I just wrote this in response to a specific comment from a reader, however I thought it was so important, I wanted to put it in its own post.
As you may know, in the past year I have finally begun to understand a genetic condition I now know has affected me throughout much of my chronic pain journey– hypermobility.
However, part of the reason why I’m adamant about sharing my journey with hypermobility is not only to raise awareness about this one issue, although that’s part of it.
It’s also that I want to show you how much your life can change once you find the right people who really understand your issues.
In my case, I finally found a few medical professionals who had taken the time to understand hypermobility, and why this subset of their patients seemed to have such a different experience from all the rest.
For example, my physical therapist Kathleen at Muldowney Physical Therapy has helped me to understand the relationship between hypermobility and another medical condition I have, called mast cell activation syndrome.
She’s helped me understand the correlation between mast cell flare-ups and systemic inflammation, and how, in turn, that may impact my joints.
There are so many factors at play here– stress, nutrition, sleep– things I never really used to think about, in terms of musculoskeletal pain before.
I’ve heard from many of you who are wondering if you have some sort of underlying condition going on.
For example, I often end up doing coaching calls with a client who mentions the question of a potential auto-immune condition. Maybe one doctor had mentioned it to them, but they didn’t really pursue a diagnosis.
Or maybe they have chronic widespread joint pain, and one of their close family members has an autoimmune condition (making it way more likely that they have one, too).
What I always say in these cases is to really pursue this diagnosis.
Even if, at the end of the day, you end up ruling it out, it is so worth it just to know for sure.
And if it does turn out that you do have something else going on, once you know that, and work with someone who knows how to treat it, it can really make such a huge difference.
Sometimes the little things can add up:
It can be really scary to contemplate whether you have a serious medical condition. I’ve been through it myself, both with hypermobility as well as my diagnosis with mast cell activation syndrome.
In both cases, facing the question of whether or not I had it, in the beginning, was way scarier than actually dealing with it.
What I found is that, in addition to taking medications and doing some of the serious treatments, you can sometimes also make a huge difference just by understanding your condition and changing things about the way you live your life.
Of course, I am not saying to disregard the advice of your doctors– not at all! What I am saying is to find doctors who can look at the entire picture with you.
- Here is an interview that my mast-cell doctor, Dr. Castells, did with Yasmina of Healing Histamine, on the dramatic recoveries she’s seen some patients make with lifestyle changes.
- One reader of my blog, Helen Mawson, discover that her SI joint pain was actually being caused by an autoimmune condition called anklyosing spondylitis. She was able to drastically reduce her symptoms by using dietary interventions, which she explains on her website.
- And, of course, me! I am really just beginning to write about what I’ve learned about some of my various health conditions, but for more on hypermobility, you can check out these posts.
- I’ve also just started to write about mast cell issues in more detail. I couldn’t really write about it for a while because it was somewhat traumatic when I was first diagnosed, and I was trying to prioritize my mind-body connection. But I am doing a lot better now and am just starting to share this info too.
I know it can be a bit scary to contemplate whether you may have a more serious diagnosis or underlying condition affecting your SI joint issues.
But what I’ve found is that, once you find the right people who really understand, they can help you find all kinds of ways to make your life better.
Sometimes, that treatment may involve a serious medication or procedure, but with any chronic condition, a lot of it can come down to simply understanding it and structuring your life differently.
The right information can make all the difference in the world.
And I really believe that, when you know exactly what you’re dealing with, it will give you an edge, compared to working with people who take purely a musculoskeletal approach.
I have so much more info coming for you guys, including more on the potential causes of SI joint dysfunction and more.
8 thoughts on “Knowledge is power: Find the right specialist who understands your issues”
Thank you for all of your awesome information. I really appreciate you. You mentioned exercises on one blog that have really helped you. Can you go through those again please. Thank you! Ronda
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Hi Ronda– thank you so much for the kind words 🙂 I’m always glad to know when people find my info helpful. In terms of exercises– were you more interested in land or water exercises (or both)?
Can u tell me who is the best doctor in the USA for SI joint problem!!
My husband has been in such pain for 2 months and has had therapy and steroid injections in the SI joint and facets and nothing is working.. major spasms and he is or was a healthy person ..
Hi Barbara, I’m so sorry to hear this. Unfortunately, I can’t say that there’s really one doctor who’s best, because one treatment approach may work better for one person versus another.
However, I do keep a directory based on reader recommendations– I only add someone to the list when someone I know has had success with them.
I hope this might help! https://sijointsaga.com/physical-therapist-and-doctor-directory/
Appreciate all your gems of wisdom. Have you done any research on whether or not lumbarization of S1 can be the cause of chronic SI joint upslips? I don’t have true Bertalotti’s Syndrome since I don’t have pain unless my SI joint is deviated but I do have lumbarization of S1 with asymmetrical articulation of the transverse processes with a sacralized transverse process on the right with a psuedoarthrosis showing increased sclerosis at the bony junction. Although docs keep telling me this “might” contribute to my SI joint instability I am hoping for a more definitive answer for this reason – if this congenital abnormality is more of causation for my SI joint instability than loose pelvic ligaments it would be in my best interests to know this since that would seem to indicate that prolotherapy would not be of that much benefit for me.
I have searched Bertalotti Syndrome forum for info about this but still not finding much. Let me know if your research ever takes you down this path of questioning. Thank you!
Hi Barbara, so glad this post resonated with you! I have a few thoughts to share on your situation. I agree with your doctors that it might not be possible to pinpoint *one* exact cause of your upslips. However, I think it makes sense to think of your situation as a combination of different factors.
When people have Bertalotti’s syndrome, or the scenario you described, it is from birth– however it doesn’t usually cause symptoms until later on in life. https://en.wikipedia.org/wiki/Bertolotti%27s_syndrome
I think it would be important to look at what changes at the point when you start to experience pain. It does seem like your body needs to compensate for the loss of range of motion, at the point you’re describing, elsewhere– which can cause the upslips.
I think the best person to ask might be a doctor who specializes in prolotherapy. There are some doctors who offer it, because they’ve had a few trainings in it– and there are other doctors where it is really the main thing they do. I would recommend trying to find someone in the latter category. I think they may tell you they think prolotherapy could still help. (And this is what I’m trying to get at in this post, overall. When you find someone with the right specialized knowledge, they can really give you a better an answer than the people who are more general in their approach. That can make all the difference in the world!).
A sprained ligament is still a sprained ligament, regardless of how it was initially sprained. The question for you is whether prolotherapy might be beneficial to counteract the stresses coming from S1. I would leave it up to the doctor to say for sure, but I think that if used in combination with physical therapy and strengthening, there is a chance it could work.
Hope this helps!
Thanks Christy, that all makes perfect sense! Right now I am doing well. Just working to stay in alignment and see how it goes. But if I have some more ups lips in the coming months I figured I ought to be prepared to either consider prolo or not. I did get name of good pro doc in my area from another forum member so that is great!
Thanks again for your thoughts, insights and wisdom
So glad it’s helpful!