When people learn that I’ve been dealing with SI joint dysfunction for more than 30 years, they often ask, “How in the world did you survive for so long?” And I’ve never quite known how to answer that question. There’s no short answer—it’s been a combination of things. But before I get in to my own SI joint dysfunction (SIJD) toolbox, I’d like for you to consider one word that should be kept in mind when searching for your own tools:
If there’s one thing there’s an abundance of in SIJD-land, it’s opinions. I was thinking yesterday that I’d like to put five different competent and respected clinicians through a grid of 20 questions, and see how often their opinions conflict. My guess is that they’d differ a LOT. I could go in to all kinds of theories as to why that is, but for now, let’s just acknowledge that even good doctors/physical therapists/chiropractors, etc. disagree on how to diagnose and treat SIJD. So what has worked for me may not be at all the best thing for you. With that in mind, here are some things that have helped me survive chronic pain for more than 30 years.
Drugs: I’ve always said that it’s a good thing I can’t tolerate narcotics because I probably would’ve become an addict 20 years ago. I do believe painkillers are warranted and even necessary in some situations. I just don’t know if I could’ve taken a break from them if I’d been able to lean in to the level of comfort they might’ve provided. But since I couldn’t take them, I tried pretty much every non-steroidal anti-inflammatory drug (NSAID) known to man. If my SI joint pain were a stove burner, the NSAIDs turned the flame down from high to medium. At times. (Sometimes the burner was on high and there wasn’t anything I could do about it but get horizontal, use ice, and rest.) There are significant risks to long-term use of NSAIDS—mostly cardiovascular. But without them, I couldn’t function. The inflammation was too much. Three words: Quality of life. My NSAID of choice is Meloxicam.
In addition to NSAIDs I’ve also been taking Wellbutrin XL for a while. Though I don’t take it for depression, my doctor said it might help dial down the intensity of the pain and help me sleep better. I would say it helps a whole lot with the fibromyalgia, and less with the SIJD. But it’s difficult to separate all those things out. One theory is that antidepressants help change the way our brains perceive pain. Who really knows? I take it because somehow it helps.
Exercise: I know, I know. Some people can’t even walk to the bathroom, much less go a long distance. It’s totally understandable why some of us get into the mindset of “can’t.” When you’re in horrible pain, the tendency is to move as little as possible so as not to exacerbate it. However, I suspected early on that if I stopped moving I’d turn into the Tin Man from the Wizard of Oz. As one of my yoga teachers says, “Motion is lotion.” With all the kindness, understanding and respect I can muster, I tell anyone who asks me about living with SIJD to try and push past the “can’t.” Set small goals. Walk to the mailbox. Or count houses on your street. One day go two houses beyond your own, and then work up to five or 10. If you can’t walk, consider swimming. Forget laps and cardio and proper form. Those are good things but if we wait until we can do them easily, we won’t ever get in the pool. Here’s the goal: m-o-v-e. Walk slowly in the water while it holds you up. Float. Any kind of movement will help in the long run. Of course check with your doctor before you try anything new, but I believe exercise played a large part in keeping me from becoming bedridden. Even treading water was helpful for me because it kept me from getting completely “rusted” up.
Chiropractic: This is a tricky one. If you know my story, you know that an overzealous, poorly educated, money hungry chiropractor monumentally intensified my SIJD back in the 1990’s. But I’ve also been with my current chiropractor for the last 20 years, and I totally believe that he has kept me from deteriorating further. Since he couldn’t “fix” me, all we could do is try and stave off further decline. It wasn’t a long-term solution and we both knew that. He was keeping the patient comfortable (or I guess I should say less uncomfortable.) He knows my body. He knew not to adjust me from the side and used the drop table on my pelvis and hips. He always listened to me, never pushed me and was generous in every way. I can’t thank him enough for playing a part in propping me up while I waited for more permanent answers.
Massage: Some massage therapists thought they could cure me once and for all, but they never could. However, massage has helped me tremendously over the years. It’s about quality of life. It’s about relief—even temporarily. Massage was a respite from the unrelenting pain. If I hadn’t gotten periodic breaks from the intensity of my pain, I don’t know if I could’ve made it through it all. For a very long time I couldn’t afford it, and yet when I’d get birthday money or some other unexpected windfall, I often used it for bodywork. Worth every penny.
Supportive Family and Friends: When I decided that I was going to have to live with the pain, I cordoned off a part of myself, kind of like the velvet ropes you see at movie theaters. I needed every bit of energy I had to survive this thing, and I decided that trying to make people understand just burned energy I didn’t have to waste. So I sucked it up and didn’t moan and groan and complain, even though I had every reason to. And of course, this often led them to believe I was fine. It’s a weird dance. But my family and friends were there for me as best as they could be. I am especially grateful for the people who were able to listen to my lamentations even though they didn’t have answers. Being present, being a witness to my pain and struggle, meant the world to me.
Diet: When you’re dealing with chronic pain, you’ve got to give your body every tiny advantage that you can. More than 15 years ago someone who saw my suffering asked if I’d ever considered a wheat allergy. No! Don’t take away my bread! But things finally got bad enough that I tried it. And there was no question about it, I felt much less inflamed. So I’ve been gluten free since before it was a “thing.” Is that directly tied to my SIJD? Doubt it. But inflammation makes my SI joint pain worse, so when I take away that component, or even part of that component, the net gain is that I feel better. I suspect that the gluten thing is tied more to my Hashimoto’s or other autoimmune issues. In addition to that, I eat as few processed foods as I can. I feel best when I eat lots of fresh vegetables and fruits, lean meats and abstain from inflammatory foods. This doesn’t make me pain-free, but it definitely turns the pain down a notch or two.
Yoga: Again, controversial. There are scores of opinions about whether people with SIJD should do yoga. A lot of us are hypermobile, which is weird because my muscles always feel tight ( I suspect that’s because my muscles are trying to help stabilize my joints.) But yoga has helped me tremendously. I happen to go to a fantastic studio that is all about accommodations and most of the teachers are extremely understanding about my need to make modifications. I just have to communicate about it. Don’t let any yoga teacher push you to do something that you feel isn’t safe for you. It’s not a contest. Search for a studio that has classes for people with disabilities or illnesses (mine continually rotates classes geared toward the slightly to severely impaired.) Other than the obvious benefits of mindful breathing, inner quiet and increased flexibility, yoga has taught me how to move in ways that don’t perpetuate injury. The lower half of my body has become much more stable and strong.
So far, everything I’ve listed is take-it-or-leave-it. I don’t think that everything that has helped me will be helpful or beneficial, or even safe for you. But I’m going to go out on a limb here and say that there are two things that I think apply to everyone with this illness. One is something we can’t afford, and the other is something we can’t live without.
What we can’t afford: Fear. Yes, each of us feels afraid at times, and for good reason. That’s not something we can control. Feelings are. But what we can control is whether or not we feed on it. For me it’s like a bag of Lay’s Potato Chips… you can’t eat just one. If I feed on fear at all, which for me usually means ruminating on the worst possible scenarios, I find it more and more difficult to get out of that mindset. Look, when people tell me my pain is all in my head, I’m among those who’d like to stick a fork in their eye and say, “It’s all in your head.” How dare they. But I do believe that our thoughts have a lot more power than we think they do. When I feed on fear, I usually stay trapped in a pit of despair. Here’s how I’ve tried to combat this: Stay in the present. Make a gratitude list. Watch stupid funny videos online until I can muster a belly laugh. Do whatever it takes to derail the runaway train. When I start going down the fear path, sometimes I have to say out loud, “STOP!” I refuse to be a slave to fear. It serves no good purpose and prevents me from embracing…
The one thing we can’t live without: Hope.
We can’t lose hope.
Of course I’ve had more times of hopelessness than I can count. I was angry and felt so defeated because I could never find anyone who could truly help me. I was mad at God for not answering my prayers (I mean, if my child were suffering so terribly, I would help her find a remedy.) Why did God let me go on and on for so long with so many dead ends and so much excruciating pain? I suppose there’s scores of people who lost loved ones pre-1928 who would ask, “Why did God let my beloved die before penicillin was discovered?”
SI joint dysfunction diagnosis and the promising treatments that have emerged in the last 10 years will no doubt give a lot of people their lives back. I am one of them. I wish like crazy that they’d been available 20 years ago, because I lost so much of my life due to chronic pain. But today we live in an era where our malady is getting a lot more airtime. And it’s early in the game! Many of you are limited in your ability to access the help you need. Maybe your insurance company won’t pay for treatment. Perhaps you live in a part of the world where SIJD still isn’t much on the medical establishment’s radar. Chances are you lack the resources to move toward what you think might be your next right step. I have been in all three of those situations and it sucks. It really does. But I implore you to hold some space, tiny as it may be, for the possibility that you will get what you need. Somehow. Someday. I got answers and solutions that I didn’t see coming. Your recovery doesn’t depend solely on what you can find for yourself.
Which leads me to perhaps the biggest thing that has helped me survive SIJD for more than 30 years: the grace of God. If you don’t believe in God, believe in something larger than yourself. Love. The Universe. The collective belief and compassion of your support network. Ask for help and then avail yourself to answers you haven’t yet thought of. Consider the possibility that it’s not entirely up to you, that somehow you’ll be given what you couldn’t acquire for yourself. If you can’t believe that, let me believe it for you. I am holding space for the possibility that your answers will come to you. In the meantime, keep researching. Keep trusting your gut. Refuse to live in fear, and make a decision to celebrate this day in any way you can. Though it probably doesn’t feel like it, it’s truly a gift.
What about you? How have you survived thus far?