I was recently told November is CRPS Awareness month. For the record, it’s failing, since almost no one has heard of it. However, I’d like to share something about it. In the last year, I’ve gotten some comments about there being no reason I shouldn’t be able to write more with my disease, after all, it does allow me to sit down, which is all you need right?
These people are not giant assholes like this question or statement implies, they are just uniformed. In March of this year, I was still being treated by Dr. Wonderful who told me I needed to change how I thought about my CRPS. He told me I needed to stop thinking of it like other pain conditions, because it isn’t. Lupus, fibromyalgia, even diabetic neuropathy are similar to some degree, but they aren’t similar enough to use for comparison purposes.
All of these diseases get progressively worse and they all cause pain, so I was constantly thinking of CRPS like these diseases. He told me that CRPS is not like lupus, because once you have lupus, you may have it forever, and it’s hard on the body, but it doesn’t spread and for most people lupus hurts less than CRPS. How do you discern something hurts less? Medically, it’s about physical symptoms. Most people with lupus do not have to worry about their pain getting so high they might pass out. I do. I have had more nose bleeds in the last year than in the last two decades combined, because my blood pressure gets high and stays high, eventually causing a nose bleed. These nose bleed episodes on their own don’t constitute a massive problem, but the cause does. Every time my blood pressure gets that high and stays that high, it runs the risk of damaging my heart and my brain. Why does it get so high, because my pain gets so high. And something I’ve only learned in the last six months is that it is also wearing out my heart. Since I was 15, my resting pulse rate has averaged 100 beats per minute. Many thought it was my anxiety and dismissed it. But my hands and arms have hurt since I was 15. Now that my hip also hurts, it averages 120 beats per minute at a resting rate. I can’t imagine what it would get to… well say the night I walked to Arrowhead and then climbed steep ass stairs to the get to seats because that was what my nephew wanted for his birthday. I was in so much pain by the time I got to our seats, I thought I was going to puke and/or pass out. I walk stairs every day, but they are normal stairs not the steep stairs that proliferate stadiums. Regular stairs don’t bother me all that much. But those stadium stairs were like being slugged by a sledge hammer on that hip.
Dr. Wonderful told me I need to think about CRPS as if it were cancer. Because CRPS spreads, it moves to different areas of the body, causing extreme pain when it does. For many years, I was able to mostly deal with the pain in my hands, especially during the winter. It was bad, but not unbearable. When this disease spread to my hip, it became unbearable. And at 38, my body is getting older which means more issues with cartilage damage, tendon damage, nerve damage, so today it’s my hip and forearms and hands, but next year it could be my hip, forearms, hands, an ankle, and the shoulder I had to have surgically repaired. Because as I age and these small damages accumulate, it’s going to spread the disease to those areas of the body.
Also, the pain isn’t an ache. For me, it feels like the bones have been broken or shattered. It’s sharp and intense. I have days I wake up and wonder if it hasn’t already spread to some of these areas, as my entire body will have this feeling that my bones have been crushed.
I have a bulging disk, no big deal really, quite common especially in women who are heavy in the upstairs lady bits department and women who played sports… Both of these apply to me. But my new pain management doctor has asked me about it a couple of times. He doesn’t want to fix it, he’s evaluating the type of pain and intensity, because even something as common place as a bulging disk, can spread CRPS to the spine. And there are days I wonder if it’s already there.
Also, like cancer, there is no set treatments. What works for Darlene or Sherry, two of my favorite support group ladies who also suffer this horrendous disease with me, are using different treatments. Ketamine works for Sherry, I think it would work for me. However, just because it works for Sherry and me, doesn’t mean it would work for Darlene. Treatment is patient dependent. There’s a list of things that can be tried, but each of them is a crap shoot. Epidurals, steroid injections, nerve blocks, electroshock therapy (like from a TENS unit), physical therapy, none of these have helped me.
The Lyrica and muscle relaxers also don’t help a ton. But I know people in my groups that are on the exact same medications and they work well for them. Dr. Wonderful told me the day I needed to change how I think of it, that I was among the unlucky ones. There is probably never going to be a treatment that works really well for me, consistently. It does happen. So I have to try to remind myself to be grateful that the opiates work. And I know people who have been on them for decades now and do not suffer addiction or other side effects to them and they are effective for them, they’ve never had to change the type or increase the dosage amounts. How? Because opiates seem to work differently for people with CRPS. I think it’s because it doesn’t make us pain free. Nothing makes me pain free. Even the ketamine simply reduced my pain, it didn’t take it away. Nothing does that. I’ve been given Dilaudid, morphine, and nubain for my pain when I’ve done stupid things or fallen because my hip didn’t get solid when I put weight on it. Not even the nubain made me pain free. For those that don’t know, Nubain is like Fentanyl, it’s considered an end of life drug used only for severe pain.
If nubain and ketamine don’t make me pain free, nothing will and that’s fine. A simple reduction of pain is all I ask for and I get it, even with hydrocodone. It helps a little for a short time. It brings my pain low enough I don’t feel dizzy or like I’m going to pass out in order to stay focused enough to work. And sometimes, sitting is not comfortable and neither is standing.
And no one with CRPS can hope to be pain free. We can only hope for small reprieves given in whatever way we can get it. And hope like hell we don’t wake up tomorrow with this horrible pain somewhere else. So when you hear I support opiate use for chronic pain, this is why. It may not be effective long term in people with lupus or fibromyalgia, or any number of other diseases, but it is for those with CRPS and for lots of us, it’s the only thing that works. Last winter, I had to deal with the first suicide by someone in a support group of mine. Since then, I’ve emotionally dealt with two others.