Monday, September 16, 2013
This link is on the Ehlers Danlos National Foundation website but it is not specific to EDS and could be used by anyone who lives with chronic pain and frequent bouts with acute pain.
I have pain. I have a lot of pain. Ehlers Danlos brings about incredible amounts of pain as well as a genetic disposition to having most painkillers and anesthetics be mostly ineffective. This means no amount of OTC painkillers will do any good for my pain, many prescriptions will be at harmful levels to do any good, narcotic painkillers are ill-advised because they worsen my non-stop migraines, and having any medical procedure is more complicated because they will be unable to numb local areas effectively (at the dentist's office I need a triple dose and more after 45 minutes) and general anesthetics must be administered at higher doses and for longer periods to be effective (nothing like hearing "let's get started" followed by "she's still awake" while your arm, neck, and chest are burning from the medications). In addition to chronic pain, the pain of frequent joint dislocations and subluxations, falling from episodes of losing consiousness (POTS/orthostatic intolerance/dysautonomia), and organ displacement from the connective tissue not holding them in place, is acute and incredible. (That is until the dislocations have happened hundreds or thousands of times and the nerves are destroyed so you can't even tell they're dislocated, leading to a whole slew of other problems.) Chronic pain plus frequent incredible acute pain plus a lack of medical options to control the pain equals a very difficult situation. You can see why the diagnosis of fibromyalgia makes me roll my eyes - no fibromyalgia pain even touches the pain when I have a joint dislocation.
At the same time, no one wants to constantly see us in pain. After awhile you learn to hide the pain and act like it's not there because people will walk away and ignore you if all they see is your pain and never the you they used to know. When you learn to hide the pain then people assume you're not in pain. When people and doctors assume you're not in pain then they don't want to believe that you need their help. It becomes a vicious cycle of never knowing when you're supposed to hide your pain and when you're supposed to take off the mask and show others what you're dealing with. The most ironic part is people who can dislocate their joints at will are frequently asked to do so in social settings as party tricks, making the pain even worse yet it's a sick pleasure for too many people.
I've learned to co-exist with my pain as much as possible. These 5 steps are things I've already done, but the reminder is helpful. I understand the cause of my pain, I understand that there are few treatment options, and I understand that I will have to live with increasing pain for the rest of my life. I've accepted that my pain is a part of who I am and that nothing can be done to completely relieve my pain. I know that my stress levels increase my pain and my pain increases my stress levels so trying to calm myself as much as possible will be helpful, so I have specific breathing techniques for specific situations and I've finally found a medication that - in me - works to slow my adrenaline release and thus ease my stress response. I've had to relearn what it means to live by re-balancing my life between what is most important: my life and my health, versus what must be done, and what I can and can no longer do (I still push myself too hard, but that's by necessity). I will forever be working on the coping step, as for many years I had no way to cope with what I was dealing with, so now I'm trying to learn. I frequently distract, but because of my ability to multi-task it's hard to completely distract. I'm hoping to soon start trying some mindfulness techniques, such as eating a mint like the article says, to refocus my mind away from my pain.
I hope this list helps others. Whether you have acute pain that lasts a few days or chronic pain, sometimes the mind is more powerful than medicine.