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

🦋 Kerry Wong avatar

by 🦋 Kerry Wong |

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X-ray of fracture / Sarcoidosis News Today

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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.

X-ray of Kerry's right foot, with fracture to fifth metatarsal circled

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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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.

***

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.

Comments

Maureen Butler avatar

Maureen Butler

Hello, so glad 😊you have a pleasant outlook on the things that happens due to your sarcoidosis. Glad I decided to read what you are dealing with. I too,,, have started having the lightheaded experience. Without notice. Every so often. I get up to do something. And have to hold on to the wall or anything I can get my hands on. Terrible feeling. It also makes me feel nauseous. I have had sarcoidosis for forty seven years. Lately, other things are happening to my body. Have had both hips replaced and both knees. Absolutely no energy!!! I suffer pain every day. Can't get rid of it. I continue to do for myself. But the lack of energy. To a person like me. Is the worst 😫. Because I have never taken anything for the sarcoidosis. After reading about your situation. I'm now wondering if im now going through the same thing. Even wondering if the sarcoidosis has caused 🤔all the arthritis im suffering. Throughout my body. Always have been a doer. Don't really ask for help. I'm beginning to feel very tired now. Maybe it's time to ask questions. Oh by the way. Broke my left foot lifting a very heavy object. Two weeks later. My neighbor talked me into going to the hospital. Glad I did. I was admitted. Because of bad infection. Never took any steroids. I believe the problem with all im going through right now. May be due to the sarcoidosis. I don't know where to start. Do you have any suggestions?? Thanks for letting me discuss my problems. Would appreciate any feedback you may have. Hope you continue to keep the positive way of thinking and doing.

Reply
🦋 Kerry Wong avatar

🦋 Kerry Wong

Wow, Maureen, there's so much going on there - and so much that is very similar. It's definitely hard to manage all the different symptoms, and hard to know where to begin (or to begin at all). If your joints are your biggest problem (along with the fatigue), I would suggest starting with a good rheumatologist who is familiar with sarcoidosis. They may be hard to find, but they are worth it. Good luck!
~🦋

Reply
DebbraP avatar

DebbraP

Kerry, I am sorry about your fracture. None of us need more pain. I look forward to reading your column. Thank you for sharing your journey and what you learn along the way. I was diagnosed with Pulmonary Sarc 2019 (biopsy) and am on Prednisone and Methotrexate, in addition to several other meds. I am only 57. As much as I hate the Prednisone I am glad that it helps me breathe. I am also on oxygen 24/7. I can relate to the "not being able to drive"....my husband passed away last month and he was my caregiver. I no longer have a car or friends/family here to help, which is why I am having to move in with a brother and his family in another state. Life is completely changing on me -again. So, I like to read about other's journey fighting this beast called "Sarcoidosis" and what they experience and learn to do/not do. It also helps to be inspired and motivated -and that's what I get from reading your articles and background. Thank you!

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🦋 Kerry Wong avatar

🦋 Kerry Wong

Oh Debbra, I'm so sorry for your loss - that would be awful enough to deal with just as your partner; I can only imagine how much worse with the added level of him being your caregiver as well. I'm glad you've got plan b in the works, and wish you much luck with that. And we will continue to fight that beast!
~🦋

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Paul Louis Varadi avatar

Paul Louis Varadi

Thanks for the great article! I appreciate your effort to share your experiences.

Reply
🦋 Kerry Wong avatar

🦋 Kerry Wong

Thank you Paul! Glad you're floating along with me!
~🦋

Reply
Yolanda Hughes avatar

Yolanda Hughes

I was diagnosed at the age of 10, I am now 50 and I have dealt with so much pain and other things but I thank God everyday.
I also have other auto immune problems but I just wanted to thank you for being so dedicated.

Reply
🦋 Kerry Wong avatar

🦋 Kerry Wong

Thank you for reading - and for sharing, Yolanda. Must have been so challenging to deal with this as a child (not that it's easy now) ... but the good news is you're not alone in the journey.
~🦋

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John Carlin avatar

John Carlin

Thanks, Kerry! You've pointed out a symptom I've experienced many times. Didn't know it was sarc-related. I'll be looking into it!

Reply
🦋 Kerry Wong avatar

🦋 Kerry Wong

Hey, John! Yes, there's so much we'd never think to connect to sarc, and then again, there are things we might automatically assume are sarc but aren't (just to make it more fun to figure out). It's always good to have those conversations with our doctors, but so many times they start with our fellow sarc warriors - we learn so much from each other!
🦋

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Lisa Arama-Davis avatar

Lisa Arama-Davis

Perfectly described.

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🦋 Kerry Wong avatar

🦋 Kerry Wong

💜💜

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