Had a good checkup with my PCP this morning. She helped expand my understanding of a “flare” and thought the arm that had the shingles vaccine still looks terrible even though it’s improved considerably. Until it fully settles down I’m still in a bit of a flair.

She’s excited I’m finally seeing the hypermobility PT and wrote down his book recommendation. She’s advising I put off starting myofascial release massage therapy until the new PT thinks my upper back and neck ready for it.

Salt is medicine! I’m to keep reminding myself. Since I engage in restricting food I’m likely to pickup random food rules since they enable restriction. Also, my family had several people with hypertension, it doesn’t mean I have it.

I’ve been taking electrolytes like I’m training, after exercise. I need them before teaching, PT, walking, out anything stressful. Sometimes after too, but before is crucial. Brain fog and/or increased fatigue are also signs I need salt or electrolytes.

#dysautonomia #POTS #fibromyalgia #HypermobilityDisorders #Reynauds #ChronicPain #PosturalOrthostaticTachycardiaSyndrome

My hypermobility PT recommended “Living Life to the Fullest with Ehlers-Danlos Syndrome” by Kevin Muldowney, PT, since he’s already begun teaching me the Muldowney Exercise Protocol. The same protocol is applicable for hypermobility spectrum disorder, it’s the H in hEDS. The protocol is a progression of joint stabilization exercises.

I’m just on page 27 and it’s fantastic. There’s a reason why some of my muscles never relax fully! They’re in constant spasm because my joints cannot be trusted to hold!

The exercises to stabilize the SI joint are close cousins to stuff I do in yoga. They will be easier to progress with. He also started me on the exercises to stabilize my neck since I experienced whiplash in 2012. These feel less familiar, but I’m picking them up quickly!

#dysautonomia #POTS #fibromyalgia #HypermobilityDisorders #Reynauds #ChronicPain #PosturalOrthostaticTachycardiaSyndrome

The new PT is very knowledgeable about yoga! He knew of the studio when he asked which Ashtanga Vinyassa studio shamed into not taking extra care with shoulders, resulting in injury a few weeks later. Knew the late, Iyengar yoga teacher who used to swat the back of my head in downward facing dog.

I shared my desire to get back to full inversions. He asked how long it’s been (2021) and remarked that’s it isn’t long ago and is a reasonable goal. He joked that an inversion is a good way to keep the blood in my head!

He also had insight into the pain I experienced in adolescence, including the way running hurt along with triggering my asthma. The hypermobility, and I was way more bendy as a kid, has been messing with me all along. My complaints of pain were usually minimized as “growing pains” or I’d be told not to push so hard at training.

#dysautonomia #POTS #fibromyalgia #HypermobilityDisorders #Reynauds #ChronicPain #PosturalOrthostaticTachycardiaSyndrome

I was referred to the PTs who specialize in hypermobility disorders at our university hospital system months ago. Today I finally got to meet my PT. He was bemused that I’ve since been referred for knee and shoulder PT.

I asked him to help me connect a lot of the diagnoses I’ve been given. He’s started me on joint stabilization exercises! The hip/core ones are the closest to yoga, I caught on quickly. The neck ones are trickier, not as intuitive. He wanted to give me both sets because I’ve had a neck injury and have low back & hip pain.

He also helped me instant what a “flare” is! A question that’s come up, but I haven’t been sure how it applies to me because I’ve been managing symptoms for years, not knowing I was having a flare.

The terrible reaction I’ve been experiencing after my second shingles dose? It’s a flare! Dragging around for two days with high fatigue and pain after overdoing it at PT? Also a flare.

#dysautonomia #POTS #fibromyalgia #HypermobilityDisorders #Reynauds #ChronicPain #PosturalOrthostaticTachycardiaSyndrome

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