Feeling Uneasy Asking, But it Feels Like a Fit?
For as long as I can remember, I've been flexible. As a kid I learned to roller skate in a full squat because standing felt too risky. Cute party trick. Probably an early sign of my hypermobility.
The joint stuff started early
In college, my knee gave out walking upstairs with a laundry basket. I watched my underwear tumble down two flights helplessly and couldn't get my knee to cooperate to go rescue them. For years after, even the subtle incline of an airport jetway made my knees feel like they'd give out. Evenings, they'd throb with pain that massage only barely touched. Shoulders, elbows, hips too. I assumed it was normal.
Then the muscles got involved. Three minutes of gardening in a squat and I'd be sore to the touch like bruising for days. Any attempt at working out came with a painful reset every time I had to stop and restart.
Then my fingers and toes started to "sprain." My doctors said that wasn't possible.
- Pressing the home button on my phone: thumb sprain, days of pain
- Picking up a small plant while potting: immediate pop, middle finger
- Stepping out of bed: toe, just from barely taking a step
At any given time I'd be down three or four fingers and toes.
The AIP was a game changer
In something close to a panic, I started the Auto Immune Protocol. What did I have to lose, really? I'd give up comfort foods if it meant I could get my hands back. I identified major triggers (sugar and tomatoes being huge offenders among others). I eventually went back to rheumatology with some other joint pains and my new rheumatologist could find no sign of what my old doctor told me was fibro... she said if I had it, it's in remission. #smallvictory!
Thanks to the AIP, within a week I was able to MOVE. I was able to jog a MILE 2 weeks after eliminating sugar. Wild. That's why I'm now a cyclist and hiker. The diet gave me my body back.
But lately, that advantage is slipping.
My back deteriorated to the point where I couldn't walk last year. I couldn't put on my own socks and shoes. I'm now on epidural injections every four to five months to stay mobile. I also have MVP, I had a retinal tear years ago with no idea why, moderate tendon tear in my hand... from what?? that required surgery, and gums that require four-month dental visits regardless of how diligent I am.
Where I am now
A month ago, a podiatrist was the first person to suggest hEDS after I think a lot hinted at it following a similar line of questioning. A lot of things clicked at once. Affirming and scary in equal measure, and it's made me very clear that I need to protect the mobility I have right now, not save it for later.
Last week I lost the use of my hands after three days of sketching for a major project bid. I'm a commercial photographer, so this is part of my job. Tendons went into full revolt. Couldn't hold a toothbrush let alone a glass of water. Ended up at urgent care this past Saturday for a steroid shot because of unbelievable tendon pain that kicked in suddenly several steps into the grocery store that put me in one of those electric buggies to do my shopping.
The kicker: a supplement I thought was helping turned out to be derived from one of my eliminated foods. That might be the source of this massive flare (I'm hoping).
I'm posting this because I want to know if this sounds familiar. I'm not looking to hang my medical identity on hEDS if I'm off target, but it feels like it aligns. If it's a swing and a miss, you can say that too.
This kind of uncertainty can feel really isolating. But every day I can get out into the woods is genuinely a gift, and there's still so much more I want to see and do. I'd like to keep it that way.