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

@angrynerves
Have you seen an orthopedic spine specialist or neurosurgeon to review all imaging? Did you have a small fiber neuropathy blood panel and skin punch biopsy of your thigh/ankle?

What country are you in?

It sounds like you have compression/flattening of your spinal cord and/or nerve roots causing your pain symptoms. This can be functional movement symptoms due to your scoliosis.

Do you have family support to go with you to your appointments to help you advocate for the right care, diagnosis, treatment?

Has anyone checked you for complex regional pain syndrome? Have you been seen by a pain management specialist? They are very good at diagnosing crps.

I have seen an orthopedic spine specialist and neurosurgeon. Ortho said my MRI isn't that bad and shouldn't be causing this at my scoliosis shouldn't be causing pain. Same with neuro
I am in the USA, east coast
Unfortunately most of my appointments I am only dropped off by my grandmother as my mom's at work, my grandmother mostly just goes along with what the doctor says even when they talk down to me, So I'm effectively alone all of my appointments.

Yes, my pain management said that crps is only caused by physical trauma and that I don't meet the diagnosis criteria. I have been the three pain management doctors, the first one refused to even inject me anywhere claiming that there was nowhere to inject or directly treat due to my MRI findings, the second one told me I'd be better off at a place like Mayo Clinic, and the third only sent me it to a pain psychologist because they think it's psychosomatic :[

I'm so sorry. I went through being told my pain was psychosomatic. That doctor was very wrong because I did, indeed, have crps and still have it to to this day. I now have doctors who are very careful of that diagnosis and treat me accordingly. Seeking help at Mayo Clinic may be a good choice for you. I truly hope you find some answers.

@angrynerves
Ask your mom to take off work and go with you to your appointments. It is critical to have support and advocacy. Don’t let doctors and surgeons talk down to you or dismiss you and your symptoms because you are a young female. You know your body best and you should not need to ignore pain.

Have you been given spinal injections of lidocaine/steroid to see if it would help reduce inflammation/pain?

When were you diagnosed? Did you ever wear a back brace when you were younger?

Your degree of scoliosis falls in the moderate range and could be affecting your muscles/nerves and be behind your pain.

1. https://my.clevelandclinic.org/health/diseases/15837-scoliosis

2. https://www.mayoclinic.org/diseases-conditions/scoliosis/symptoms-causes/syc-20350716

@angrynerves
I fired doctors for saying I was a hypochondriac when I actually had an undiagnosed spinal cord compression injury (degenerative cervical myelopathy) causing many symptoms below my neck (including legs/bladder). They always tell women that their symptoms are “in their head” and never say that to men. Don’t tolerate being dismissed. Definitely take care of your mental health because chronic pain can cause anxiety/depression.

Your scoliosis plus disc bulges/protrusions in your lower thoracic and lumbar spine may be the source of your spinal cord/nerve root compression/injury that is causing nerve pain.

Have you and your mom read through all of your medical records in detail (including MRI report details)? If you had a positive hla b27 in your bloodwork, you may have AS due to your symptoms.

1. https://rheumdoctor.com/i-have-a-positive-hla-b27-what-does-it-mean/

2. https://www.mountsinai.org/health-library/tests/hla-b27-antigen

3. https://www.urmc.rochester.edu/encyclopedia/content?ContentTypeID=167&ContentID=hla_b27_antigen

I haven't had injections unfortunately, most of the pain management places that I want to said that they couldn't inject me because nothing came up with my MRI so I had to take the boot. I am super interested in a lidocaine injection as well as a nerve block.

I was diagnosed at the start of Middle School I think? I was braced for about 2 years and that was all that they did in terms of intervention, once the curve stabilized I was weaned off of the brace and that was that. I never actually felt any pain in my early years up until I was 18 I was pain-free

I saw your comment about AS! A few people mentioned to me that just due to my MRI not showing any kind of degeneration and nothing according to inflammation, that it's probably not as, my rheumatologist waved it off and said that while I have the gene marker the fact that I don't have the flagship symptoms it's probably not that. Though I'm honestly not really opposed to trying out biologics related to it to see if things actually simmer down...

I agree with @dlydailyhope
Going a doctor spine specialist. 2-3 years ago, I feel down in my garage and hits my 2 rear-ends. The next 3mths,everything cad problems. The pain, from my rear-ends, 2 legs, andmy feet. The pain killedme. Finally thedkctor had photos ofmu\y back attheend. He showed me what the problem (think that was past of my last 3 years be for)). That was a small there and he dot rid of that. My pain was gone - togslky!

I’m so sorry to hear that you are in so much pain. I had my third spinal fusion in December 2024 and had some similar problems.

Have your providers suggested injections to alleviate the pain temporarily?

Are you taking gabapentin and lyrica at the same time? The drugs are very similar in composition. I refused to take them because they carry so many side effects.

I did some research and found that amantadine and baclofen when taken with 1000 mg of Tylenol helped me until I had my surgery.

I cannot give you medical advice, I’m only telling you what helped in my situation.

Have you had a nerve conduction study?