September is Pain Awareness Month. Pretty much everyone has experienced pain at some point in their life, but for some folks with chronic illnesses, it’s an everyday juggling act to try to put on a “normal” front and live day to day. In the US, we have a massive opioid epidemic due to people trying to eliminate pain (physical and emotional) that spirals into rampant addiction. Recently, Purdue Pharma was found guilty and levied with a massive $10 billion fine due to its participation and exacerbation of the opioid crisis. In light of these events, the federal government has cracked down on physicians prescribing opioids. While that has a benefit, many doctors don’t offer their patients an alternative for their pain management.
It’s important to understand that pain looks different across the population and this is especially true amongst women with chronic conditions. I personally struggle with endometriosis, which is where endometrial tissue is deposited outside of the uterus. This creates adhesions around the uterus to its surrounding organs: the rectum, ovaries, fallopian tubes, and intestines, to name a few. My pain presents as appendicitis-like symptoms, bladder infection pain, and chronic indigestion. I also struggle with bloating that fluctuates during my cycle and irregular menstruation with pain/cramping. Some women have pelvic pain with intercourse, infertility and a variety of other symptoms. I was 31 years old before I connected the dots about what this could be; despite an ER visit, several MD appointments with diagnostic tests such as pelvic ultrasounds and repeated CT scans...all within a 10 year time-frame. The western medical community has done little to help me with my pain and other symptoms. I don’t say that to criticize them, but to help people to realize that the diagnostic route is not simple or easy and can take several frustrating years. Women are more likely to be dismissed in their complaints of pain and this has been repeatedly substantiated in research. I’ll direct you to a Washington Post article that describes several different ways that women are harmed by gender bias in the medical field.
I have asked several women with chronic conditions to tell us their stories. These are women who kept trying to find a solution to their pain and other symptoms after they had been repeatedly dismissed, misdiagnosed, or received the wrong treatment. Graciously, three agreed on the terms of anonymity.
1. “Over the last seven years I’ve had 23 knee surgeries, some major and some small. Recovery time for each lasted anywhere between three days and six months. In a few of these years I had multiple surgeries overlapping recovery time from the previous surgery. In 2020 I am having a full replacement on my right knee and a partial replacement on my left. I am also being tested for rare genetic conditions. I am 35 years old. My pain is daily and consistent and each step is painful. The pain can be sharp and intense and what I imagine being struck by lightening feels like. I have been living with knee pain for a long time and have almost become accustomed to it. I do not take any daily pain medication. In the past when I have, I would end up hurting myself more because when I wasn’t aware of the pain I was also not aware of my limitations. The knee pain has just become a part of my life. I’m still active and lead a busy life with a full time job. I still exercise because when I’m moving or distracted it helps. Like they say: 'a body in motion stays in motion.' This is my mantra I repeat to myself daily.
What I was not prepared for was how the rest of my body would react. My body has learned to compensate for my knees. The rest of my skeleton works overtime to avoid bed-ridden days. Every joint is strained. My neck, hips and ankles swell. My shins ache and my shoulders tire and pop easily. My periods are unpredictable and my bowel movements are sporadic. I also notice that I have poor blood circulation. Some days I sit to concentrate and try to listen to my body and assess the damage. I try not to move and, like tracing a finger on a map, I concentrate on each inch of my body. There are good days and bad days and I know that good days are on my own sliding scale. Nights are hard. Sitting still, laying and sleeping are challenging. Sometimes I have days of depression. Early on I had days of self-pity, but I’m past that for the most part now. I get angry when I have to stop what I’m doing to ice. I also get emotional when I have to schedule life around how my body is feeling that day. I have to mentally prepare every day to get out of bed. I must plan recovery days before entertaining the idea of an outing or vacation to ensure I have enough time to get back on my feet before returning to a normal routine.
By far, the hardest days of my life are the ones where I don’t wake up in any pain. When I open my eyes and I don’t have to immediately adjust my body or have to fight with pain. These mornings I don’t have to start with small stretches and movements to prepare my body before I even sit up in bed. I feel weightless and peaceful. For a while I get to feel more like myself and I get to bask in what a life without pain would feel like. Reality soon sets in. I tell myself that I have a choice: I can lay in bed and enjoy it for as long as possible, taking a “well day” like other people take sick days. However, life awaits and it’s not a true reality. When I put my feet on the floor and stand, I can feel the weight of my body in every joint. I start my routine and I am once again the Tin Man with his oil can.”
2. "I have experienced chronic lower right quadrant pain for about 9 years due to intestinal structure abnormalities that hinder digestion. Pain tends to fluctuate, and can be relieved or at least lessened to a degree with massage/pressure to that area, likely due to breaking up of scar tissue and aid in digestion. I also have nerve pain due to Lyme disease that has been constant since April '19, primarily in both lower extremities and right upper extremity, occasionally all 4 limbs. This is probably more frustrating to deal with on a daily functioning basis than my digestive tract pain because it is hard to function physically and mentally as a pediatric therapist and as a mom with continual burning/pins & needles feeling all over. Chronic pain has taken a physical toll and huge mental health toll. I am grateful that I don't "look sick." I'm not trying to whine or be negative. I am grateful that other than obvious changes to my gait (how I walk), I look "fine" - I mean tired, but that's my baseline with three active kiddos. One of the most frustrating things about this journey with Lyme is that despite how I outwardly look, my baseline right now kinda sucks. Pretty severe nerve pain in my legs and arms, a max of maybe 30-60min of activity before I am completely wiped out (some days sitting upright without support does me in), weakness with my legs taking turns giving out, and straight up fatigue and dizziness. Add a slew of other symptoms that fade in and out, and that's my day to day."
3. "All-consuming. Nerve-wracking. Physically and emotionally draining. Disabling. This is what comes to my mind when I think about the chronic pain I've experienced. And when you've experienced pain that brings you to your knees or completely flat on the floor, makes you hold your breath, clench your teeth, and maybe even scream a little bit (or a lot), you learn to flex your mental strength; because when all else fails, your mind just might be the one thing that helps to bring you back to your feet and reminds you to breathe.
I can't remember the last time I went a full day with zero pain. It must have been about 15 or so years ago. Want to know the silver lining of it all? My body awareness is off the charts! I know how I can and cannot move and what will happen if I make a movement I shouldn't. I know what is out of place, is stuck, or tight when I have a certain type of pain in a specific location. I know the proper names of most muscles within my pelvis that only PTs, doctors, or exercise specialists are familiar with. I can walk into my appointments and 95% of the time tell my PT exactly what the problem is and how they can help me resolve it (though my body can be stubborn and doesn't always cooperate). I learned to trust my gut feelings even when my mind is uncertain because I've really regretted not doing so multiple times in the past. But those internal signals that we cannot and should not ignore can teach us so much - mind and body alike.
It took several years and was a slow and steady pace, but I finally got the upper hand to my pain and learned not to allow it to control me. Instead, when it creeps up, which it does on a daily basis for short periods of time, I know what it means and how to handle it. It's not nearly as severe as it used to be, but of course, it's still unpleasant. And annoying, too!
My pain also used to give me a tremendous amount of fear. It gave me depression. It took away precious time from my family. It made me dependent for a few years. It gave me PTSD. I'd be lying if I said I don't worry that all those things could happen again. There are rare times when my pain feels a certain way that is so reminiscent of when I was at my absolute lowest point and all of a sudden my anxiety kicks in uncontrollably and I wonder...what if...? That's when I just have to remind myself how far I've come, that I'm in a completely different place now, and that these physical and emotional feelings will pass. Because I will do everything I can not to allow it to become all-consuming, nerve-wracking, physically and emotionally draining, or disabling ever again."
Knowing some alternative treatment options is critical. Cannabis is still illegal in many states as a form of pain relief or method of managing the anxiety of having a chronic illness, and chronic use of NSAIDs has been shown to create renal and cardiovascular dysfunction. Over the past two decades, several studies have shown the effectiveness of physical therapy for patients with not only acute pain but chronic pain as well. It has been beneficial in allowing people to return to work sooner, have a better quality of life, and learn how they can best manage their pain without opioids. As early as 1997, the NIH has found acupuncture to be an effective tool in chronic pain management. I credit my acupuncturist in helping to manage my endometriosis symptoms, especially with bloating and menses regulation. Massage therapy is another important tool in chronic pain management and is usually what people think of first, other than pain medication. I encourage those with chronic pain and autoimmune diseases to see someone on a regular basis to help with pain management and to enlist them as an ally. We as professionals can talk to your medical doctor on your behalf and can make recommendations about other resources to help with the management process based on our experiences. We also will probably see you more often than your general practitioner and can better track your symptoms, progress or changes in symptoms.
I want my patients to know that even if I can not feel or fully understand your pain, I will listen to you and do everything in my power to help you manage and find some relief. I also want you to know that I’m right there with you. I have been overlooked and told that I need to lose weight or “to get some more sunshine” when the hormone fluctuations and pain were particularly bad. This is by a primary medical provider who would rather use her twenty minutes of time with me to belittle me and refuse certain tests that I, a highly trained medical professional, requested to dig deeper into diagnostic solutions.
I stumbled across an article on NPR about how some people portrayed their pain in art form along with their description of their pain. I feel that it is very relevant to this particular blog and am attaching it below:
As always, feel free to contact me if you have any questions or want to share your pain experience. No one should feel alone or unheard and navigating the journey can be hard. Thanks for your time reading this blog, I know it was a long one!