Sacroiliac joint pain and my introduction

Hello @mdmo,

You may noticed that I moved this discussion to the Bones, Joints & Muscles group as that is more where the members who have discussed sacroiliac joint pain in the past. I see that you have posted int he arachnoiditis discussion as well which is great. I'd like to invite @predictable, @sue427, @grammyx4, to this discussion to share their experiences with SI joint pain and treatment. You may also find the following discussion on addison's disease worth checking out as well, https://connect.mayoclinic.org/discussion/tired-of-being-tired/.

@mdmo, if you don't mind sharing, how are you doing with pain as you are weaning off of the pain pump?

I’m not managing it at all.
I’ve tried everything, I had a small back surgery at L-4 didn’t work, it’s been almost a year. I can only stand a couple minutes. I’m headed back to Mayo
Mn. In August.

Hi Justin thanks for moving around the posts where they will get the most views and advice. 🙂 Well, my intrathecal catheter is located at the L-3 level. My pain level has increased since the first dose reduction which was last Tuesday. My low back pain, plus the SI joints which the pump doesnt help at all.
I've had a rough first week.
They're giving me Ultram 50 mg 3 times a day for the pain.
Before reduction I wasn't on any oral pain medications per my pain managements contract. My pump was due for replacement in 11 months.
My pain management doctor here in Missouri requires you to wean down for a full replacement as well as a partial. Most doctors do not require the weaning process just for the pump to be replaced only when they need to replace the catheter as well.
Do you have a pump?
The doctor I have now believes in microdosing. My doctor in Texas thought my 4 mg per day was a low dose. Microdosing may work for a new pump patient. With any opioids it takes more over a peroid of time to achieve the same pain relief.

Hi, @mdmo. Justin asked me to give you some information about my experience with sacroiliac (SI) joint pain. I wish I could be more helpful to you in dealing with the conditions and treatments that you have endured. I think, though, that members of Mayo Connect together will provide you plenty of opportunity to talk through the issues you face.

My SI joint turned out to be the site of severe lower back pain that radiated into my Piriformis and Gluteus muscles and down into my upper thigh for several weeks. A spinal pain specialist treated me for several weeks, and a physical therapist tried to help, but in the end, my personal care physician asked if I'd like to try a direct injection of an anti-inflammatory medication into my SI joint. I agreed, and within a few days, my back pain was gone.

In the course of that, we looked at literature on the SI joint. The sum and substance was that the joint pain probably was caused by inflammation of the joint lining, perhaps on both the Sacrum of the spinal column and the pair of Iliacs of the pelvis. The injection in one of the two joints resolved the inflammation, and it hasn't returned in the last four years. In our literature, there was no suggestion of ablation (i.e., removal) of lining of the joints, which seems logical to avoid in dealing with movable joints. Has your new medical team discussed injection in the SI joint(s) as a remedy for your pain? Martin

Yes, I recieved multiple SI joint injections. I told them why do more, the last 4 haven't helped at all? I'm so thrilled for you that you had success with your injections. My Texas doctor also did the Radiofrequency ablation procedure after I told him that the injections didnt work. I have Medicare and they are about the only insurance company that will do RFA, and only if the injection works first......I've often wondered how and why Medicare paid him for the RFA due to the absolute fact I told him I was in miserable pain 2-3 weeks post injection. He told me oh,,,,well when we burn the nerve you won't feel it hurting anymore. When you are desperate you tend to go along with what your told. Just to get some relief.

I'd like to inquire for a friend about anyone with experience with either (sacro illiac) SI joint fusion or if any type of physical therapy helped them with an SI Joint problem. My friend has had 2 lumbar fusion surgeries and cannot walk without pain. I know that misalignment of the pelvis causes leg and back pain, as I have had that happen myself with it being caused by certain muscles that get too tight and pull it out of alignment. I have not had back spine surgery, but I did have cervical spine surgery and I've learned a lot from my physical therapist. My friend's doctor is considering fusing her SI joints, so I'm looking for some education on the pros and cons.

Here is her post to me that explains the issues. " I am concerned the fusion would be different to work with. Pulling the sacrum which is fused. Do you think it is possible to avoid fusion with certain kind of Pt. I am fused L2-S1. The si joints may be compromised from that. Walking is difficult and after 100 steps I need my wheelchair or some one to hold on to. What is your take. Pain free lying down. Sitting ok for awhile."

My physical therapist who does a lot of myofascial release stretching had this comment. " I would try conservative approach always before surgery. After Surgery, there is no turning back. There are many pain sensitive structures and there are a lot factors that can play into the functional deficit she is having. She may do well with John Barnes MFR,(and have seen it help many cases). But she may also need stabilization exercises, motor planning education and possibly pelvic floor work. Her scars from her previous surgery may be playing into the pain pattern. It is a positive thing she can lay without pain and sit for a time." Thanks for any responses, and I'll relay them to my friend.

@jenniferhunter

How great of you to be looking out for your friend! Sometimes we all need advocates to assist us.

There are many good physical therapies for the sacroiliac. A good PT can also provide your friend with good exercises to practice at home. I agree that a conservative approach is good thing and anything that you can do for yourself is advantageous to surgery. There is something about exercises (PT or otherwise) that give me the feeling of empowerment because I know I am bringing about some important changes in myself.

Will you keep me posted on how your friend is progressing?

So sorry your having all the pain. I had a new disk and fusion 3 weeks ago. The sciatica is still very painful, I’m hoping it will straighten out. Good luck to you.

@hopeful33250 Thank you. She's gone though injections and ablations since her 2 surgeries trying to get past the pain and to be able to walk without pain and fatigue. She was helpful to me early on during my spine problems, and I want to help her any way that I can. Because I do a lot of myofascial release therapy myself and I understand how it works, my gut feeling tells me this would help her. I also sent her a Mayo story about regenerative medicine used to help heal pain from adjacent segment disc disease with Dr. Qu. I knew that research had been successful in regenerating spine discs in rabbits and that was on the horizon for human treatment. https://sharing.mayoclinic.org/2018/11/02/an-active-life-restored-thanks-to-regenerative-medicine/

I really appreciate all the information you are giving her. Does she seem receptive to these alternatives? @jenniferhunter