Nickie’s Nook: Oils and Books

I’ve mentioned my chronic pain before, but I’m not sure about how fully I’ve explained it. my main pain condition is called Complex Regional Pain Syndrome (type I). This was formerly known as Reflex Sympathetic Dystrophy and since I was diagnosed back when that term was common, I tend to go between calling at RSD and CRPS. Because November is CRPS Awareness month, I want to go into more depth regarding what CRPS is and how it effects me. This post will also touch on some psychological effects pain has caused me which might be triggering to some.

Why “Color The World Orange?”

Color the World Orange month started because the Crps awareness ribbon is orange. This is appropriate because CRPS is a burning pain. It’s almost impossible to describe accurately and in a way that helps people truly understand the agony we experience on a daily basis. The closest metaphors I’ve come up with are the following. Imagine your worst sunburn times a billion, but coming from the inside out instead of the outside in. But it’s not just skin deep. It’s effecting you from the deepest part of your body. It’s different in some ways because instead of heat being the most painful, cold is actually worse for many of us. For me, taking a warm bath is more soothing. In fact, I can’t go into a pool if it’s below around 88dgf. Ice is something we’re discouraged from using and I can rarely use it even on my head during a migraine. Another way of describing it is that it’s like that cold burn you get when you put your hand or foot in a bucket of ice water.

CRPS is usually caused by an injury or infection. The most important symptom is pain disproportionate to whatever caused the original pain. For example, my pain probably came from tendinitis or something similar, but the pain was much more severe than expected for tendinitis. Other symptoms include swelling (my feet look like a pregnant lady’s). There can be color changes in the areas affected, my foot sometimes turn colors including red, blue, purple or white. The area in pain changes temperature, in the beginning, it’s often hot, and later becomes cold. That’s why I gave the burning cold of ice water as an example though that’s not exactly like our experience either. There can be changes in the hair or nails, either brittleness or thickness in the nails or hair growth where you wouldn’t expect it. One of the worst symptoms other than the pain is sensitivity to touch. For example, the lightest breeze can be extremely painful. Just getting a well-meaning pat on the back or hug can be extremely painful too. And you can also get muscle spasms where your muscles tighten up or dystonia where your limb contracts and becomes hard to move.

The above is just a summary of many symptoms we can experience. But because people with CRPS often develop other conditions, we deal with much more. For more in-depth info, check out the RSDSA website.

because CRPS is so rarely discussed and poorly understood by many of the medical professionals out there, it’s hard to get a diagnosis and get propper treatment. If you don’t know what it is, you can’t get the right treatment. The thing with CRPS is that the sooner you get treated propperly, the more likely you’ll get relief and be able to get back to a better quality of life. I wasn’t diagnosed for 6 months, but compared to many stories I hear from other CRPS warriors, I’m lucky to be diagnosed so quickly! That said, those 6 months of people not believing me because they didn’t see anything on the x-ray, implying that it was not real pain or that “it can’t be that bad” were awful! As a 16-year-old, I just wanted to feel better, be able to do things I’d been doing before like blindness activities like adaptive dancing, beep baseball and participating fully with my youth group. Feeling like my pain wasn’t real was horrible. Getting a diagnosis, even one that really sucks was a relief because at least one doctor believed me.

Unfortunately, CRPS treatment isn’t like treating a sprained ankle or broken arm. CRPS takes a whole team to treat and even then, treatment doesn’t mean cure and it doesn’t mean you’ll be pain-free. I’ve been in pain for 20 years now and it’s not just in my foot where it started. I feel pain pretty much everywhere.

The thing with CRPS is that it’s basically like an injury ticks off the nervous system and causes this whole nervous system wide over-reaction. This is how I would explain it if you and I were sitting down for coffee somewhere and you asked me. Imagine you sprained your ankle, your ankle swells, turns colors, maybe gets hot, hurts like hell and you want to smack anyone who touches it. That’s all thanks to your sympathetic nervous system (fight, flight or freeze). All of those things are protective to either help the injury heal, or in the case of pain and touch sensitivity, to keep you from re-injuring the ankle while it’s healing. But when the ankle heals, the pain, swelling and discoloration typically go away because the nervous system calms down. In CRPS, the nervous system just keeps ramping up.

But let’s go back to my personal story. when I started out with my CRPS diagnosis, I got nerve blocks to calm down the nerves, worked with physical therapists to build strength, and did what I could to cope. I went into a brief remission with the help of a licensed acupuncturist, but that didn’t last long. So when my CRPS came back with a vengence, I had to take meds and try many more tools. The pain just kept spreading and getting worse. After about 6 years of this hellish condition, I couldn’t keep up with my studies in college and I became suicidal. I just wanted out.

In a period of 2 years, I have 5 psychiatric hospitalizations due to suicidal thoughts or attempts. I finally found Dialectical Behavioral Therapy. This helped me build skills to deal with the depression and anxiety I developed because of the pain. I won’t go into the whole explanation of DBT, but basically, it focusses on building a life worth living. I learned to see that RSD sucks and I can still have a life that’s worth living. Maybe I can’t do everything I want to do, but I can do what I can to make the best life possible.

There were many times I didn’t think I’d ever be able to live independently. We thought I’d always need to live with my parents and even that I might need a group home or other facility because of the physical help I need. I didn’t want that for myself, and it’s taken a long time to find the services I need and get them in place. I’ve had to work to learn skills like pacing and energy conservation. And of course finding the right doctors has been vital. But even though i didn’t think I’d ever live independently, I’m now doing so. I still have days where I’m at a 10 out of 10 on the pain scale. I still consider CRPS to be the condition from hell.

In many posts on this blog, you’ll get an idea of the things that have helped me. None of them works in a vacuum. I take medication, but without the other skills, techniques, supplements, oils and therapy, it didn’t do enough to give me a tollerable quality of life. Nor would psychotherapy be enough on its own. All of these tools are part of my toolbox and I’m often adding more tools, adjusting others and finding new ways to use them as a whole.

To those who have CRPS, I’d like to say this. Keep fighting! I have many days when I don’t want to be here. I feel like I’ll never get any relief and like none of my treatments are working. I still have suicidal thoughts I have to cope with skillfully. But I also have days when I get to go hang out with friends, make some fun DIYS or just sip a latte. You will find joy again. You’ll find something meaningful to add to your life. For me, that’s helping others with pain or mental illnesses. I’m working to become a peer support specialist and I’m already a wellness advocate. The days when I can help someone else give me a meaningful boost.

To those who don’t have RSD, please spread awareness of this condition. Please believe people when they say they’re in pain. Know that your kindness in helping us when we’re struggling means more than you can know! I’ll be writing other posts on CRPS, so if you have questions, feel free to ask!