Introduction to Managing Pain

Introduction

Pain is a sensation that hurts. It is subjective, meaning that if you are having pain, you are the only one who can feel it and tell others about it. Only you can tell where it is, what it feels like, and if the treatment given for it has worked. Pain can make it hard for you to concentrate on anything except the pain. It can make it hard for you to sleep and hard for you to function when you are awake. It can be depressing, frustrating and overwhelming. However, it is possible to reduce pain and to learn to cope effectively with the pain that remains.

Understanding Types of Pain

People with limb loss experience many different types of pain. Understanding the type of pain you are experiencing and describing it clearly can help you and your healthcare team determine the most effective treatment for decreasing your pain. These terms include:

• Phantom limb sensation (PLS): This describes sensations that you might continue to feel in your amputated limb, even though it is no longer there. These sensations may include tingling, pins and needles, itching, temperature changes, pressure, abnormal position and movement. These sensations are not painful; therefore, no treatment is indicated.
• Residual limb pain (RLP): This is the pain that originates in the part of your limb that remains. It can be caused by swelling, nerve damage or irritation from your prosthesis.
• Phantom limb pain (PLP): When the phantom limb sensations are uncomfortable or hurt, they are called phantom limb pain.

In addition to these types of pain or sensation, there are the pains that you might have experienced before your surgery and the pain that you will experience during normal healing after your surgery.

There are different ways of helping you manage your pain, depending on which type it is. Again, knowing what kind of pain you are experiencing makes it easier for you and your healthcare team to manage that pain – so it doesn’t manage you!

Preparing to See Your Healthcare Provider

Here are the things you should do before going to see your healthcare provider about your pain or sensation.

1. Write down your symptoms. When are you experiencing pain? Is it when you are wearing your prosthesis? What were you doing when the pain started? How long does it last? What have you tried to decrease the pain? Does anything help? Keeping track of your symptoms with paper and pen works great. You can also use your computer or smartphone to help. Letstalkpain.info has a downloadable Pain Notebook that walks you through everything you should be keeping track of regarding your pain, as does the smartphone app, “My Pain Diary.” Whatever you use – paper, computer or smartphone – be sure to take your personal pain record with you to your appointment.

It cannot be emphasized enough how important it is to track your pain. Tracking will likely improve your understanding of your pain so that you will become more effective in coping, and it is a very important communication tool you can use to help your healthcare provider understand why and when your pain occurs.

2. Make a list of your key medical information. This includes any conditions that you have been diagnosed with by any of your healthcare providers and names of all the medications, vitamins and supplements you are taking. It is good practice to keep this list updated and to always bring it to every healthcare provider you see.

3. Take a family member or friend along. Don’t leave your companion in the waiting room! Have him or her in the exam room with you. Four ears are definitely better than two when it comes to hearing your healthcare provider!

4. Write down questions to ask. Things like: What are the treatment options? Is there anything besides medication? If medication is prescribed, ask how it works and what the side effects might be. Ask if there is a chance of addiction or dependency if you take it. You might also ask if you should see a specialist. And, be sure to ask if insurance covers it.

The Agency for Healthcare Research and Quality (AHRQ) has an easy-to-use, customized Question Builder that can help you come up with the list of questions you will want to ask your healthcare provider (https://www.ahrq.gov/questions/question-builder/online.html).

Next Steps

Once you understand the different kinds of pain you may experience after amputation and have prepared for your appointment with your healthcare provider, you are on your way to managing your pain. It may take some time and patience, but with you and your healthcare provider working together, you can find the treatment plan that will work for you!

About the Amputee Coalition

The Amputee Coalition is a donor-supported, nonprofit voluntary health organization serving the over 5.6 million people with limb loss and limb difference in the United States.

For more information, please call 888-267-5669 or visit 1a2c2025.com.

Acknowledgements

This project was supported, in part, by grant number 90LLRC0001-01-00, from the Administration for Community Living, U.S. Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.