How much of my life am I going to dedicate to managing pain?
This is the question that ran through my mind last week as I laid on a therapy bed for what felt like the millionth time, while the physio poked needles into my forearm in an attempt to relieve some of the tension and pain (it was a nice change from the needles in my shoulders and lats). Once that question came to mind, I did the thing that my counsellor and my husband have told me time and time again not to do: I spiraled.
From how many treatments I’ve tried to how many years I have ahead of me to keep my pain under control—I went there. But since my pain isn’t going anywhere and I’m not planning to slow down my activity level anytime soon in an effort to help it, pain management is just going to have to be part of my life. And while it’s not something I like to complain about too often, pain after spinal cord injury is a real and debilitating issue. Not only the pain itself but also the loss of time and money to the treatments can be a huge burden. Because of that—and my own little mental spiral into pain management—I wanted to outline the things that I’ve tried and some of the costs associated with those things in order to bring a little awareness—and maybe to give somebody else who is suffering a new idea.
First of all, you may be wondering what kind of pain I deal with. There are two types: the pain above my injury and the pain below. The pain below is called neuropathic pain which is something I’ve talked about in detail before. But the pain above my injury is all musculoskeletal and that is the pain I spend the majority of my time trying to manage.
From my hips to my head, everything aches. My lower back and ribs give me a lot of trouble and my spine around my injury site is usually sore. My hands, arms, shoulders, lats and neck all take their turns causing grief and I get headaches 3 to 5 times a week on average. Now that you have the speed-dating run-down of the pain, here is how I have attempted to manage it.
After my injury, I was on a high dose of Hydromorphone. While it certainly helped, I didn’t want to be on those pain meds forever. I weaned off of it 6 months after my accident and never looked back. Some people remain on prescription pain killers and that is totally ok! It just isn’t what I want.
Massage from a registered massage therapist made a huge difference for my pain. For a long time I went twice a week—1 hour each time—to help keep it under control. But my schedule was getting crazy and something had to give. I cut back to once a week in January and most weeks I wish I could fit in a second appointment. Cost wise it is $110/session so without insurance, I would not be able to keep this up.
Over the last six months I’ve been going to physio to do dry needling and other massage type treatments. The dry needling really helps release the super tense muscles but man, it hurts in the process! With my schedule I can only manage to go every 2 to 4 weeks but I could easily go every week for different parts of my body. A 30 minutes session is $84 so, again, without insurance this incredibly beneficial method of pain management wouldn’t be possible.
This one is relatively new and my massage therapist introduced me to it. She does it for me occasionally but I bought a set to use at home as well. I don’t generally let them sit on my skin to give me giant hickey-style circle bruises. Instead, I use lotion and move them around to help release mild tension. A four-pack was $30 on Amazon and it’s an easy thing to do in the evening while watching Netflix.
Some people swear by it for pain. I tried a cannabis oil with the THC removed and I don’t remember if it helped my pain significantly but it really helped my spasticity. However, it also upset my stomach—a lot. I have no issues with people deciding to smoke pot, but personally I have no desire to smoke it, vape it or take it in any other form that would result in me getting high. I have recently been introduced to a cannabis balm without THC that I’m pretty excited to try. I’ll have to keep you posted on those results. The one I’m trying sells for $60.
Heat is a big one that I try to take advantage of. We have a hot tub that I use a few times a week and I also have a really good heating pad. I use over the counter pain medication like Advil as well as topical creams like A535—sometimes I will get a prescription topical to help take the edge off. Also, I will often take advantage of my husband’s love for me and ask him to massage the things that really hurt. And, like all things in life, a sense of humour, a good attitude and letting yourself cry about it every now and then helps too.
By far, the most beneficial pain treatments for me have also been the most expensive and the most time consuming: massage and physio. However, I’m also incredibly thankful that I can access these treatments because I can’t imagine where my pain level would be without them. It is daunting to think of the decades ahead of me in terms of pain and pain management—all of the scheduling and all of the therapy beds, massages and needles—but if I continue to take it one appointment at a time and learn to rein in my habit of spiraling off into the abyss of anxiety, I think I’ll survive.
Now I want to know, what is the most effective form of pain management for you? And, is cost and/or time a prohibitive factor in dealing with your pain?