Sacroiliac joint pain and my introduction

Posted by mdmo @mdmo, Jul 14, 2018

I'm a female 60 years old. I have a titanium H cage from L-5-L2. I have post lamenectomy syndrome, AKA Failed Back Syndrome, AKA Arachnoditis. They've punctured my dura space more than 6 times requiring a "blood patch" 4 times. I have a spinal cord stimulator and a implanted intrathecal morphine pain pump. They had to use donor bone for my fusion due to my arthritic hips. So I also got a bone growth stimulator thrown in for good measure.
I lived in Texas for a while and the pain management doctor insisted on doing epidural steroid injections. I had no idea how bad they were for you. I was given 13 ESI's in 12 weeks.
I got so sick one day vomiting and passed out.
Rushed to ER with a Addisions crisis. I didnt even know I had Addison's disease. After all the tests were done yes I was told my adrenal glands were not functioning and i almost died in the hospital. Now i have to take 15 mg of Hydrocortisone (more steroids) in divided doses the rest of my life because of those steroid injections. Malpractice, oh you bet. In Texas unless you die and your case is worth multi millions you cant get anyone to touch your case.
I turned this doctor into the medical board, they called me 1 time, I never heard another word.
I'm in Missouri now. My current pain management doctor is weaning me off my pump by 15% per week. No withdrawal symptoms so good so far.
I've had radiofrequency ablation on my SI joints, no good. I'm taking Ultram 50mg 3 times a day now. How do y'all manage your SI joint pain?
Thank you for your time and support.

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windyshores | @windyshores | Nov 27, 2022

In reply to @soby "If you have SI problems, look into Prolotherapy. Worked for my knee." + (show)

The PRP type of prolotherapy helped my daughter.

cookierockwell | @cookierockwell | Nov 28, 2022

In reply to @lindy12 "I’ve been suffering from what doctor determined was Sciatica since July. I’ve had two S1 joint..." + (show)

I'm sorry you're going through so much pain.

I take prescription 500mg Naproxen twice a day, sometimes three times when my pain is especially bad. I take the over the counter 650mg Acetaminophen 2 to 3 times a day, staggering it with my Naproxen. Sometimes after months and months of Naproxen, I feel it's not working as well, so I ask my doctor to switch me to prescription strength Ibuprofen.

I also take Mirtazapine at night, which helps me to sleep, and alleviates my pain. My PCP told me it's a very bad antidepressant, but a very good sedative that lessens pain in some pain. Being able to sleep for longer periods of time at night sure helps me cope better with the pain during the day.

I sometimes put a lidocaine patch on my Sacroiliac, where I have a herniated disc and a Tarlov cyst that push against each other.

I use medical marijuana tincture (Indica), a topical salve (Hybrid), and sometimes I'll rub in my tincture on my SI joint area because the tincture has more THC than the salve.

I keep a cold pack in the freezer, and put that on for no more than 20 minutes at a time.

I have the wonderful new heating pad from Sunbeam, which allows the heat to penetrate deeper. It's a godsend.

PT didn't help me much, so my pain management doctor and neurosurgeon told me it was okay to do sitting yoga. Silver Sneakers and YMCA360 both have free seated yoga and other seated exercise routines. I try to do the yoga every day. On better days, I'll do one of the other routines as well. The yoga helps my mind as well as my body. I love it.

When my pain is especially bad, I'll also look for a comedy show or movie, and watch that. Laughing releases endorphins, and endorphins help lessen pain.

I hope you can find something in here that might give you some better days. I know it's rough.

Best wishes to all for a day with less pain.

scruffy1 | @scruffy1 | Jan 18, 2023

In reply to @scruffy1 "Update: 3 months have passed and no SI joint pain but still some incision site/scar tissue..." + (show)

It is now 5 months from the SI fusion. I have no SI pain whatsoever. I'm planning to get the left side done this coming summer if it keeps acting up, but on the up side, lately, my chiropractor's adjustments are keeping the left pain-free.

scruffy1 | @scruffy1 | Jan 20, 2023

In reply to @scruffy1 "It is now 5 months from the SI fusion. I have no SI pain whatsoever. I'm..." + (show)

@cookierockwell

I've written a lot about what i was through with SO many specialists, if you go back and review that, but basically my chiropractor was my savior. She kept me pain-free on and off for 8 years until the alignments didn't last long and I got the fusion.

Over the years before that, traction worked very well for my sacroiliac instability/alignment. I still wear an SI belt when I play golf, learned about it on YouTube. If you go on that website, search under "sacroiliac instability." There's LOTS of good info. Best of luck!

cookierockwell | @cookierockwell | Jan 20, 2023

In reply to @scruffy1 "@cookierockwell I've written a lot about what i was through with SO many specialists, if you..." + (show)

I would love to see a chiropractor, but unfortunately, I've had a terrible time with the ones on my insurance plan. For example, one very nice guy talked with me for a half hour, very hopeful he could help me, then informed me that he doesn't, after all, accept my insurance, and it would be $450 for my first visit.

Another I went for my first visit, and at they told me that instead of my $5 copay, my first visit would be $150, then visits after that would be $5.

Both should have told me when I called to schedule the appoint. Instead, I spent $$ on Uber to go out and back from both appointments. Wasted $$$.

scruffy1 | @scruffy1 | Jan 20, 2023

In reply to @cookierockwell "I would love to see a chiropractor, but unfortunately, I've had a terrible time with the..." + (show)

I'm sorry to hear that. I went to one that my ortho surgeon recommended. Two sessions and she relieved my pain. When she was on pregnancy leave, she sent all of her patients to another chiro she knew along with instructions about how they are being treated...so there must be someone reliable out there.