Pain

Alternative Pain Relief

Laurie Kelley February 11, 2024

Pain is highly personal. No two people experience the same feeling of pain, even when it’s the same injury, like a muscle bleed, or experience, like childbirth. A joint bleed may feel tingling to one, stabbing to another, or throbbing to someone else. A man with hemophilia A said, “Pain is pretty deeply personal. I personally have never been able to figure out what to say when a nurse asks me to describe my pain.”

            But it’s especially personal when trying to describe the level of pain. Doctors often ask patients to rate their pain on a scale of 1 to 10. But what is a 1? What is a 10? A level 8 to one person might be a level 3 to another. Ed, who has hemophilia A, notes, “The HTC [hemophilia treatment center] will understand that most of us older guys have a base pain level that stays steady at a 5 or 6 every day. We’ve gotten used to that level of pain and this is our ‘normal.’ What’s difficult is when you go to an ER and try to relay that same information.” This is critical when people with bleeding disorders try to explain their level of pain to their doctor. Not appreciating or understanding how much pain a person is feeling may lead to an inefficient treatment for that pain.

TENS therapy

            Bonnie interprets her pain at lower levels when compared to people without a bleeding disorder. “I feel like what would be painful to someone else is just the norm for me. And I don’t find it painful because I’ve learned to live with it.”

            Because pain is so personal, medication may not be the first—or the only—option for chronic pain. Instead, both patient and physician can consider different types of complementary and alternative medicine (CAM) to learn how to handle chronic pain. And like pain, CAM can be highly personalized as well.

What Is CAM?

CAM is any adjunct (additional) therapy, like massage, used along with conventional medicine. It’s an important part of a multimodal or multidisciplinary approach to pain management. It’s also important in integrative medicine, which focuses on the whole person and makes use of all appropriate therapeutic approaches, healthcare professionals, and disciplines to achieve optimal health and healing. Here are some of the most common CAM therapies:

            Relaxation Therapies. Relaxation teaches you to relieve tense muscles, reduce anxiety, and alter your mental state. Mindfulness meditation helps you focus attention on a specific object or your breathing patterns to induce relaxation. Guided imagery is a conscious meditation technique of relaxation followed by visualization of a soothing mental image, like walking on a beach at sunset.

            Biofeedback Training. You can learn how to recognize and change your biological reactions to stress and pain by using electronic equipment to monitor your physical responses: brain activity, blood pressure, muscle tension, and heart rate.

            Behavior Modification. Some people with severe chronic pain may become anxious, depressed, homebound, dependent, or bedridden. Behavior modification helps you create a step-by-step approach to confronting challenges by changing your behavior and shifting your attitude. Matt Barkdull, a man with hemophilia B who is also a licensed mental health specialist, says, “Behavior modification and stress management are my go-to interventions. I resist the urge to curse my bad luck, attack my self-identity, or become bitter (for that which we harbor is that which we attract). I believe pain is there to teach me a lesson, to remind me to appreciate better days ahead. When I meditate upon these things, I become more grateful for the important things in my life, and make better decisions. These interventions seem to work best when pain is dull but constant and for bleeds that are relatively minor but have caused some mobility problems that will require a little time to heal. Spiking and blinding pain (deep muscle bleeds from injury) often requires me to reach out and share my struggles, perhaps take a pain pill or two, and seek some relief. It’s hard to be mindful while battling the sting of acute pain. However, I find if I deliberately engage in deep-breathing exercises and stay connected while avoiding allowing my mind to wander and unhinging from false perceptions, the pain is much better controlled.”

            Stress Management Training. If your pain level is high, your stress levels probably are, too. This training helps you maintain a routine schedule for activity, rest, and medication. It incorporates exercise or physical therapy into your daily routine, and trains you to keep a positive outlook.

            Hypnotherapy. Therapeutic or medical hypnosis directs your focus inward to help you relax and reduce pain and anxiety. You can learn self-hypnosis from a trained hypnotherapist.

            Counseling. Individual, family, or group counseling with a professional trained in pain management can provide emotional support and guidance. Tina, mother of two young children with hemophilia A, notes that anxiety is a type of pain: “Most of my boys’ pain is anxiety-related. It causes discomfort. I feel my children are more anxious than non-hemophilic kids because they associate injury with the added step of factor.” George adds, “Speaking with a mental health professional and learning meditation helped me the most. I can’t tell you how at peace I became when my mind accepted the fact that pain is part of my life and I can turn it into power and motivation to help others.”

            Acupuncture. Many patients report pain relief from this ancient Chinese technique of inserting and manipulating thin needles into specific points on the body known to control pain pathways.

            Dozens of other therapies, including acupressure, massage, and chiropractic manipulation, may help control pain. Transcutaneous electrical nerve stimulators (TENS) deliver electrical impulses to interfere with pain transmission. Ultrasound therapy warms joints internally to provide pain relief, and laser treatments may provide relief in a similar way.

            A good management plan for chronic pain must be personalized. It should use a multimodal approach, which addresses the psychological component of chronic pain by treating depression and reducing anxiety and stress. A multimodal approach includes adjuvant therapies (antidepressants and anticonvulsants); an exercise and/or physical therapy component; and some form of CAM, which allows the person to manage moderate to severe chronic pain with the lowest possible dose of painkillers.

            Here’s how Max, a person with hemophilia A, sums up personalized pain: “I’ve had to learn to understand my pain in ways that were perhaps discouraged at an earlier age.  Pain is a friend; it’s part of me. I’m learning from it every day and learning to live with it makes it less of a burden.”

Acupuncture is safe for people on prophylaxis. If you’re considering acupuncture, first talk to your hematologist or the staff at your HTC.

Time to Rethink RICE? Part1

Laurie Kelley July 3, 2022

by Paul Clement

If you’ve ever sprained or strained an ankle or knee, or suffered from a muscle or joint bleed, you’ve probably heard that a couple of days of rest, ice, compression and elevation—RICE—is the surest route to recovery. But this simple at-home treatment has increasingly been called into question, especially the “rest” and “ice” parts. Many physicians and researchers now believe that rest and ice may actually delay or prevent proper healing.

RICE guidelines have been recommended by coaches and healthcare providers for over four decades—ever since the term was coined by Dr. Gabe Mirkin in his 1978 publication Sports Medicine Book. The intent of RICE was to speed the recovery process by reducing inflammation, swelling and pain. However, subsequent research demonstrated that icing actually prolongs the healing process. Dr. Mirkin recanted his original position in 2015, and today, he advises against icing an injury.

How can icing delay or prevent proper healing? When you’re injured, the body responds with three phases of recovery: 1) inflammation, 2) repair, and 3) remodeling. Each phase must successfully occur in order for the next phase to proceed and be successfully completed. That means inflammation must occur before the repair process can begin. If you reduce inflammation, then you delay the healing process.

Why is inflammation good? Immediately after an injury, blood vessels in the damaged tissue constrict (called vasoconstriction) to reduce blood flow; simultaneously, the blood clotting process (called hemostasis) occurs to reduce blood loss. Immediately after vasoconstriction, a type of immune cell in the damaged tissue, called mast cells, release inflammatory chemicals, such as histamines, which cause the blood vessels to expand (vasodilation) and become more permeable. This initiates the inflammatory process and allows other immune cells, called neutrophils, which are attracted to the site of the injury, to leave the blood vessels and enter the space between the cells, where they destroy damaged cells and mediate the inflammatory process. This sets the stage for another type of immune cell—macrophages—to come in and remove dead cells and release growth factors which are necessary for healing. When this process is complete, the neutrophils self-destruct, ending the inflammatory phase of the healing process.

The inflammatory process is extremely complex and researchers are still learning about it at the molecular level. We  know that the inflammatory process is not always good: in some auto-immune diseases such as rheumatoid arthritis, neutrophils that enter a joint during inflammation do not self-destruct, ending inflammation, but hang around and attack the cartilage lining the joints, destroying the joints.

Icing an injury delays healing by slowing inflammation. It slows the activity of clotting factors, slowing the formation of a clot. It prevents vasodilation, which slows the movement of immune cells into the damaged tissue, and the movement of waste out of the damaged tissue. It prevents the release of growth factors necessary for healing. And it increases the permeability of the lymphatic system, allowing fluids to flow in the wrong direction: from the lymph vessels into the injured area, increasing the amount of local swelling.

Icing can help reduce pain, but many physicians now recommend using acetaminophen (Tylenol) to reduce pain, and not ice. Finally, do not use anti-inflammatory drugs, such as ibuprofen (Motrin), to reduce pain: these drugs also reduce inflammation and slow healing—in addition to interfering with the clotting process, which may prolong bleeding.

Next week: Why movement helps in the healing process.

Why I Choose Cannabis for My Pain

Laurie Kelley January 17, 2021

Felicia Carbajal

[I have to preface this article by saying that while I never used recreational drugs, lately I have had a consistent, disruptive backache that I am still trying to resolve. It’s interfering with my quality of life by now, and upon recommendation of some people, I’ve tried CBD cream. I have to say I love the results! So I thought I’d reprint this article from the February 2020 issue of PEN, by someone who knows her stuff! …Laurie]

 The cannabis plant has been deeply engrained in American history since our country’s inception. Commonly called medical marijuana and hemp, cannabis sativa has been used in everything from textiles and paper to medicines and spiritual tools. Although cannabis has been viewed as harmful or illegal, it has the potential to combat our nation’s opioid crisis, repair some of the harm caused by the war on drugs, and offer Americans a natural alternative to pharmaceutical drugs.

Felicia Carbajal

            Why do I believe so strongly that cannabis can do all of this? It’s pretty simple: cannabis has been a wonder drug for treating my chronic pain from a spinal cord injury over a decade ago. It has also revolutionized the treatment of my depression, anxiety, and PTSD, and has numerous therapeutic effects when used in its various forms.

            After my last back surgery, a microdiscectomy, I took Vicodin to manage the pain, but this would alter my mood and only mask the pain momentarily. I wasn’t myself, and the pain always came back. My medical team said this would be my life. Between the epidural injections and physical therapy sessions, I began researching alternatives.

            I tried everything to reduce my pain. I bought gadgets like seat and hand-held massagers, a laser acupuncture pen, and electrostimulation devices. I tried countless complementary therapies like chiropractic treatments and acupuncture. Up to that point, cannabis was last on my list of options. Fortunately, I was introduced to a world-renowned medical professional who was working with patients on low-dose cannabis options with controlled intake of THC. His team gave me a bottle of tincture to try. Three days later, I was pain-free, no longer needing Vicodin, and smiling.

            This introduction marked the beginning of my journey with cannabis. I knew the power of sharing my story, and became even more intrigued by the potential of this plant as I weaned myself off a cocktail of anxiety, depression, and pain meds that caused more harm than good. I knew I had to keep learning.

            First, I researched the legal history of cannabis. I grew up a DARE1 evangelist during the 1980s and was unaware of cannabis’s history in the US dating back over a century. Hemp was a valuable crop in the American colonies, used for a variety of purposes, including paper and rope. Eventually, it entered American pharmacopeia as cannabis and became a tool for advancing conservative agendas. Today, more than half the country has some form of regulated cannabis, and a majority of states allow the sale and transportation of hemp-derived products.

            Next I explored the science of cannabis. I had friends who’d been diagnosed with HIV and AIDS and knew that this was their medicine, but I didn’t understand why or how. I dove deep into the research and discovered the endocannabinoid system (ECS).2

            The ECS is a network of neurotransmitters and receptors that work round-the-clock to help keep the body in homeostasis. Found throughout the bodies of mammals and other vertebrates, the ECS responds to the presence or deficiency of cannabinoids, which can be endogenous (produced within the organism) or exogenous (produced externally).

            Endocannabinoids are produced internally and regulate the function of just about every physiological system within the body. Phytocannabinoids are endocannabinoids derived from plants, including but not limited to cannabis.

            Naturally, I went to my physician and began asking about the ECS. To my surprise, she knew little about it. I shared some links from the National Institutes of Health (NIH)3 and other research bodies4 about current clinical trials and research.

            My biggest recommendation: When you explore cannabis, be safe. The cannabis industry is in its infancy; with recent reports of cannabis-induced health concerns, it’s imperative to purchase from a licensed, regulated producer. You should be able to view the lab test results of any product you buy, so you know exactly what you’re putting in your body. There are lots of options everywhere, including websites like Amazon, so be mindful! And if possible, test what you’re using.

            Finally, make sure you’re aware of the laws and regulations in your area. This is essential as more and more states regulate.

            I’m fortunate to live in a state with regulated cannabis, which means I have access to clean, tested cannabis products—a privilege I don’t take lightly. I have the opportunity to explore other cannabinoids, including THCA (tetrahydrocannabinolic acid) and THCV (tetrahydrocannabivari) in conjunction with terpenes, aromatic plant essences found abundantly in cannabis that can provide therapeutic relief and enhance the efficacy of other compounds when combined (the “entourage effect”).

            For those who are new to cannabis or who live in unregulated areas, take this chance to educate yourself. Check out sites like Project CBD,5 GreenFlower Media,6

and Leafly,7 and dive into the data. Go to the NIH website8 and type “cannabis” along with your condition to review the research. The reality is that cannabis is personalized medicine, and the one-size approach won’t work for everyone.

            After years of taking opioids, I’m finally free. Cannabis can improve the quality of your life, too. Understand and explore the possibilities of cannabinoid therapies. Together we can fight the stigma and perception surrounding cannabis, save countless lives from opioid-related overdoses and deaths, and heal the harm from the war on drugs by voting for sensible drug policy.

Felicia Carbajal is a values-based community organizer, social entrepreneur, change-maker and innovator in the cannabis industry. Based in Los Angeles, the cannabis capital of the nation, Felicia has over two decades of experience in California’s cannabis market. Felicia has worked with world-renowned cannabis medical professionals, has consulted numerous cannabis brands, and is a trusted resource for multiple patient and consumer communities. Currently Felicia is executive director of the Social Impact Center: felicia@thesocialimpactcenter.org.

1. Drug Abuse Resistance Education 

2. www.uclahealth.org/cannabis/human-endocannabinoid-system 

3. nccih.nih.gov/health/marijuana  

4. www.cancer.gov/about-cancer/treatment/cam/patient/cannabis-pdq  
5. www.projectcbd.org 

6. green-flower.com 

7. www.leafly.com  8. nih.gov

What a Pain

Laurie Kelley December 8, 2014
I was just catching up on my weekly news magazines today and caught this stat about prescription addiction: 46 people die each day from overdoses of prescription opioids, like Percocet, Vicodin and Oxycontin. Up to 90% of those with chronic pain are prescribed an opioid, and up to 25% become addicted. Some people in our bleeding disorder community suffer from chronic pain, especially those with inhibitors and chronic joint damage. I thought it would be good to run this excellent article published in my latest edition of PEN by Paul Clement, our science writer, in our column Inhibitor Insights, sponsored by Novo Nordisk.

How to Use Pain Meds Safely             by Paul Clement
Pain is no stranger to people with hemophilia: joint bleeds are painful, and repeated
bleeds into a joint cause damage to cartilage, resulting in a painful form of
arthritis called hemophilic arthropathy. A trip to your medicine cabinet
usually yields some form of painkiller (analgesic) to get you through the worst
of the pain. But when you have inhibitors, you may need something stronger for prolonged
bleeds or chronic arthropathy.
Most people don’t think twice about taking analgesics. But these meds can potentially kill:
every year, many people overdose accidentally. People with inhibitors frequently
need painkillers and may be at higher risk of serious side effects. When was
the last time you thoroughly read the package insert on your pain med? What do
you need to know to be safe when taking pain meds?
Two Types of Pain
Pain is either acute or chronic. Acute pain lasts hours or days. Chronic pain lasts six months or longer. Acute pain is considered necessary, even beneficial—alerting our bodies to danger or injury, and prompting us to protect ourselves or get treatment. But chronic pain is a disease state in itself, and is often destructive and debilitating, harming our general well-being.
If you have hemophilia, your acute pain is usually caused by bleeding that leads to swelling in joints and muscles. Chronic pain, by contrast, is usually caused by arthritis in joints, a result of repeated bleeds that have damaged the joint’s cartilage—a common problem for many people with inhibitors. The two types of pain require different treatment approaches and different pain meds.
Proper treatment of pain depends on the type you have. Pain meds are divided into two broad groups: opioid and non-opioid. Mild acute pain—like a headache—is often treated by non-opioid over-the-counter (OTC) pain meds, available without a doctor’s prescription. There are two basic
types of OTC pain relievers: (1) acetaminophen and (2) a broad class of drugs called non-steroidal anti-inflammatory drugs (NSAIDs), such as naproxen and ibuprofen.1
Opioids, such as morphine and oxycodone, are available only with a prescription. These meds are used to treat moderate-to-severe acute pain and chronic pain.
When used as directed, pain meds are usually safe and effective. But when misused, all pain meds can be dangerous and even deadly. Most drug overdoses are not intentional, but are caused by ignorance. People don’t read product inserts carefully, or they combine multiple drugs, not realizing that this could result in an overdose or make their normally safe medication toxic. Also, many people believe that because OTC drugs are available without a prescription, they must be safe and can be taken without harm. Not true! In fact, OTC pain meds are powerful drugs that can be deadly, and they should be used with caution.
What do you need to know about pain meds to keep yourself or your child safe? In the first of this two-part series, we’ll look at the risks of acetaminophen, the most commonly recommended pain med for people with hemophilia.
Acetaminophen
For hemophilia, acetaminophen (Tylenol®, Excedrin®, Anacin®) is the most often recommended drug for mild to mild–moderate
pain because it’s generally effective, and it doesn’t affect the blood’s clotting ability, like almost all NSAIDs do. Acetaminophen reduces pain and
fever and won’t cause gastrointestinal bleeding, as NSAIDs can. But acetaminophen has no anti-inflammatory properties, as NSAIDs do, to help reduce swelling in joints and muscles.
When taken as directed, acetaminophen is generally safe. Over 50 million Americans use acetaminophen weekly, but it can cause liver damage. Don’t take a higher dose than is recommended. Don’t take acetaminophen for more than ten days or while drinking alcohol.
Acetaminophen overdose is the leading cause of calls to US poison control centers—more than 100,000 instances annually. Every year, acetaminophen overdose is responsible for more than 56,000 emergency room visits; 26,000 hospitalizations; and an estimated 458 deaths due to acute liver failure.2 In fact, acetaminophen is the number one cause of acute liver failure—placing it above viral hepatitis as a cause.
About half of acetaminophen overdoses are intentional, as in suicide. The other half are unintentional. Unintentional overdose often occurs because people are either unaware that acetaminophen can be dangerous, or they mix drugs. Even if you’re aware of the dangers of acetaminophen, you may not know what’s in the other drugs you’re taking at the same time. Acetaminophen is found in over 600 drugs,
including many cold medications, and this may not be prominent on the label. Consumers may also be led astray by a label’s wording: sometimes acetaminophen is abbreviated “acet” or “acetamin,” or is listed in the ingredients not by its common name but by the abbreviation of its chemical name: APAP.3 If you’re traveling abroad, know that in countries outside the US, Canada, and Japan, acetaminophen is called paracetamol.
Overdosing
Unfortunately, overdosing on acetaminophen is easy—there isn’t much difference between the maximum recommended dose and a potentially dangerous dose that is toxic to the liver. FDA guidelines limit the daily maximum dose of acetaminophen to 4.0 grams (g), or 4,000 milligrams (mg). (1 g equals 1,000 mg.) But for some people, even taking acetaminophen at below the FDA recommended maximum dose may be dangerous—a small percentage of people who take acetaminophen can’t efficiently metabolize (break down) the drug, and they suffer liver damage even
though they are taking less than the recommended maximum daily amount.
In 2011, McNeil Consumer Healthcare (a Johnson & Johnson company, the manufacturer of Tylenol and largest seller of acetaminophen) voluntarily lowered its recommended maximum daily dose from 4.0 g to 3.0 g, that is, from eight extra-strength (500 mg) tablets to six extra-strength tablets daily.
People may unintentionally overdose on acetaminophen by taking more than one drug containing acetaminophen. Suppose you’re taking extra-strength Tylenol (500 mg) for a joint bleed, and then on top of that, you take NyQuil® Nighttime Relief (containing 650 mg of acetaminophen) to get some sleep because you also have a cold. This combination of meds (1,150 mg of acetominophen) may push you over the 4.0 g daily limit.
It’s also easy to overdose on acetaminophen by taking repeated doses that are only slightly over the recommended maximum dose. Some people fall into the trap of thinking that more is better, and knowingly take a little more than the recommended dose—because it’s “close enough” not to cause problems, right? This is dangerous thinking! Taking multiple small overdoses, called staggered overdosing, is often more life-threatening than taking a single, large dose. Why? It’s harder for physicians to detect staggered overdosing because blood acetaminophen levels are low (as opposed to a single large dose, which is easily detected); and often, people often don’t go to a hospital for help until after the damage is done.
Why would anyone not go to a hospital for acetaminophen overdose? Often, because they don’t know they have overdosed! An overdose of acetaminophen doesn’t typically produce immediate symptoms, and when symptoms do appear, they often mimic those of the flu—often, the reason people are taking acetaminophen in the first place.
Symptoms of drug-induced liver damage, which may not show for several days or more, include loss of appetite, nausea, vomiting, fever, and abdominal pain. In more serious cases, urine may be dark (indicating blood in the urine), and the skin and eyes may be tinged yellow (called jaundice, an indication that the liver is not effectively removing the breakdown products of red blood cells). Usually, if the damage is not severe and caught early, the liver recovers once the drug is stopped or with medical treatment. But if the damage is severe, the liver will stop functioning effectively. This is acute liver failure, and without a transplant, it will cause death. .
How to Make Sure You Take Acetaminophen Safely
1. Always read the package insert! If the product you’re taking contains acetaminophen, check the package insert for correct dosing.
2. More is not better! Take the lowest possible dose of acetaminophen you need to control your pain.
3. Don’t take more than one product at a time that contains acetaminophen! And never drink alcohol when taking medicines that contain acetaminophen.4
Here are more ways to stay safe:
Keep your daily acetaminophen dose below 3,000 mg (3 g). That’s six extra-strength 500 mg pills, or ten regular-strength 325 mg pills. (This is less than the FDA recommendations.
Do not take acetaminophen for more than ten days unless you are under a doctor’s supervision; this increases your risk of liver damage.
If you have viral hepatitis, ask your doctor before using acetaminophen; you may. be at higher risk of drug-induced liver damage due to previous liver damage.
Consult your doctor if you take carbamazepine (anti-seizure medication) before taking acetaminophen. This drug can put you at higher risk of severe skin reactions to acetaminophen.
Be aware of these rare but serious and potentially fatal skin reactions caused by acetaminophen: Stevens-Johnson Syndrome (SJS), toxic epidermal necrolysis (TEN), and acute generalized exanthematous pustulosis (AGEP). If you develop a skin rash or reaction while using acetaminophen, stop taking the drug and seek medical attention immediately.
If you use warfarin (blood thinner, brand name Coumadin®), ask your doctor before taking acetaminophen, which interacts with warfarin, increasing
bleeding time.
If your child uses acetaminophen:
Never give your child adult doses.
Dose children based on weight, not age. McNeil Consumer Healthcare recommends consulting a physician before giving Tylenol to children under age two.
To measure liquid acetaminophen for a child, use the measuring device that comes with the child’s medication. Don’t use household teaspoons, which can vary widely in size.
Keep all pain medications out of reach of children, and securely replace childproof caps.
In case of overdose, contact the Poison Control Center: (800) 222-1222
1. High-dose NSAIDs for moderate acute pain are available by doctor’s prescription.
2. In a 2013 telephone poll of approximately 1,000 adults conducted by Princeton Survey
Research Associates International, 51% of respondents were unaware of any safety warnings associated with
Tylenol. The poll also found that many Americans also believed it was safe to
take several different meds containing acetaminophen at once. For example, 35%
of respondents said it was safe to combine the maximum recommended dose of extra-strength
Tylenol with NyQuil®, a cold remedy that also contains
acetaminophen. According to the FDA, this is not safe.
3. Fortunately, this is now uncommon. With greater awareness of the potential of liver damage from acetaminophen, most
drug manufacturers now prominently list acetaminophen in the active ingredients of the drug facts panel of their products, often in bold type with highlighting in bright yellow.
4. More than three alcoholic drinks a day significantly increases your risk of liver damage by decreasing the ability of your liver to properly metabolize
acetaminophen.
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