Pain is a touchy subject, at least for people who experience it chronically. Thankfully the human body has an elaborate pain alert-system built in, which most of the time is a lifesaving feature. Your body hurts, you know something is wrong, and to the best of your ability you do whatever needs to be done to cure the pain. However, what happens when there’s nothing that can be done to cure the pain? What happens when you wake with pain, you live with it, day in and day out, and your brain is constantly telling you something is wrong, when the very alert-system designed to save your life is constantly sending for help? The truth is, there is no single answer. Everybody handles their own chronic pain in their own way, as they should. One person’s pain, is certainly not another’s.
While pondering this blog post I was thinking back over my life to see where pain fit in and I realized a couple of things. One is that I’ve always experienced pain to some degree. Ranging from headaches, to stomachaches, to body aches. I believe I had fibromyalgia as a child, however it was misdiagnosed as juvenile arthritis. Curiously the main thing that brought on a pain flare as a child was too much sugar and stress, which curiously in adulthood is the same thing that brings on pain flares. My point in sharing that is that I’m well versed in pain management techniques. The second thing I realized is that pain management is very personal. You know who asks me how I manage my pain? Health care professionals. You know who doesn’t ask? Other people with chronic pain. Don’t get me wrong, there are people who make posts or ask the group in desperation but by and large we all respect that it’s a personal journey.
So why is chronic pain so personal? Well, can you imagine if someone said to you, “Hey I’m sorry your parent passed away. What are you doing to manage your grief?” A friend wouldn’t likely casually say that (unless deeply worried about you), but a therapist would. Very similarly a friend wouldn’t ask what you do to manage your pain, but a health care professional would. Although, I can’t speak for everyone, I can say that for me, it’s personal because it changed my life completely and how I’ve chosen to deal with it feels personal to me. Mostly, though, I think it’s personal because discussing it dredges up this awful grief of all that was lost. We spend so much time just trying to get through each day, we certainly don’t want to have to justify ourselves or our decisions to other people.
What are you doing to manage your pain?
It feels very accusatory and I’ll explain why. I do realize it’s a very standard question, but when it’s asked repeatedly at the same office it becomes frustrating. First, a little back story so this all makes a little more sense. My late mother chose to handle her physical and emotional pain with drugs (opioids) and alcohol, before you form an opinion let me just say I respect her choices. She was goodness personified, incredibly witty, and had an endless heart. Unfortunately, she was also misdiagnosed, in chronic pain, and left to her own devices. Again, people handle the best they can and that was her best. However…she left this world at 50. I do not want to leave this world in two and a half years so I’m choosing not to choose those methods. (This is NOT a slam on opioids, keep reading) So, when a health care professional looks at my medication list, seemingly disappointed, and asks so WHAT do you do to handle your pain I could share the above about my mom with them, but they don’t really care and they would just judge me for that too. So, I tell them I deal with it. I could explain my alternative methods of pain relief, but they don’t care about that either. They assume if you’re in that much pain, you’d be medicating. Health care professionals simply do not seem respect alternative methods of pain relief, at least the ones who have been placed in my path. They seem to need you to justify your pain with a prescription. Just to clear this up – I have taken opioids in the past and I have also struggled to stop taking opioids in the past. I don’t need that on top of this, I just don’t.
If you’ve been managing pain inside your body for more than forty years, like me, it’s likely you’ve tried just about everything. Truthfully before I contracted CFS my pain was well-managed with a healthy lifestyle. CFS has changed the rules, as I cannot exercise, nor do yoga, like I once did so those techniques have pretty much gone out the window. If you’re wondering what I do now, here are the techniques that are currently helping take the edge off:
- Music – I was skeptical at first, but I’m willing to try drug-free pain relief alternatives, so I gave it a whirl. I’m pleased to say after listening to music daily, it really does provide a rest from the pain. Here’s an article explaining a little more about the studies.
- Painting – This started as a fun hobby but I find myself so lost in the work that for a while my brain gets a break from thinking about pain and it really likes the relief. Others who use this technique often paint what they are suffering but I find making fun paintings to more pleasurable. Here’s a little more about art therapy.
- Meditation – Honestly I am not as routine as I would like to be with this one, but I know it helps. Mindful meditation has shown in brain scans to reduce chronic pain. Take a look.
- Self compassion – So if you read my blogs you know that I started this chronic illness totally sucking at self compassion. I took a quiz in the beginning and I completely failed it. You know what’s crazy? I had no idea! Showing others compassion has always been something that has come very easily to me but I had never turned that compassion back around at myself. Oops. Well since learning about all that I began these exercises where I would scan my body, acknowledge the pain, and then in my head talk to myself as I would someone else in that much pain. Things like I’m so sorry you are hurting, you don’t deserve this, I love you, and I explain to my body that these aren’t warning signals I need to heed. The pain will not kill me, and it’s okay to let them go. And low and behold it helped. Oddly I have trained my brain to dissociate pain to some degree. Not helpful in some situations but very in others.
- Aspirin/Ibuprofen – If the pain is writhing pain I take aspirin or ibuprofen. I take small amounts because my body seems to negatively react to absolutely everything. Have you seen the studies showing that ibuprofen is just as effective as opioids? Interesting read.
In closing, I’m thinking if you’re still reading you’re probably following along and so here’s an update on my Bubba (son’s nickname). He saw a great doctor yesterday. The leg/vein pain the doctor suspects was a blood clot that has moved on. The doctor says this happens, there’s nothing you can do about it and hopefully it won’t happen again. Doctor says that insurance will not cover the surgery to block varicose veins, it runs between $6,000 and $10,000 dollars and it may or may not stop the pain. He also thinks maybe he has neuropathy, this would explain the tingling in his hands and feet. A bunch of labs were run and so far, things are looking pretty good. Time will tell I suppose but for now things are okay, it still hurts a little but much, much less. To think he had a blood clot scares me to places I don’t want to go, but I’m so thankful that today he is okay. Thank you for all the kindness you’ve shown in expressing care and concern. If you met him you’d see why he’s my favorite (one-and-only) child.
Thank you for reading along. Hoping today is best as it can be for you. I’m in a flare today but am using this blog as a way to escape the pain and absolute wretched feelings in my body right now. I’m thankful that I’ve energy to do so, later might be another story, but fingers crossed that’s not the case as I’ve got to sneak in some painting therapy. Speaking of painting therapy below are a few more of my little watercolors.