In today’s post I’ll be sharing more about my joint hypermobility diagnosis journey. Due to brain fog and the length of time this went on, my chronological ability is a tad sketchy. Regardless, the emotions and the pain of my story are real.
I hope you can’t relate to my story. But I’d love to hear from those of you who have also experienced a diagnosis nightmare. Particularly those with hypermobility.
From Spark to Flame
In the spring of 2011 I was tired of the sharp pain in my left armpit. It had been happening on and off for years. I didn’t have the brain power or the time to deal with it. I had three little kids instead.
That year I planned on going back to work as an EA. My kids were school-aged. And I was going to take the EA course that fall. Being on my feet more often without the ability to rest when I needed was a game changer. But not in a good way. Sitting in a chair for 6 hours a day for school was brutal.
The Beginning of a Beautiful, Medically-Invoked, Friendship
I started seeing a physiotherapist. She was heralded as one of the best diagnosticians of joint and muscle pain in town.
I will be forever grateful for the referral that sent my brother to see her after his knee injury. Which led to a referral from my mom that I should see her.
She has been with me from that time. She has saved my life in more ways and more times than I can count. She is my superhero.
From our beginnings, J walked by me through the process of navigating the medical field. With chronic pain. As we became friends and she learned about me and my family, she also became a trusted counselor. As she saw me opening to other forms of therapy, she shared her knowledge of energy therapy. When she learned my kids all have ADHD like their dad. She gave me hope and help on that subject too!
In her role as a physiotherapist, if she’d had the authority to order tests. I believe my diagnosis journey would have been completely different. But that is neither here nor there. Because I did not have access to a comprehensive team of doctors. I was the one running between and trying to pass on messages. I got them mixed up or had incomplete information. The doctors didn’t seem to care what J had to suggest.
So while J kept putting me back together and giving me exercises, the doctors kept telling me I was fine.
Doctors: Just work with a physiotherapist. It’s not a medical issue.
On the other hand, I would sneeze and feel something rip and go cold in my left shoulder blade area. I’d go see J and she’d fix me.
I’d wipe a counter and the same sensation. Back to J. She suggested something deeper was happening. (of course all she can do is find the spots that need fixing and fix them. She can only work with the effects something is having on the joints. She cannot see or fix the joint itself. Only its placement in the body,)
Coldplay Has Got Nothing on my J: She Will Try To Fix Me
I’d fight with doctors to give me an ultrasound. I’d experience deep pain in the exam as they shoved the paddle into my abdomen and groin. Often trying to locate missing organs. They always showed up eventually.
***TEST RESULT NORMAL***
Chiropractors.
***DIAGNOSIS: you’re out in a few spots. *crack*
Me: (walking out the door and looking down to step over the ledge)*crickety crack crack pop*
I’d go back to the doctor. Same procedure every time. They’d want to know where the pain was coming from. (everywhere) They’d ask how the pain felt. (depended on the day) They’d ask what made the pain worse. (being mobile, living my life) They’d want to know what made it better. (laying down, not moving)
“Well Pam, you can’t lay on the couch and expect to get better” (actual comment from an actual doctor that had a quick chat with me over the phone, I thanked him)
Me: Thank you. Good day.
Doctor: There might be something I can do, just don’t get your hopes up.
Me: I said Good Day
(maybe not those words but that was the tone)
This was always hard to hear. I had been running and working out before the pain got unbearable. And then I’d try again. J would ask when the pain started. (the day after I tried to jog. I just lifted 5 lbs a few times and then a few more the next day, etc.) I’d flare. My joints would be less stable. Back to J. She was always so kind and just put me back together.
I wanted nothing more than to run and workout. The doctors would have me move this way and that. Lift this arm. Touch the floor and come back up. Any pain? Now? Now? (nil, the pain would surface the next day though, and it would bring reinforcements.) But the appointment was over and the doctor wasn’t there to see that happening. So it wasn’t in the charts.
I don’t know what my doctors wrote. But due to no further investigation, I am led to believe it was something like the following.
***DIAGNOSIS: Kinesiophobia (fear of movement)/ Agoraphobia (fear of open situations: due to potential for unexpected pain and inability to attend to it)***
Back to J. She would put back all the spots that the doctors had unwittingly subluxed with the tests. J looked at the pattern.
***diagnosis: extreme hyper mobile joints*** but this was not a diagnosis the doctors wrote down or understood
Diary of A Misunderstood Patient: “I Tried to Tell Them”
I don’t blame the medical professionals in the beginning. But as the situation went on and I tried to tell them how this would go.
“I will do the tests. It will not cause me pain now. Because I have extremely mobile joints. And tomorrow due to shifting and stretching those joints outside their comfort zone, they will sublux. The pain is not in that shift. The pain is from the muscles that are left to hold that spot together. Now that the joint is no longer capable of doing its job. That muscle will get more and more sore as it holds and holds anytime I am mobile. It will eventually give out. Another muscle will get involved. And so on down the line. While this is happening this joint will have more stress on it. Initially just the joints around the unstable one. But eventually leading to my main muscles and joints. It will cause great pain.”
Doctor: OK, so you can do the test?
Me: (blink, blink) Yes
Doctor: If I don’t do this test, I can’t diagnose you.
This became the answer from specialists I waited months to see. I couldn’t give up the chance for answers. So I would do the test.
***DIAGNOSIS: NORMAL***
***TEST RESULTS for their specific specialty: NORMAL***
Back to J. She would inquire how things were going as far as tests and treatments from the medical side. I saw pain in her eyes as she saw the misery and agony I was going through. In this process. And physically.
It was draining the life out of me. J was always careful not to complain. She would never say anything unkind or unhelpful with reference to doctors or their way of doing things. It was as though she had been there herself. And was at peace with it.
The Final Act: With Room For Improvement
During my “end-of-the-line-of-specialists” appointment with a rheumatologist I broke down. I sobbed to her. Something was wrong and nobody could find it. Everything was coming back normal. She said it had nothing to do with her specialty. But she would send in a request for an MRI.
I wanted this test to show something so bad. It seemed like such an odd thing to hope for. To be diagnosed.
I had the MRI. I waited to hear back from my family doctor. She said they found a tiny bone spur. In my shoulder blade region. It was creating inflammation in the tissue and everything else in the area. Every. Time. I. Moved.
***DIAGNOSIS: bone spur***
I felt validated. Finally! Someone saw something! My pain was real!
I waited to see a shoulder surgeon. He told me my bone spur was so small they normally wouldn’t operate on it. But I did have a small area for it to fit. So if I wanted they would do surgery. Um yess please. Please fix me.
***TREATMENT: surgery to remove “tiny” bone spur***
I waited more months to hear when the surgery would be. Then I waited months for the actual day.
I should mention that through this time I was also diagnosed with endometriosis and its ensuing pain and surgery. Every couple of years they went in to scrape out the scar tissue. And put my organs back where they were supposed to be. I was having more and more trouble recovering from surgery. The internal inflammation was crazy.
The Road To Being Un-Recovered
After my shoulder surgery I was so relieved to have that nasty scoundrel out of there.
But the recovery from this surgery was particularly difficult. The years of waiting for the next specialist. The next test. The next referral. Had worn down my body. Months of lying down whenever the opportunity presented itself at the end of a workday. The end of putting kids to bed. The end of the cleaning and laundry. It always had to wait. But the lying down instead of working out were creating more tell-tale signs that something was wrong.
After this surgery. My mouth had a pesky sore on it from the breathing tube pressing my lip between it and my teeth. Making it hard to eat anything. The pain of the gas they pump into you, moving up and out, was almost unbearable. It felt as though parts of me were being ripped apart.
The shoulder pain where the surgeon had used a knife and some did some cauterizing was fine. But the neck pain where they had twisted my head to get the right positioning. Had caused several exceptionally painful subluxations there.
I had to wait a certain time before I could see J following the surgery. It was agony. I was propped and pillowed. I used my cold therapy machine for my shoulder on my neck instead. Nothing helped. The strong meds they give following surgery are only prescribed for a certain time. I get it. My inflammation in my mouth (now I understand that was due to thin lining of my lips and mouth). My internal inflammation from the surgery. My unbearable pain in my neck. Were just starting to ramp up.
I called my doctor. She reluctantly, out of the goodness of her heart. Prescribed a few more but that was really all she could do. No more!
***DIAGNOSIS: drug seeker***
I suffered so much during that time.
It took most of a year to see the inflammation go down. About five years until I didn’t notice its effects anymore. So that tiny little bone spur had me struggling to workout for years.
Medicine vs The Patient
I never got to the point where that was fixed and all was well. Because during those years I also had pain and inflammation with my endometriosis. So many medications and therapies were offered that did not support my needs as a hypermobile patient. According to all the specialists, that diagnosis didn’t apply to what they were doing.
Somewhere in the following years my SIL told me about a syndrome she’d heard about on a show. It sounded a lot like what she knew about me. I have had so many suggestions from those who mean well. Making it hard to listen to them all. But this one stuck. Once she mentioned it, I noticed it being talked about in other arenas.
Ehler’s Danlos Syndrome. I did some research and it sounded like a plausible diagnosis. I mentioned it to my doctor and they dismissed it as a diagnosis that you either have or you don’t. There is no treatment. She ran through a few tests and didn’t mention it again.
I had a hysterectomy that fixed some issues but created a host of others. A story for another time.
I switched doctors. Again. A painful but necessary process every time. This doctor wondered why previous doctors hadn’t gone through the Beighton score tests.
We did those. I passed with flying colors in one section. But didn’t quite meet the qualifications in another. So technically I don’t have EDS. But I have hypermobility. Which nobody in the medical world other than J, seems to think is an issue. My doctor has ruled it out. Due to being one check mark shy on a page.
It isn’t his fault. But without that mark I am still just a kinesiophobic, agoraphobic, with unknown causes of depression and anxiety. Quite needy and schedules multiple pointless appointments. Low pain tolerance. Who lays on the couch all day and expects to get better.
From Limitations to Peace
Through the years, I tried to get stronger physically. I couldn’t run. It put the bones in my feet out. When I tried to do functional movement, one joint or another did not like it. Inflammation, subluxation. Back to J.
She would give me gentle movements to keep my functional movement in check.
A slip on ice. Run into by our pig. Dog head to my thigh slam. Another slip on ice. Mowing the lawn putting me into spasm (we lived on an acre and mowed with a push mower). Cleaning a pool. Bending into the fridge the wrong way. Sitting to teach piano. Stand you say? That creates the need to bend over to point at the page. I tried everything. Yet by living my life, my bones would inevitably shift and get stuck.
Where a typical person’s joints would not bend that far. Their connective tissue would hold them together. Protecting them from a subluxation.
In 2020, unrelated to the pandemic that was ramping up, my body was shutting down. The years of pain from living with unchecked torture, had taken their toll.
My nerves were showing more and more signs of wear and tear.
Over the ensuing years, I was seeing less medical specialists and more natural alternatives. I was finding my way to my healing.
More diagnoses from a naturopath. At first I dismissed them but now I feel and see the effects daily. #theydoexist
***DIAGNOSIS: fibromyalgia, myalgic encephalomyelitis chronic fatigue syndrome***
***TREATMENT: rest when you can, listen to your body, supplements, etc***
I saw a holistic health practitioner at the end of 2020 when my mom thought I was going to die. We were living with them on the farm at the time. And she saw what was happening. The strain my body put on me. And that my ability to fight back was waning. She was right. I see it now.
From then on, I listen to those who tune in instead of out when I mention those diagnoses. And healing has followed.
Diagnosis: Indifference to the Unknown
I still have no hypermobile condition diagnosis. I don’t really care anymore. I have found a community in those with EDS and other hypermobile joint conditions. As I listen to my nerves, my body designs a space for mending to transpire.
Treatment: Based Solely on the Needs of The Patient, Me
Energy work and emotional healing has been critical for means of growth.
The forest incorporates it all. Energy work. Emotional healing. Physical effort (not past your limitations). Rest (to the bones, spiritual, emotional, mental). Creating better pathways for focus (through awakening the senses and meditation and creativity).
Perks of Nature: The Phenomenon of Forest Therapy
Plus the benefits we garner solely based on practicing forest therapy. A stronger immune system response. Lowered cortisol (less stress). Improved mood (decreased tension, increasing feelings of vigor). Cardiovascular benefits (decreases blood pressure and reduces heart rate). Sharpened cognitive activity (increased function in the prefrontal cortex). And plenty more.
I have medication for my nerves which keeps most of the buzzing under control. And another for my “mystery” anxiety and depression. I believe there is a place for the medical world. It serves a vast purpose. But it did not serve me when I needed it.
I do not blame any person or hospital. I strongly believe the dilemma starts from a lack of proper education and awareness surrounding chronic pain. And where it is coming from. Not every diagnosis has a box to check yet. When the symptoms and diagnoses are not lining up for anything in the medical books. Listen to the patient.
You’re the Bee’s Knees, Thanks for Being Here!
To those who listened and payed attention and supported. Thank you. To my mom. To J. And to my SIL who saw a show and put more 2’s together than all my doctors combined. Thank you.
To all who read this far. Thank you!
Some of you will find reading a blog enough. But some of you will want to dive deeper. That’s where I come in. I have the desire to share what I have learned. Through the practice of forest therapy. If you’d like to see what forest therapy is all about and why a guided practice can take you deeper. Go to my How To Get in Touch page. And send me a message with your name and contact info. I will be sure to include you in my next forest therapy session.
🎵 Into the unknown! Into the unknown! Into the unkno-o-o-own! 🎵 And I’m okay with that.
SUNBEAM ACRES 