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

@dougs72
If your MRI shows inflammation or injury in your SI joint, then an injection in the right spot may help. Have they done or will they do a hip/pelvis MRI to see what it shows and help focus treatment? My understanding is there is a functional type of MRI to show differences with movement. Static MRI may not show source of pain with functional movement.

Has anyone done X-rays in multiple movement positions? Do you have slippage of one vertebrae on another during movement?

Radio frequency ablation can be life changing for people that have SI joint pain. And if you are seeing a little bit of improvement from your injection, your doctor may be heading in that direction.

I have an autoimmune disease that has been messing with my back for many years. I've had two lumbar spine surgeries in the past and in 2018, my left SI joint was fused. My disease is progressive and has become much more active in the past couple of years.

Low back and SI joint pain is tough. I have had 17 MRIs on my low back and pelvis. There are times when a scan shows only osteoarthritis because I'm not particularly inflamed that day. Less so now that I'm in an active disease state.

I recommend that if you are regularly taking anti inflammatory drugs, stop taking them for a couple of weeks before a scan. Only if your doctors feel this is safe for you to do.

I know that for me personally, letting myself get inflamed pre-scan has been quite helpful. It's miserable because my immune system goes crazy when I'm not suppressing it but it's worth it in order to get a diagnosis and better treatment options.

Not sure if this helps you but hopefully it will at least give you some ideas.

@dougs72 From what you are saying here that you need to sit and lean forward to be out of pain, that tells me that your hip flexors are probably very very tight. That will put pressure on your spine and pelvis. Sitting all the time causes hip flexors to be tight aggravating the problem because you need to stand and be able to move your leg backward to take a step forward with any length of stride. Your walking stride is probably very short. You may want to ask your physical therapist or doctor about this.

It will hurt a bit to press on the hip flexors to relieve the tension in them. My PT has used her elbow to press on mine when I'm on my back or I can lay on a small ball placed right inside of the Illium (pelvis) hip bone. I can also do this standing with a ball against the wall and lean on it with pressure. I think MFR would really help you, but you'll need to release the hip flexors before you can really benefit. You have to keep moving correctly or your body gets tight and stuck. I have to do this too or I will get back pain and my pelvis out of alignment. What helps me maintain strength and alignment is everything I do in owning a horse and trail riding. It's hard work to groom a horse, lift the saddle on and off his back, and I ride with good posture, and just a walking will strengthen my core muscles as I compensate for the horse walking. There are many therapeutic riding centers that offer this type of physical therapy.

I think what you are describing with pain that comes later is what happens when you overwork or overstretch something. That tells me that you do not move that much. That is fascial pain because it is stuck and dehydrated. You might not be drinking enough water which you need to flush out the waste products from living. The fascia is that cobweb like stuff that binds everything together. You have seen this before if you have removed skin from a raw chicken. It becomes somewhat liquid and reshapes itself with movement. Injuries, scar tissue, inflammation and being sedentary will kind of "cement" the fascia in place and prevent it from moving which is where you are right now. The fascia is important for transporting body fluids that help clear out waste products of metabolism and it weaves through and holds every muscle together and is an interconnected web throughout your entire body. MFR fascial therapy is for the most part not painful because it is very gentle massage and the PT waits for the fascia to unwind itself. You may experience some soreness when it first is worked on because it sounds like everything is stuck together. It will be the therapist pushing with "hands on" doing the work while you lay on a table. This cannot be solved in a day, and will take repeated sessions to work through and loosen all the layers of stuck fascia. Here is a video of living fascia so you can see how it is supposed to move. You can skip around, but probably want to look at the second half after they have talked about how they set this up.

There is a provider search at http://mfrtherapists.com/ and our discussion about MFR therapy:
Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

You may want to find an MFR provider and call them up and discuss your situation. They can tell you more about how they can help. When you had physical therapy before, what was the therapist having you do that wasn't helping?

Thanks for all that- My DR. mentioned SI fusion, but never ablation for SI? I'm actually getting a lidocaine shot in my Facet joint next week, mainly to rule it out (I don't think that's the issue)...but if it was, they could then do ablation. But for SI joint? I have not heard of this?

I appreciate all this info. My situation is so confusing. I mean movement of my arm is even connected to it...WTH? if I extend my right arm straight out, and then move it to the right, it immediately pulls on something in my lower back/outside hip and it's super sharp pain. But it's deep I don't know if that abduction just twists it at the waist a bit, causing the pain or what, but man it sucks. Regarding the sitting, I'm trying to figure out if I should be walking more, even though my hamstrings/back of thighs, and even halfway down my calves, feel like they are pulled and burn after walking 25-30 steps. Will continued walking help, or hurt this situation? I'm trying to exhaust every test and option at this point, and added your advice to the mix. much appreciated. The dehydration thing makes sense to me for sure. They didn't want to do a whole lot in PT cause I was in so much pain without a clear reason, that we decided to wait until I had some insight to my affliction, before I went back. I will look into the MFR though.

Yes, the lidocaine shot is definitely a diagnostic tool. It can also be done on the SI joint. In fact, my surgeon performed this same procedure on me to verify that dermatome pain I was having was in fact SI instead of coming from a nerve root in my l-spine. My results were immediate and led to my SI joint fusion 3 months later. As an aside, I'm also fused from L4-S1 and have degenerative changes of varying degrees caused by my disease from T12-L5.

Ablation of the SI joint has a good success rate. It's relatively easy for the specialist to hit the correct nerve that causes the majority of SI joint pain. When compared to the tight quarters of lumbar and sacral spine ablation, as far as I understand it.

I've seen a few friends undergo the SI joint ablation, one a medical doctor. Relief seems to last a minimum of a year and up to three or four years anecdotally. I don't know what the actual statistics are but I would be they are easy to find.

Maybe something to discuss with your doctor?

One last thing, don't let yourself get locked in with one surgeon without getting at least one other opinion. Backs are tough and as my ortho surgeon once told me after a nerve conduction study came back negative, "nerves are weird." My left leg was numb on the L5 and S1 dermatomes, I had a pronounced foot drop and leg drag and was no longer able to drive or even walk much past the mailbox. My nerve roots were absolutely covered in scar tissue and adhered to various tissues: disk, bone, ligaments. I had major nerve root compression for over a decade. I was a mess but the MRIs weren't picking up the extent to which my back was damaged. Took 17 more years to get diagnosed with my autoimmune condition. Two years ago.

All this explanation to say that I've been where you are. Don't give up and don't settle for vague answers.

I'm happy to help if you have more questions. I'll answer as best as I can or point you in a direction where you can find more answers.

@dougs72 - as you mentioned, I moved your new discussion and combined it with your original post in "Searching for a diagnosis and help" - https://connect.mayoclinic.org/discussion/searching-for-a-diagnosis-and-help/ - so members you've met and discussed with could see your new post as well.

I never thought of that. Can that be done?

thank you!