While angina (chest pain) is a common symptom of pulmonary hypertension (PH), people with this condition may experience other types of discomfort and significant pain throughout their body. Understanding these different pain manifestations and knowing when to seek medical attention is crucial for managing PH effectively.

If you’re experiencing pain from pulmonary hypertension, it’s important to understand why that pain is occurring and what other people have done to alleviate it. If you experience chest pain with PH, talk to your doctor. Your healthcare provider is your best resource when it comes to relieving and managing your symptoms of pulmonary hypertension.

What Does Pulmonary Hypertension Pain Feel Like?

Many myPHteam members experience different types of pain with PH or pulmonary arterial hypertension (PAH). While chest pain is common, some members report other pain symptoms. As one explained, “I have lots of pain, especially chest pain, when I bend over and my oxygen levels drop. My elbows and hips hurt a lot. I can never get comfortable when I lie down. I try not to complain about the pain, just the shortness of breath.”

Another added, “Wow, I never thought my joint pain could be a result of PH! I also experience chest pain, but I think it’s the fear that comes when I’m really struggling hard to catch my breath.”

Others find that their pain is worse at certain times of the day or after certain activities. One member described how their pain changes: “I sometimes have pain on both sides of my body underneath my breastplate that radiates to my back. The pain is really bad when I get out of bed in the morning or when I’m getting up from a seated position.”

Another member explained, “I have sharp shooting pain in my head, neck, back, and thighs when my blood pressure drops below 120 after moving around.”

“I have to listen to my body more and realize that I’m not able to wash clothes, clean, cook, dance, and work eight hours a day anymore. Although I’ve cut these things out, my pain still wins,” wrote one member. Another added, “I know how you feel because in the morning, I feel so sick. My bones hurt so bad — my back, my hips, my whole body — so I know what you’re going through. Hang in there.”

Pain related to pulmonary hypertension can range from annoying or uncomfortable to severe and debilitating. One member wrote, “The chest pain and bad feeling in the chest are the most distracting.”

What Causes Pain in Pulmonary Hypertension?

Pulmonary hypertension occurs when there’s high blood pressure in the blood vessels between the right side of the heart and the lungs. When this pressure is caused by narrow pulmonary arteries, it’s called pulmonary arterial hypertension (PAH).

This means that the heart has to work harder than usual to get enough blood flow to the lungs, where the blood picks up oxygen to carry to the rest of the body. The narrowed blood vessels and excess strain on the heart can cause chest pain and may eventually lead to heart failure.

Several factors can cause pulmonary hypertension. Your doctor or cardiologist can help determine what is causing your pulmonary hypertension and work with you to help keep it under control and manage your symptoms such as pain.

Some risk factors and known causes of PH include:

• Family history of PH or blood clots
• Lung diseases, such as pulmonary fibrosis (scarring in the lungs), chronic obstructive pulmonary disease (COPD), emphysema, interstitial lung disease, or pulmonary emboli (blood clots in the lungs)
• Congenital heart disease
• Heart failure
• Connective tissue disease, such as lupus or scleroderma
• Sleep apnea
• Liver problems, such as cirrhosis
• HIV infection
• Kidney disease
• Metabolic disorders
• Illegal drug use, particularly use of methamphetamine
• Sarcoidosis (a rare condition that causes granulomas, small patches of discolored and swollen tissue, to develop in the organs of the body)

People with PH may sometimes experience muscle and joint pain because of low oxygen levels in their blood and higher inflammation in their bodies, or as a side effect of a class of drugs called prostacyclins. The pain often occurs in the lower back, knees, shoulders, and neck, but it can also happen in other areas of the body.

Less frequently, people diagnosed with pulmonary hypertension may experience pain in the upper right part of the abdomen. This kind of pain usually results from problems with the liver. Right-sided heart failure and reduced heart function caused by PH can damage the liver, leading to pain in the upper right abdomen. Liver disease is also a known cause of PH, so you may experience this abdominal pain before being diagnosed with PH.

When Should You Go to the Hospital for Pulmonary Hypertension?

While some pain with PH is expected, certain symptoms require immediate medical attention. Seek emergency care right away if you experience:

• Severe, sudden chest pain or headache
• Ongoing shortness of breath
• Fainting or severe dizziness
• Rapid, irregular heartbeat
• Unexpected weakness in your legs or arms

Managing Pain With Pulmonary Hypertension

Management and treatment options for PH-related pain have expanded in recent years. The following are the most common ways of managing pain with pulmonary hypertension.

Treat Pulmonary Hypertension

Managing symptoms like pain often begins with treating the underlying medical condition. What treatments are appropriate for your pulmonary hypertension will depend on the condition’s unique cause.

Some current treatment options include:

• Vasodilators — Medications that dilate (widen) the blood vessels by relaxing them
• Blood thinners, also called anticoagulants — Medications that prevent blood clots
• Diuretics, also known as water pills — Medications that reduce excess fluid buildup
• Activin signaling inhibitors — Newer medications that help stop blood vessels from getting too thick and stiff, making it easier for blood to flow with PAH
• Combination therapy approaches — Using multiple medications together for better results

Though treating PH with proper medications is the most important, there are also drugs that improve your quality of life by treating pain, even though they do not treat the causes of PH.

Every pain relief drug has its upsides and downsides, so talk to your doctor about what’s best for you. Options include acetaminophen (Tylenol) and nonsteroidal anti-inflammatory drugs like ibuprofen (Advil, Motrin). Sometimes, when the pain does not stop, doctors may prescribe stronger drugs.

Work with your doctor to determine which medication options might be best for you. Treatment plans are often individualized, and it may take time to find the right combinations of medications.

Other ways of managing PH include the following lifestyle changes.

Don’t Smoke

If you don’t smoke, don’t start. If you do smoke, make a plan to quit. Your doctor can help you quit effectively.

Avoid High Altitudes

Be cautious about high altitudes, which can lead to hypoxia (oxygen deficiency). Consider your PH before you make any travel plans, and bring supplemental oxygen if you think you might need it.

Avoid Activities That Lower Blood Pressure

Sitting in saunas or hot tubs and taking long, hot showers or baths can lower blood pressure to dangerous levels in people with PH.

Eat a Healthy Diet

People with PH need to eat a heart-healthy diet, including eating plenty of fresh fruits and vegetables, limiting portion sizes, and avoiding unhealthy fats. You can work with a registered dietitian to determine the best diet for you.

Track Your Weight

Rapid weight gain may mean that your PH is becoming worse. Watch your weight carefully and mention any drastic changes to your doctor.

Try Pulmonary Rehabilitation

Pulmonary rehabilitation is a program in which professionals design exercises or other physical activities to help improve your breathing and overall quality of life. These programs are designed with the specifics of your PH (such as its cause) in mind. Pulmonary rehabilitation may also include an education component to help you modify your lifestyle in a way that will alleviate symptoms like pain.

Many of our members have participated in these programs and found them beneficial. One wrote, “I did pulmonary rehab, and it helped me tremendously. … This time last year, I was unable to go to the bathroom without sitting down twice before getting there because I couldn’t breathe. I can stand up for a shower now.”

Another explained, “I have pulmonary arterial hypertension, and I was going to pulmonary rehab, which worked for me like a charm.”

Take Deep Breaths

Making sure that your body is taking in enough oxygen can help alleviate some pain, like chest pain, according to some members. As one shared, “Someone on this forum suggested taking slow deep breaths, and that seemed to help decrease the pain. Thanks for the suggestion.”

“I found breathing exercises very helpful. Consistent deep, slow breaths. Physical therapy can also be great at teaching how to capture our breath back,” added a member.

Find Your Team Today

By joining myPHteam, the social network for people with pulmonary hypertension, you can ask questions, share advice, and connect with more than 56,000 members who understand life with pulmonary hypertension.

Do you struggle with chest pain associated with pulmonary hypertension? Share your thoughts in the comments below or start a conversation on your Activities page.