What on earth could be causing my nerve pain in my legs?
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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Really hope you get some answers!
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1 ReactionTry 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.
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.
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1 ReactionHave 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
@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.
Try quitting dairy. I quit a few years ago and it helped a lot. I thought "Oh a little won't hurt".
I ate some ice cream 2 weeks ago. OMG! It came back just as bad as before. I'm just starting to recover now. It could take a month to notice the difference but stay the course. I found out from a naturalpath that it t is the Casein 1 in dairy. I can eat Casein 2 milk, goat and sheep milk products as well.
Hi there, I am going through very similar symptoms, except my MRI showed stenosis of the spine. My left leg is failing me. My knee caps feel like I have no cartilage left. Sometimes it goes to my right leg as well after a long day of walking. At night when I go to sleep it's horrific. I can't sleep because of the debilitating heaviness. I do know there is a mind-body connection, and if tests all come back negative, look up the spiritual meaning of this. Maybe it will connect to you. It's been 8 months since you wrote this. Have you had any relief? I hope you have < 3 If so, can you share what worked?
@angrynerves If you look at a website MSKneurology.com there are articles about various conditions. There is a pelvic compression syndrome that causes pain due to misalignment that mimics lumbar spine problems. With scoliosis, you are likely compensating and may be affecting your pelvis.
Myofascial Release (MFR) therapy may be able to improve scoliosis curvature if there is tightness in the body putting pressure on the spine. If you can relieve the tension, it may help according to my PT. If you search we have a discussion on Myofascial Release where you can learn more. It isn’t excercise, but more like massage therapy. There is a provider search at mfrtherapists.com. That may help pelvic alignment too. I have done a lot of MFR and it has helped me a lot.
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2 Reactions@harvestmoon81 I have spinal stenosis and back pain, pain behind my left leg to my knee. I even have pelvic pain. The stenosis is the cause of all of this. I go to pain specialist and even had a laminectomy for the stenosis and nothing helped. I'm currently on Norco 4 times a day which gives me a quality of life where I can live alone and take care of myself. I was told to try a pain pump. I will be asking the doctor about that next week.
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1 Reaction@harvestmoon81 Welcome to Connect. Does your doctor plan to do something about your stenosis?