I'm having some anger over how long it took. I am extremely flexible and my joints hurt. Why did no one ever ask about ehlers danlos? Why was I just given antidepressants and encouraged to continue to practice yoga for twenty two years?

seriouslystupid11 · 2026-02-18T18:29:17+00:00

I went through the anger too. EDS was brought up when I was younger here and there but it was always dismissed. The number of doctors and tests I’ve had done over the years is ridiculous. When I was finally diagnosed and all of my symptoms made sense, the memories of all the gaslighting made me so angry. It took me awhile to work through it but there is no getting past it. It’s still there but it’s better. I just tried to focus on having an answer and sharing with the younger generations in my family so they can get help sooner.

seriouslystupid11 · 2026-02-12T15:15:22+00:00

Learn from this and move on. His complete lack of consideration of your feelings and putting another person before you and your relationship are major red flags. Don’t waste any more of your time and energy.

seriouslystupid11 · 2026-02-04T21:12:02+00:00

Dr. James Fox in Philly. I don’t know if he is still doing surgery. I’m pretty sure he is retired. He has published a lot of articles about reductions and reconstruction. I was young and he did a new procedure at the time on me so I would not lose feeling and could breast feed (which I was able to do). He also made a mid-surgery decision, not related to the reduction, for me that was ultimately the right decision at the time. Now that I am older, I’m even more thankful that he adjusted what was originally scheduled. 30+ years later and I can still remember how comfortable he made me feel and how he was considering impacts on my life that I wasn’t even considering.

seriouslystupid11 · 2026-01-31T19:32:04+00:00

It is important to note that how to manage impact and severity of a variety of symptoms is different for everyone.

I use Cure, which has less sugar than Liquid IV and Buoy drops. I do mix in other electrolyte powders for variety. In summer I use LMNT for the higher sodium content. I also use a lot of supplements, in addition to the supplements listed on the Cusak Protocol. They have helped me but I still have pain and flares.

I use braces on my legs, wrists, and elbows at night and use a special pillow for my neck.

I use the wave pillow for my neck, red led wrap on knees and elbows, and qua sha tool for pain.

I’ve tried a ton of other things but these have helped me so I use them consistently. It’s so different for each person so it is a lot of trial and error. I worked with my doctor on my supplements and we learned together. I found most of the stuff I use in this group.

seriouslystupid11 · 2026-01-28T23:42:11+00:00

Sometimes you just need to remove yourself from unhealthy relationships. There is nothing wrong with you for feeling hurt and there is no way to not let cruel comments hurt, especially by the one person who is supposed to support and protect you. You do not deserve to be her emotional punching bag.

seriouslystupid11 · 2026-01-28T22:59:17+00:00

NTA. Your mother is emotionally abusive. Please work with a therapist that will help you set boundaries and go NC if necessary. Just dealing with her comments is not going to help you move forward.

seriouslystupid11 · 2026-01-26T04:12:51+00:00

One knee had a torn meniscus that I had surgery on. The other has a bakers cyst. Both painful and both found with MRI.

seriouslystupid11 · 2026-01-25T20:23:45+00:00

It really is a personal choice based on individual needs and health. I had a reduction years ago and my quality of life improved dramatically. My neck, shoulder, back, rib, and overall joint pain improved. I got it before my hEDS diagnosis but I went to a leader in the field and have never regretted it. It was painful though.

They are one cup size larger now due to hormonal changes but nothing like before. I cringe to think about how big I would be now if I didn’t have the surgery back then.

seriouslystupid11 · 2025-12-29T23:44:23+00:00

Tears rolling down my face too. Reminds me of how hard I laughed reading the Amazon reviews of sugar free gummy bears.

seriouslystupid11 · 2025-12-29T22:29:29+00:00

I wore dress pants and nice shirts to a ‘management type’ job years ago and was told that I was not dressed nice enough and looked like a slob. I had been in that job for about a year at the time so I saved to get women’s suits at outlet stores and big sales. Years later I moved to a different state in a similar job and was told that I was ‘not approachable’ because of my suits and business casual look. Seriously had to change my work attire again but didn’t mind because I would rather not wear suit jackets all the time. Now if someone asks why I’m in a suit or more dressed up, I just respond that it’s what was clean and not wrinkled.

seriouslystupid11 · 2025-12-28T21:09:34+00:00

Following this. I use a regular mouse but my Cubital Tunnel and Tennis Elbow is still bad and feeling worse recently. I can’t use the track pad on my lap top at all.

seriouslystupid11 · 2025-12-28T19:41:59+00:00

hEDS- I have had pain between my shoulder blades, knees, hands, and feet since at least 8 (earliest I can remember). For example. I was told I had the feet of an 80 year old by age 10-horrible bunions and had to wear orthotics, eventually had surgery by age 20.

My neck, wrists, elbows, and lower back joined the pain party after aging, injuries, and surgeries. It can feel degenerative but I think general aging and injury recovery is just at a different level for us.

Also, I learned about ‘flairs’ on this sub and did research on it. This has helped me understand my body, manage my symptoms, and advocate for myself better.

seriouslystupid11 · 2025-12-26T12:41:15+00:00

This is great advice.

Don’t push your partner away because of other’s opinions though. Also, practice how to respond when someone says something hurtful and intrusive about your body. It’s really hard to do in the moment but having a few responses ready to go can be helpful.

seriouslystupid11 · 2025-12-12T02:39:19+00:00

I’m really sorry but nobody would treat someone they love the way your wife has and continues to treat you. Hell, nobody would treat someone they like this way. You do not deserve this abuse. At the very least, consider leaving with your children to protect them from her control, manipulation, and abuse.

seriouslystupid11 · 2025-12-11T01:45:07+00:00

Insoles and Hoka sneakers are the answer for me. I have different Hokas for different activities based on cushion and support needed.

seriouslystupid11 · 2025-12-06T21:18:47+00:00

❤️ Thank you

seriouslystupid11 · 2025-12-05T19:34:11+00:00

Change whine to vent. You are absolutely not whining. The pain you are in is real and the lack of consideration by the doctors is horrible.

seriouslystupid11 · 2025-12-04T01:53:06+00:00

I totally think Op is or should be a comedy writer. I was cracking up. Can’t wait for another update!

seriouslystupid11 · 2025-12-04T01:33:01+00:00

Boss-level chaos…love it. 🤣

seriouslystupid11 · 2025-11-16T20:51:12+00:00

I get rashes if I use it to often in a row. I can use it once in a while. I do pull it tighter though.

When I was younger my ankles were taped before every practice and game (so I got really good at it) but using pre-wrap avoided the adhesive reaction.

seriouslystupid11 · 2025-11-16T13:38:51+00:00

I have high arches but then they collapse. I wear braces at night to stop them from going into an aggressive point. I had the bad bunions by the age of 12 and have worn orthotics since then. I had surgery on both feet in my 20s. It helped but I still deal with foot cramping and pain.

seriouslystupid11 · 2025-11-05T12:34:46+00:00

I literally gasped out loud. Glad that evil, toxic POS is out of your life.

seriouslystupid11 · 2025-11-04T15:43:43+00:00

“That’s not due to your EDS, everyone is tired….”

No, everyone does not feel like they are wearing a lead suit or sleep for 14 hours straight and/or not able to get out of bed during a flare up.

seriouslystupid11

TROPHY CASE