6 Things I Would Tell Myself When I Was First Diagnosed With CRPS/RSD

It has been 16 years now since I suffered a life-changing spinal cord injury during an epidural steroid injection procedure that went wrong, thanks to an incompetent doctor. I have been to heck and back, on a medical journey I wouldn’t wish on my worst enemy. But I have finally gotten into a rhythm – I’ve found treatments, medications and coping mechanisms that help to better manage my pain/symptoms. Sometimes I feel the best years of my life were wasted being mostly homebound and bedbound, but all the time they were preparing me for living and surviving with CRPS/RSD (and multiple other chronic illnesses). If I could go back and give myself some advice, it would be these things:

1. Calm down! With CRPS/RSD, our nervous systems are in overdrive and malfunctioning 24/7. The pain is so intense and new symptoms are popping up every day that make you feel as though your body is betraying you. None of it makes sense. The stress and anxiety (both physical and emotional) caused from all of this revs up our nervous systems even more, which causes even more pain and symptoms, which in turn causes more stress and anxiety. Thus a vicious cycle ensues. As difficult as it is, the more we can calm our bodies and minds down, the more successful we will be in making strides to manage our illnesses.

2. Accept that your life has changed. For many years, I was stuck in the “fix it” mode. I wasn’t going to be satisfied with anything less than a cure, and getting my old life back. That was my only goal. The reality with CRPS/RSD is, it is incurable. Most likely you will deal with it your entire life, and the sooner you recognize this and work towards realistic goals, the sooner your situation will improve.

One of my favorite quotes is, “Hope is the enemy of now.” What this means is that by “hoping” you’ll wake up and be cured or “hoping” your CRPS will go away in two years, you are putting faith in an unknown. I’m not saying you shouldn’t have hope or faith, please don’t misinterpret the meaning. But by believing in an action that likely won’t happen (such as finding a cure for an incurable illness), you avoid dealing with living your best life now – you avoid managing and living with your pain/symptoms now as opposed to just existing in the hope that a better tomorrow will come. I know you’ve probably all heard the quote by Bill Keane, “Yesterday’s the past, tomorrow’s the future, but today is a gift. That’s why it’s called the present.” Treat today as a gift and do all you can to embrace it, just as it is.

3. You don’t need to try every procedure, treatment, medication, etc. known for CRPS! In the beginning of my diagnosis, I couldn’t try potential solutions fast enough. You name it, I’ve tried it! But what did all these invasive procedures do for me? They gave me more pain, not to mention permanent side effects such as memory loss and the like.

As mentioned, with CRPS, because our nervous systems are so overstimulated already, additional poking and prodding will only work to stimulate our nervous systems even more! That’s not to say many procedures don’t work because they do, but make sure to take your time. Thoroughly research every treatment and procedure you do, and take stock of how they impact your pain and symptoms before moving onto the next. And whatever you do, don’t ever let anyone talk you into a treatment with which you are uncomfortable. It is your body, and oftentimes with CRPS the patient knows more than the doctor anyways.

4. Don’t let the pain control you! This is a big one. For years, I heard the term, “there is a difference between living with pain and suffering with pain.” I never quite understood what this meant but I do now. Pain is its own animal – it will take and take all you let it take. Viewing the pain as something that simply “is,” and working with it, as opposed to fighting it every step of the way will go a long way towards managing it. This is easier said than done but when your pain is screaming at you to give it attention, acknowledge it – but don’t feed the beast.

We have a tendency to cry, scream, cuss and whatever else we do when pain reaches high levels, but all that does is makes us focus on it more! Next time, try calming yourself down, distracting yourself with music, TV, meditation or whatever else helps you divert your attention to something else. The good news is, the high intensity levels will eventually pass into medium and lower intensity levels again. Knowing you have gotten through the hardest levels of pain before will help you mentally and physically get through them time and time again. Soon you will build up a strong inner resistance to the pain and will learn that you can conquer it – even when it’s dying to beat you.

5. Treat your general health as well as your chronic health! One of the biggest breakthroughs for me personally was being treated with hormone replacement therapy. I didn’t know how much of a difference it would make with having my hormones in balance but it made a world of difference in managing my pain/symptoms. The same goes with the rest of your metabolic, endocrine and general health. If you don’t have a healthy underlying body and mind, you can’t effectively treat CRPS or any chronic condition. Dr. Bronner Handwerger has a much better explanation of what this all means in a CRPS/RSD presentation for RSDSA – the video is long but worth watching.

6. You will be OK. When you are first diagnosed with CRPS/RSD (or any devastating chronic illness), it is difficult to imagine how you are going to get through it. Your body and mind are going through such trauma that you can’t imagine coming out on the other side. High intensity chronic pain can be managed and in time you will find what works best for you. The key is to attack it with a multi-faceted strategy – and be aware you will need to go through some trials and errors before you find answers. Every patient is different – what works for one may not work for another, so don’t give up!

Getty Image by kieferpix

Find this story helpful? Share it with someone you care about.

Related to Complex Regional Pain Syndrome

Empty movie cinema seats with blank wide white screen

Why CRPS Prevents Me From Going to Movies

I want to go to a movie theater. I want to have a date night out with my husband, eat popcorn dripping with artificial butter, and spend two and a half hours watching a fast-paced action movie on a screen so large I become immersed in the story. My last movie theater outing was four [...]
17 Things People With CRPS Do to Hide Their Pain

17 Things People With CRPS Do to Hide Their Pain

Have you heard the saying, “You never know what others are going through, so be kind?” That’s true of anyone with a chronic, rare condition, including people with complex regional pain syndrome (CRPS). According to the McGill Pain Index, CRPS has been identified as one of the most painful conditions known. The pain includes burning [...]
A picture featuring makeup on a counter.

Why I View Makeup as War Paint That Prepares Me for My Medical Battle

Walking into the unknown with an appearance to strike fear into the hearts of adversaries is a time honored tradition. From horned helmets and fearsome metal suits to spiked hair and body paint, preparing for battle has always included ritual preparation. A few moments where appearances transform average humans into fearsome warriors. I might not [...]
illustration of the CRPS beast

When Pain Becomes a Life Partner

I have three partners in my life, each adding their own version of strength to my life. One, is my husband, who adds love, hope and teamwork. The second is my service dog, who adds independence, bravery and new-found confidence. The third is full body intractable chronic pain courtesy of complex regional pain syndrome. That one is a much [...]