Chronic Pain Management in Hemophiliacs, An Unheard Story

For the past couple of years, I've been weighing my options in terms of seeking medical treatment at my current Hemophilia Treatment Center (HTC). Deep down, I've felt more like I've been a statistic, rather than a genuinely cared for patient who lives with hemophilia. The treatment center has gradually slipped into an unforeseeable decline of patient care. Let me explain.

A very serious issue among the 40 something patient populous is the management of chronic pain, stemming directly from permanent joint damage derived from hemophilia related joint and muscle bleeding. Multiple bleeds over time, in my case almost 4 decades, have left me immobile in many of primary joints including left shoulder, right knee, right elbow and both ankles. The pain from this type of damage is at times, very intense and severe. Many times, leaving patients spending long nights lying awake in their recliners hoping and praying for some sign of relief to the inflamed joint so they can simply sleep.

Today, I was pretty much ostracized for my condition by my chronic pain management doctor, who up until today has been warmly welcoming to my condition and case. What was to be a routine follow-up appointment, ended in me questioning whether or not I was a lowlife addict who was only there to receive pain medication. His exact words, and I quote, "There is no need for you to be on pain medication, you appear today to be doing well." After explaining to the doctor that I've been having trouble sleeping as a direct result of pain from my joints and right elbow, he was forcibly quick to chime in, "Yeah, but you don't need a medication to sleep, there is nothing wrong with you." Upon attempting a second time to reinforce my disease of living with hemophilia, he looked and said, "I'm weaning you off all medications, and will put PRN on your appointment slip," which means no follow up. I left the clinic feeling worthless, defeated and that I was only there like an addict seeking a fix.

Let me be clear, I've seen the horrific effects of pain medication addiction even in my own family, I know the risks of being an addict versus taking a medication on an "as needed" basis for relief. I am in no way addicted to pain medication, and solely do no rely on them for daily function. Hemophilia and chronic joint pain go hand-in-hand, and no one in the industry today seems to want to blow the lid off this issue. The chronic pain management doctor gave multiple attempts to try to alleviate my pain by prescribing Gabapentin, and Lyrica, both neuro blockers that treat muscle and nerve pain. But, my pain isn't directly muscle or nerve, rather direct bone to bone grinding and internal joint hemorrhaging. Both drugs failed miserably at treating my pain, yet I gave them both valiant efforts.

My question to the everyone in the hemophilia community, "Why isn't this issue addressed more in older patients?" Patients today, age 25 or under, don't have the joint deformities we older patients have because they've all been placed on prophylactic treatment regimens to prevent bleeding episodes. Thankfully, now, I am on a preventative treatment regimen as well, but chronic pain is the number one issue that I face each day. I despise going to the pharmacist, handing him the script and the look he/she gives me when they read the drug's name.

And my complaint isn't with just the pain doctor, but the entire HTC as a whole. From their poorly communicated social worker, who has now since been replaced, to the physical therapist that simply walks in, looks at my joints, and states, "that's a really messed up joint right there, what are you doing for it?" Wait... Shouldn't you the physical therapist be offering me insightful knowledge on treatment options and, GASP... possible physical therapy sessions? Rehabilitating a joint, building muscle around the joints will cause a lot less bleeding episodes, but no treatment options are given or offered, just a consult, and out the door and on to the next.

If you're living with hemophilia, and you're currently happy with your doctors and treatment plans, than I am more than thrilled that you've found your niche. But, if you're a patient questioning your own value and worth, and your doctors demeaning tone leaves you feeling more-or-less like a "frequent flyer," than it's definitely time to change. So, as of today, I'm doing just that! I've been with this HTC since March 2009, and in these past 7 years seen a gradual decline of patient care and value. If you're like me, and trapped in the psychological mind game of treatment facilities, than perhaps you should take a stand and change things up. Effective today, I will no longer seek medical treatment for hemophilia from this facility. I am moving my care to to a different city, a new HTC and a doctor whose perspective on hemophilia is more compassionate than the latterly explained.

Hemophilia and chronic pain management will forever be tied together. I stand silent no more, and plan to expose the dark side of the health care industry. Don't stay at an HTC just because you get what you need, that's not progress. Stay because you feel valued, respected and cared for. 

The Cold Stare - Chronic Pain From Hemophilia

I am going to open up about something very few know about. Only my parents, wife and a small handful of close friends have seen the real “Joe Burke.”

There is a generation of hemophiliacs alive today who are modern day anomalies of science, and the fact some of us are still alive and well remains nothing short of a miracle. This era of hemophilia born individuals has not only suffered through the era of the AIDS epidemic of the 1980′s and 90′s, but are now facing challenges even more serious with age.

Being a co-infected hemophiliac myself, which means having both HIV and Hepatitis C from contaminated blood products of the early 80′s, I am now facing a giant even more towering than HIV, AIDS or HCV: chronic pain.

Long before today’s standard of prophylactic treatment to prevent joint bleeds in hemophiliacs, patients were given factor VIII infusions on an “as needed” basis. Which means, when a joint bleed occurs, we didn't have preventative measures to stop the episodes. Until my move to Florida in 2009, I was never placed on prophylactic therapy to treat hemophilia due to its cost; often times a bill of $25,000 a month for factor VIII injections and supplies.

Often times the bleeds would stop after a couple doses of factor VIII, but more often than not, many would require more than just 2 dosages to control the bleed. Not only did this style of “as needed” treatment result in severe joint damage, but permanent joint immobility and function.

The pictures to the right show my own body and the damage done to it over the past 30 years. Pictured is my right knee, which is severely and permanently enlarged, my right elbow, right ankle and what a small bruise to a normal person would look like on a hemophiliac.

Not only over time do the joints lose mobility, but managing the pain of something as simple as standing in a shower can be extremely difficult.

Where am I going with this? I was reading a column in National Pain Report recently about a young lady who suffered from muscular dystrophy, rheumatoid arthritis, scleroderma, mixed connective tissue disease and other auto immune related disorders.

Her story of being humiliated by her pharmacist in her hometown echoed many horrors I've experienced personally in requesting proper medications to treat hemophilia related episodes and pain.

Every time I visit my doctor that treats my hemophilia, it gets to the point in the visit where I must bring up the refill of my pain medication. I can’t help but feel somewhat humiliated. Not by the fact I’m asking for pain medication, but that in my asking, I’m being compared to those who abuse the system fraudulently.

I've been okay with my Hemophilia Treatment Center in asking for pain medication and receiving it — although the stigma is still there. But when I ask my pharmacist to fill the prescription, I’m often greeted with a cold stare and told, “We are all out, you’ll have to come back later.”

The cold stare translates into anger in me. And the anger manifests into resentment towards those who abuse the pharmaceutical system to get “a fix.” As a Christian man, I must love everyone, but the drug seekers are making it extremely difficult for those who truly need the medications, thus testing my patience on a daily basis. The Apostle Paul wrote about thorns in the side, and this is a big thorn for me.

Let me be real for a second. There are moments, as a man with severe hemophilia, that something as simple as showering can be excruciating. It’s hard for me to stand in front of a toilet to go #1. I can’t physically reach my back when I shower and often ask my wife to assist. Getting out of bed is a 20-30 minute daily routine for me of just standing at my dresser while holding on so my ankles, knees and hips get used to my weight. And I don’t weigh much at all, just 170 lbs.

I hate the feeling I get as the prescription leaves my hands into the pharmacist’s, and that moment when he reads the script and then the glance upward at me. It’s always degrading to some extent. Automatically, I’m considered “One of Those” types. It’s humiliating that I have to feel this way when all I want is a way to at least relieve some of the pain caused by a hemophilia related injury and permanent joint damage.

When an occurring bleed is happening, not only do we have to rest the joint and pack it with ice, but often times I’m awake all hours of the night without sleep due to sheer pain. Things like muscle creams, joint gels, icy hot etc. don’t even phase a hemophiliac. We bleed internally in the joint.

To all my blood brothers and sisters out there who are the older generation of hemophiliacs with pain and permanent joint damage, we must continue to fight and hold our heads high. We have a medical condition that causes lifetime pain and stress, and we must never feel humiliated or dismayed when asking for help to manage our pain.

Usually it only takes a moment for a pharmacist to see the damage to our bodies and the look on a worried patient’s face. Then they realize that we’re not junkies, we’re not scammers, and we’re not a threat. We are just a hemophiliac who needs help.

They have been conditioned by the DEA to think “druggie.” They are scared. They can lose their job, their career, their assets and their freedom if they make one small mistake. The paperwork, the time and the risk are just not worth it.

The misguided, insensitive and inhumane policies of our government, and the DEA in particular, have led us to create a Facebook page called Patients United for DEA Reform. It’s for people like hemophiliacs who need a voice and the support of family, friends and community. People living with pain and chronic illness.

You can learn more about Hemophilia by watching this video: