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

I'm not a doctor, of course, but it sounds to me like it could be a disc that protrudes more when you are in certain positions for longer periods of time due to gravity and pressure on the spine. I've had (and currently have) multiple disc herniations, and have suffered similar, worsened nerve pain when in certain positions. You mentioned that your pain is 1000x worse when sitting, laying on your side, or standing for too long. Sitting and standing put a lot of pressure on your spine, so the longer you're doing those things, the worse the pain can get. I have dealt with this as well and in my case, it's often been caused by disc problems. (That doesn't mean that your issue is definitely caused by your discs, but it sure sounds like a good possibility). Now, luckily for me in one way is that my imaging has always clearly shown where the problem was, but not everyone's does.

The other thing, which Doctors should know, is that what affects and/or hurts one person isn't necessarily what affects/hurts another person. Many people have disc herniations/bulges, stenosis, etc..and don't even know it because they suffer no pain or maybe no other symptoms. Others have what appear on imaging to be "minor" issues, but may suffer tremendous pain & symptoms.

Where is your lumbar disc bulge located? I just did a search and it appears that it's possible to have nerve pain in the knee areas due to a T10-11 protrusion, though it's rare. Disc compression or protrusion at L3, L4, and L5 can definitely cause nerve pain in and around the knee area. I know because I've had this myself. If you haven't done so already, do a search for "Dermatome Map." It's a map of spinal nerve roots and can help you to visualize where your nerve pain might be coming from. If you see any correlation to your own situation, then keep looking for another Doctor that is wiling to help you instead of dismissing you. It's your body and you have to live with the pain, so you have to advocate for yourself. Not to be harsh, but I have learned this myself from decades of experience.

Have you seen a neurologist at all or a spine specialist (either neural or ortho)? Or was it your Rheumatologist who said your disc issues were too minor?

@angrynerves Hello and welcome to Connect. I realize that you've been getting the runaround with specialists. Not all spine specialists are equal of course. My suggestion is to see a spine deformity specialist who does a lot of surgical cases for scoliosis. My spine surgeon at Mayo is that type of specialist with both neurosurgery and orthopedic surgery training. When you think about your spinal cord, imagine that it is a rope inside of a garden hose. Every time you bend and move the hose, the rope inside has to slide back and forth to compensate. With scoliosis, you have a few slight kinks in that hose that may have already added some pressure or should I say less mobility to the spinal cord. You described what sounds like a bulging lumbar disc and the protrusion at T10/11. Is that a herniated disc or is that a vertebrae slipping past another one?

I can tell you that when you have compression of the spinal cord or it is touching or raking past some protrusion inside the spinal canal, that can be a confusing problem to diagnose because it isn't clear what specific part of the spinal cord is affected and that can change where contact is made as the spinal cord moves. If the issues are compression at the nerve roots, those are easier to diagnose because those are specific nerves that are mapped in the body and it is all predictable.

I had a confusing case with slight spinal cord compression in my neck and there was no nerve root compression. My pain symptoms moved if I changed my body or neck position, and I had pain felt all over my body which made some surgeons thing it was an inflammatory problem. It was after I found medical literature with cases like mine, that I had an answer. I found that because of reading literature co-authored by a Mayo surgeon and looked up what I didn't understand and that lead me to this medical case in an online journal. I sent that paper with a request for an appointment and I had a C5/C6 fusion at Mayo which fixed the problem. 5 other surgeons missed the correct diagnosis. If you are able to travel and be seen at Mayo, I would recommend my surgeon, Jeremy Fogelson who is a deformity expert on scoliosis. You would need to have insurance that Mayo accepts in order to get an appointment. Here is his information and a video where he talks about his interests. The really good thing about being a patient at Mayo is that all your specialists in different departments will collaborate in your care and discuss your case with each other.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
Dr. Fogelson video
https://medprofvideos.mayoclinic.org/videos/adult-scoliosis-treatment-options-at-mayo-clinic

how about try acupuncture, it helped me

The thing that stood out to me in your story was the air mattress. I rolled over in bed one morning and haven't been the same since that day. I've had two children and not even that compared to the pain I felt that day. My right arm and hand hurt so badly, I think it would've felt better to just cut it off at that point. I saw doctor after doctor. I had emg's, MRI's, CT scans, if there was a test to have, I had it. I rode horses, jumpers. I remember one day in particular being on my horse after a good rain. We were in a slow gallop up a hill when he slipped. I got pinned under him and I remember my neck being twisted a bit. Nothing major. Like if I had maybe slept on it wrong. I was young at the time. Apparently, it was a bit more than just a "crick" in my neck. The spinal cord injury didn't make itself well known until the morning, many years later when I rolled over and tweaked it just right. After 3 cervical surgeries, 2 back surgeries, having a pain stimulator implanted (which was removed during one of my surgeries, never helped) taking Gapapentin, Lyrica, opiates, PT, doing anything I thought may give me some relief, I still have the pain today. My was indeed, eventually diagnosed as, RSD at the time, but CRPS. It has spread to my left arm and hand and started on my legs. The pain is better today, but with something like this, I strongly believe that your pain threshold increases. Pain is pain, it hurts. The degree of pain is subjective. At least now, my pain comes in flares mostly. It's always there, but when a flare up presents itself, it will put me in the bed. Still not ideal, but much better than the constant, unrelenting pain that it was and that you seem to be experiencing. Read some of the CRPS stories on Reddit. I think you'll find yourself in some of those. Don't give up. I saw specialists that were puzzled. It wasn't until I needed a new PCP that I got an answer. She recognized it as being RSD almost immediately and treatment began there. One thing that gives me a little relief is compression. I wear arthritis gloves. Something about the compression is almost soothing. Good luck, and don't give up.

EDIT* I was prescribed 2mg Valium that helps more than an opiate ever did. I only take it during a flare up and it actually gives me a little relief.

I absolutely agree with this - do NOT let anyone tell you no, we’ll wait and see, etc.

I agree - bring your mom to future doc visits; after you both have read every word of all imaging, as well as doc notes. Almost all docs have ‘MyChart’ or similar, where everything they put in your note is available for you to read.

Unfortunately, you will have to do a lot of reading/investigating causes for symptoms - start w/Youtube. Now apply this sleuthing to understanding your imaging reports as well as any notes you can get.

When you have a good handle on causes, go to a doc - I don’t know if you want to start with a new one. It seems like the current ones have washed their hands of you, so it may be a good idea. Try to go to a University based physician - not a small town Ortho/GP/GYN!!!

I would definitely ask what their feeling is with your +AS antibody test, how they want to treat you. Of course, you will have all of this info written down, and you will be super smart and NOT let them say any BS that doesn’t give you a treatment plan.

Did they do a full RA work-up? Has your SA been repeated?

Good luck,
Karen

Can you please spell out all your CAPS (DRPS and RSD) and what they mean, I have been dealing with post spinal issues and see my surgeon for a follow-up in a week and would like to discuss with him my ongoing leg pain. I have almost a failure of the leg when walking, fortunately they have both not buckled at the same time or I will go down again. I keep falling. I am back on Gabapentin, have tried Lyrica and every other night Oxy for pain as too much causes migraines. Tylenol and Advil have created major gastro issues and now I have periodic illuis so also taking laxatives.

Sure
CRPS-Complex Regional Pain Syndrome, formerly known as RSD- Reflex Sympathetic Dystrophy. It normally occurs after trauma or surgery and the pain is disapportionate to the initial trauma. Usually starts in a limb and can spread to the other side. It's thought to be a disruption in the sympathic nerve system. The pain is severe and mine is usually a burning, stabbing, sharp type pain during a flare up and more of a deep, aching pain all the time. I also have numbness and tingling in my right arm and hand. Hope this helps and good luck to you. If you have any questions, please ask.

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.

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!

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