Second dose of Shingrex acquired with 3 months from the first dose. Wondering how long it will be until I feel terrible.
The first dose kicked my ass harder than the first COVID vaccine dose. I’ve been warned the second shingles dose can be worse, especially if the first one was rough.
My Mother had shingles a few times, I’ve seen what misery it causes. I am grateful we can plan for an easy weekend while my dodgy nervous system reacts.
Woke up with all the ache; enough leg pain I couldn’t sleep despite wanting to. At first I thought it was my “normal” morning pain at its highest setting and got dressed thinking I’d feel better once I got moving. I was mistaken.
Putting clothing on made everything hurt more. The arm that received the vaccine, which was nearly painless, has an angry, red mark. The muscles have knotted up around the injection site and are hot.
I made a point to move my arm a lot. I started shoulder PT and have a short list of exercises to start adding in. My PT accidentally gave me a bruise (I bruise easily) trying to convince my chronically over-tight shoulder muscles to release. That’s all a-throb as well.
To top it off, I’ve had four high heart rate alarms from my watch in the past hour. Eating, playing Wylde Flowers, and thinking ago this toot are apparently too much excitement.
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
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
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
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
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
Today my shoulder PT said both my shoulders were in place, which is to say the top of my upper arm bones are properly seated in the shoulder sockets! Over the past few weeks she’s found both of them slightly out, not surprisingly since joint subluxations (a little bit dislocated) are common with hypermobility disorders and are the source of a lot of the pain these disorders cause.
For years yoga teachers have encouraged me to pull my shoulder blades together, often by placing the edge of a hand along my upper thoracic spine. This unfortunately encouraged my over active trapezius muscles to jump in and pull so hard my upper arm bones sublux. I’m learning to use the scapular muscles very deliberately and it’s helping to keep my arms in place!
Yoga isn’t the only culprit, competition, middle distance breaststroke contributes a lot as does the hypervigilance cultivated through developmental trauma. It’s wild to realize a huge amount of my pain is due to having my joints partially dislocated much of the time.
Upper body exercise has started to get my heart going and brings on dizziness. I’d had a few weeks where it seemed like I wasn’t getting as worn out, but as I try to increase endurance or weight, I feel dizzy.
Today in “Why is Sherri’s Heart Racing?”
I’m excited to update my orthopedist’s medical assistant on the PT news and it’s positive enough that I might not need an MRI this month. My shoulder progress might be glacially slow until my cervical spine is stabilized and my trapezius muscles settle the fuck down (something I can’t remember feeling because they’ve been tight so long). She was excited to hear that I finally got in with the hypermobility PT.
Then our cat was especially adorable and the combination of good news phone call and cute cat* was too much excitement for my nervous system/heart. My heat also thinks I’m way too excited writing this toot. 🙄
*Check timeline for cat tax.
Today in “Why is Sherri’s Heart Racing?”
The feeling of accomplishment at getting my wife’s prescription sorted with CVS and processing again after the prescription got stuck in paperwork limbo.
My PCP noted that “any stimulation” can increase my heart rate. Season 4 of Fargo, fair enough heart. Getting a task done or cute cat posts on Reddit, that’s way too much drama!
I started to experience chronic low back pain in my early 20’s. In my 30’s it got worse, my lowest 3 lumbar discs were bulging. I was told it was due to weight gain and embarked upon starvation until I was a “normal BMI”.
At this point, after years of continued disordered eating and over exercise, my lowest disc ruptured. I kept asking why this was happening. Yes, disc degeneration comes for everyone if you are lucky enough to get old. It generally shouldn’t start at 30.
There was some thought that it was hereditary. My maternal grandfather experienced degeneration of his vertebral discs and ultimately had a spinal fusion to stabilize his spine.
It turns out early degeneration of the discs is one of the signs hypermobility disorders! Wonky collagen affects all kinds sorts of body parts!
I’ve been reading “Disjointed | Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders” edited by Diana Jovin and it’s been great. It’s helping understand just how long I’ve been dealing with things.
Long, ranty toot ahead!
My doctors and I started to consider that I’m experiencing #dysautonomia this past autumn. I had been referred to the pain clinic that’s part of our local university healthcare system and the doctor I see there referred me to one of the chiropractic doctors affiliated with the clinic.
At my only appointment with the chiropractor they used the time to take a very detailed health history and at the end told me I’d answered “yes” to all but one symptom of dysautonomia. They told me they had thought to take this history because I had been diagnosed with #HypermobilitySpectrumDisorder (#HSD) and my primary care physician also suspected that I have #MCAS.
The chiropractor noted that dysautonomia is pretty common for folks with a hypermobility disorder (60%!) and rheumatologists often miss it and incorrectly diagnose fibromyalgia since they overlap symptoms, including central sensitization. She said she would refer to the two neurologists within the system who deal with dysautonomia.
She then referred me to a naturopath within the same system, without talking to me and wouldn’t reply to messages. Since I have an excellent naturopath already, one who is well versed in dysautonomia, I didn’t want to pay over $600 out of pocket to see another one. The next time I saw the pain doc I brought up dysautonomia/#POTS, adding that my knee PT had remarked on my symptoms and put in my chart that he felt certain I have dysautonomia/POTS and should have a neurological consult.
Since it’s a university healthcare system I always chat with a medical student before seeing my pain doc. The medical student laughed and asked why my PTs or I would suggest something “so unusual”?! He then primed the pain doc to dismiss me even though I reminded them I already had an HSD diagnosis and dysautonomia isn’t uncommon.
I talk to my primary physician and my osteopath, both light up at the suggestion of dysautonomia precisely because it explains several things. Both strongly encourage things like increased salt/electrolytes, doing some of my strength exercises supine or seated, not pushing myself in order to avoid post-exertional malaise. My PT who specializes in hypermobility disorders says it’s rare when patients don’t have some kind of dysautonomia.
I go back to the pain doc and insist that they stop dismissing me. I ask them to honor the neurological referral the chiropractor said she was making in October 2023. They finally make a referral to neurology in June.
I just got a call from the pain clinic to tell me that neurology rejected my referral since there’s no doctors working on this disorder. I don’t know if the two doctors the chiropractor said dealt with it left between October 2023 and June 2024 or of they were just wildly confused. Either way, it sucks and is very frustrating.
The online discourse around doctors in Oregon who treat dysautonomia has been among the lines of, “I heard a nephrologist in Bend is seeing patients!”
To translate that for non-locals, people are suggesting a kidney specialist in a small, Central Oregon town 120 miles away from where we live.
Maybe the Long COVID clinic is seeing folks? My osteopath gave me a handout he grabbed at a doctor lunch seminar on dysautonomia and Long COVID. However, since my dysautonomia is not due to COVID, that’s another referral that would go nowhere.
I am really lucky, my symptoms are mild and I have seen improvements with treatment approaches for both MCAS and dysautonomia/POTS. While I’m not wild about more doctors, I have really hoped to find the right specialists to help me stay on this plateau and not wait until some health event causes my symptoms to worsen!
@akf I’m really grateful the providers I have all know this is a valid issue, at least I’m not fighting that fight and I’ve got helpful input from everyone I see.
And it’s demoralizing. Someone on Reddit shared their cardiologist referred them to OHSU neurology because they want a tilt table test done and OHSU has the only tilt table in the state. The referral was rejected because “We don’t treat POTS”.
Sherri Koehler (she/her)
A.K. Farrell
Adrianna Tan