The ‘Invisible’ Symptoms of Acromegaly and How You Can Feel Better

While the most obvious signs of acromegaly are changes to your facial features and unusual growth in your hands and feet, it also has effects no one else can see.

“From a patient perspective, the joint pain can feel like accelerated aging, stiffness, swelling, and deep aching, especially in the knees, hips, and hands — any joint really,” says August. “It can limit mobility and make simple activities feel exhausting and painful.”

Getting treated for acromegaly is the most important starting point in managing joint pain, says Atil Kargi, MD, an endocrinologist specializing in acromegaly at UNC Health in Chapel Hill, North Carolina. Dr. Kargi also recommends physical therapy and standard pain medications like ibuprofen. But be sure to check with your healthcare provider before you try any new over-the-counter medication.

You may be able to reverse some joint changes if you can lower IGF-1 levels early in the course of the disease, says Dr. Balasubramanian. But if changes become permanent, you can ask about steroid or gel injections, she says. “In severe cases, joint replacement might be needed.”

Apart from medical treatments, August has found these tips have helped her and others with acromegaly joint pain:

• Gentle, consistent, non-weight-bearing movement, like cycling and stretching
• Strength training to support joints when possible
• Anti-inflammatory nutrition choices
• Listening to your body instead of pushing through pain

“Most importantly, I’d say: Don’t normalize the pain,” says August, who urges people with acromegaly joint pain to advocate for imaging, exploration, and treatment options.

Fatigue doesn’t mean “feeling tired.” It’s severe exhaustion, weakness, and trouble thinking that doesn’t go away, even after plenty of rest or sleep. In acromegaly, fatigue can be caused by:

• Inflammation
• Depression
• Disrupted sleep
• Blood vessel damage
• Weakened muscles

Kargi recommends a sleep study for almost all patients with acromegaly once their IGF-1 levels are controlled, to diagnose the condition and direct treatment.

• Ask about physical therapy to guide aerobic exercise, which can reduce fatigue.
• Consider trying cognitive behavioral therapy (CBT) with a licensed provider, which improves energy, sleep, and mood by retraining thought patterns.
• Practice mindfulness with deep breathing, walking, meditation, or yoga.

“Also, give yourself permission to rest,” says August.

• Pituitary gland tumor pushing against nerves in your brain
• Inflammation after surgical treatment
• Stretching of the outer layer of your brain
• Increased pressure in your brain
• Painful neck joints

Experts also think that high GH levels by themselves can cause headaches, partly because medications used to reduct them often improve the headaches, says Kargi. “But the exact mechanisms by which high GH causes headache are not entirely understood.”

“The management of the tumor will ease headaches,” says Balasubramanian, who recommends acetaminophen to her patients for temporary relief.

These tips help August deal with headaches:

• Stay hydrated.
• Track your headache triggers.
• Ask your doctor about pain management options.
• Work with your doctor to understand other possible underlying causes.

Because people with acromegaly have so many other symptoms, they may not feel like they have the time or energy to get help for sexual dysfunction, says Kargi. “However, there are many treatment options available, and I would recommend they seek medical advice for these issues.”

You can ask your endocrinologist about sexual symptoms. Most of these specialists have some experience with assessing reproductive hormones and sexual dysfunction, says Kargi. “Some patients may also benefit from seeing a urologist (for males) and a gynecologist (for women).”

If your symptoms are related to low hormone levels, your doctor may recommend hormone replacement with testosterone in men and estrogen or progesterone in women, says Balasubramanian.

August also suggests these tips:

• Talk openly with your doctor, remembering this is a medical condition, not a personal failure.
• Be patient with yourself and your body — it’s going through something complex.

• Brain structure changes
• High levels of growth hormones
• Decreased fluid around the brain and spinal cord
• Disruptions in brain-cell messaging pathways

Difficulty concentrating and memory lapses with acromegaly can have a real impact on daily life, says August. “Once you add in medications, sleep issues, and the stress of navigating this disease, the struggle with focus and spaciness can get worse.”

But your healthcare providers can help you. “Having a continued relationship with the endocrinologist and many other members of the healthcare team to continue to work on these symptoms will help,” says Kargi, who adds that many people may benefit from seeing a psychologist or therapist.

• Access to a quieter workspace
• Time off for appointments or treatment
• Ergonomic desk setups

Beyond the tools above, August recommends these tips to maximize your quality of life with acromegaly:

• Joining a community or an acromegaly support group, so you can connect with people experiencing the same journey
• Practicing self-compassion instead of self-judgment
• Reframing limitations into the question, “What CAN I do?”

“Mindset shift and linguistic framing can be life-changing,” says August.

• Acromegaly causes visible changes to your appearance, but sometimes the invisible symptoms of this disorder can feel even more life-changing.
• Silent symptoms of acromegaly include joint pain, fatigue, headaches, sexual dysfunction, and mental health challenges.
• You can manage these symptoms and improve your quality of life by working with your endocrinologist to treat acromegaly and its symptoms.