Chronic pain can often be associated with pulmonary hypertension. Many diseases associated with pulmonary hypertension such as arthritis or scerloderma can cause chronic pain. Pulmonary hypertension medications can also cause chronic pain, such as jaw pain or site pain associated with IV administered medications. Chronic pain can be very debilitating and really hinder the quality of one’s life. As such, some patients with pulmonary hypertension are prescribed painkillers to help manage their pain.
I recently heard from several young adults with pulmonary hypertension that they abuse their prescribed pain killers. They were prescribed the medication by their doctors for chronic pain, and intended to use them as necessary. However, after time they began to abuse the pain killers by taking them more than prescribed.
Prescribed painkillers that include hydrocodone, oxycodone, morphine, and codeine are classified as opioids. Many of them are prescribed by doctors to help patients manage their chronic pain. While these medications are beneficial for patients who suffer with chronic pain, roughly 44 people die everyday in the U.S. due to an overdose of prescribed painkillers. According to the National Survey on Drug Use and Health (NSDUH) conducted in 2013 and 2014, 22.1% of people who misused opioid painkillers got them legally through a doctor.
Painkiller abuse is certainly a growing epidemic. According to the 2014 NSDUH, 1.9 million Americans met the criteria for prescription painkiller “use disorder” based on their use of prescription painkillers. According to the 2014 NSDUH, the average age for first-time use of prescription painkillers during the past year was 21.
There is little literature available about the abuse of prescribed pain killers for post diagnosis pulmonary hypertension patients. Several pulmonary hypertension patients agreed to speak to me about their experience with prescribed pain killers. Their names have been changed for this column.
Sarah and Lindsay are both young adults with pulmonary hypertension who have recently started to abuse their prescribed painkillers. They both revealed that they know other patients their age who are also abusing their painkillers. However, as you will learn in Jessica’s story, prescribed pain killers are highly beneficial for patients who suffer from chronic pain. Jessica credits prescribed painkillers for allowing her to stay mobile and working.
I first spoke to Sarah, a pulmonary hypertension patient in her mid 20s. She says that she was first prescribed painkillers in 2007 when she started to experience site pain after being switched to subQ Remodulin. She was first prescribed tramadol, which did very little in masking the excruciating pain she was living with. She experienced so much site pain (which needs to be changed once a month), she would spend at least a week on bed rest, often screaming and crying in pain. She describes it as some of the worst pain she experienced in her life, which is one of the reasons she switched to Flolan in 2009. Sarah discontinued her use of prescription painkillers up until 2014. She was prescribed pain killers again because of the debilitating side effects she was experiencing from Flolan. Sarah explains that her “Flolan rate was so high the side effects were outweighing everything, and I was in so much pain I couldn’t get through a day of school or leave my house.”
Sarah has only started to misuse her prescribed painkillers within the last year. She started using prescribed methadone and Vicodin because her pain management and monitoring was placed in palliative care. She now takes about 12 Vicodin everyday along with 14 ml of methadone. Sarah cites depression and anxiety as her main source for starting to abuse her prescribed painkillers. She also began to notice that she built up a tolerance to her prescribed dose, so she had to begin taking more to reap the same effect. Some days Sarah has to lie in bed in pain until her prescribed painkillers begin to work. She says that her doctors are aware of the mass amount of Vicodin she takes daily, and they are working on a plan to hopefully get her off of all painkillers.
Medical cannabis is not legal in the state where Sarah lives, but she says she wishes that it was available. She believes that it would help her in a multitude of ways, such as management of pain, anxiety, depression, weight gain, and helping her with her poor appetite. Sarah says that she would “love nothing more than to have medical marijuana in my life. I feel like PHers could greatly benefit from it. When I’m depressed or having high anxiety in public, sometimes I will take an extra vicodin or two to just forget the depression, shake it off, keep moving, and have forced fun. I know it’s not good to do, but I will admit to having done it.”
Sarah’s doctors have also suggested that she try getting massages, but living in a small town offers very little access to a registered massage therapist (RMT.) The average cost of massages by a RMT where she lives costs about $80 a session, making it difficult to afford regular massage sessions.
A pulmonary hypertension patient in her mid-20s, Lindsay has been prescribed pain killers for several aliments like site chest pain, and oxycodone for crippling arthritis pain. Lindsay says “most things I’ve been to the ER for I will walk out with some sort of pain killers. I think I’m a threat to them with my health history.” Lindsay started misusing her pain medications when she had leftover oxycodene sometime last year. Pain killers “just made me feel painless from morning to night. I felt like the old me before I was diagnosed with pulmonary hypertension. It felt great to be numb for a few hours. “
Medical cannabis is sometimes used to help treat chronic pain. Unfortunately, medical cannabis is not legal in the state that Lindsay lives in. Lindsay shares that she is upset that medical cannabis is not available to her. She has heard of other chronic pain and illness patients who have had success treating their pain with medical cannabis. Another reason why she wishes medical cannabis was available to her is because “it’s natural and not addicting.”
Lindsay bravely opened up to her pulmonary hypertension specialist about abusing her prescribed pain killers. She says her doctor understood why she was taking her painkillers more than needed. Now her doctor tries to prescribe medication for pain that is non addictive.
I asked Lindsay if she thought there was a hidden problem within the pulmonary hypertension community in terms of abusing prescribed drugs, specifically painkillers. Lindsay shared that she knows a handful of pulmonary hypertension patients who are going through the same struggle, and that this problem is often kept hidden. “Who wants to admit to themselves and others they have a pill problem? I think anyone would get tired of being in some sort of pain or depression everyday, so why not take it away for a little bit?” she asked. “This needs to be more open to the public without anyone being judged. Which I know will be hard.”
Jessica, in her mid 30s, has pulmonary hypertension and scleroderma. She uses pain killers because of the severe pain scleroderma causes throughout her body. She suffers from chronic pain in both her muscles and joints. The pain can be so bad that some mornings she can barely move. Jessica credits pain killers for improving her quality of life, and allowing her to stay active. “I’m lucky that I still work. It keeps me flexible. Like most ‘sclero’ patients, I have limited mobility. I can’t make a fist, reach my arms in the air, etc. Pain medication prevents me from feeling that pain associated with my body.” Jessica lives in a U.S. state where medical cannabis is not legal. Although she has mixed feelings about medical cannabis, she sees the benefits to it. She states that she would be interested in using it as a therapy if it were legal, and if she were able to take a strain like CBD that doesn’t cause a high.
As for the benefit of pain pills? “I 100% benefit from them,” Jessica says. Her doctors help monitor her medications for pain, and she only goes to one pharmacy so all of her doctors can track how many she takes. Unfortunately, Jessica has limited use of her pain medication because they are so frequently abused by others. She finds the situation very frustrating because the medications were designed for a patient like her. However, she sees why there would be a relationship between abusing pain killers within the pulmonary hypertension community. “We deal with so many emotional psychological issues associated with living with a chronic illness,” she says.
Jessica tried a few alternative therapies to see if they could compliment her current pain treatments. Physical therapy didn’t help the pain, but she said it did help increase her mobility. Aromatherapy didn’t help with the pain either, but she believes that it did help with her psychological wellbeing. The only thing that truly keeps Jessica pain-free is hydrocodone.
After interviewing several young adults within the pulmonary hypertension community, I began to wonder if their situation makes them more vulnerable to prescription pain-killer abuse. Pulmonary hypertension is a very serious disease that can lead to a poor quality of life and depression for some patients. It isn’t difficult to draw conclusions as to why or how someone diagnosed with pulmonary hypertension could begin to abuse their prescribed painkillers over time. It is a heavy diagnosis to cope with at any age. Of course, as we learned through Jessica’s story, the need for pain management is very real and prescribed painkillers help with chronic pain.
Are there enough patient resources available to help pulmonary hypertension patients better cope with their diagnosis and chronic pain? Would medical cannabis help aid in reducing opioid painkiller use? Medical cannabis is thought to be less addictive than opioids, and CBD strains contain less THC (the psychoactive ingredient) meaning there is little to no high associated with its use. (Please check back for the second installment to read about pulmonary hypertension patients who have used medical cannabis for chronic pain.)
If you or a loved one are struggling with depression, and/or drug abuse, please get help.
• Open up to someone (like a friend or family member) who you trust.
• Let your doctor know you’ve been abusing your painkillers so you can both work toward a plan that will help manage your pain without putting you at risk.
• Be open with your doctor about your depression. Chances are they have treated many patients in similar situations and may be able to help guide you in a better direction for help.
• Seek counseling. Find a safe space where you can discuss your worries, concerns, and any addiction problems freely with a trained professional. They can help coach you through traumatic experiences and help give you the tools to better cope with the stresses in your life.
For more information about dealing with depression and/or drug abuse, please visit http://www.halfofus.com/
* All names in this column were changed. * I would like to thank the pulmonary hypertension patients who bravely opened to me about using prescription pain killers, and for sharing their story with me.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Pulmonary Hypertension.
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