What on earth could be causing my nerve pain in my legs?

Posted by angrynerves @angrynerves, Mar 13 9:19pm

Hello!
I'm 20, female.
Only previous condition is scoliosis. 27 and 35 degree curve.
Since August 2023 I have been dealing with debilitating nerve pain in both of my kneecaps and below in both legs ever since I slept poorly on an air mattress that deflated overnight. It started as searing back pain but then once it went away it presented as this awful electrical nerve pain in my left leg. It disappeared after 2 weeks but returned after a return flight home (5h) and spread to my other leg after a month.
Whenever I walk I feel like my knees and below are being tased. It's this awful nerve pain. It'll get 1000x worse if I sit, lay on my side, or stand too long. Ever since I've basically only lived in my bed. I'm 20 now and this began when I was 18.

I've had an MRI of my entire back. I have a bulge in my lumbar spine, and a protrusion in my t10-11. All doctors I've seen thus far (so almost 10 now) say it's too mild for my pain. I've had an emg / ncs, negative. I've had a brain mri, negative. I've had autoimmune tests, nothing except the ALAb27 but my Rheumatologist doesn't think it's AS.
I've been to physical therapy doing very general exercises and nothing has improved thus far. In fact, pathology has worsened. Doctors and PT pushed me to try and walk more so I did, after 4 days I started feeling this ice prick sensation all over my legs, when laying down. Laying down used to be the only thing I could do without pain/uncomfortable sensations.

Not sure what to do. This has caused me to drop out of university, I have no social life anymore and I never leave home, only for PT and appointments. My doctors (neuro, rheum, and ortho) all say "it's psychosomatic/ it's ptsd, etc" I've been on gaba (600mg3x daily, no use), Lyrica (100mg 2x daily, no change) and meloxicam. They even tried to put me on 1000mg of ibuprofen DAILY!!!!
What on earth could be doing this? Also want to say it ISNT NUMBNESS. for some reason my doctors keep saying its numbness and tingling. Its pain. I'm basically breaking down sobbing daily, I feel like a suspect to all my doctors. They don't seem to care. I don't even know what to ask for anymore or who to even go to. As I type this my legs keep lighting up with the ice pick feeling. My feet are prickling. This sucks.

Interested in more discussions like this? Go to the Spine Health Support Group.

Talk to your doctor about B vitamins. Especially B12. Also vitamin D3 and calcium for bone health.

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