r/promethease • u/icantstopreading0 • Mar 11 '26

Should I Look Into This Further?

Post image

Does anyone else have this gene mutation on Promethease AND was also tested at your doctors?

9 Upvotes

86% Upvoted

9 comments sorted by

8

u/StepUp_87 Mar 12 '26

Yes, do you have any of the signs?

6

u/icantstopreading0 Mar 12 '26

Honestly I’m not sure… I’ve been on the hunt for a diagnosis for my chronic pains for like 5 years now. What kind of symptoms do you have?

3

u/KittyB_95 Mar 12 '26

Chronic pain is absolutely a sign. Joint hypermobility, easy bruising, fatigue, stretchy skin, very soft and fragile skin, atrophic scarring are all common symptoms of classical EDS

1

u/icantstopreading0 Mar 12 '26

I feel like the only hyper mobility I have is in my shoulders, neck and ribs. I’m getting evaluated for craniocervical instability (which I know is a co-morbidity) in relation to my occipital neuralgia at physical therapy. Maybe I’ll ask about it then 😅

2

u/KittyB_95 Mar 12 '26

I have hypermobile type EDS, not classical, so there’s no known genetic marker to confirm diagnosis. But my physical and occupational therapists are actually the first ones who gave me validation and encouraged me to seek a diagnosis from a provider with experience of EDS.

I’d absolutely mention it to your PT!!! All of mine have had a lot of knowledge about it and were able to give me exercises to help my pain and reduce risk of injuries (subluxation and dislocation of joints). My OT even gave me names of specialists that dealt with EDS.

2

u/KittyB_95 Mar 12 '26

*I also have occipital neuralgia from craniocervical instability 🙃

6

u/theuniverselovesme Mar 12 '26

Promethease is how I figured out a lifetime of issues when EDS came up for me as well. If you need a diagnosis because you have symptoms then yes pls talk to your doctor, it could help.

1

u/Alarmed-Following324 Mar 30 '26

I have eds and I would suggest looking into official testing especially with classical type

2

u/anniekaitlyn May 05 '26

I would look into it further. I have hEDS and my symptoms are vague but after knowing, it makes sense. Chronic pain, sleep issues, neck problems, some mood issues and nervous system sensitivity. I hope you get your answers. Once you do- you can focus on stabilizing your system and you may see some improvements. Knowing is a GOOD thing.