Pulmonology

Recognizing Symptoms and Warning Signs

At a Glance

The most common early symptom of LAM is shortness of breath during physical exertion. Patients must also watch for severe complications like a collapsed lung, which causes sudden chest pain, and benign kidney tumors that can cause intense lower back or abdominal pain.

Because LAM is so rare, its symptoms are frequently mistaken for much more common conditions ^[1]. Understanding how LAM uniquely affects the body can help you partner with your medical team to recognize early warning signs and distinguish them from other issues. If you are newly diagnosed, we recommend starting with our overview on What is LAM?.

Common Early Symptoms

The most frequent symptom of LAM is dyspnea, or shortness of breath ^[2]. Many women first notice they are winded during activities that used to be easy, such as climbing stairs or exercising ^[3]. This occurs because the lung cysts make it harder for the lungs to expand and transfer oxygen ^[4]. Other common signs include:

Chest Pain: A persistent ache or sharp pain in the chest area ^[3]^[5].
Chronic Cough: Sometimes accompanied by a small amount of blood (hemoptysis) ^[6].
Fatigue: A general sense of exhaustion that isn’t always tied to physical exertion ^[7].

Major Complications: The “Thoraxes”

Two specific complications often lead to a LAM diagnosis. They can be frightening, but they are well-understood by LAM specialists.

Spontaneous Pneumothorax (Collapsed Lung)

A pneumothorax occurs when one of the cysts (bubbles) on the surface of the lung ruptures, allowing air to escape into the space between the lung and the chest wall ^[8]. This pressure causes the lung to partially or fully collapse.

What it feels like: A sudden, sharp, stabbing pain on one side of the chest that gets worse when you take a breath, often followed by immediate shortness of breath ^[9]^[5].
Preventing Recurrence (Pleurodesis): Unlike the general population, the rate of recurrent lung collapse in LAM patients is exceptionally high (often over 70%). Because of this, medical guidelines recommend that LAM patients undergo a preventive procedure called pleurodesis after their first pneumothorax ^[8]. This procedure adheres the lung to the chest wall to stop future collapses.
Barotrauma Warning (Air Travel and Scuba Diving): Because of the lung cysts, LAM patients are at an elevated risk of a lung collapsing when exposed to rapid air pressure changes. Scuba diving is absolutely contraindicated (forbidden) for LAM patients due to the extreme pressure changes ^[8]. Additionally, you should always consult your pulmonologist for medical clearance before participating in commercial air travel.

Chylothorax (Milky Fluid Buildup)

A chylothorax is a buildup of chyle—a milky, fat-rich fluid from the lymphatic system—in the space around the lungs ^[10]. This happens because the abnormal LAM cells can block or damage the lymphatic vessels ^[6].

What it feels like: A heavy, full sensation in the chest and a gradual increase in shortness of breath as the fluid takes up space meant for the lungs to expand ^[11].

Signs Outside the Lungs

LAM is a systemic disease, meaning it can affect parts of the body other than the lungs.

Renal Angiomyolipomas (AMLs): These are benign (non-cancerous) tumors made of fat, muscle, and blood vessels that grow on the kidneys ^[12]. While they aren’t cancer, they can grow large enough to cause pain or, in rare cases, bleed ^[13].
Lymphatic Swelling: You may experience swelling in the abdomen or legs, or develop fluid-filled masses called lymphangioleiomyomas in the belly or pelvis ^[14]^[15].

Why Misdiagnosis is Common

It is very common for LAM to be misdiagnosed for years as asthma, COPD, or emphysema ^[1]^[16]. This happens because:

Shared Symptoms: All these conditions cause shortness of breath and wheezing ^[2].
Cystic Appearance: On a standard X-ray, the cysts in LAM can look like the lung damage seen in emphysema ^[17].
Inhaler Response: Some women with LAM may feel slightly better after using an asthma inhaler, which can temporarily mask the underlying cause ^[18].

Symptom	What it feels like	Potential Significance
Dyspnea	“Air hunger” or windedness during exertion	Primary sign of lung cyst progression ^[2]
Sudden Sharp Pain	“Knife-like” sensation in the chest	Possible collapsed lung (Pneumothorax) ^[5]
Flank/Back Pain	Ache or sharp pain in the lower back area	Possible kidney growth (Angiomyolipoma) ^[12]
Abdominal Fullness	Bloating or a “heavy” feeling in the belly	Possible lymphatic fluid buildup (Chyloperitoneum) ^[6]

Red Flags: When to Seek Immediate Help

You should seek emergency medical attention if you experience:

Sudden, severe chest pain ^[9].
A rapid increase in shortness of breath that does not improve with rest ^[19].
Sudden, intense pain in your abdomen or lower back (flank), which could indicate a bleeding kidney tumor ^[13].
Coughing up significant amounts of blood ^[6].

Common questions in this guide

What are the early signs of LAM?

The most common early symptom of LAM is shortness of breath, especially during activities that used to be easy. Other early signs can include persistent chest pain, chronic cough, and unusual fatigue.

Why is LAM so commonly misdiagnosed as asthma?

LAM shares symptoms like shortness of breath and wheezing with asthma and COPD. Additionally, standard X-rays of LAM lung cysts can look like other lung conditions, and some patients temporarily feel better using asthma inhalers, masking the true cause.

What does a collapsed lung feel like with LAM?

A collapsed lung, or pneumothorax, typically feels like a sudden, sharp, stabbing pain on one side of your chest. This pain usually gets worse when you take a breath and is often followed immediately by severe shortness of breath.

Can I safely travel by airplane if I have LAM?

Air travel increases the risk of a collapsed lung due to rapid air pressure changes affecting the cysts in your lungs. You should always consult your pulmonologist for specific medical clearance before flying on a commercial airline.

What are the warning signs of kidney tumors in LAM?

Sudden or intense pain in your lower back, flank, or abdomen can be a warning sign of a bleeding kidney tumor known as a renal angiomyolipoma. You should seek immediate emergency medical attention if you experience these symptoms.

Curated prompts to bring to your next appointment.

1.Could my history of sudden chest pain have been a small, undiagnosed pneumothorax?
2.Should I have an abdominal MRI or ultrasound to check for renal angiomyolipomas?
3.Is the 'milky' fluid or cough I’m experiencing a sign of chylothorax?
4.Since I haven't responded well to asthma inhalers, can we review my CT scans for cysts specifically?
5.What is the plan if I experience a sudden 'red flag' symptom after hours?
6.Am I safe to travel by airplane, and what precautions should I take?

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References (19)

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This page provides information on LAM symptoms and complications for educational purposes only. Always consult your pulmonologist or seek emergency care for severe chest pain or sudden shortness of breath.

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