Unexplainable chronic lower body pain

I know I have asked similar questions in the past, but does anyone else get debilitating lower body pain that no one or nothing can seem to explain?

Ive been tested for everything, RA, Lupus, and a slue of other autoimmune disorders. My pain only responds to high levels of steroids-- and I've had it as long as I can remember, It is so intense it will wake me up in tears, and its like i can't move at all when it flares, i have to lay in bed and hope it stops soon. i need somewhere new to look, i am starting to feel hopeless.

please help.

I’m having the same issue right now! I’m sorry you are experiencing this but I’m so glad I’m not alone!

I always wake up in excruciating pain… from in between my shoulder blades down into my butt. It’s so painful I can barely move, and it makes my tummy hurt too. Lower abdominal pain, upper abdominal pain etc.

Today, I felt like someone stabbed me in the middle of my spine right below my shoulder blades and it hurts down to my legs… and on top of it I still have this headache that I’ve had since Wednesday.

I think I’m going to go back to my doctor and ask for a Xray and ct with dye of my spine… I don’t know what’s causing this but it’s terrible.

I hope you get better and find an answer to this craziness.

Do you have syringlomyelia? that's what it felt like when i had a syrnx? this is more my hips legs and ankles, sometimes when its really bad my arms will start to hurt but its usually just from like my butt down

I haven’t been diagnosed with syringlomyelia. I’m waiting for a brain and cervical spine mri but I think I’m going to ask for a full spine mri too… I haven’t had much issues with my legs other than occasional weakness in my knees… we are trying to figure out what’s going on its just taking forever.

Elsie, I’m so sorry you are still having this. Probably been through this but I can’t remember…have you had a lumbar spine MRI? Large tarlov cysts? Fatty epidural tumor of the sacrum or bottom of spinal canal? Have you had a flexion extension L-spine xray to rule out any lumbar instability. Do you have a movement disorder? Have you had an EMG? Easy for me to say, but don’t lose hope, there’s an answere we just have to find it.

Jenn