My pain is now a mystery!

I'm hoping this helps @dennismm as well as anyone else reading these posts, looking for answers. Do not let how terrible the US healthcare system is right now discourage you, or make you feel this is your fault. I know how terrible it can be when no one knows what they should be treating, as I have been in pain all day, every day, since July of 2023. I woke up with low right side back back pain that got severe enough to where my wife drove me to the ER (July 7, 2023).

They ran a CT scan of my abdomen and pelvis, no findings for organ problems or kidney stones, and I was sent home with the same pain I went to the ER with. I went to a second ER about a month after this first time, as it felt like my right side was being inflated from the inside. Another CT scan, this time with contrast, showed nothing that would cause the pain I described. This is what they said, anyway, even though I found out later that both ER doctors I saw either do not know what they are doing, or they straight up lied to my face. After reading the reports from my CT scans, I found something each doctor either missed, didn't know what they were looking at, or lied. None of those options are good for the hospital (Cedars - Sinai for those wondering) or their doctors.

This has now progressed to my right-side Oblique and Flank muscles being constantly locked / spasmed, which causes all day, every day pain. From when I get up until I go to bed I am in constant pain. The only relief I get is laying on my back. After 10 to 15 minutes, most of the pain is gone. But as soon as I get back up, the pain starts immediately.

I am now at my 4th PT office since January. About (2) weeks ago, one of the co-owners worked on my QL muscle that is locked on my right side. Unfortunately, this made the pain worse, and the Oblique / Flank muscles now cramp without much of any stress on them. This prevents me from doing the PT exercises and stretches I have been assigned, never mind getting back outside to walk around the block.

This has been going on for over three years now, and I have seen more than (30) medical professionals at the (5) major hospitals in my city. These are the ones everyone thinks are elite hospitals (I mentioned one of them above), but once you use them, they are all pretty average to downright terrible when it comes to not treating their patients like human beings.

I have been to multiple chiropractors, acupuncturists, physical therapists, as well as MD's, DO's, Physiatrists, Hip Specialists, Spine Specialists; I have had every image and blood test run, I have tried several medications and treatments (Trigger Point injections, Dysport injections, Cupping, Trigger Point Massage), but nothing has relieved the pain I am in. And not a single person I've seen or been treated by over this (3) years has any idea why my muscles are locked and will not release no matter what they try.

I have been eliminating what I can by seeing the doctors that I can actually get appointments with (this is a subject for an entirely different post). My hips are good, I do not need spine surgery, and when I can actually do PT, I usually have better range of motion than expected in my hips and hamstrings. I saw a Pain Management Specialist last week (Aug 26th), and she has me scheduled for an Epidural at what looks like to be the L1 location of my spine.

I have had three Epidurals over these past three years, two at T-12/L-1, one at T-11/T-12. From where I described my pain is radiating from, above my right hip on a downward angle forward towards my naval, the doctor immediately said L-1 would be where that pain is originating from. I now have an appointment for an Epidural at L-1 next week. I am really hoping for some relief, at least a second Epidural can then be scheduled to relieve as much pai as possible.

Good luck, everyone, it is crazy out here and you have to advocate for yourself at every opportunity you get. Do not stop researching, writing to people, seeing medical professionals, and asking questions.

@marcd2k
I have an almost identical situation as you on my left. Years of appointments, images and treatments and no clear answers. Through my own research I’m now thinking my issue is coming from the Thoracolumbar junction (T12-L1) area and associated nerve roots. I’m presenting this hypothesis to my pain Dr next week. Did you get any relief from your T-12/L-1, and T-11/T-12 injections? Why do they think the next injection at L1 will be different than the first ones you had? I believe my condition could be broadly referred to as Thoracolumbar Junction Syndrome (also called Maigne Syndrome). Also my MRIs are clear, which is a typical situation with this syndrome and why the average Dr will miss it.

Read John Sarno MD Healing Back Pain
If nothing else helps, and if nothing is found, This is the best safest least expensive route to go

@georgewater Good morning, George, thank you for replying. Unfortunately, the three epidurals I have had did not do any good. The two at T12-L1 did not relieve any pain at all. They did not make things worse, either, there was no difference at all after these two epidurals. The third epidural, which I had back in February, is the one that has caused more pain than before getting the epidural. There was intense pain during the epidural, which I did not have with the first two, and (48) hours afterwards, my pain and cramping were worse than before.

The T12-L1 injections were based on two different MRI's of my spine, done at two different hospitals. The first was at Keck of USC, the second was at UCLA Health. The Keck epidural was done by an Orthopedic Spine Specialist, and the UCLA one was done by a Nerve Specialist. This UCLA nerve doctor also did Nerve Conductivity testing and found that I have Denervation at the T12-L1 area of my spine / back. So, both doctors had their suspicions based on what they found with this testing / imaging.

The T11-T12 epidural was done by a Cedars-Sinai pain management doctor based on a seated MRI I had done. This doctor said from what he saw in the MRI, we could try the epidural at this T11-T12 junction due to a possibility of the nerve being compressed there. As soon as he said we can "try" the epidural, I should have asked for a more positive answer than that, which was like throwing darts and see what happens. As I stated previously, this T11-T12 epidural was very painful during the injection, which neither of the other two were. The first two also did not result in more pain afterwards, but this third epidural caused more pain and cramping that has never calmed down to this day.

This latest pain management doctor that I saw on August 26th was very sure where she thought the pain was originating from after I described the pain as starting above my right hip, then moving forward in a downward, diagonal direction towards my naval. It doesn't reach all the way to my naval, but it heads in that direction along my Oblique muscles. The doctor immediately said, "That's at L1", and she is the first person to say this. She went over the options for treating the pain, from the epidural, to trigger point injections, to topicals (CBD), to medications. When asked which one she thought has the best chance of relieving the pain, she said the epidural without hesitating.

So, I now have an appointment for another epidural this coming Wednesday, Sep 9th. I will update my situation here as I move forward, hopefully I can help others as well as myself, because I know how horrible this whole situation is.

@marcd2k I wish you luck with this next one. Hopefully it’s the one that gets you relief. Look forward to hearing how it goes.

@georgewater Good morning, George, thank you for replying. Unfortunately, the three epidurals I have had did not do any good. The two at T12-L1 did not relieve any pain at all. They did not make things worse, either, there was no difference at all after these two epidurals. The third epidural, which I had back in February, is the one that has caused more pain than before getting the epidural. There was intense pain during the epidural, which I did not have with the first two, and (48) hours afterwards, my pain and cramping were worse than before.

The T12-L1 injections were based on two different MRI's of my spine, done at two different hospitals. The first was at Keck of USC, the second was at UCLA Health. The Keck epidural was done by an Orthopedic Spine Specialist, and the UCLA one was done by a Nerve Specialist. This UCLA nerve doctor also did Nerve Conductivity testing and found that I have Denervation at the T12-L1 area of my spine / back. So, both doctors had their suspicions based on what they found with this testing / imaging.

The T11-T12 epidural was done by a Cedars-Sinai pain management doctor based on a seated MRI I had done. This doctor said from what he saw in the MRI, we could try the epidural at this T11-T12 junction due to a possibility of the nerve being compressed there. As soon as he said we can "try" the epidural, I should have asked for a more positive answer than that, which was like throwing darts and see what happens. As I stated previously, this T11-T12 epidural was very painful during the injection, which neither of the other two were. The first two also did not result in more pain afterwards, but this third epidural caused more pain and cramping that has never calmed down to this day.

This latest pain management doctor that I saw on August 26th was very sure where she thought the pain was originating from after I described the pain as starting above my right hip, then moving forward in a downward, diagonal direction towards my naval. It doesn't reach all the way to my naval, but it heads in that direction along my Oblique muscles. The doctor immediately said, "That's at L1", and she is the first person to say this. She went over the options for treating the pain, from the epidural, to trigger point injections, to topicals (CBD), to medications. When asked which one she thought has the best chance of relieving the pain, she said the epidural without hesitating.

So, I now have an appointment for another epidural this coming Wednesday, Sep 9th. I will update my situation here as I move forward, hopefully I can help others as well as myself, because I know how horrible this whole situation is.

@marcd2k
I have an almost identical situation as you on my left. Years of appointments, images and treatments and no clear answers. Through my own research I’m now thinking my issue is coming from the Thoracolumbar junction (T12-L1) area and associated nerve roots. I’m presenting this hypothesis to my pain Dr next week. Did you get any relief from your T-12/L-1, and T-11/T-12 injections? Why do they think the next injection at L1 will be different than the first ones you had? I believe my condition could be broadly referred to as Thoracolumbar Junction Syndrome (also called Maigne Syndrome). Also my MRIs are clear, which is a typical situation with this syndrome and why the average Dr will miss it.

@marcd2k I would not go for another epidural; the exposure to steroids is not something to be taken lightly. I certainly would not get another epidural from the same physician. A different doc may use a different technic and different medicine. I hope these are being done under x-ray guidance. If I were you I would seek out some other modalities like acupuncture and after that chiropractic doc. I hope you can find an acupuncturist where you live. Chiropractors are everywhere. Hope you are feeling better. Do you lift weights? Perhaps this is muscular in origin?

@georgewater Are you seeing a spine surgeon?