My Sacroiliac Joint Story (so far)

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I should’ve had a C-section. I wish I’d had a C-section. But I was young and scared, and I begged the doctor to try forceps before wheeling me into the operating room. I shudder when I think about it because my husband said he was terrified when he saw the doctor’s arm muscles bulging as he struggled to get her out. (To put it in perspective, -5 is where the baby usually is at the onset of labor; +5 is actual birth. My daughter was still at -3 after fifteen hours of labor and three hours of pushing. He had to go way up with the forceps to get her out.) She weighed in at 10.5 pounds, and ended up being fine. But I wasn’t. I’m pretty certain the whole ordeal badly damaged the ligaments that surround my right sacroiliac joint. I had two more large babies in the next five years (9 lbs. 12 ounces, and 11 lbs. 2 ounces—both without a C-section, though neither was as difficult as the first one.) Each time I gave birth, my low back issues got decidedly worse.

 

In about 1990-91 the pain and spasms had returned to the point that I decided to try chiropractic. That’s when I learned another hard lesson: don’t pick a random chiropractor based on the fact that he’s close to your house. He signed me up for 3x/week treatments and I submitted to his regimen because he promised me he could fix my problem. In fact, he made it sound like it would be a piece of cake if I’d just be brave and follow his plan.

 

Sign me up!

 

There were days I left his office crying because his adjustment amplified the pain, and he kept telling me that it was going to get worse before it got better. It did get worse, but the “better” never came. I ended up letting him string me along—and further injure me—for the better part of a year.

 

By this time I was seriously impaired. I could walk and I could drive, but I was having a very difficult time keeping up with my life as a mother of three due to the debilitating pain. I went to an orthopedist who ordered an MRI and told me that I had some degenerative issues in my lumbar spine (four bulging, mildly degenerating discs.) He sent me to New Orleans to a guy who was doing facet injections to see if L5/S1 was where the pain was coming from. As it turns out, the injection had no effect on my pain level whatsoever, which he said meant that the pain probably wasn’t coming from that precise location. When I returned to the orthopedist with that news, he offered to fuse L5-S1, but he said that he couldn’t promise it would take care of my pain. In fact, he told me that he’d seen scores of MRI’s that looked much like mine, and the patients were asymptomatic.

 

So I went to another orthopedist for a second opinion. He ended up saying that I was going to have to either a) have the lumbar fusion surgery in the hope that it would help, or b) learn to live with the pain. After much wrestling and soul searching I decided against the surgery. (Side note: it was VERY tempting to lunge at surgery because I wanted to believe it would fix me—I so desperately wanted the pain to go away. My gut, however, said no, and I’m glad I listened.)

 

Two good things came out of my consulting with the orthopedists. First, I got on anti-inflammatory drugs. They reduced the inflammation in my sacroiliac joint enough that I could function for hours at a time, and today they still give me a quality of life that would not be possible without them.

 

The second good thing is that the doctor referred me to physical therapy, where a rock star PT named Debbie told me that the problem was in my right sacroiliac joint. I worked with her for six to ten months. She used all kinds of modalities—exercise, strength training, ice, heat, manipulation, TENS unit, therapeutic ultrasound, lots of stretching regimens, etc. But the pain remained. There were times when I felt a bit better, but eventually my muscles would always seemingly get a mind of their own and yank my pelvis around (her assessment, not mine. But it certainly rang true.) In a musculoskeletal sense, everything just went to hell from there. It hurt to sit. It hurt to stand in one place. The only way I could get marginally comfortable was to lie horizontal, on my side. It became a way of life: run an errand; lie down. Pick up the kids and make dinner; lie down.

 

Within the next year or so I went to pain management. We did injections. I tried, but couldn’t tolerate, stronger drugs. One D.O. finally put me on Pamelor, a tricyclic antidepressant, saying that it could help turn down the volume of my pain. He also diagnosed me with Fibromyalgia, and said the drug would help with my sleep. I think it did help some, but it didn’t address the pain.

 

A few years later I stumbled across something called prolotherapy, a series of injections that trigger the body’s ability to strengthen and repair itself. It has helped a lot of people with SIJD, but it was abject hell for me. I spent about six months letting the doctor inject me every 2-3 weeks. My pain skyrocketed and I heard the old “It’ll get worse before it gets better” speil. Over the next several years I placed myself under the care of several acupuncturists, two more physical therapists, two personal trainers and worked with several practitioners that did myofascial release and energy work. I’ve tried just about every kind of massage there is. I worked with two more chiropractors, one of which I still see pretty regularly. I did a year of Feldenkrais work (somatics) with a wonderful practitioner who did everything she could to help me retrain my mind and my body. So many times I felt great after I left my Feldenkrais appointments, but nothing I did—nothing—gave me any lasting relief. I read Dr. John Sarno’s books and diligently studied and applied his teachings on psychosomatic illness. But the same pain problems kept dogging me day in and day out. Someone told me that the reason I wasn’t holding my chiropractic adjustments, or benefitting from my acupuncture treatments or my Feldenkrais work was because I had severe nutritional deficiencies that kept my system too weak to heal. So I spent thousands of dollars on a personal nutritionist and a supplement company called Mannatech. I did several stints of Chinese herb therapy with two different oriental medicine practitioners. I even agreed to let a family friend try and cast out the pain demons (true story.)

 

After all of this, I still had the exact same problem. I’d done everything I knew to do and after 15 years of trying, nothing worked long-term. I felt strongly that my physical therapist had gotten it right… that my sacroiliac joint was initiating a lot of my physical mayhem. But the doctors told me I was wrong, so what else could I do? I was broke and exhausted and depressed and seemingly no closer to answers than when I first started. I was tired of being on the medical merry-go-round. I wanted off.

 

So I decided to quit.

 

I quit seeking answers. I quit talking to other people about it. It’s not that I didn’t want to talk about it. But even today, when I’m honest with people about the severity of my pain, inevitably someone in the bunch will find a reason to discredit all of the doctors and practitioners and therapies I’ve gone through. They tell me where I’ve gone wrong, offer me their unsolicited advice, and then try to steer me toward their person, their surefire solution, their regimen/philosophy/approach to treatment. And I got to a point to where I just couldn’t do it anymore. So I made a decision to participate in life as much as I could, but to keep one of the most difficult things in my life mostly private.  

Next up: The five “W’s” of my upcoming surgery:

Who‘s doing it

What he’s doing

When it is

Where it is

Why I decided to have surgery

Why I chose the doctor/fixation method that I did

 

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