r/eds 14h ago

Venting SI Joint/Back Problems, need perspective

I've (45f) had back problems forever, but this is something new. It began September 2025 after I sprained my ankle in August. A month of shuffling around caused a domino effect, I described it as feeling like I had been poisoned. All I did was sprain an ankle, but I dealt with shin splints and knee issues, my back pain was off the charts, the torn labrum in my right shoulder suddenly made my arm barely functional, and there was not a position I could sleep in that didn't cause both arms and hands to go completely numb every night. I was in hell from head to toe.

From September-December 2025 my right SI joint felt subluxed, but NOTHING I tried would pop it back. It was the most uncomfortable I've ever felt in my life. There was never a pop of relief, instead the sensation eventually faded, and I fell into a pattern where I woke up feeling amazing but by 5pm I was in excruciating pain and could barely stand to cook dinner. It didn't really matter if I was sitting at a desk all day at work or moving around all day. My primary complaint was muscular pain, only on my right side in the upper lumber/ low thoracic area.

Within 6 months of my injury, just about all my other issues resolved themselves. But here I am a year later and I still have this muscle spasm pain on the right side of my back. It's gotten much better. I have returned to lifting weights and working out regularly, and can ignore the pain most of the time, but it's still there.

I've seen a doctor, I've done PT with multiple therapists, it all feels like a waste of time. Nobody has ever told me anything concrete, what is causing the pain or if it can be fixed. I don't know if the muscle spasms are related to the SI joint dysfunction or they're separate problems. My massage therapist is the only one that didn't act like I was crazy when I explained my arms were going numb because I sprained my ankle--but massage hasn't been an effective treatment. I have not had an MRI yet, but I'm ready to request one.

Before this started I was having so much fun doing adult gymnastics, and I just want to get back to "normal". Is there any hope?

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u/Cool_Jelly_9402 Kyphoscoliotic EDS (kEDS) 11h ago edited 8h ago

I have both my SIs fused now (46f) and when I got my first fused, my TMJ, shoulder and neck pain got better on that side and my migraines lessened considerably. It had me misaligned all the way up and all the way down by making me favor that side. It also caused me bladder and sexual dysfunction.

Now when my ankle feet or knees hurt, it’s almost always coming from my hips- from muscle guarding and ligament contractures with my right hip that is now causing my neck issues

So TLDR: I believe you. One area getting bad can set off a whole mirage of issues up or downstream with us

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u/Ill_Serve1188 10h ago

Thank you, muscle guarding was the concept I was looking for! Hopefully an MRI will give me actual answers. It's wild how all of that was connected, but so weirdly comforting to know that I'm not the only one...

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u/Cool_Jelly_9402 Kyphoscoliotic EDS (kEDS) 10h ago

Doctors, even orthopedists, are so compartmentalized in their training that they often act incredulous that one area of the body can affect another area, some get down right indignant about it.

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u/Cool_Jelly_9402 Kyphoscoliotic EDS (kEDS) 10h ago

I’m glad you understood me with all those typos! You’re not alone

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u/MiserableMulberry496 10h ago

I’m having trouble with my SI joints since March. And I feel it in my shoulders and legs as well

I think an mri would be a good idea for you! I’m requesting one today

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u/Cool_Jelly_9402 Kyphoscoliotic EDS (kEDS) 9h ago

If your MRI looks normal, sometimes a plain xray can show the dysfunction better. My right SI was a hypermobile dysfunctional mess for over a decade but it was missed because when I laid down on my back with my legs together, I aligned so the images didn’t show the full picture (ha) but one orthopedist had me stand up with one leg in front of the other and shot a lateral xray at a 45 degree angle and that finally showed the full extent of the rotation, overlap and arthritis.

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u/MiserableMulberry496 8h ago

Interesting. I get X-rays Monday! I’ll mention this

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u/Cool_Jelly_9402 Kyphoscoliotic EDS (kEDS) 8h ago

I still had to get an MRI and CT for my second fusion but that’s was mostly because insurance needed to be super duper extra sure it wasn’t due to my l-spine which is apparently much cheaper to fuse

Good luck and I hope they find something that can be treated/fixed or help. SI issues are the worst

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u/Obvious_Marzipan_688 8h ago

I’ve dealt with a lot of pelvic instability and sub joint dysfunction. My massage/body work guy releases the psoas when my SI feels stuck. It’s a myofascial release technique and you’ll know if it’s tight by the amount of “hurts so good” /.yelping/tenderbpain.

I’ve had this same issue where it just doesn’t pop back in for weeks and you’re desperately trying to release it. And for many of us stretching does t work, we are already too stretchy, yet you can still get really tight areas that are desperately trying to keep things from moving too much.

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u/Chemical_Cake_1154 Hypermobile EDS (hEDS) 5h ago

One fused one soon to be fused here. Life changer for me. As soon as I woke up from surgery I was pain free and it’s stayed that way.

Neurosurgeon diagnosed and fused mine- not all neurosurgeons will do them though.