Note: This article is for educational purposes only and is not intended to be construed as direct medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.
Pain is a serious medical concern in our country. Approximately 100 million Americans suffer from chronic pain. For those living with bleeding disorders, pain as a result of a bleeding episode can result in acute (short-term) and/or chronic pain issues. Everyone will experience significant and recurring pain at some point in their lives, but it’s important to remember that you’re not alone. HFA shares the experiences of Blood Brother, David “Tigg” Tignor and how he manages his pain. According to Dr. Kim Mauer of the Comprehensive Pain Management Center and Adult Inpatient Pain Service at Oregon Health and Science University (OHSU), “Pain is a subjective experience. It does not have to be affiliated with actual tissue damage and you don’t have to demonstrate damage to have pain. Pain can’t be seen or heard. Pain is different for each and every person.”
What is your personal experience with pain?
I have lived with pain all my life. Pain from needles, trauma, bleeds, arthritis, etc. There are a lot of different ways and levels of pain we experience when living with severe hemophilia. A big, and consistent, source of pain is my ankles, which are basically bone-on-bone at this
point. The last time I saw an orthopedic surgeon, he said ankle fusion was my only option and I said “No thank you, I’ll deal with the pain.” People are often surprised when I let them know I’m in pain because I’ve become so good at hiding it. I’m always in pain; when I wake up in the morning my ankles hurt pretty badly. In the past, once I started walking, the pain would go down a notch or two, but it never went away. This was classic chronic pain. In recent months my baseline has intensified so that even with walking I can’t seem to lessen the pain level.
If I’m on my feet all day, or have participated in strenuous activities the pain gets worse. Sometimes, after resting for a bit after being on my feet a long time, I’ll get a stabbing sensation, like a large hot needle hitting the bone. That kind of acute pain can drop me to the ground. That kind of pain, well, it’ll get your attention pretty quick.
Of course I have pain beyond just my ankles. Because my ankles are inflamed, the muscles all the way up my shins have become inflamed and painful as well. And when muscles are inflamed, they tend to atrophy from lack of use. That’s something people notice: if ankles are damaged, calves tend to be skinnier than normal. If it’s the elbows that are inflamed, biceps will tend to be smaller.
When I was in college, I fell in love with rock climbing. I would wear Aircasts on my ankles, hike a couple of miles to climbing sites, climb several routes, and hike back out. Of course, that night, and usually the following day, I would not be able to walk at all. I would literally sit on my kitchen counter in order to cook my meals. I would crawl on the floor, pushing my plate to the couch, and continue to crawl around until I could put weight on my ankles again. Luckily I did my rock climbing and hiking on Saturdays, so by the time Monday rolled around, I was able to limp to class. I was in pain but it was pain I could tolerate. Why did I do this to myself? Well, rock climbing was something new and exciting; it tested my strength, agility, limitations, and, yes, my mental toughness as well. When I was able to accomplish any route no matter the difficulty, I was exuberant! The feeling of accomplishment and happiness gave me goosebumps. A man can put up with a lot of pain for that kind of joy.
How do you manage pain?
For the most I’ve suffered, endured, and tolerated the pain. It was, and is, not easy. Acetaminophen couldn’t touch my arthritic pain. In middle school, I wore a cast for a month on one ankle and wore several types of braces. In high school I discovered Aircasts and they worked the best with the boots I wore at the time. They stabilized and supported my ankles up, down, left and right. I still had pain moving from class to class but the Aircasts helped. By high school, I was taking ibuprofen almost every day and it was a life saver. I know ibuprofen is not recommended for people living with hemophilia, but it worked for me and I always took it on a full stomach.
As I got older, I graduated out of Aircasts and into a kind of boot that provides me with the support I need. I discovered, though, that I was getting soft tissue bleeds from consuming all that ibuprofen. A hematologist prescribed hydrocodone, but that gave me terrible headaches, which wasn’t a worthwhile trade-off. Now when I need pain medication, I take Tramadol and ibuprofen to get me through the day. I cannot recommend this treatment to anyone else, in fact my hematologist has told me specifically not to use ibuprofen. But I don’t want to take stronger narcotics and risk addiction. In addition to the Tramadol and ibuprofen, I use cold gel packs for topical relief and my shins and ankles are regularly massaged by my wife.
What has been your experience with pain management treatment options?
Treatment options have mostly come in pill form: acetaminophen, didn’t work for me; Celebrex, worked well, but hurt my kidneys; naproxen was great, but it gave me too many bleeds; hydrocodone and oxycodone gave me headaches; ibuprofen I could tolerate well; and finally, Tramadol. I do find it worrisome that some doctors will write prescriptions for strong narcotics to members of our community, seemingly carelessly. I’ve seen Blood Brothers on very strong opiate pain medication, and it is troubling. While strong narcotics are necessary in many situations and are taken under the guidance of medial professionals, the risks associated with them are what worry me.
Which day-to-day activities help you cope with your pain?
Exercise is always good; I try to do it at least twice a week. What helps the most is doing things that keep my mind off the pain: playing and listening to music, going to the movies, reading books, watching favorite TV shows, and playing video games are all good distractions. I like outdoor activities like fishing, too. Being in nature and enjoying the fresh air are great. I’d recommend that to anyone: just go outside and watch your kids play. Find something you enjoy to distract you from the pain.
What tips would you share with others to be more successful when talking with healthcare providers about pain?
Someone once said, “Some people think that to be strong is to never feel pain. In reality, the strongest people are the ones who feel it, understand it, and accept it.” That’s my advice, in a nutshell. If you are living with a bleeding disorder, you are going to have to deal with pain your entire life, whether it be from vein sticks, bleeds, or joint damage. Once you accept that you will have to deal with pain, life will become a little easier for you. Try alternative therapies and distractions before turning to narcotics. If you must look to opioids, be very careful, they are addictive and can bring you and your family a whole other world of pain down the road.
David (AKA “Tigg”) lives with his wife, Christy, and two children Lily (15) and Zachary (8) in Tennessee. He has been actively involved with the bleeding disorders community both locally and abroad for more than 25 years.
Pain can be divided into three main categories:
- Neuropathic: Examples include nerve pain/damage.
- Nociceptive: Examples include arthritis, bone pain, tumor pain.
- Inflammatory: Examples include pain from infections and dental pain. Most hemophilia pain would be a combination of inflammatory and nociceptive.
Opioid medications refer to medications such as morphine, oxycodone, Tramadol, Percocet, and hydromorphone. They do provide pain relief and are probably some of the best pain medications we have, however they have many side effects, including:
- Decreased REM sleep
- Decreased testosterone
- Decreased estrogen
- Risk of dependence
- Risk of opioid-induced hyperalgesia (heightened sensitivity to pain)
- Risk of depression
- Risk of infertility
It is critically important for you to have an ongoing conversation with your healthcare provider about your pain. The decision to use opioids is a serious one so you need to have an open and honest discussion with your doctor to determine if they are right for you in your pain management.
Dr. Kim Mauer works in the Comprehensive Pain Management Center and Adult Inpatient Pain Service at Oregon Health and Science University (OHSU). She regularly works with the hemophilia treatment center at OHSU, helping patients manage the pain associated with hemophilia in both inpatient and outpatient settings. Her center is focused on wellbeing and health as well as integrative care. Patients are treated not only with medications, but also acupuncture, chiropractic care, nutrition, massage, and biofeedback. Dr. Mauer has been active in chronic opioid research and education regarding the use of these therapies.
|If you or someone you know needs help, call the Substance Abuse and Mental Health Administration’s (SAMHSA) National Helpline, a confidential and free information service available in English and Spanish for individuals and family members facing mental health or substance use issues, at 1-800-662-HELP (4357). The helpline is open 24 hours a day, 365 days a year.|