This is going to be a mouth full, but please bare with me...in short, has anyone had Idiopathic Subglottic Stenosis with the suggestion Relapsing Polychondritis could be the causing factor? Where (RP) is primarily attacking the larynx and ribcage/chest - (thought to be costochondritis) but potentially RP? BUT all blood test have come back clear, biopsy came back clear, x-rays show no inflammation and no systemic factors? BUT multiple other things going on with eyes, ears, joints?
This has been a two year journey. It all started with my breathing which lead me here. I've seen my GP, Lung Dr., ENT Dr. and most recently the Rheumatory Dr.
My Lung doctor strongly feels (RP) is caused the SGS and the ribcage/chest pains. My Rheumatory doctor is hesitant to make a diagnosis because my blood, biopsy and x-rays are fine and no systemic factors. She said she heavily relies on the blood and biopsy.
I've researched and learned that it is still as possibility to have (RP) an not exhibit the normal symptoms of the ears and saddle nose while having a clean test results.
Initially my Dr. thought it might be long covid, combined with Costochondritis in addition to issues that needed to be looked into further to figure out the breathing issue etc.
Eyes - I use to have psoriasis on my eyes for many years. (I used to get psoriasis on my inner elbows, behind my knees, on the back of my head but haven’t had it in many years now). Now at times they are blurry or fuzzy and light sensitive. It won’t matter if I have new contacts, old contacts, glasses, no glasses, readers over top of my contact. I just have to wait for it to pass. Some days my vision is good and other days it’s fuzzy.
Sometimes they swell and get itchy. My skin will go red, and I get dry flakes on the lower lid, almost like psoriasis again but not to the extent they use to get.
A few times I would wake up and I can't see. It's like looking through a cheesecloth. It takes a few mins before it clears up. I've been to the optometrist, but they said my eyes are fine.
Ears – I always hear ringing or static more often than not. The only time I notice I have it is when it's gone, because then it's quiet in my head. If that makes sense. My ears get sore inside, like earaches. Allergy medicine doesn’t work. Sometimes it feels like they are plugged, and it feels like it’s hard to hear. Sometimes they get sore on the inside outer part of my ear.
Face - suddenly, mid last year the blood vessels in my face, in my cheeks started to be very prominent. It could be age. I started to get a vascular laser that makes it go away. Sometimes it is almost like a rash on my cheeks.
Costochondritis - in my rib cage / sternum. Sharp pain in the breastbone making it difficult breathe in. The pain would last for minutes up to an hour, multiple times a day and for any months, every single day. It would feel like muscle tearing or digging something sharp into the area.
• Chest - pressure, tightening in my chest, sometimes sharp pain. It would also feel like heart palpitations or fluttering but all my blood work says everything is fine.
Costochondritis pains stopped for a few months maybe longer, and then my larynx felt like it really ramped up and my breathing got worse.
• Shortness of breath, felt like breathing through a straw, got worse with exercise or strenuous activity like climbing hills, coughing a lot, striders etc....only later to find out it was ISGS
• I have what feels like costochondritis pains, every so often now, not as bad as it was before. Sometimes they are in my sternum or higher up in my chest
Breathing problems – Diagnosed with Idiopathic Subglottic stenosis almost 2 years later – I had surgery on April 4, 2025. Endoscopic laser with dilation and steroids. Dr. Randall also took a biopsy. At the time he scoped me in March, my trachea/larynx was still inflamed in addition to the stenosis. Breathing for the first two weeks was amazing but I’m starting to feel small signs the stenosis is already growing back.
Voice Box - Muscle Tension Dysphonia – For my raspy, hoarse voice. Probably from all the coughing over the number of years. The Therapist gave me exercise to do.
Joints
• Elbows: when it gets bad, I can't bend them well. They hurt a lot and it's physically hard to bend them. My left elbow is worse. They get puffy and feel like they are swollen.
• Knee: My kneecaps get stiff, and sore a lot. At times, I can't bend my knee right away. My work-out has altered because I can't do certain exercises. It puts too much stress and pressure on my knees. Sometimes they throb for no reason at all.
• Wrists - at times they get sore and ache.
• Feet - sometimes my toe joints will ache. Bunion aches but I think that's normal. My feet cramp a lot.
• Lower back - left side gets really sore and is very painful. It’s almost like when you tweak or pulled something, but I haven't done anything.
Nose - it gets sore inside. Sometimes it’s sore with no cold sore ever surfacing and other times it’s sore and I get cold sores inside my nose. I do have a lot of congestion a lot of times. I probably blow my nose every other day.
I feel like outside of my subglottic stenosis, something else is going on. In addition to all the above, my body feels run down, tired, exhausted a lot of time when there is no reason too, unless this is all what is making me feel that way.
I eat well, I exercise, I’m active, I don’t smoke, I drink occasionally. I don’t overexert myself. I especially feel this way when these flares-ups start to happen. It’s kind of like a jet lag feeling and all I want to do is lay down and rest or sleep.
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This is going to be a mouth full, but please bare with me...in short, has anyone had Idiopathic Subglottic Stenosis with the suggestion Relapsing Polychondritis could be the causing factor? Where (RP) is primarily attacking the larynx and ribcage/chest - (thought to be costochondritis) but potentially RP? BUT all blood test have come back clear, biopsy came back clear, x-rays show no inflammation and no systemic factors? BUT multiple other things going on with eyes, ears, joints?
This has been a two year journey. It all started with my breathing which lead me here. I've seen my GP, Lung Dr., ENT Dr. and most recently the Rheumatory Dr.
My Lung doctor strongly feels (RP) is caused the SGS and the ribcage/chest pains. My Rheumatory doctor is hesitant to make a diagnosis because my blood, biopsy and x-rays are fine and no systemic factors. She said she heavily relies on the blood and biopsy.
I've researched and learned that it is still as possibility to have (RP) an not exhibit the normal symptoms of the ears and saddle nose while having a clean test results.
Initially my Dr. thought it might be long covid, combined with Costochondritis in addition to issues that needed to be looked into further to figure out the breathing issue etc.
Eyes - I use to have psoriasis on my eyes for many years. (I used to get psoriasis on my inner elbows, behind my knees, on the back of my head but haven’t had it in many years now). Now at times they are blurry or fuzzy and light sensitive. It won’t matter if I have new contacts, old contacts, glasses, no glasses, readers over top of my contact. I just have to wait for it to pass. Some days my vision is good and other days it’s fuzzy.
Sometimes they swell and get itchy. My skin will go red, and I get dry flakes on the lower lid, almost like psoriasis again but not to the extent they use to get.
A few times I would wake up and I can't see. It's like looking through a cheesecloth. It takes a few mins before it clears up. I've been to the optometrist, but they said my eyes are fine.
Ears – I always hear ringing or static more often than not. The only time I notice I have it is when it's gone, because then it's quiet in my head. If that makes sense. My ears get sore inside, like earaches. Allergy medicine doesn’t work. Sometimes it feels like they are plugged, and it feels like it’s hard to hear. Sometimes they get sore on the inside outer part of my ear.
Face - suddenly, mid last year the blood vessels in my face, in my cheeks started to be very prominent. It could be age. I started to get a vascular laser that makes it go away. Sometimes it is almost like a rash on my cheeks.
Costochondritis - in my rib cage / sternum. Sharp pain in the breastbone making it difficult breathe in. The pain would last for minutes up to an hour, multiple times a day and for any months, every single day. It would feel like muscle tearing or digging something sharp into the area.
• Chest - pressure, tightening in my chest, sometimes sharp pain. It would also feel like heart palpitations or fluttering but all my blood work says everything is fine.
Costochondritis pains stopped for a few months maybe longer, and then my larynx felt like it really ramped up and my breathing got worse.
• Shortness of breath, felt like breathing through a straw, got worse with exercise or strenuous activity like climbing hills, coughing a lot, striders etc....only later to find out it was ISGS
• I have what feels like costochondritis pains, every so often now, not as bad as it was before. Sometimes they are in my sternum or higher up in my chest
Breathing problems – Diagnosed with Idiopathic Subglottic stenosis almost 2 years later – I had surgery on April 4, 2025. Endoscopic laser with dilation and steroids. Dr. Randall also took a biopsy. At the time he scoped me in March, my trachea/larynx was still inflamed in addition to the stenosis. Breathing for the first two weeks was amazing but I’m starting to feel small signs the stenosis is already growing back.
Voice Box - Muscle Tension Dysphonia – For my raspy, hoarse voice. Probably from all the coughing over the number of years. The Therapist gave me exercise to do.
Joints
• Elbows: when it gets bad, I can't bend them well. They hurt a lot and it's physically hard to bend them. My left elbow is worse. They get puffy and feel like they are swollen.
• Knee: My kneecaps get stiff, and sore a lot. At times, I can't bend my knee right away. My work-out has altered because I can't do certain exercises. It puts too much stress and pressure on my knees. Sometimes they throb for no reason at all.
• Wrists - at times they get sore and ache.
• Feet - sometimes my toe joints will ache. Bunion aches but I think that's normal. My feet cramp a lot.
• Lower back - left side gets really sore and is very painful. It’s almost like when you tweak or pulled something, but I haven't done anything.
Nose - it gets sore inside. Sometimes it’s sore with no cold sore ever surfacing and other times it’s sore and I get cold sores inside my nose. I do have a lot of congestion a lot of times. I probably blow my nose every other day.
I feel like outside of my subglottic stenosis, something else is going on. In addition to all the above, my body feels run down, tired, exhausted a lot of time when there is no reason too, unless this is all what is making me feel that way.
I eat well, I exercise, I’m active, I don’t smoke, I drink occasionally. I don’t overexert myself. I especially feel this way when these flares-ups start to happen. It’s kind of like a jet lag feeling and all I want to do is lay down and rest or sleep.
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