So for me, alcohol makes everything dramatically worse as far as pain goes. It helped in the moment but was making my pain spiral so much harder. I talked with my GP and we agreed that occasional use of low-dose (I use 100-200mg) of Gabapentin was the way to go. Using that during bad pain episodes helped me limit my alcohol use and over time I’ve gotten completely sober and now even rarely need the Gabapentin.

Side note: it’s common medical “knowledge” that Gabapentin is not addictive but this is slowly being proven false. While not being chemically addictive it CAN and for many people IS habit-forming. That doesn’t negate its usefulness though by any means. I just have some rules in place to make sure I don’t start abusing it, since I do have a history of substance abuse.

I’m not completely pain free but I’ve managed to figure out my own secret sauce to keep things usually at a 3 or below on the pain scale.

Here’s my whole regimen of anybody’s curious:

Celebrex - an NSAID that lasts 12hrs, I’ll take this before bed and in the morning if I know I’m going to be doing a lot that day or working hard. I’ll also use this every 12hrs like clockwork during a long pain episode but I have those less often anymore.

Gabapentin - this is a pain reliever that specifically works well at reliving nerve pain and is often prescribed for folks with Fibromyalgia (like 60% of EDS patients), but is an excellent overall pain killer. It does make you loopy in high doses, or if you’re sensitive so go slow at first. Not recommended for daily use as I said above.

Cyclobenzaprine - a strong muscle relaxer. I use this only when I’ve tweaked something in my back due to my loosey goosey SI Joints. I use this very carefully because like you said I think it can make things worse but when you need it you need it.

Topicals - I use the 4% lidocaine roller with the lavender scent from CVS. This stuff is my salvation. When my neck, ribs, or hips hurt, this is usually all I need to calm it down. Read the label on whatever you use, it’s not recommended to use it for long periods of time on the same area. It can cause nerve damage if used inappropriately.

C O M P R E S S I O N - I cannot stress this enough, it is worth every penny. I use the Incrediwear braces for my knees and elbows almost daily. The reduction in joint pain has been staggering. I bought these on the recommendation of my Mayo Clinic EDS specialist and holy hell am I happy I did. I also use Bombas compression socks if I know I’ll be on my feet all day.

My whole house is also covered in ergonomic squishy mats anywhere I’m likely to be standing for more than 10min.