1. < Spine Health
Profile picture for angrynerves

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.

Profile picture for memere88
memere88 | @memere88 | Aug 27 10:12am
In reply to @susieq47 "This is interesting, I saw a orthopedic surgeon for my knee and lower leg pain 2..." + (show)
Profile picture for susieq47 @susieq47

This is interesting, I saw a orthopedic surgeon for my knee and lower leg pain 2 years ago, they wanted to do a knee replacement but I shattered my femur many moons ago and there wasn't enough bone left to do the replacement in my opinion, so I declined. I have a metal plate from hip to knee and screws in the top of my hip as well so not a good candidate for that. I wonder if it's spine related and not the knee. I am loosing the use of my left arm too as the shoulder is hurting like something is broken but I had breast cancer with a mastectomy and all my lymph nodes removed so they won't touch my shoulder surgically. I have had spine issues since childhood and now I'm thinking that there is permanent damage since the L3-L5 were actually pushing on the spinal cord. Maybe that's the answer to all of this, the spine has so many nerves. My appointment is this Saturday and I am going to print this thread for my doc. Thanks for sharing, I am going to have to learn to live with pain as it's gotten worse since surgery. Went to ER last Friday, now with swelling in my calves and ankles. No blood clots found or any fluid around my heart and lungs. Numbness is getting worse. smh

Jump to this post

Really hope you get some answers!

REPLY
Profile picture for elizadolittle
elizadolittle | @elizadolittle | Aug 27 12:30pm
In reply to @memere88 "The night I got home after L4-S1 spine fusion in August 2022, my left leg gave..." + (show)
Profile picture for memere88 @memere88

The night I got home after L4-S1 spine fusion in August 2022, my left leg gave out (at the knee I think) and I fell down on all fours. From then on I had terrible left leg pain (from knee down). Sent for ultrasound that week which ruled out a blood clot. At 6-week post op video appointment (I live 6 hours from where I had surgery) the surgeon ordered a CT scan. This determined that the fusion hardware had moved and I went back in three weeks later for a correction. It fixed the leg pain but not the numbness which I still have (and into my foot) three years later. If I bang that shin or my grandson climbs on that leg, it really hurts. Nerve testing showed it is just a result of spine surgery and likely will not resolve. Grateful my back pain is gone!

Jump to this post

Try a combination of acupuncture and lazar. I can't believe how beneficial it is. I'm living almost painfree after my spinal stenosis operation. Apparently, the acupuncture reduces pain and the lazar treatment also reduces inflamation. This reduces pressure on the nerves. I really don't care what it does. It's working! Yes, I'm still on Tramadol. The space between each pill is getting longer as well. I was advised not to go off it completely.

REPLY
Profile picture for fayer
fayer | @fayer | Aug 27 4:43pm
In reply to @bayhorse "I have severe lumbar stenosis and some slipped discs in the lumbar spine. Pressure on the..." + (show)
Profile picture for bayhorse @bayhorse

I have severe lumbar stenosis and some slipped discs in the lumbar spine. Pressure on the nerves in the lumbar can cause pain all the way down the leg into the feet and ankles. My pain can be variable -- very bad in one area (for example the glutes and hamstrings) and then easing up and getting bad in the lower calf and the foot. You mention a "bulge" in your lower spine -- what exactly was the diagnosis?? If you have any pressure on the nerves in the lower spine, that could be the cause of your pain.

Jump to this post

I have had lower back pain for the majority of my years. After moving and all the heavy lifting and carrying that was required, my back went crazy with pain. It was so bad that I couldn't turn my body around to get out of bed, and trying to sit or stand from a sitting position was unbearable.
I have a new medical doctor (Nurse Practitioner), and she told me my lower 3 disks have fused and that the nerves were caught in the fusion. For the pain, she prescribed a cream called " Diclofenac ". After applying it 3 times a day for three days, I felt relief. I was amazed that a cream could be that powerful. The longer I use it, the less pain I have.
The pain in my lower back, buttocks, thighs and calves has improved significantly. I can walk now with the aid of a cane and am happily able to go outside and walk.

REPLY
1 reply
Profile picture for fayer
fayer | @fayer | Aug 27 5:08pm

Have any of those specialists you've seen never heard of ..... Fibromyalgia?
This is a possibility I would have a doctor (physical and/or mental) check out.
Just because the doctors can't find a "break or a bulge" doesn't mean the pain you're suffering isn't real.
Fibromyalgia is a proven medical condition that some medical practitioners don't know how to treat.....so they dismiss it!!!
Good luck

REPLY
Profile picture for bayhorse
bayhorse | @bayhorse | Aug 28 4:24pm
In reply to @fayer "I have had lower back pain for the majority of my years. After moving and all..." + (show)
Profile picture for fayer @fayer

I have had lower back pain for the majority of my years. After moving and all the heavy lifting and carrying that was required, my back went crazy with pain. It was so bad that I couldn't turn my body around to get out of bed, and trying to sit or stand from a sitting position was unbearable.
I have a new medical doctor (Nurse Practitioner), and she told me my lower 3 disks have fused and that the nerves were caught in the fusion. For the pain, she prescribed a cream called " Diclofenac ". After applying it 3 times a day for three days, I felt relief. I was amazed that a cream could be that powerful. The longer I use it, the less pain I have.
The pain in my lower back, buttocks, thighs and calves has improved significantly. I can walk now with the aid of a cane and am happily able to go outside and walk.

Jump to this post

@fayer, I'm so glad you are getting some relief. Could you do me the favor of letting me know what strength your diclofenac cream is? (Usually there's a % on the label of prescription creams.) I would like to speak to my doctor about trying it. I did look it up and found information that diclofenac is a pretty powerful drug and has to be used very carefully -- if overused it can cause some bad side effects. Don't know whether it would be approved for me.

REPLY
View MoreView Less
Please sign in or register to post a reply.