Chronic SI Joint Pain

Posted by healthinsurancesucks @healthinsurancesucks, 5 days ago

I’m a 25M suffering from chronic pain in my left SI joint. The problem started when I was sledding on a hill, lost control, and I ended up crashing into a tree when I was 17. The impact caused my left knee to hit my face, but I was able to stand up and walk afterwards with sharp pain in my left glute. Over time, I ignored it and didn't think much of it. During the meantime, I was doing physical therapy for about 2-3 months, but was sent to see an orthopedic surgeon, who then ordered a hip arthrogram. According to the report, there was a stress fracture in the left iliac bone parallel to the sacroiliac joint, and nothing could be done about it treatment-wise. Later on, I went to see a pain management doctor who ordered an MRI of the lumbar that came back normal, and then proceeded with a bilateral SI joint injection with no relief.

The pain and discomfort that I feel on a daily basis feels like when you make a fist, and you use your knuckle and press it into your SI joint, and it is always there constantly like a dull or aching pain. I feel it the most when I lie on it or sit too long. Most days, I would experience sharp glute pain in either the left or right. Some days I would feel sharp pain in both my front hips or the lower back L4-L5 area. (And every time the doctor asks where the pain is, I am pointing directly to the left SI joint.)

A few months go by, and I ended up moving to another state. I saw a new orthopedic surgeon who ordered blood work, and it turns out I was positive for HLA-B27 with normal ESR and CRP (never has been elevated) markers, and was referred to a rheumatologist. The rheumatologist started by giving me biologic medications for approximately 4 months each. The rheumatologist referred me to a new pain management doctor and ordered a CT scan of my pelvis. The rheumatologist declared that I have ankylosing spondylitis, but here is the CT report.

“Skeletal System: Both sacroiliac joints show articular cortical
erosions and subchondral sclerosis suggestive of bilateral inflammatory
sacroiliitis. HLA-B27 correlation is suggested. Both hip joints are
normal. Pelvic bones are otherwise normal.“ (they can see that stress fracture has healed)

And here is my most recent CT of the lumbar imaging report findings done this year.

“No acute osseous abnormality. An L4-L5 Disc bulge results in mild bilateral neural foraminal stenosis. L5-S1 Disc bulge.

Here are the procedures/medications that I have done in the past to present that have not worked.

Feb 2018: Bilateral SI joint Injection (Pain Doc #1)
May 2022: Bilateral SI joint injection (Pain Doc #2)
May 2023: Bilateral Ischial Bursa Injection (Pain Doc #3)
June 2023: L3-L5 Medial Branch Blocks (Pain Doc #3)
July 2023: Caudal Epidural Steroid Injection (Pain Doc #3)
August 2023: Left Hip Injection (Pain Doc #3)
September 2023: Trigger Point Injection in the Piriformis Muscle (Pain Doc #3)
October 2023: Left SI joint Injection again (Pain Doc #3)
November 2025: Bilateral Cluneal Nerve Block of the Superior and Medial (Pain Doc #4)
December 2025: Radiofrequency Ablation of the SI joint (Pain Doc #4)
January 2026: Bilateral Hip injection under X-ray (Pain Doc #4)
March 2026: Acupuncture
April 2026: Bilateral sacrospinous ligament, sacrotuberous, and iliolumbar trigger point injection (Pain Doc #4)
July 2026: Epidural of T12/L1 Bilateral (Pain Doc #4)

Biologic Medications
Cimzia, Rinvoq, Avsola, and Humira.cosentyx
Anti-inflammatory Medications
Meloixcam, Celebrex, Diclofenac, Naproxen, Nabumetone, and Ibuprofen
Other Medications
Tramadol, Cyclobenzaprine, Prednisone, Gabapentin, Cymbalta, and Pregabalin

Not sure what to do anymore, would like other people’s input. I was suggested to do a trial of the spinal stimulator, but I've read more horror than good stories about them. I was going to consider PRP but the problem is the fact that we aren't able to find where the actual pain generator is. Whether it's in my SI joint or somewhere else.

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loriesco | @loriesco | 4 days ago

@healthinsurancesucks - I am sorry! I know your pains well! I will skip all my stories but ask if you have tried shoe implants (those little leather pieces you put in your insoles) You can get fitted at the Comfort Foot Store. IF they relieve your sacral joint pain you might be surprised that your hip was tweaked during your injury. My "gait" was tweaked during childbirth. Also, it may be possible you have a piriformis disorder. That is where the glute muscles press on the nerves exiting the spine and cause problems with pain. Mine was kinda fixed after my hips and my lumbar was replaced and fused.
Also - RFA/RFI the "pulse method" did zero the "heat method" definitely worked! Sometimes you have to go back for the same area twice.
Also - find a really good MFR therapist. Worth their weight in gold!!! They will adjust you and if they are good (not the 10 minutes which insurance covers in P.T.) but a good one who will work on your for an hour or so - they will not only relieve your pain but be able to help with what it is and what it is not. They really know by seeing what responds. You might need to go a few times. But you will feel better and feel like you are making progress!
Finally: BOTOX! I did botox for my lumbar pain because the muscles were in spasm and as they press on the nerves and pull at the connective tissue you have constant pain. Getting them to relax through the paralysis will not only relieve your pain but help you with more diagnosis.
Fight to get this all covered. I did.
You did an EXCELLENT job of explaining everything! Most people don't so it is really hard to point people in clear directions.
I will take an intuitive guess: Your accident tweaked your hip out of alignment, and you have some arthritis which, when inflammatory by nature, causes pain. (Make sure you are on an anti-inflammatory diet. I have to be. Good luck. My journey has been lifelong - I am 69. My auto accidents and congenital issues influenced/exacerbated my lifelong issues. Builds character I say!

tamsue69 | @tamsue69 | 4 days ago

I’m sorry for your suffering! I have had some help from shock therapy for my hip, SI, glute and hip flexer issues after a hard fall after hip replacement.
Unfortunately it’s not covered by insurance and not sure why because it’s also helped my feet pain from neromas. I’ve tried so many things as you have! Good luck 🙂

barbarav1 | @barbarav1 | 4 days ago

You need some real pain meds! Oxycodone…start low. Tramadol did nothing for my pain. Gabapentin helped my mood, not the pain. I had PRP in my SI joints. First time I don’t believe enough blood was drawn, second time it was doubled and I believe it has helped! My anti depressants don’t stop my pain but I suffer in a better mood. I’m sorry you’re having so many problems at such a young age. I don’t know about spinal stimulators, seems like I’ve read people having problems with them. My pain doc wanted to fuse my SI joints. Then I read what another doctor thought. He said the SI joints move a little. If they don’t then it puts pressure on other joints and you could start having pain going down your leg, etc. I’m 84 now and looking at a possible hip replacement. And, of course, I don’t do any PT so that doesn’t help. I hope you get some relief!

artemis1886 | @artemis1886 | 4 days ago

Have you had an SI Rhizotomy? I have had it done several times. It helps. They burn the nerves to the si joint.

gently | @gently | 4 days ago

Did any of the pain blocks work, even for the brief hours after the injection. Did doc#3 plan all of the injection to happen over several months initially, or was he trying to locate the source of the pain.
It might be impossible to remember what happened in the hours following the injections, but I'm wondering if there are multiple sources of pain or if they are needling around to locate the source.
I would be especially curious about L 3-5 medial branch in 2023 and the SI injections.

healthinsurancesucks | @healthinsurancesucks | 4 days ago

In reply to @artemis1886 "Have you had an SI Rhizotomy? I have had it done several times. It helps. They..." + (show)

@artemis1886 Isn't that essentially a standard radiofrequency ablation? If so, I've already had one done with no relief.

healthinsurancesucks | @healthinsurancesucks | 4 days ago

In reply to @gently "Did any of the pain blocks work, even for the brief hours after the injection. Did..." + (show)

@gently Pain doctor #3 was trying to locate the source of the pain. May I ask why you're most curious about L3-L5 medial branch blocks in 2023? And no, nothing has worked for me, which is why all surgeons are afraid to do any invasive procedures.

healthinsurancesucks | @healthinsurancesucks | 4 days ago

In reply to @loriesco "@healthinsurancesucks - I am sorry! I know your pains well! I will skip all my stories..." + (show)

@loriesco

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@loriesco Thank you for response, I will definitely take your advice into consideration.

loriesco | @loriesco | 3 days ago

In reply to @healthinsurancesucks "@loriesco Thank you for response, I will definitely take your advice into consideration." + (show)

@healthinsurancesucks my experience is I hope will be helpful to others. Medical care and insurance do suck right now so we do have to depend on each other and try to be helpful where we can. Of course, use your best judgment.!