The F-words I’m Focusing on Following My Fracture

No, not that one. The other day, I Fell and Fractured my Foot (though I admit I probably said the other F-word a few times when it happened). I sprained my ankle, too, just to make it more Fun.

It was the Fifth metatarsal on the outer side of my right foot, the long bone that attaches to the pinky toe. It’s actually my first broken bone, which is surprising, considering how often I fall. It’s especially surprising given how much weight I’ve put on from the steroids, which also make my bones more fragile.

Kerry’s X-ray from a recent fractured foot. (Courtesy of Kerry Wong)

It’s a bad combination, but one that most people with sarcoidosis have to endure because steroids are pretty much the go-to treatment for sarcoidosis. They reduce inflammation, which is the primary culprit behind most sarcoidosis symptoms. But that help comes at a cost.

The thing is, I don’t even remember falling. I mean, I know I did, but …

1. I got up from the couch to meet my husband at the door.
2. I felt a little dizzy and lightheaded, but that happens a lot, so I don’t always pay much attention to it. I’m realizing now I probably should.
3. I was on the floor, in a lot of pain, with a panic-stricken husband looking down at me.

Apparently, I passed out for a moment — the doctors call that syncope — and that’s when I fell. It wasn’t the first time this had happened, but it was the first time I’d really gotten hurt from it.

That’s one thing about sarcoidosis. Even though it can cause dozens of symptoms on its own, depending on which organs are affected, it often brings friends, aka comorbidities.

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Small Fiber Neuropathy Is Going Undiagnosed in Sarcoidosis

Some are more common than others, and syncope is common for people with autonomic neuropathy or small fiber neuropathy, which are just two (related) ways sarcoidosis can present itself in the nervous system (aka neurosarcoidosis). The nerves that control autonomic (think automatic, the things you don’t have to think about) functions like circulation, digestion, or temperature regulation don’t work right, so there can be problems with any of those systems. Syncope happens when that leads to a drop in blood flow to the brain.

Fortunately, I already had an appointment scheduled with my neurologist for the following day. Even better, it was a virtual visit, so I didn’t have to go anywhere with this foot and this pain.

Though we had other things to discuss, this naturally took precedence in the appointment. She thinks I may have postural orthostatic tachycardia syndrome (POTS), also common for people with small fiber/autonomic neuropathy. POTS can also occur in people with Sjögren’s syndrome, another comorbidity for sarcoidosis patients, and one of the newest ingredients in what my rheumatologist calls my “autoimmune soup.”

My neurologist wants me to follow up with a cardiologist since POTS affects circulation. I also need to follow up with an orthopedist about that foot fracture and sprained ankle. And I’ve got to reschedule an appointment I had to cancel because of all this, too.

Although my doctors suggest I should make all these appointments right away, new specialists usually don’t have availability for weeks or even months.

In the meantime, I’ve still got all of my regular appointments to get to, and virtual appointments to work around when scheduling the rest, including:

• Physical therapy twice a week (though we’ve clearly had to adjust what we work on there)
• Intravenous immunoglobulin infusions once a week (treatment for the small fiber neuropathy)
• Therapy once a week (living with sarcoidosis affects physical, emotional, and mental health)
• Weight loss program once a week (trying to lose what I’ve gained from the steroids)
• Follow-ups with my orthopedist, primary doctor, rheumatologist, and weight management doctor

Aside from how painful and difficult it is to get around with a boot and crutches, I can’t drive myself to these appointments because it’s my right foot that’s injured.

But that’s where I have much to be grateful for. Some of these appointments can be done virtually, leaving me to deal with the schedule, but not the travel. Between my husband and my mom, I should be able to get to most of the rest. They’re always eager to do whatever they can to help me, and they want to help without making me feel like a burden. (I do enough of that to myself.)

As much as I hate to ask for help, I’ve learned over the years that I need to. We all do sometimes.

So, I prefer to Focus on where I’m Fortunate: Family, Friends, and the Flexibility to make this all Feasible for the Foreseeable Future. Definitely better F-words.

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.