My pain is now a mystery!

You might ask for a bone spect. https://pmc.ncbi.nlm.nih.gov/articles/PMC8544734/

Maybe an MRI with 3D rendering would show something. Posssible something impinging on your cluneal nerve. Would MRI with you lying prone matter?

If it hurts then there's something wrong.

Thanks for the courtesy of the response.
Out of 6 physicians no one can give me a reason as to why I have this excruciating pain!

@dennismm reading your post….can you recall what you might of done prior to the pain coming about? Did you have any kind of infusion? Did you fall or get hit by something? Between having Ankolosing spondylitis, which gave me a lot of leg cramps and burning throughout my legs. Then I had Bladder cancer and while receiving treatment it was suggested that I have a Urolift implant due to enlarged prostate. The burning was so bad they had to remove what they could of the Urolift; leaving the nylon clips because they are on the back side of the prostate ( only way to retrieve them would be to remove a fair amount of my prostate and I felt intimacy would be zero and felt it still to be a part of my life, so I declined the removal of the prostate). This caused a constant burning sensation anytime I would void and would subside as time went by until I voided again. Then it was recommended I received a Reclast infusion due to potential complications from osteoporosis. I received the infusion, flu like symptoms started, which was expected. Then all of a sudden….left foot and both shoulders pain, nausea, fatigue, blurred vision, muscle aches and pains then like electrical shock in my lower back into my groin area and thighs. It has been 27 months and I’ve been to all kinds of specialists and not one can explain my symptoms and yet they want me to receive another infusion! No Way! Best of luck to you!

@dennismm, I had a similar situation with Fibromyalgia/Arthritis pain. My Endocrinologist insisted I see a Rheumalogist....they no longer take Medicare for Fibro patients. I looked up a Fibromyalgia/Arthritis doctor. He works in a Spine Pain Clinic. Best decision I ever made. He wrote me a compounded pain cream ($80)and it takes the edge off the pain to where it is tolerable. No opioids in the cream either! I go back in a few weeks for trigger point injections.

Is there a spine pain clinic you can be referred to? Tell them up front you prefer not to take opioids.

I am so sorry you are going through this and I am praying for relief for you. This has got to be miserable.

@covidstinks2023
Very kind words, thank you!
No one seems to understand the source of my pain. Did 2 MRI’s neck, back, nothing. I’m trying though!!

@dannyandebbie
Whew, you have been through hell and back! So sorry to hear what you are going through. All I can say is I hope you feel better either way no pain!!

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.

Have you tried one of the centers of excellence such as the Mayo Clinic?

I’ve just been going to local physicians.
With all my pain I’m not walking or driving too much.
Thanks for the suggestion!