When people ask me about my chronic pain, I usually just say I have “back problems,” but in reality, it is more complicated than that. Even online I don’t mention my particular condition often, mostly because I interact with so few people who share the same problem as me and because my focus is more on mental and emotional aspects of chronic pain.
However, this post is all about my main condition, sacroiliac joint dysfunction (SIJD). In this post, I share strategies that in combination over the past year have brought my pain levels from SIJD down from a 6-7 average to a 3-4 average. I don’t think I need to say that this is a HUGE difference in terms of quality of life.
I have had sacroiliac joint dysfunction (SIJD) for over four years now. In a nutshell, SIJD is damage to the two SI joints which connect the sacrum to the right and left iliac. More specifically, SIJD is often a result of damage to the SI joint ligaments, which can become stretched out or strained. Due to the damaged ligaments, the various parts of the pelvis can shift, leading to misalignments and severe pain in the low back, buttocks, legs, and feet. If you want to read the story of how I was injured by a chiropractor leading to this issue, you can read here, here, and here.
I was lucky in that I had a diagnosis within weeks of this injury, unlike many others who go years without knowing what is wrong. I joined a few facebook groups for patients with SIJD, and gleaned various information related to treatment strategies and how to move forward. Now I feel like I have dealt with SIJD for long enough that I have a few of my own tricks up my sleeve. Through much trial and error, I have figured out what works for me and what has allowed me to make progress.
I expect to continue to deal with flare ups and setbacks and various new issues over the next years, but these are the strategies that have allowed me to make progress so far, and I believe they will be the strategies I continue to turn to in the future.
I think it is important to mention that my SIJD falls into what I believe is a moderate level of severity. The tips in this article should be valid for people who have mild to moderate levels of pain and dysfunction from SIJD, and likely will not be enough for people with severe problems who need surgery. I also want to stress that all information in this post is from my personal experience and should not be taken as medical advice. Please consult a doctor in forming your treatment plan.
A Second Disclaimer
Many of the strategies that I will mention have only been possible for me because I don’t have kids to take care of full time and because I don’t work full time. I realize that some of these strategies, especially the pacing method I suggest which has been instrumental for me, will be much more difficult to implement if you are in a situation where you have to work full-time.
However, I will also say that I made huge sacrifices to be able to focus on my health and implement these strategies, including quitting jobs that I loved, working from home, and putting my health over socializing and other things I want to be able to do. You may come to a point where making progress will be impossible unless you make sacrifices such as this. For me, one of my turning points was when I decided to decrease my work schedule from 30 hours a week (at a job I loved!) to 5-10 hours a week. It was a heartbreaking decision, but I have not once regretted it because it has allowed me to gain some quality of life back.
I am not cured of SIJD, but these are the strategies that have helped me, and in combination have decreased my pain by at least 3 point on the 1-10 scale. I have listed them in the order most to least effective for me.
- Rest, Rest, and More Rest
Learning to rest was the most important shift in my thinking that finally led to managing my condition. For the first few years, when I would have a flare up, I would try my best to push through and keep my same level of activity make sure I wouldn’t lose muscle tone from lounging around too much. In theory it makes sense, but in practice, I NEVER came out of flares until I finally gave up and rested until my body was ready to start moving again.
This started to make sense to me as I considered the nature of SIJD. For many of us, the pain from our SIJD comes partially from a sprained pelvis. Other problems are going on, but the foundation of the problem is that our SI ligaments were sprained (at least his was the case for me). Now, what does the doctor do when we seriously sprain a foot or a wrist? He puts it in a cast or a brace to immobilize it and tells us not to use it for a while so it can heal.
Unfortunately, this just isn’t possible when the sprain is in your pelvis. You can’t put your whole torso in a cast and unless you are on bed rest for weeks, there is no way not to use your pelvis. Every time you walk or move you are putting strain on the already sprained ligaments, and nothing ever heals.
When I started thinking about it this way, I stopped feeling guilty about resting. This is not an issue of being weak or not being able to push through the pain. This is an issue of not making progress unless our ligaments are able to rest before moving again.
Many times I have had to push through to keep up with walks and exercises and work and other things in life. But until I learned to balance the pushing through with rest, I didn’t start to manage the pain.
I believe this is one of the key ways SIJD is different than other back problems. We don’t feel better when we walk or stand like many other back pain sufferers. We don’t feel better after exercising or moving. Most of us feel best in the morning and start to suffer more and more as the day goes on as we are moving more. This is much different than other chronic pain conditions.
Now when I flare up, I take a whole week to do the bare minimum (and I mean the literal bare minimum, cancelling everything that is not absolutely necessary). This gives me the baseline to begin pushing through. I now come out of flares much faster since I have taken on this tactic.
- Tracking and pacing.
The second most effective strategy I use is to track all of my daily activities, which enables me to accurately and effectively pace myself and avoid flares. I have written two extensive posts on this subject, and I would encourage you to read them. This post describes how to set up a quantified tracking system. And this post describes the benefits of using this tracking system to pace. In the 29 weeks that I have been doing careful tracking and pacing, I have only experienced two small flares and zero major flares, which is a huge improvement from before.
Interestingly, I have found that many of the pacing strategies used by patients with chronic fatigue syndrome (CFS) and Myalgic encephalomyelitis (ME) are also applicable to me as someone with SIJD. Like CFS and ME, my SIJD symptoms flare up after the fact. I can go on a walk and feel fine, but feel like I am going to die an hour or a day later. I can add a few extra things to my schedule for the week and feel fine until next week when I realize that it has all combined into a horrible flare that I was unable to predict.
Tracking allows me to create a baseline of activity that I know I am able to do before the pain becomes unmanageable. I am then able to pace myself based on that information to not succeed the amount of activity I know I am able to do. When I stick to my pacing plan, I am able to slowly increase my activity over time without triggering a flare.
There are times when my chart tells me I need to start based on the numbers even when I feel like I can keep going. Any time I ignore the chart and keep going anyway, I regret it. It shows me how accurate it is.
We feel like our pain is unpredictable, and in many ways it is, but the more information we can gain about our pain and symptoms, the more predictable it becomes over time.
- Physical Therapy Appointments
Many people with SIJD do not fare well with physical therapy. If physical therapy has made you worse instead of better, I encourage you to read on because it is extremely important what type of physical therapist you find.
My physical therapist is CFMT certified, which means she does more than give me a few exercises. She spends a great deal of time working on my body, doing various gentle manipulations, muscle and organ releases, and in general, working my body back into alignment. Currently, I do few actual exercises at my physical therapy appointments and save those for when I am at home. She tells me what exercises to do, but at my actual appointments, she spend salmost the whole time getting my body back into a better place so the exercises can be effective.
You can check this website to see if there is a CFMT certified physical therapist close to you. http://www.instituteofphysicalart.com/ipa/referral/list
This is the one certification I am aware of – does anyone else know what other certifications or signs to look for in a physical therapist? I would love if you would mention it in the comments. In general you want someone who will do more than just give you exercises and actually spend time working on your body.
- Physical Therapy Exercises and Stretches
That brings me to the physical therapy exercises that I do at home. Again, if physical therapy has not worked for you, please bear with me. I have been in physical therapy for three and a half years, and I have only in the past six months felt like I am slowly making progress.
I am glad that I have stuck it out. It has taken that long to find the right physical therapist and figure out how to do exercises without triggering a flare. It is possible. It just take lots of time and thought.
If you can’t find a physical therapist who has experience in manual techniques, the second best is to find a physical therapist who will listen to you and let you be highly involved in how you increase your exercises.
I believe the reason so many people with SIJD, and perhaps other conditions as well, do not do well in physical therapy is because the physical therapist starts with exercises that are too difficult and increases these exercises too quickly. I think it is hard for them to comprehend how sensitive our bodies are and how small that threshold is that once crossed leads to a huge flare.
My body is sensitive and it makes progress 100xs slower than other bodies. This doesn’t mean it can’t make progress. It just means I have had to radically adjust my expectations and time frame.
For example, when I increase an exercise, I literally increase it by one or two more. So, if I am doing 2 sets of 10 reps, I don’t increase that to 3 sets of 10 reps like I might with a healthy body. I increase it to 2 sets of 11 reps, so that I am only doing the exercise 2 more times. And this is how I have been increasing over the past six months. It has been so incredibly slow, but over time the progress does come without triggering a flare.
For all physical therapy exercises, walking, stretching and physical activity of any kind, I follow the 10% or less rule. What this means is that I never increase an exercise by more than ten percent at one time. And once I increase it by ten percent, I do it at least 10 times on 10 different days before I am allowed to increase it again.
That means that if I am able to walk ten minutes right now, the next time I increase my walk, I am not allowed to increase it by more than one minute. If I am doing ten reps of something, I increase by one more rep, not one more set. The progress is imperceptibly slow, but progress is progress.
I believe it is essential to find a physical therapist who does not push you to do what you know you cannot do. Even after working with my current physical therapist for several years she will still ask me to do things that make me nervous. Anytime I don’t listen to my gut in these situations, I regret it. Over time I have become more in tune to what my body can and cannot do. If it makes me nervous, I just don’t do it.
- Continuous Birth Control Pill
As I stated before, SIJD is partially a problem with the SI ligaments becoming too loose. Unfortunately, some of our natural female hormones can actually increase this effect, leading SIJD symptoms to flare up every month right before our period. For myself, I found that one week out of every month I was especially prone to triggering huge flare ups. And even if I didn’t trigger a huge flare up, I would feel more pain that week than any other time of the month.
My doctor put me on a continuous birth control pill that I take all the time without a break. It is supposed to be taken for three months and then a week off, but my doctor gave me permission to take it continuously, which has made a huge difference. I don’t get those monthly pain increases anymore, and I am not more prone to flares around my period. The kind I take is a pill called Quasense, and I know others have found relief from other types of birth control as well.
I take over-the-counter anti-inflammatories three times a day regardless of how I am feeling. For a long time I took anti-inflammatories on an as-needed basis. If I felt like I could tough through the pain, I wouldn’t take anything.
My doctor told me that using anti-inflammatories on an as-needed basis will not help me in the long run. She said that taking them on a regular basis can actually be preventative and “push inflammation out of your system.” I am sure there is a more technical way to put that, but like many medications, if you stay more on top of it instead of waiting until the pain feels unbearable, the pain levels can stay more level over time.
I avoided prescription medicine for a long time, and I wish I had tried them sooner. Amitriptyline was not the first medicine that I tried, but it was the first one that helped without side effects that were too much. Amitriptyline makes a small but noticeable difference for me. It calmed some of my pain so that physical therapy became more possible for me. My doctor started me on 10mg, and I think that starting on this small of a dose helped me be able to stay on it without the side effects becoming overwhelming. I slowly increased to 15mg and then 20mg. Each increase showed a slight decrease in pain levels, and I believe it is still helping me.
- SI Belt
I have worn an SI belt 24/7 for the past 3-4 years. Do I worry about the fact that I rely on it? Yes. But, in the end, I would rather rely on it and have some relief than try to wean myself off of it and leave myself prone to flares, which has happened in the past when I tried to do so.
I use this one, which you can buy through amazon. My only complaint on this one is that the Velcro wears down faster than I would like, but I continue to use it because of the slim design. Others that I have tried have been more bulky. When I first started using it, I would wear it over top of my pants or whatever bottoms I was wearing, but I finally realized that I could wear it right over my underwear and put the pants on top. No one has to see it and the pants help it stay in place so it isn’t always riding up all of the time.
- Self-Realigning Techniques and Muscle Releases
These are the same techniques my physical therapist does in our sessions, but over time I have learned to do some of them at home. For example, I can now tell if my pubic symphysis is out of alignment and know the technique for getting it back in place. When my one leg is longer than the other, I know that I am have an upslip and what technique is needed to realign my pelvis. When I can tell something is out of place, but unsure of the specifics, I do a release on my Psoas muscles. Sometimes bad alignment is caused by muscles being tight and pulling you out of place. When that is the case, releasing the Psoas can help my pelvis find a more proper position.
These are just examples. Some of the alignments and releases your physical therapist does can be done at home to keep you more comfortable between appointments. Ask your physical therapist to teach you ones that are applicable to you.
- Lidocaine Patches
I use lidocaine patches on days when I have to work or when I am forced to be active and the pain is flaring. Since the lidocaine patches work to numb the pain (or at least numb the edge off), I try not to overuse them because they can make me think I can keep going when I should really rest.
This is one of the first things I was taught by my physical therapy, and I am still trying to implement it. Even though it doesn’t fall on the top of my list, I think that it will be key for me to be able to sustain progress over time. Also, my physical therapist told me if I don’t get it right, I may get spinal stenosis when I am old, so let’s just say that freaked me out a bit.
This is not something that can be learned from reading a few paragraphs, so I would suggest talking to your physical therapist, doctor, or whatever other practitioner you see.
However, here are two tips to get you started.
First, when you are standing consider how the weight is distributed across the bottom of your feet. You want the weight to be evenly distributed. Do you feel more weight in your heels than in the front of your foot? Or vice versa? I have a tendency to rock back and put all of the weight in my heels, and so constantly I have to remember to readjust myself forward.
Second, if someone presses straight down on your shoulders, consider where you feel that pressure. When your posture is correct, you should feel the pressure go directly into your feet, and your back shouldn’t be absorbing any of it. For me, I have a huge curve in the base of my spine, and for the weight to go into my feet, I have to tuck my butt under and push my chest forward. It feels really awkward and unnatural, but hopefully I will get the hang of it eventually. Talk to your physical therapist to see what specific changes you might need to make for your posture.
- Ice and heat
I use ice and heat all of the time. Don’t underestimate how much they can help! Ice cools down the inflammation and heat calms down muscle spasms. I fall asleep on ice every night, and it is one of the only reasons I can continue to sleep when I am flaring. If I can fall asleep while the ice pack is still cold, I can usually stay asleep for a while. Then when I wake up in the middle of the night I get up and exchange the ice pack for a new one to help me fall asleep again.
- Deep Breathing
Deep breathing has helped relieve stress, calm my body, and even reduce pain levels as I try to sleep. I mostly save this strategy for when I am flaring, and especially if I am feeling anxious. While I am on my ice pack, I start a deep breathing exercise, breathing deeply in through my nose, taking care that the air expands my stomach and rib cage and doesn’t expand my chest.
I start at a low count, breathing in for five seconds and out for five more, and over time I increase the count, drawing in more and more air with each breath.
This is not a throw-away strategy just because it is towards the end of the list. At times when I have used this to fall asleep, I can literally feel my body sink into the mattress and my tight muscles start to loosen. If I do it for 5-10 minutes while I am trying to sleep, it can often bring my pain levels down just enough to help me fall asleep.
I went through multiple rounds of prolotherapy on two separate occasions. On each of the two occasion, I did about 7 rounds, consisting of 2-6 shots each time. Both times I felt like the prolotherapy helped stabilize me for a few weeks up to a few months, but I was never able to maintain the progress, always falling back into flares. However, prolotherapy is incredibly helpful for some people with SIJD, so don’t write it off just because it didn’t help me.
I faithfully attended acupuncture appointments almost every week for over a year. I experienced marginal relief, but it was not worth the time and effort to continue this long-term.
- Anti-inflammatory Diet
I followed a strict anti-inflammatory diet for a long time. You can see my detailed post here that gives directions for how to do this, including which foods to eliminate and which foods to start eating more. When I follow this diet, I think it helps a tiny bit, but not enough to be worth all the work and food limitations if I’m being honest. For now, I try to eat healthy most of the time, eliminating red meat and dairy and adding anti-inflammatory foods into my diet as I am able. However, other people have had more success than me on the anti-inflammatory diet, so it may be worth a try.
Epsome salt baths, various pain creams, essential oils, massage balls, vitamins and supplements, probiotics, short tai chi sequences, anything that improves my health and wellbeing in general so I can be more equipped to fight and manage the pain.
I know there are various other more invasive procedures. I decided to opt out of these for now, although any major flare ups always have me reconsidering. This has just been a personal choice to take the least invasive route.
What am I missing? What has worked for you?
Strategies that Reduce Perception of Pain and Increase Tolerance of Pain
All previous strategies work to alleviate the actual physical pain, but believe that just as key to getting better is managing our mental and emotional health in the midst of SIJD. The strategies that relief physical pain are not enough because progress happens so slowly that we need other tools to keep us going when the pain flares for months on end. Other people might call these coping skills. I might call them necessary to survive skills.
These strategies will look different for different people. These are things such as distractions, prayer, reading, TV and movies, coloring, writing, knitting, sewing, making cards, writing letters, or any hobbies that you can do while resting.
These might include things like going to a counselor or seeing a psychiatrist, not because the pain is all in your head but because the pain is so overwhelming that it leads to emotional distress for all of us.
I think this category should always include some means of helping and serving others, even if the only way we are able to do this is through online means. Reaching out to others who are hurting, starting a blog to share your story, building awareness on twitter or facebook, doing a favor for someone. Something, anything that draws the focus away from the pain and onto alleviating the pain of others.
Finally, I think this includes doing things that we enjoy even if we know it will lead to a flare up. Seeing friends, going to a movie, going out to eat, volunteering, keeping a job even though it is hard, getting a puppy, going to church, doing that one thing you really want to do even though you know you will pay for it. It is all about weight the costs and the benefits and realizing that sometimes (not always, but sometimes) the extra pain is worth it to live this life to the fullest we are able.
The Importance of Time, Patience, and Multiple Strategies in Combination
Improvement with SIJD happens over months and years, and usually comes about because of multiple strategies that in combination lead to relief. We need lots of patience in our search for relief, or we will give up.
And I have found that any time I gave up and stopped using these strategies that I knew were good for me, I started to rapidly decline. Unfortunately, the decline happens so much faster than the improvement.
There is no one fix solution for SIJD. For most people there will be no one miracle cure. I think this is why surgery is so attractive to many of us. We are looking for that one thing that will fix the problem, and that mindset can lead us into invasive procedures that may bring about more harm than good. Again, please remember that I am still talking to individuals with moderate SIJD who can likely make progress with less invasive strategies. I understand that some people need surgery or other procedures and put a lot of thought into those decisions.
But, more often, it is important to consider how multiple strategies over time will combine into needed relief. If we try ten different strategies and each strategy brings 2-5% relief, just think how much that can add up to in combination. Over time, it can make a huge difference. Over time, this is how I went from miserable to actually enjoying life again. Over time, this is how I brought my pain average down from 6-7 to 3-4. At least for now – hopefully I am not jinxing myself! I hope these strategies can help at least one person who feels unable to escape this pain monster that is SIJD.
Don’t want to miss a post? Click here to Follow Life in Slow Motion on Facebook for blog posts and other original content.