome (my right hip is also nagging now because I’m having to alter how I walk).

So I feel like every time I get the groove going again, I hurt myself, and end up in more PT.

I don’t know what I’m doing here exactly on this post… as I’m not really looking for advice—I know what to do… but more words of encouragement. Especially if you’ve regained and were able to reverse it. What started that regain to begin with was I dislocated my left hip entirely while running… and it popped back in on its own. It was excruciating. It made me super scared and nervous to get movement… This happened last summer (about a year ago!). I since got an official diagnosis of Ehlers-Danlos Syndrome (EDS, but I don’t like using that acronym here because when I searched for that I got lots of results for eating disorders, and that’s not the same thing).

So… TLDR: If you regained and reversed it, can you offer your words of encouragement? Even if you haven’t exactly done this, I can take all of the kind words I can get right now.

Best,

Mil

[Lisa XO 117]

Hi Mil, there was a time when my youngest was a preschooler that EDS was on the table as one of the things that could be causing his other more apparent medical issues. Eventually it was ruled out, but I did do a lot of reading about the disorder. I can't imagine how scary it is to live with and all the injuries you have sustained can't make that any easier. I hope that there are more treatments available now than there used to be (practically none).

About the regain, I haven't been there yet since I'm a freshly hatched chick and still on the down slope (up slope?). However, I feel like you have the tools and know what to do, so you will be able to lose it! I wouldn't fret too much about trying to do any kind of moderate exercise. It doesn't really contribute that much to weight loss, and keeping your joints together is more important! Can you just do the exercises that PT has given you in the past and make a workout plan around those? I'm not sure what they have you do, of course, so not sure how feasible that is. Maybe Water exercise would be safest for you?

Anyway, I have faith in your ability to get back to where you were. I know it is important for your health. 🤗

[janet dekker 5]

Hi Mil I feel for you my daughter has eds so I know what you going through she has had the sleeve done and loosing her weight very slowly I had the bypass 2yrs ago and have regained about 8lbs it's hard to stop the gain but I guess we need to move back to the basic things we did in the beginning hope you get lots of advice and encouragement Jan e t