My doctor doesn't find a spine problem; what else could it be?

Hello @dougs72 . Welcome to Connect. There is a condition called Lumbar Plexus Compression Syndrome and it can mimic a spine problem. There are several muscle groups that connect the spine and the pelvis, and if those get too tight, it pulls on the spine and pelvis, and can pull the pelvis out of alignment. I have had this happen and when my pelvis is off, I get low back pain on one side, and sometimes pain radiating from the groin, and sciatic pain. If the hip flexors get too tight, it can trigger this. I have worked with my PT who does myofascial release and the key to fixing that for me, is to loosen the muscles who are causing it. Here are a couple of links for information.
https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/
Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Myofascial release is specialized training and not all PTs know his technique. You can search for an MFR trained therapist at this link. http://mfrtherapists.com/

I do MFR a lot, and I continue to do it at home as I cannot see my therapist as much as I would like, but she will help if there is something I can't do myself. I am a spine surgery patient too and had cervical surgery. This is a lot of slow stretching of tissue and fascia to get it moving again and relieve the pain. It really can help, but it takes a lot of sessions as you work through the layers. You don't need a specific diagnosis to do this. Pain is enough to warrant PT sessions. Find the right therapist who has more training in fine tuning.

dougs72, you might see a chiropractor. Chiropractors have a good understanding of spine mechanics and could offer you a thorough exam. There is also the chance that they could effect fairly immediate relief. The other advantage is that you can usually get a same day appointment.

Have you considered seeing a physiatrist (physician medicine and rehabilitation) and/or a consultation with specifically a pelvic PT?

@jenniferhunter offered some great leads, and I agree the lumbar spine/pelvis/sacrum, all of that is really complex. I was referred to pelvic PT specifically for pelvic pain and bladder issues but I also have chronic SI and low back pain. I learned from that experience that pelvic PTs have additional training specific to this part of the body so have a more in-depth understanding about those muscle groups and nerves and how it all interacts. They were able to help me make a lot more progress, more quickly than with a regular (orthopedic) PT.

And I love my physiatrist. They’re internists with more knowledge about physical rehab, and tend to look at the “big picture,” with more of a focus on getting back function, whatever that looks like for each person.

Wishing you all the best.

@dougs72, @emo Thanks for sharing your valuable experience and insight.

It is exhausting to have these problems and to be in pain when walking. When this first started for me, I was having trouble walking very far and I was at an event where I had to walk a mile on a trail to get to a fair. I had to keep stopping and resting by laying on my back on benches that were placed along the trail. My PT has worked with me, and I do reset my pelvis fairly often because one side tends to get pulled forward by tightness on that side of my body, and tight hip flexors. Sitting too much tends to provoke problems. I do a lot of myofascial release to maintain body alignment and movement. I also have thoracic outlet syndrome which causes tightness in my neck and rib cage which links to my pelvis. It's my pattern of what I know happens, so I do my own therapy stretches at home.

@dougs72
I have had similar symptoms. I do have cervical and lumbar spinal stenosis and degenerative disc disease and lumbar spinal injections have helped me somewhat in managing pain (also use Salonpas lidocaine pain patches). I had surgery on my cervical spine due to myelopathy neurological symptoms. Like you, I started to have new pain in my lower back, hips, buttocks and upper thighs making it hard for me to sit, stand or walk for long. This seemed to follow a time I twisted my back when moving in bed and when trying to start gentle exercises and stretching after a long period of inactivity. After getting updated MRIs of lumbar, cervical, and thoracic spines, I went to a hip specialist and they sent me for a MRI of pelvis/hips because the X-ray didn’t show any issue with the hip joint space but I was experiencing pain in my hips/buttocks. The MRI showed bilateral gluteal tendinopathy (tendinitis/tendinosis) and bilateral high grade partial hamstring tears (hamstring tendinitis). This caused my pain and weakness. I need to now go for PT to help strengthen/heal injured/weakened muscles gradually and my doctor recommended topical Voltaren pain cream. I hope you get answers and some relief before the wedding!

Thank you and yes I read this from other posts you had made. It's pretty technical. One of my main issues is that when they do these tests on me (ie. moving legs and hips/pelvis etc..) the pain isn't necessarily induced, but will get me a little while later, for days to come. So the tests aggravate the situation more than it already was, but the aggravation taking a bit to fully hit me. Also when I lay down for MRIs, I'm seemingly not in a lot of discomfort, and then they show nothing of note so to speak. But I can't sit in a car or in a dentist chair. Sitting has to be upright, and leaning forward, to give me some comfort. I just sit all day cause not a whole lot else, is comfortable.

I appreciate your response however, and I will contemplate your advice.

I appreciate that. Generally I can sit, but can't do much of anything else. These little pockets of muscle spasms up and down my leg are annoying, but the hamstring and back pain when I walk can be brutal. Again my biggest issue has been no clear diagnosis, and I'm really hoping the the SI joint is at least one or part of, the diagnosis

Thanks for responding. I am afraid to do my own stretches because I don't understand what will work and what will make it worse. I don't know what more to do other than sit, cause everything else is massively painful.

As I've stated in my 1st question post yesterday (and thanks to those of you that responded)- I have an issue I've been dealing with the last 5 years, but last 3 months it flared up so badly, that I haven't been able to drive, or walk more than around the house a little bit at a time. No real diagnosis except for possible SI joint dysfunction. negative lumbar and pelvic MRIs and hip Xray. To recap my symptoms are:

-sharp and dull pain deep inside lower right back/hip, on and off
-pain in lower right back when I extend my right arm & abduct it to the right at all (this one is baffling cause it's seemingly not connected but I can feel it "pulling" on that lower right back/hip area.)
-cramping burning pain in hamstrings/back of legs, sometimes to mid calf
-both sides of groin feel like groin pull injury (no actual genital pain)
-Cannot twist to the right at all, without pain
-also I get a dull pain sometimes when walking directly below the ribs on my right side. Not all the time, and not terrible, but dull. this has been happening since it first happened.
-small pockets of muscle spasms all over right leg, mostly while sitting

sitting and bending forward is generally to only thing that offers some relief. Laying down generally feels ok as well, after it calms down.

Not having a certain diagnosis has been very difficult. Therein lies this question- Because the pain is particularly bad when I walk more than 20 steps (especially the massive cramp feeling in my lower right back and hamstrings/calves) is it advisable to continue walking further and further in an attempt to get better or rehabilitate this is someway? Is there a diagnosis that it would be inadvisable to keep doing this as a form of rehab? PT has been ineffective because they don't know what it is either

No apology needed. Those of us in terrible pain are constantly looking for the "magic bullet" I gave up on that a while back. I would gladly settle for SOME pain reduction. Diagnosing the cause of pain seems to be one of those mysteries that is not easily solved. Then, if it is diagnosed, there's the issue of treatment. Surgery, medication, PT? I discovered 7 years ago when my pain journey first began that you have to become your own best advocate. Most docs seem to be either overwhelmed with patients or just plain indifferent. Look for second, even third opinions. When I read some of the heart-breaking posts here, I am saddened to think that there are so many people even worse off than I am. I am a strong Christian, and I find myself frequently asking God why I can't seem to find an answer to my pain even though I and many others have prayed and continue to pray for me. I have to remember that scipture reminds us in 2 Corinthians 4:17... "For this light momentary, light affliction is preparing for us an eternal weight of glory beyond all comparison".