This feels like a good segue to a health post. The fallout from my fracture in 2022 continues to yield insights about my health. Thankfully there’s been nothing frightening thus far.
When my hand rehab stalled I was referred to a hand specialist. In addition to my fracture I had also injured two ligaments, on opposite sides of my hand. A tiny bone in the wrist was tipped out of alignment. Some blood tests also revealed I was anemic! Even though all this was found, and treated, my hand’s recovery still dragged.
It was suggested that a rheumatologist review all my tests and assess me. In June 2023 I was pretty perfunctorily diagnosed with hypermobility spectrum disorder and fibromyalgia. I was told my PCP was equipped to treat me. A few months later a doctor in the university hospital system suggested dysautonomia might be part of the explanation. Having been hypermobile since childhood, and experienced my complaints about pain getting dismissed as “growing pains” or chided for “overdoing” at practice, I still think that fibromyalgia may have been with me for decades. I’m still trying to get a referral to the right neurologists.
In the meantime I started the long overdue rehab for my knee. I seriously injured it in high school during a casual, off-season game of water polo. My knee surgeon in the late 1980s told me the injury would come back to haunt me in middle age.
Although I’ve been amazed to discover I have no osteoarthritis in the joints imaged during the past few years, my right patella has lost all of its cartilage. I’ll need a patellar femoral replacement in the future. At night, when I stop moving, synovial fluid drains from the joint, leaving nothing to cushioning a patella that’s become like sandpaper! PT and a couple of different injection drug treatments are being tried in hopes it can buy me more time. I’m sure it’s also to make the case to my insurance that I really need a replacement covered.
My physical therapist is really great. He saw my hypermobility and Reynaud’s syndrome diagnoses and started to watch for evidence of dysautonomia because it’s often present with hypermobility disorders. After a few weeks of my jumping up from exertion in my lower body, only to feel a little dizzy and go pale, my PT said, “This is what mild POTS looks like! You definitely have dysautonomia.”
He went on to note that he’s put this detail in my chart to remind him to take a different approach so I’m not hit with post-exertional malaise for two days after PT. He said to keep pushing for a neurologist referral to get an “official” diagnosis, but he’s convinced and is teaching me to work with it.
I also noticed I’m experiencing mild tachycardia most days. Dinner and exciting, prestige TV often sets my heart to racing. I also feel like the bottom drops out if I push myself, ways I used to be able to push myself in more vigorous yoga classes and when I was training as a swimmer. Over the past couple of years of getting OT (hand therapy) and PT I’ve heard various versions of, “This is rehab not training!”
My PT has strongly advised me not to push if I’m even slightly nauseous. He shared that my tendency to feel nauseous is another sign my autonomic nervous system is not working properly. I been able to slowly increase my stamina, but still overdo it at PT, then need a day or two to recover.
#dysautonomia #POTS #fibromyalgia #HypermobilityDisorders #Reynauds #ChronicPain #tachycardia #PatellarFemoralReplacement
Sherri Koehler (she/her)