What We Wish You Knew

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If they only knew.

 

How many times have you thought that?

 

Even though people may try really hard to comprehend what you’re going through, there are still elements of living with SIJD that they won’t be able to understand. And it’s not their fault. There are just some things you can’t fathom unless you’ve experienced them yourself.

 

In the survey I recently conducted, I asked, “What should other people know about those who suffer from sacroiliac joint dysfunction?”

 

In all fairness, I should’ve asked a more specific question. Which other people? Those who have the ailment? Spouses? Loved ones? Friends? Employers? Everyone who answered the question assumed one or more of those, so I’m going to leave interpretation to the reader.

 

There was such a huge response to this question I can’t share all of them here. Keep in mind that the point of this little exercise wasn’t to disseminate “truth,” or to promote one point of view over another. Whether you agree with these responses or not, they’re snapshots of what’s going on in a person’s heart and mind as they are seeking solutions. If nothing else, perhaps these statements will lead to a conversation that will benefit us all.

 

So without further ado, are some of the things that people with SIJD would like for others to know.

 

[It’s] Debilitating. Not enough information in medical community about fixing issues instead of prescribing pain meds.

 

Stand your ground if you feel misdiagnosis is happening. Don’t take no for an answer easily.

 

Be very careful with surgery. If you get fixated in a misaligned position, you will forever be stuck in malalignement.(I think this is a very big reason to why there is such a big number of surgery failures).

 

That diagnosis is a huge challenge. That there are many bad surgeons in the US who rush to surgery without really being sure they are treating the right problem. I think the surgeon is as important as the technique.

 

Always get doctors to rule out hip issues before going ahead with and treatment on your SIJ as the symptoms overlap quite a bit. Also that surgery isn’t always the first option… I would always try a more conservative treatment if available first. You never know it may work for you.

 

It is tricky to diagnose, get many opinions.

 

It’s such a misunderstood condition. Even doctors don’t seem to understand it or the severity of it. Because I have to work my life has been reduced to only work. I am unable to do any traveling or much socializing. I cannot even sit on the floor to play with young family members and I feel I am a burden to my husband. I must conserve my energy for necessary things, therefore I have had to give up things I enjoy. But because we “don’t look sick” we are considered lazy, antisocial or attention seekers.

 

Most Physicians do not understand the condition and have NO idea how to treat it.

 

Just because nothing shows up on scans or x-rays does not mean there is no problem. It can mean that the type of scan needed to show the problem has not yet been invented.

 

That it’s not fake, the pain is intense when SI is out of place. Exercise doesn’t make it better, at least for me. There is no easy fix. It’s not like just having a sore muscle, it’s a deep pain that doesn’t always go away quickly.

 

One back surgery leads to another.

 

We try. Even if we are unsuccessful, we try.

 

There is help. Don’t give up hope.

 

This syndrome can completely incapacitate a person and it is a long and painful recovery that is not well understood by most of the medical community.

 

It is frustrating that so many people suffer from this and yet there is not a lot known about it. I also feel like we are forced to figure a lot of our treatment out for ourselves rather than follow a treatment plan. On top of feeling like crap and being exhausted, we also need to research options and at the end of it, it’s a crap-shoot as to whether it will work or not.

 

Doctors kept telling me your SI Joints could not cause pain even though I could demonstrate for them that mine clunked back and forth. The pain was like an icepick stabbing. I could only function 3or 4 hours a day. Every morning I wished I had died in my sleep.

 

That we may seem fine and able to do things, but the pain can come on really bad all of a sudden or gradually. Sometimes a short rest and we can deal and continue with what we were doing. Other times it can put us down for days.

 

Physical therapy works and routine exercises along with SacroLoc belts help.

 

The pain is absolutely AGONIZING, and often extremely debilitating too. Some days, I can walk and move just fine (though never, ever WITHOUT pain), and some days I can barely move my lower half. Because it is an “invisible” condition, the stigma around words like “disability” is very frustrating, and I find it is a relatively unknown and misunderstood affliction.

 

Be an advocate for yourself! Go to your doctor and TELL them what tests you want run. You are paying them!

 

Self advocate and trust your instinct over what the majority of Doctors will tell you. Research everything thoroughly and never give up!

 

How horrible it is, to be in constant chronic pain, to have insurance companies laugh in your face and deny 80% of the treatments, including fusion. How horrible you feel not being able to work, at the same time being denied disability because “you can still walk.”

 

SI ligament laxity is likely a problem and regenerative treatment is an option. However at a certain point a full body dysfunction will probably be involved and full body rehab is required. Don’t do cortisone injections as this will damage the ligaments. Don’t push through rehab. No pain no gain does not work for chronic pain patients and exercises have to be slow. Don’t rush into surgery as it may cause other problems down the road.

 

That it can really incapacitate you on some days and other days you can almost be normal and I don’t really know what kind of day it’s going to be until I am in it.

It is hard to explain that you can’t go to normal social events because you can’t sit. Seems like no one understands. Physical therapists get frustrated that they are unable to figure out what will help, then they blame you. I work out every day and am studying to be a yoga teacher (with the hopes that I can self-treat. I’m losing hope with the medical profession.)

 

People should know that this is a debilitating silent illness. We look fine but so many of us struggle to perform our daily activities.

 

It’s a long road to diagnosis, let alone recovery.

 

Seems to me that SIJ issues rarely occur in isolation but as part of either an accident or a systematic disease. I’d be very careful to make sure it isn’t hips or lumbar related first. Also check into nerve entrapment issues first as well.

 

Just how much it destroys every part of your life (it cost me my marriage) and what a struggle every minute of every day is.

 

The pain is constant, you can have good days but then you pay for them the day after. It is a seriously misunderstood condition and very much underrated for how debilitating it is. Different people have different symptoms and levels of symptoms. Women will suffer more around menstruation.

 

Its not well known and its a nightmare to diagnose. I still feel like it may be used sometimes as a last resort diagnosis when all other possible issues are ruled out. It’s a very frustrating disease and I feel like it’s never really successfully treated. Patients who have it are forced to live in fear waiting for their next flare-up. I’m too scared to have children. I’m almost 32 and am too frightened to get pregnant because I just couldn’t cope with the pain it may cause.

 

Was told SIJD will not show up on imaging because it is a movement disorder and imaging requires you to be immobile

 

One moment I may seem fine, and the next, I can’t walk.

 

The pain is horrible. You might not see a physical injury on the outside but this pain keeps the person from doing every day normal activities.

 

You need to try everything before having surgery, which I did, and surgery was my last hope. All is good seven, almost eight weeks post op.

 

I’m still not sure if the issue was with my SI joint as I have not received any relief from my pain since having the SI joint fusion. The surgery caused me excruciating pain!!! The orthopedic doctor who did the fusion surgery apologized to me that the surgery did not work. Said he was certain that it would. My advice would be for those suffering from SI join dysfunction, be 100% sure that this is what is causing the pain. They sell this SI joint fusion surgery as being minimally invasive. I have a 3-inch scar on my hip/buttock and was in the worst pain in my life from this surgery. I remember thinking “oh my God, I think this just made my pain worse!” I cried everyday for the first 4 weeks after the surgery from the severe pain. In summary, my life was turned upside down from this chronic back/leg pain. I lost a great government job with the county I live in and am on permanent social security disability now at 46 years old.

 

Work on muscle imbalances to compliment over the long term. Choose chiropractor VERY wisely. You need an honest one who is skilled to get this right.

 

It can be totally life changing. Everything is such an effort and so painful. Walking, dressing, showering and even sitting.

 

I did not respond to provocation. I was also able to walk. Many people have majority of problem in legs, my biggest secondary problem was muscular cramps in back causing malalignment that is tremendously painful.

 

That tests are negative but still may have Si joint dysfunction and that not all dysfunction is the same despite people comparing their post op journeys on Facebook. All unstable SI joints are dysfunctional but not all dysfunctional joints are unstable.

 

Don’t give up finding a doctor that will really listen to you.

 

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