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SI joint issues for twenty years

My problem started when i was pregnant with my second son. I tripped over a baby gate and felt something pop and was in extreme pain. Each night i would go to sleep and something would pop out of place. Every morning i would have to slide out of bed on my side, pregnant belly and all, in the most extreme pain. I would attempt to stand but could not bare/bear/any other bare, any weight on my left leg, i think, i really don't remember which leg, anyway, i would try to hop around, but that would only make it worse,like grinding a broken bone together. One time i accidentally put weight on the bad leg and it popped back where it was supposed to be. The pain relief was instantaneous. I thought, great, i am all better. No this happened to me every single night for the next six months until i gave birth to my son. I still had a ton of pain after he was born but no complete dislocation of whatever was going on. When talking to my ob they said this was normal because a woman goes through some serious laxity while pregnant. I believe that things were lax, however i never truly believed that this was normal. I was 18 or 19 at the time so i just listened to the doctor and never followed up.

Now coming upon my twentieth year of this injury i am realizing just how much it has severely impacted my quality of life. I now have sever arthritis in my hips, pelvis, and lower back, including the tailbone region. Bursitis, bulging and herniated discs at L4-5 and L5-S1. There is no doubt in my mind, or in what my body tells me, that this all stems from an extremely unstable pelvis. All it takes is a sneeze to rotate or flare my pelvis. I get twists within twists. The person who has truly helped me the most with understanding my SI joint issues has been my physical therapist. She has told me what it is doing. When i am feeling a certain pain she'll let me know if it is flared, rotated or in spasm. Then we can work on getting it back into place. Now this only lasts anywhere from five minutes to the maximum of an hour. I wear an SI belt that helps some with keeping pressure on the flare and holding it together for a tiny bit of relief. My doctor did not help me with any of this only the therapist.

My doctor is a whole other story. Despite knowing about my SI joint problems and physically seeing the evidence of them himself through evaluations he has done my pelvis rotates so bad the left pelvic bone is visible through the skin. Also i have the typical leg length issues. When its in place there is no difference, when it's out we can go as bad as two inches. When it is that bad it feels like my right leg is coming out of socket. He ignores it all. His sole focus and purpose in life is spinal steroid injections. That is all he talks about. Mind you i never had epidurals with my 3 sons, i would rather have a needle any place else. But he sold me. My pain felt all in my back and i did herniate that disc recently, despite all my fears i went for it. After that injection i had experienced more pain then ever before, for the first time i had continuous radiating pain down both of my legs from every direction and pain going up my back, which never ever occured before.

So what do I do? I of course today received my second epidural. I was talked into it, but it was still my decision. The first one was closer to the base of my tailbone and was supposed to swath the nerves down there in relief. This one was in the actual area of the herniation. My point in doing it this time was to really give it a shot. Lol! To say that i tried even though in the back of my mind i know it is not going to work. Though my back is in excruciating pain on a daily and hourly basis it is only partially from my spine. The true cause is the flare of my pelvis. When it is like that it feels as if my spine and pelvis are fused at that point, the picture i put in my mind is a butterflies body. The wings are my pelvis and the body is my spine. When the wings are fully flapped out, the pain is unbearable,nothing helps.

I guess my point is how do you get a doctor to truly listen to what you are saying and how you are feeling. No one knows my body better then me. I will go to my follow up appointment with my current pain management doctor. However i do believe i will be switching. What type of doctor do i go see. How do you get them to listen?

My regular symptoms are hip pain, touching them hurts, groin pain, back pain, shooting, burning pain all over my pelvic region, butt pains. My tailbone sometimes feels broken, burns, aches, if i sit in the wrong position the pain is indescribable. My legs will go weak of their own accord, i don't even have to be doing any serious activity for it to happen. From my pelvis down i experience severe muscle fatigue. I will get random bone like pains, as if someone took a hammer to an exposed bone. The pains are sometimes completely random, will jump here and there and everywhere. I know i am missing symptoms, but the list truly seems endless.

I honestly don't think i will have any choice in the future but to get my joints fused. They are so lax that i do not think physical therapy will ever be able to get them rebuilt and keep my pelvis stabilized. I just joined this site after reading other peoples histories. It sad how many people suffer from this, but i am very thankful to you all for sharing, for giving people like me hope after all these many long and painful years. I was seriously at my breaking point and about to give up and throw in the towel until i came here. I may just have some fight in me left. I know i am having an increase in pain right now do to the epidural. This is exactly what it was like with the last one, so i do know that my outcome is going to be just as bad if not worse.

Thank you again for listening to my rant. For taking the time to read it and to understand.



  • LizLiz Posts: 7,832
    edited 04/01/2013 - 11:00 PM
    I am sure that you will find your time on Spine-Health very rewarding. This site is a powerful and integrated system that is dynamic and continues to grow.
    Here are just some of the highlights:

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    - Under the Resource tab, there is a section Doctor Advice Health Center which can be invaluable.

    - As a bonus, Spine-Health provides these patient forums. Here is where you can meet thousands of other people who understand and can relate to your situation. You will soon become part of the Spiney family who provide comfort and the advantages of a Support System. You are now part of this family that is approximately 20,600 International members and growing daily.

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    If you have any questions or need assistance, you can use the Private Message facility to contact any one of the Moderators on my team:
    dilauro , tamtam or liz

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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