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

Posted by angrynerves @angrynerves, Mar 13, 2025

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.

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kaylin7 | @kaylin7 | Dec 1, 2025

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

ebwill2 | @ebwill2 | Jan 12 8:12pm

Omg the only reason I ran across this is because I'm trying to google what is wrong with me!! The EXACT SAME THING! I have a a herniated disk L4 and 5 and S1 do to a fall but they say it's "mild" but it could be causing this pain. I've hade several MRIs on my back. My left side is worse than it travels to the right leg. I can't sit long stand long walk long...Nothing. Even when I go to Walmart I have to do two trips I won't dare walk from one side to the other. My leg feel like crepitus when it flares up I can't bend it I dnt know how to sleep sometimes I have to get on the recliner. The leg pain hurst worse than the back pain although they say it's coming from the nerves in my back. I have had two rounds of epidural and when the injections goes in the doctor tells me it should replicate the pain I feel. It does but the relief isn't instant and it doesn't last long. It make me feel like this has got to be more than nerve. It's frustrating. Especially when people think "its just the nerves" or "not much to do for nerves" in the past two weeks I've had to call out of work because of the pain discomfort and not being able to walk. They prescribed me all of the same meds you were given like how can I take 900 mg of gabapentin and be functioning to go to work.... I have another test to do next week so hopefully I can get some answers or real help. I hope you did too being you posted this in March.