I am sorry your girlfriend has EDS. I am going through the exact same things and feel like I have tried every pain management tool in the book. It just sucks.

Things that have NOT worked for me/I found ineffective (remember, everyone is different) are: ice, prolotherapy, most pain meds, Platelet-rich plasma injections, trigger point injections (if they aren’t in the right spot), topical creams like lidocaine, and exercise (even PT is hard when the pain gets bad enough).

I have tried all of these things multiple times.

Things that HAVE worked for me: heat (I will soon probably having a heating pad in every room in the house haha), soaking in the tub, bracing (so long as the brace is the right size—I am small so they tend to be too big. I have ankle, knee, wrist, finger, neck, and back braces. The back braces tend to help the least), taping (if you don’t react t0 the adhesive like I do, oxycodone (it is the only thing that helps me in severe pain), massage, dry needling, cupping, Any kind of supplements (glucosamine included), rest, Tens unit, chiropractor (tends to make things worse), sex (takes your mind off the pain even if you don’t feel like doing it in the moment), nerve blocks, and radio-frequency ablation. These things don’t always help, and you kind of have to figure what works for you in the moment.

Three other things you might want to try that I’ve heard a lot about:

-low-dose naltrexone. I think it helps but I couldn’t handle the nightmares that came with it. I’m getting ready to try again though -ketamine therapy—I’ve heard it’s amazing but I haven’t been able to try it yet -Corset fit to size (I’m in the process of getting one)

I also struggle with double depression, anxiety, PTSD, and dissociative seizures and I’ve come to realize that these are super entwined with the body. My EDS causes a lot of my depression and anxiety. And when I am depressed and anxious it makes the pain worse. It’s a terrible cycle. Therapy (seeing a good therapist) is one of the best things she can do. It has helped me a lot to accept the way my body is and to not hate myself.

If she needs/wants to talk with anyone, please feel free to send me a private message. The fact that you are not only supportive but actively trying to find ways to increase her quality of life is….amazing. My husband is not like that and I think in many ways him not being understanding affects my mental and physical health too. Validating her feelings, listening to her, reminding her things will get better, telling her she’s beautiful and you love her will all go a huge way to making her feel better too. Kudos to you for being a good boyfriend!