I was just diagnosed with amyloidosis. I'm feeling overwhelmed. What do I do?

A diagnosis of amyloidosis — a condition that causes abnormal proteins to build up in your body tissues and organs — can be extremely challenging. You might feel disbelief, anger, fear, sadness or worry. All of these emotions may affect your sleep or your appetite. It may help you to do the following.

Ask questions

Write down all of your questions, and take them to your next appointment with your doctor. Ask your doctor for advice on how to best take care of your health. Understanding your diagnosis and treatment options may help you to feel more empowered.

Seek support

It's important to connect with others and build a support network that will be there for you. You may feel most comfortable discussing your feelings with a friend or family member. Also consider a formal support group, either online or in person.

Share your feelings and concerns with your doctor, too. In some cases, your doctor may refer you to a counselor or talk therapist for additional support.

Adjust your daily expectations

How you approach your day can affect your stress level and sense of control. When you feel stressed or helpless, it is easy to become fearful and anxious. To organize and do activities in ways that minimize stress and fear:

  • Plan and prioritize. Create a daily plan of tasks and goals you hope to accomplish. Having goals helps you feel in control and can give you a sense of purpose. Choose goals you can reach. Focus on what's most important.
  • Pace yourself. Work at a moderate pace and take breaks when needed.
  • Create balance. Avoid overdoing or underdoing. Aim for a healthy balance of work, self-care and leisure activities.
  • Avoid unhealthy routines. Try not to regularly work overtime or overdo it. Don't withdraw from activities and isolate yourself at home. But aim for moderation, and modify activities as needed to remain active and socially connected while managing symptoms.
  • Stay positive. It can be easy to view difficult circumstances as disasters and tell yourself, "This is way too much for me." Try to stay positive and approach them as challenges that can be managed. Instead, think, "I'm willing to give a new approach my best effort." It also may help to look for humor, even in tough situations.

It's normal to feel a variety of complex emotions after a diagnosis of amyloidosis. Although it's true that you can't change your circumstances, you can choose how you respond. You'll likely start to feel like you're coping better within a few weeks to several months. But if your feelings continue, be sure to tell your doctor.


Rajiv K. Pruthi, M.B.B.S.

May 01, 2019 See more Expert Answers