Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

Chronic SI instability/pain

niloc1986nniloc1986 Posts: 5
edited 06/11/2012 - 8:45 AM in Chronic Pain

I am writing this in the hope that someone else has/had a similar problem to mine and can offer a solution. I know everyone is different and what works for one might not another but I am open to trying anything and also encouraging hearing about someone else getting better.

So the brief overview is this: I began having low back pain at about 18 – originally misconstrued it as a sports injury that would get better instead of what it is… a repetitive unstoppable cycle of pain. I am now 24. In the 6 years since it started the problem has fluctuated between bad, really bad and tolerable.

It doesn’t seem to matter what I do… my SI joint will simply not hold. The thing that really gets me is it usually begins hurting in the most innocuous ways…getting into my car, showering, sitting on the couch, standing in one place. This of course has had some pretty devastating effects on my life and I am getting to the point where I feel more and more down about the situation. I have tried a large variety of treatment methods with little success.
As I am sure you have gathered by this point I am very desperate. If anyone out there has any experience with a similar problem or has any input for me whatsoever I would greatly appreciate it. Anything at all….


  • What makes you believe it is your SI joint? Have you had it diagnosed by a physician board certified to diagnose injuries of the spine?

    Indeed many of us have chronic lower back pain, but diagnosis of injury specific to the SI joint is less common (or I should say it is less common for damage to be restricted to the SI joint).
  • I am unfortunately very familiar with the SI joint. I'm also young (23) so I understand exactly where you are coming from. What you describe with odd little things knocking it out is exactly what I went through. My situation is unique because when I was 20 I had a really bad fall off a horse and actually fractured my sacrum, so that kind of put me over the edge for SI joint damage.

    Let me start this by saying that 2 years later and after many unsuccessful treatments the decision was made to go ahead and surgically fixate and fuse my SI joint- this is *highly* unusual and somewhat controversial, but for me I was at that endpoint where I could not tolerate it any longer.

    The good news is there are a lot of non-surgical treatments for SI joints. It's a stubborn problem, but there are options. It sounds like you have explored quite a few, but here's the laundry list of what I did and perhaps one of these will be new?

    1) Physical Therapy: A good manual therapist should be able to gently realign your SI joint and then give you exercises to strengthen the muscles to hold it in place. You can ask your doctor if physical therapy would be appropriate for your specific situation (although I'm guessing you've probably already gone this route?)

    2) SI belt: I used one as an adjunct to the PT- My PT would line me up, then we'd slap the belt on and it would help hold things. The theory is the belt holds things while the muscles are re-trained, and then once you've restrengthened the belt should no longer be needed. If an SI joint belt makes you feel better that can be a good indication that SI joint alignment is a factor in your pain.

    3) Chiropractics: For me, this was a *bad* option. After a few treatments I was worse instead of better, but there are certainly people that swear by chiropractics.

    4) SI Injections: Lidocaine/cortisone injections are both diagnostic and therapeutic. If numbing the joint relieves your pain that can tell them that the pain is coming from the SI joint, and the cortisone can help quiet inflammation. Again, you can ask your doctor if an injection would be worthwhile to try (although I have a feeling you may have done this as well).

    5) TENs unit: This is non-specific to the SI joint, but for me it has always been helpful for pain relief. It requires a doctor's prescription to get one.

    6) Prolotherapy: I never personally tried this because my doctor said my joint was too unstable for this to have a prayer of working, but it is a treatment to help tighten the ligaments...I believe it is still classified as experimental and not covered by most insurance, but it is something you could ask your doctor about.

    This list is just meant to give you some things to ask your doctor about- I know that unless someone tells you the options it can be difficult to even know what is out there to discuss with your doctor. Also keep in mind that my case was extreme due to the trauma and the sacral fracture, so surgery, while an end resort option, is usually unnecessary. However, 6 years is a long time to deal with this problem...

    P.S. I also agree with Happy that it is important to be sure of the diagnosis *but* SI problems are notoriously hard to diagnose and are typically a diagnosis based on elimination and symptomatology.
  • I guess I don't have any real specific diagnosis. From looking around on this site it seems most people have at least that. I have had doctors tell me they believe alot of different factors play into the problem I experience but there hasnt been any direct name given it.

    I guess when I say I have a SI joint problem it is because this is where the pain originates 99% of the time.

  • Thanks for your response. I have always wondered about surgery but never really looked fully into it. I also never had a doctor mention it to me so I assumed it was not appropriate for whatever my problem is. How did it end up turning out for you? Where you better off afterwards?

    It sounds like aside from the fact that you fractured a specific bone our injuries (symptoms) are sort of similar. Clearly I would never choose to have surgery unless I had to but at this point all options are on the table.

    As for your ideas...I have done PT extensively, I pretty well live at my chiropractors, had a belt at one point and a tens unit. I have never had injections because they seem like a short term fix to me... I dont know. Prolotherapy is a new one for me. I may look into that one.
  • I am better from the surgery. My SI joint no longer hurts and my pelvis is level. I used to sit and could only feel the ischial tuberosity on my right side (the sit bone). Now when I sit I can feel both ischial tuberosities, so I know my pelvis is lined back up and that left ilium isn't rotating backward every time I put weight on my pelvis.

    The musculature is still adjusting so I'm doing trigger point injections and PT to continue to adjust to my "new" anatomy. I'm almost a year out and still consider myself to be recovering. I was told to expect 12-18 months to really adjust.

    I continue to have chronic pain, but it's from tarlov cysts. We were at least able to eliminate the SI joint element of the pain. It was a controversial surgery and I had doctors telling me not to do it, and others telling me to do it, but ultimately it came down to the fact that I was utterly disabled from the instability and had to take the chance. For me, it was the right decision and I'm glad I had it.
  • Welcome to Spine-Health.

    Have you had an MRI? I agree with HBmom that you really need to get a definitive diagnosis before you can figure out what treatment is needed to fix the problem. Our spines are so complicated that it's a guessing game as to where the exact problem lies from a layman's perspective.

    For instance, I had severe pain in my middle back that sent me to my PCP. Who would have guessed that six months later I would have a 3-lvl ACDF because three discs in my neck were collapsed, among other cervical problems? We can easily get pain in one area that actually stems from another. So my suggestion is to get a definitive diagnosis and go from there.

    Take care and keep us posted.
  • That all sounds very painful. That’s good it ended up turning out to be of some benefit to you. So you no longer have any pain that arises from specifically you SI joint itself? Are the cysts related to surgery or is that something separate? I am not familiar….
  • Thank you. To answer your question…yes I have had x-ray and MRI done on my back. From what I have been told there is nothing “structurally” wrong with my back. I do however hear your point about the complexity.

    I know sometimes it is difficult to verbalize or understand everything involved without the medical knowledge/background to support things.
    The most confusing part of all this to me is….. structurally there is nothing wrong and I’ve also been told that my muscles and ligaments seem to be in good condition yet the problem persists. Many doctors have told me my flexibility needs to be better…leading me to do extensive stretching routines, again to little effect. I almost seems to be some sort of a knee jerk reaction my body does for what reason….? I don’t know….Which brings me to the point where I usually get when talking or thinking about it, at a loss.
  • Was this a single physician who said this? A board certified orthopedic surgeon?

    It might be beneficial to get a second opinion. There are thing that don't show up in MRIs, and although soft tissue injury is a common cause of back pain, we all do need to be our own advocates.

    A physiatrist/pain management doctor is another thing to consider. The spine, of course, is just chock full o' joints- something I had done earlier this year had to do with my facet joints. Anyway, always something to consider.

    Also, a trained physical therapist would probably be preferrable to a chiro for physical therapy.
  • To answer your question: No, the cysts are not from the surgery. They believe I've always had them, and they are known to become symptomatic following trauma, so we believe that they did not become painful until I fell. I do not have any pain in my SI joint region anymore, so the assumption is that none of my current pain is from that- Prior to surgery I had a sharp distinct pain over and deep into my left SI joint that is completely gone.

    As far as what others have said, I totally agree that a physiatrist/pain managemed doctor is a good recommendation for a next stop. My experience has been that they are excellent diagnosticians, particularly when nothing clearly shows up on diagnostic tests. Physiatrists are great at tracking down pain even when diagnostic tests are coming back normal. A diagnosis is critical to getting proper treatment and pain relief.

    I know you said an injection seems like a short term fix, but the diagnostic value alone could prove useful. For me, a lot of how they've diagnosed things because I'm also a person who has relatively normal MRIs is by various injections. They can numb various structures up to try to find out where the pain is coming from.
  • Your situation is a very good indicator of what I have experienced, with regard to a pretty big difference between a neurosurgeon and an orthopedic surgeon. My friend is an orthopedic surgeon and he reviewed some of my films a few years ago and said he could see nothing structurally wrong at the levels I was experiencing difficulties from. My neurosurgeon reviewed the same films, presented them to a consortium of neurosurgeons and neuro-radiologists and they had a completely different answer for me.

    Docs look at imaging studies with a different perspective based on their training and experience. It doesn't mean that they are overlooking something, it just means that they aren't looking in the same direction. It's like being offered someone Lasagna. If it were my husband offering the Lasagna, it would be microwave instant stuff. Whereas if it were my aunt, it would be very authentic, homemade lasagna. As far as both were concerned, they provided the lasagna as requested. I guarantee that there would be a big difference between the two, yet both would feel they did their best to help you out.

  • that will confirm if your S1 disc if faulty ..the S1 disc is a bad one for pain because its the first one in the stack and therefore its takes all the weight .many people with S1 problems also have L4/L5 problems too .but to be sure you need to see an orthopedic surgeon for his/her professional opinion .meanwhile to help with the pain you may want to try a TENS machine /ice/heat and gentle exercise like swimming .good luck
This discussion has been closed.
Sign In or Register to comment.