Hey everyone–
So, I think this is something a lot of people are thinking about these days, especially in terms of politics and world events.
It’s just human nature– people tend to dismiss facts and information that doesn’t fit in with the way they already see the world.
It’s true in many contexts, including healthcare– especially when you’re trying to find help for a condition many people aren’t aware of.
I’ve encountered this, time and time again.
When I first developed SI joint dysfunction, the first person I found who could help me at all was a chiropractor. Knowing what I know now, I regret all the time I spent going to see him. But at the time, he was the only person I could find who could even identify the problem, much less make the pain go away.
He could adjust my SI joints and put them back into alignment, so I could walk normally.
But the adjustments never lasted– I had to keep going back all the time.
After a while, he became frustrated. “I have other patients who are worse off than you,” he said. “And they don’t come in as often.”
Fast forward to now— I now know that I have a genetic hypermobility condition, and that I never should have been receiving chiropractic adjustments in the first place.
Every practitioner I’ve met who’s knowledgeable about hypermobility has told me that, in fact, my body is less able to handle the inflammation caused by a chiropractic adjustment. That is in fact why I always felt less stable after walking out of my chiropractor’s office, even though my SI joints were technically in place.
The chiropractor wasn’t a bad person. If anything, he was partially frustrated because he didn’t really want to be taking my money, for a problem that didn’t seem to be so bad.
But the facts of my case didn’t fit within anything he was trained to recognize, so his interpretation was that the problem was me.
Neuromuscular therapy
For a while, I was also spending a ton of money on massage with a highly specialized neuromuscular therapist. In her defense, I do think this was another case where she partially felt guilty for taking my money.
But after a while she would tell me “your tissues feel sticky. I don’t know what it is.”
She said she had a few other patients like me that she just couldn’t seem to help. Every time she went to work on them, there would be something particularly different, or stiff, about their muscles, and she couldn’t seem to help them long term.
She ended up referring me to Chinese medicine and acupuncture because she felt there was something else underlying my condition that massage couldn’t treat.
Technically, both of these practitioners were right– there is something different about me.
In the past year, I’ve been learning a ton about fascia. It’s the connective tissue that surrounds the muscles, and it turns out that it can actually become tight and restricted, similarly to how muscles do.
It’s a new area of research so a lot of people– such as my massage therapist– aren’t aware of it.
But I’ve found a few PT’s who really know how to work with it and have even taught me some self-massage. Now that I know what it feels like myself, I’m convinced this is what that massage therapist was picking up on.
It was right there, under her finger tips! Once you know how to look for it, it’s not that hard to find.
But somehow this person, who’d had extensive experience and training in working with the muscles themselves, could not identify a problem in the tissue that lies right above the muscles.
Again, it was the right thing for her to do morally, to tell me when she didn’t feel she could help, rather than taking my money.
But my message to you is never to stop believing in yourself, or that you can find an answer.
Looking back, I can see that I’ve really internalized some of the messages healthcare practitioners have given me over the years. Both my chiropractor and this massage therapist made me feel as though I was different, other.
That something was very wrong with me and that, my showing up for repeated appointments in an effort to help myself was actually, somehow, a waste of everyone’s time.
There was an answer. It was there all along.
Now I know that for many people, especially hypermobile people like me, we really do much better with the most gentle interventions and joint mobilizations possible.
I’ve also learned, from some very knowledgeable physical therapists, that we are more likely to develop tightness in the fascia, as it’s one way the body has of compensating for loose ligaments.
It’s all in perspective.
When I didn’t have the right information, I was really more vulnerable to internalizing what other people thought of me– that I was “over-anxious,” or “dwelling on things,” or “focusing on the pain too much.”
Now I honestly know how stupid that is– and if anything, hypermobile people are actually more likely to develop issues with chronic pain, because so many of our joints are wonky.
Now I’m armed with the right information, and not only can I help myself– I can help others.
So, if you feel alone– know that you are not.
I truly believe there are answers out there for all of you– whether that comes to SI joint issues or another problem.
You just have to have faith in yourself, and keep going.
My Sacroiliac Joint Saga 
Awesome entry, thank you. I can identify with this over and over and over. Feeling like the “outlier” seen by how many physical therapists, chiropractors, massage therapists, physicians, etc. It is easy to develop a complex when no one seems able to really “fix” you after so many repeat visits. I wish I had “fired my team” much earlier when any remedies were helpful, but never long-lasting, this is especially true of my reliance on chiropractic adjustments.
I do hope you will share more about what to look for in a fascia specialist, or any fascia techniques you think we should be aware of? I still get caught up in thinking this is all muscle tightness, forgetting about fascia.
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Hi Amy, so glad the post resonated with you! You bring up one of the most challenging parts of all of this– how do we know when a treatment plan isn’t really working? It’s so hard as the patient, because you don’t know what other options are out there. You’re trusting your practitioners to give you the whole story, but it’s hard, because sometimes they don’t always have it themselves.
And yes, I am definitely planning to share more about fascia in the future! For now I can say that I’ve experienced different types of fascia work, and I can say that the strange thing is, I’ve found that the lighter the pressure, the better! The opposite of what you might think.
Much more to say about this in the future!
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Hi Christy,
Such a great insight. My SI injuries have been complicated not just with hyper-mobility, but cancer surgeries, scar tissue, chemo, and CIPN. I did start a new chiropractor recently whose approach is totally different and am seeing results. I asked him about hyper-mobility and if it is something that will keep me from healing. And he told me, “No, we love special people.” What a refreshing attitude and gives me hope. I have been so used to being blamed for why body doesn’t respond to a treatment that is wrong for my body. I also several years ago discovered the MELT method that deals with fascia and have incorporated them into my routine and it makes a wonderful difference.
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Hi Gail, really glad you liked the post! This new chiro sounds like he has a great attitude! And that’s awesome that you’re seeing results. I personally had to stop going to chiropractors, but we are all different so I am glad this works for you!
I have heard of the MELT method before, but actually didn’t realize it dealt with fascia. That’s really great! I’ll be sure to look into it more.
Glad you are doing well!
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Yeah your right my chiropractor has the same problem and she sent me to the same person she goes to it like acupuncture but different it dry needling with electricity or Electrical stimulation she had a genetic hyper-mobility condition and mine was genetic birth defect. I have long legs and a tall spine but with short muscles so dry needling helped me make my muscles longer to support my body. It was so bad I had six bulging disc and my Si joint fell out of placement. It took 7 sessions of the dry needling to fix my back from bulging and another 10 sessions to start stretching the muscles out. I had to much inflammation in my Si joint but not enough inflammation on the muscles that was causing my Si joint. I never knew inflammation was the cure I thought it was just pain. I had the same experience and my chiropractor was pissed for one it didn’t get better it got worse and see loved getting the top doctor from the local magazine and she was the only one that thought I was sane she had the MRI done of my whole body and after that I was Considered the Patient for hell because everything was out of wack but the pain was in the area that no one wanted to think was the problem because of complexity but the person that review the MRI found it quick because my muscles did match my body. Now I still get the pain but between the dry needling and the Electrical stimulation works now I go once or twice a year depending on how much sitting I do I love to travel in my truck and RV
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Hi Randall, it sounds like you really have been on quite a journey– I’m so glad you finally found some answers! Sometimes it really takes finding that person who’s willing to think outside of the box, and realize that maybe, there’s still more for them to learn after their initial schooling. I have been hearing really good things about dry needling lately– that’s really great that’s been helping you, along with the electro-stim. Hope you continue to do well!
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Hi Christy
My journey sounds a lot like yours. I had been seeing a chiropractor for years but my SI joint would never stay in place for more than a day or two. So I just gave up it was too expensive and wasn’t really helping. She did do acupuncture on me as well but that never lasted any more than the adjustments did. About a year later I began to have severe pain in my knee I could barely walk. My Doctor did an ultra sound and said it was a bone spur on the very top of my knee cap and I should do physiotherapy so I did. That was a big mistake everything is much worse. You trust the professionals to know what they are doing but I don’t think they always know what they are doing. She did electric shockwave therapy on my knee (over 17 treatments) and things are way worse then before I had them. I have since found out I should have never had more than 3 or 4. In the meantime I’m still having SI problems. I had heard about a muscle skeletal specialist near me I ask my doctor to refer me I thought maybe he might be able to help. He sent me for a radio active ex ray. Found out I have a lot of mild arthritis which I already new about my on right side but he’s says I have it on both sides and my lower spine which isn’t helping my problem. Funny thing it’s worse on my left side but all my pain is on my right side. Then COVID hit so everything came to a standstill and that when I found you. Thank you so much for writing about this the exercises you suggested have been the only thing that has given me any relief. But at the moment they don’t seem to be helping much. I’m back to seeing the specialist at least he hasn’t given on me yet. But everything he has tried has done nothing for the pain I experience. He’s now referred me to a pain management clinic to do nerve blocking. Have you ever heard of this? After some research I’m so sure about this. It might help with my SI joint but what about my knee? I believe my knee pain is directly related to my SI joint being out of place. I know this because when I can get my SI joint in place I have almost no pain in my knee. I checked out the clinic he is sending me to and they deal with hyper mobile joints as well so I’m hoping to talk to them a d maybe finally get the right help. Sorry for being so long winded. Please keep writing about this important topic. You are helping people more than you know.
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Hi Sharon, thank you so much for your kind words! It means a lot to me to know my story is helping people.
Yes, I have heard of nerve blocking. For some people it does help. I think it depends on what exactly is causing your pain in the first place. For me personally, I would notice a night and day difference between when my SI joints were in and out of alignment. So the way I tackled the problem was more about stabilizing the joints, through gentle Muscle Energy Technique adjustments and strengthening, and I was able to dramatically reduce my pain that way.
I also think you may really be onto something with your observation about your knee. Doctors will tend to offer other procedures because it’s what they’re trained in. However, if you were going the physical therapy route (and could find the right person with the right experience) they would likely be willing to work with you on stabilizing both areas, to see how things improved.
I hope this helps! Thank you again for your kind comment!
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Great post ! Did PT help with your wrist pain at all? Keep spreading awareness !
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Thanks Sergio!
My PT’s who specialize in hypermobility have given me some hand and wrist exercises. However, the most specialized person I’ve ever seen about my wrists is actually an occupational therapist.
She is similar to the PT’s I mentioned, in that she didn’t necessarily learn about hypermobility in grad school. Instead, she took it upon herself to understand what she was seeing in patient after patient, and ended up specializing in hypermobility and EDS.
The things she picked up on were really fascinating– she explained to me how, I haven’t necessarily been using my wrist muscles in an optimal way, and that is why I sometimes have pain. I actually only saw her once (before Covid) however I may go back to learn more one day!
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