The second presentation at the 2019 International Acromegaly Conference, held March 20-22 in New Orleans, was an illuminating and—judging by the number of questions asked by attendees—popular presentation on acromegaly and pain, presented by Dr. Angel Rigueras. Dr. Rigueras is a physiatrist, specializing in pain and pain management.

Pain is the physical, psychological, and spiritual reaction to an injury and has a tremendous impact on a person’s ability to function and their quality of life. Those of us with acromegaly are all too familiar with the pain caused by the bone growth and soft tissue swelling from the excess growth hormone and by the pressure of the tumour on structures within our heads.

Dr. Rigueras explained that acromegaly patients’ number one pain is headaches, generally caused by changes to the neck, jaw, and upper back. (Side note: did you know there are 400 different types of headaches?!) This is followed by arthritis and osteoarthritis, caused by joints changing—the unnatural shape causes the joint to stop working properly, thus causing pain. Carpal tunnel pain is also common. Adding to the problem is the prevalence of obstructive sleep apnea, which disrupts sleep, leading to a lower pain threshold.

So what is chronic pain? It’s defined as pain that has lasted for more than six months, generally having significant psychological and emotional effects and limiting a person’s ability to fully function. Dr. Rigueras stressed that a patient’s medication levels and condition must be closely monitored. If chronic pain is not treated with the proper medication, a patient may develop debilitating pain. If the medication is not increased or changed to reflect this, it may become impossible for the patient to be mobile, which could lead to the de-conditioning of muscle groups, repetitive testing, and perhaps psychological deterioration. Quick treatment is key to getting the pain under control and starting rehabilitation.

Some myths about chronic pain:

Myth: There is no standard of care to treat pain.

Fact: The World Health Organization has scoping documents for Guidelines on the Pharmacological Treatment of Persisting Pain in Adults with Medical Illnesses and Guidelines on the Pharmacological Treatment of Acute Pain. (Also, the Canadian Pain Society has a list of resources.)

Myth: Pain medication is addictive.

Fact: This has become a highly politicized topic, and the media has put a negative spin on pain medication and those who require it to sustain any sort of quality of life. People with chronic pain are not addicts. Their bodies depend on the medication to allow normal function. There is a difference between addiction and dependency. Patients being cared for by a pain specialist, the use of medication is very successful and does not result in addiction or withdrawal.

Myth: Patients just have to live with the pain.

Fact: Pain can be managed, and there are many options to help patients achieve a better quality of life.

Myth: All patients with pain have psychological issues.

Fact: Pain is real. It is not imagined, not attention seeking, not an excuse to escape responsibilities. But it can lead to mental health issues: about 80% of those with chronic pain suffer from depression, but this is a no-brainer—if you are in constant pain and unable to maintain your quality of life, you will likely become depressed.

If pain is impacting your quality of life, ask for help. The sooner it is looked into, the less damage it will cause. Some topics you may wish to discuss with your medical team include:

• prescription medication, including pills, ointments, and medicinal marijuana or CBD oil
• complementary treatments, such as turmeric and arnica
• acupuncture
• massage (though Dr. Rigueras cautioned against deep tissue massage, as it can release protein and cause achy, flu-like symptoms)
• exercise, such as tai chi
• pharmacogenic testing, which tests how quickly you metabolize medication
• neurostimulation, including spinal cord stimulation (SCS)
• bite guard
• CPAP machine

It can take a team to manage acromegaly: a primary care physician, endocrinologist, pain management specialist, rheumatologist, psychologist, rehab specialist, neurologist, physical/occupational therapist, nurse, dentist, and dietician. It is a complicated condition that needs the expertise of many. Don’t be afraid to ask for a referral if you feel your pain may be helped by someone with more specific expertise in the field.

Heather Elder
Vice-President, Acromegaly Ottawa