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8 Articles in Volume 16, Issue #3
CDC Issues Final Guidelines for Opioid Prescribing: PPM Editorial Board Responds
Don't Flinch From Prescribing Pain Medications!
Help Patients Achieve Diet/Weight Goals to Manage Pain
Hormone Testing and Replacement: Status Report 2016
Living With, and Managing, Chronic Pain: A Patient’s Story
Nerve Decompression Surgery Can Reverse Neuropathy of the Foot
Pulsed Electromagnetic Field Therapy: Innovative Treatment for Diabetic Neuropathy
Specialized Pharmacies Step Into Risk-Management Role

Living With, and Managing, Chronic Pain: A Patient’s Story

When a patient is living with chronic pain, they don't necessarily look sick. They may be putting on a brave face, but really hurting inside. Learn how one patient learned to live a full life despite chronic pain.

 

Distractions and a change of scenery are great coping tools when you are in chronic pain.

As a psychiatrist, I (SW) work with patients who have chronic pain to help them understand it, to reduce their pain levels as much as possible, and to live a full life, despite pain. It is a complex undertaking for patients, and one that takes a good deal of time to figure out.

I recently gave a presentation to a religious group that was interested in learning how to help their members who had chronic pain. In addition to my talk, I thought it would be helpful for them to hear directly from someone who has worked extremely hard to manage chronic pain and live well despite it. Her part of the talk went so well that I asked if she could write up her remarks to share with the pain community. They are presented here.

My hope is that this article can be used to help other patients who live with chronic pain learn to manage their symptoms and enjoy life despite pain. Having models can help other patients not have to “reinvent the wheel.” I would invite all healthcare providers who work with patients with chronic pain to reprint this article to be able to hand it out to your patients.

I hope that my sharing this information, will make it easier for others to cope with this disease.

 

Meet Beth Thorp

I am a 59 year-old woman who has had chronic pain for about 18 years. In the beginning I had left-sided sciatica, and now my pain has expanded to my low back, neck, arms, and various other parts of my body. In this article, I will be covering 3 topics:

  • My “Coping Plan”—or how I manage my pain beyond the use of medication
  • Some of the challenges I’ve faced in managing my pain and how I address those challenges
  • How family and friends can help those with chronic pain

My Coping Plan

While medication is a necessary and core tool for me in the management of chronic pain, I believe that it’s really important to have a variety of other tools to use. Many people use complementary medicine such as acupuncture, therapeutic massage, Reiki (or a practice of hands-on therapy), and other such approaches. But I’d like to focus on
5 main lifestyle forms of pain management that work well for me.

1. Movement and Exercise

This is probably my most important coping tool for a variety of reasons. Exercise helps in several ways, both physically and mentally. In my early adult years, I was very active, participating in ice dancing, skiing, and roller blading. Because of the pain, my exercise now involves mostly just walking and low-impact aerobics.

Even if I’m in pain, movement can help me to feel better. Physically, it loosens my joints, keeps me limber, and helps me to stay in shape. Mentally, it takes my mind off the pain, and it provides me with social interaction if I exercise with friends or in a class. If I’m in too much pain to really exercise, just changing positions—from sitting to standing, or standing to lying down—can help reduce my pain.

2. Change of Scenery

Even if I’m not really feeling up to it, getting out of the house, getting fresh air, walking around the block, doing an errand—anything that takes me into a different environment can help reduce my pain.

3. Distraction

This is a tool I adopted almost by mistake—or trial and error really. It can involve any activity that keeps my mind off the pain, such as reading, watching TV, knitting, simple tasks like coloring books, etc. I used to feel guilty about how much TV I watched until I realized how effectively it reduces my focus on pain. Distraction may not actually reduce my pain; it just takes me into a different world, thus away from my pain. This may, in fact, be one of the best tools I have.

4. Support Groups

About 2 years ago, I joined a support group for patients with chronic pain. The group is run by a psychiatrist who specializes in treating patients with chronic pain. Until I joined this group, I didn’t realize how helpful it would be to spend time with others like me. It’s extremely helpful to know that I’m not the only one with chronic pain. It’s a relief to be able to talk with others who “get it”—who know what I’m going through. Sharing stories, ideas, concerns, frustrations, and hearing the same from others is wonderful!

5. Don’t Over-Do

I have learned that I need to be realistic about my capabilities. It’s critical that I don’t over-do. It’s important for me to limit my activity every day, even on “good” days, or I’ll pay for it later with higher pain levels. I usually try to schedule no more than 1 or 2 activities per day.

For example, I might attend an exercise class in the morning, and then have lunch with a friend. Or I might run errands in the morning, and go out to dinner with my husband in the evening. Even if I’m not having a “bad” day, I must rest in the afternoon—read in bed, meditate, or take a nap. If I don’t take the time to rest my body and my mind every day, my pain will flare up.

Chronic pain is variable, so having a range of tools to use in managing it is critical in successfully living with chronic pain. While I’m in pain every day, it’s not every minute or even every hour. So I need to use the tools in my tool box that will be most appropriate to the day, the hour or the minute to make myself as comfortable as possible.

The Challenges of Living With Chronic Pain

As with any chronic illness, chronic pain brings a set of challenges. In this section, I’ll review the biggest challenges I’ve encountered with this condition, and then describe some suggestions I’ve uncovered to address them.

People Don’t Understand

I think the most difficult part of having chronic pain is that most people don’t understand it. There’s a large difference between acute pain, which everyone has experienced, and chronic pain. Chronic pain is not just acute pain that lasts a long time. And because I look well much of the time, people don’t understand that I’m in pain. And if I’m not in pain at the moment, I could be any second. It can come on very suddenly.

Although I don’t want to talk about pain all the time, I do think it’s helpful for the people with whom I spend a lot of time to understand chronic pain and some of its complexity. To understand that I’m not just a ‘baby’ with a low tolerance for pain or that I’m just not coping well. To understand that just because someone else had back surgery, for example, and is now fine, doesn’t mean that I should also be fine.

The Desire to be Normal

Something that I think anybody with a chronic illness struggles with is the desire to be normal. I want to keep up with everybody else, especially if I’m not in pain at the moment. However, if I take on too much, or over-do activities, I’ll pay for it later.

  • Setting Priorities. What I’ve learned is that I need to decide how important an activity is. I ask myself, “Is this activity, event or function worth the high likelihood that I’ll have much more pain later?“ Sometimes the answer is ”yes!” If the grandkids are visiting for only a few days and they want us all to go out on the boat—well, I might just do that! In contrast, if we have guests staying for 2 weeks, I won’t try to go along on every outing. I can’t do everything, so it’s important that I choose wisely.
  • Asking for Help. One of the hardest things for me to accept is that I need to ask for help. Because I have limitations, I must accept assistance from other people even when a person without pain would not need it. Trying to do things that I really can’t will cause problems later that day or evening, even simple things like standing too long at a party. I must remember to use the tools I have to keep healthy.
  • Accepting Special Help. Several years ago, after much encouragement from my doctor, I bought a wheelchair. I absolutely did not want to be that gal being pushed around in a chair, so this was a very difficult decision for me. But it’s been such a great buy! It gives me a known, comfortable, portable chair, and I take it with me almost everywhere I go. I usually don’t use it for transportation, but just for sitting. Do people stare at me? Do people ask me why I have it? Do people think I don’t need it? Yes to all those questions. But I’ve learned not to care; it has been invaluable to me.

Coping With Depression

One of the side effects of having chronic pain, as with any long-term illness, can be depression. Although I’m fairly upbeat most of the time, I definitely struggle with unhappiness—if not real depression—on occasion. As does the pain itself, my mood fluctuates. If I allow myself to look into the future and acknowledge that I’m going to have pain for the rest of my life, I’ll really fall into a downward cycle.

Stay in the day. I try hard not to focus too far into the future, but instead think about all the real blessings I have in my life right now. It’s helpful to follow the Alcoholics Anonymous philosophy of one day at a time. And sometimes it’s one hour at a time, or even one minute at a time. I tell myself, “I just have to get through this one pain flare-up and then things will be better.” While the door to skating and skiing is now closed, the one to arts and crafts has opened up wide!

The Greatest Challenge

The final challenge, and probably the one I dislike the most, is when I take it out on my loved ones. I really mean it when I say, “God bless all of the spouses, partners, and close friends of those of us with chronic pain.”

I am so lucky to have my best friend as my husband. He has been through the ups and downs of this disease with me for the full 18 years. There have been times when I’ve been unable to do any household duties, sometimes for several months. Without a complaint, my dear husband picked it all up. And yet, there are times when the pain is so bad that he can get the brunt of it.

Unfortunately, I don’t really have a good solution for this one yet. I hope I always apologize to him afterwards, and that he understands that it’s the pain talking, not me. Probably the best solution would be to remove myself from the situation, lie down, breathe deeply, and focus on all the blessings in my life—most especially my wonderful husband!

There are many challenges, big and small, associated with chronic pain, both for patients and those around us. The key to all of these challenges is for the patient, the partner, and others close to the patient to understand the disease and adapt to it.

While we may have to give up some activities, as well as use help more often than in the past, that doesn’t mean we have to live a poor quality of life. I wouldn’t have learned how to make bead jewelry if not for my pain, because my time would have been taken up with other sports and activities. Life is different for me now, but it can still be wonderful!

How Family and Friends Can Help

When I have an ill friend or family member, I often want to help. I think that’s a natural human desire. But not all assistance is actually positive. After living with pain for almost 20 years, here are my top 3 suggestions for what to do and not do to support those of us with chronic pain.

1. Do Not Play Doctor

Please don’t try to tell me how to treat my pain. I don’t want to hear, ”You must try this drug or treatment. It worked for my hairdresser’s mailman.“ I’m sure you’re trying to be helpful. But trust me, I have a great team of doctors, and we’ve already tried everything appropriate there is to try. I live with this disease; I want to be cured more than you can possibly imagine. It’s great to be sympathetic or empathetic, but please don’t try to solve my problem.

2. Be Flexible

Remembering how variable this disease is, please try to be flexible. Just because my pain levels were good yesterday, and I was able to attend a movie matinee, that doesn’t mean that I’ll be able to do so today. My pain can change from day to day, hour to hour. So if we’re getting together, be prepared for last minute changes in plans. I may have to cancel all together if the pain is really bad. Or I might suggest doing a take-out meal instead of going to a restaurant. I don’t like having to make last minute changes—it’s just the nature of living with this disease.

3. Offer Help and Assistance

Offer help or assistance when you can, but don’t be hurt or upset if I don’t accept. If you’re going out to run some errands, call me and ask if I need any supplies. Especially in bad weather, I can really struggle with going out to the grocery store or pharmacy.

If you have a free morning or afternoon, offer to come over for a visit. I spend a lot of time at home alone, so company can be welcome. Don’t worry—if I don’t feel up to it, I’ll tell you. If I do feel like it, perhaps I’ll invite you to come over for coffee or tea—or even suggest a walk. As I said earlier, a change of scenery can often make me feel better, and this includes having somebody to visit and talk with. And while you’re here, perhaps offer to help with a small chore, such as throwing in a load of laundry. These small contributions can be immensely helpful.

Attitude is Everything

Chronic pain is a disease that requires a lot of lifestyle changes. Managing the pain can feel like, or even be, a full-time job. Each day is different, and I never know what the morning will bring. Fortunately I have a variety of medications, tools, and techniques for managing the pain. I’ll vary the use of these depending on how good or bad it is each day.

Living with chronic pain can be challenging. I try hard to overcome these challenges by focusing on the plusses in my life, not the minuses. This requires creativity, flexibility, and a good sense of humor. Others can support me by trying to understand my disease without judgment, being flexible, and offering help when I want it.

I can cope and enjoy a happy life, with less pain, as long as I have a group of supportive friends and family members by my side.

Last updated on: May 5, 2016
Continue Reading:
Pulsed Electromagnetic Field Therapy: Innovative Treatment for Diabetic Neuropathy

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