Written by Nicole C. Shelton, J.D. for the RSDSA blog.
How/when did you develop CRPS/RSD?
In 1990, at the age of 15, I went in for what should have been a routine arthroscopic knee surgery to repair a torn meniscus. When I went in for my two day post-op appointment, the area below my left knee, literally the entire leg, foot, etc., was ice cold, swollen and shiny. At that point in time, RSD was not well known (I think the statistic I was given was that I was one in 500,000). But, my surgeon as a kick-butt surgeon who just a few days before surgery read an article on this new phenomena.
He explained that the nerves in my knee were telling my brain that anything below my knee essentially didn’t exist. While that may have been a reasonable explanation at the time, we know a lot more now! My recovery should have been six weeks; but, due to the RSD, it was six months. I was put on Procardia since they thought a blood thinner would help but we really didn’t know how to address the pain, swelling, redness and shininess.
Even though my surgeon’s explanation and treatment of the RSD was not what we do now, I am forever grateful to him for having read that article about this “new” phenomena. I would have been misdiagnosed and likely lost my leg below the knee. I’m relieved that now it is unusual to find a doctor who doesn’t know about CRPS. An ER doctor friend of mine said CRPS is part of one of their rotations in med school. We have to have medical providers that understand CRPS/RSD is real, how to treat it as best they can, and how to be empathetic to the Warriors who are plagued by it.
What has daily life been like since your diagnosis?
So, I have to frontload the readers that my CRPS/RSD is not like most of what they are probably experiencing. For me, RSD still is the more accurate description of what I experience: my pain flare ups and cycles are a response to an injury, not something chronic. I attended a CRPS fundraiser in NYC a few years back and was shocked by how impacted some people are by their CRPS. I do not know if anyone else experiences RSD as comparatively mildly as I do (I certainly haven’t met anyone yet!) but I hope if others like me are out there, this helps!
Up until a couple years ago, my RSD has only occurred when I have an injury: a sprain, a broken toe, torn ligaments (hey, I refuse to let go of my active lifestyle so injuries happen!). I have had 5 surgeries in my life, all due to injuries not the RSD, and am absolutely vocal about my RSD. I make sure surgeons are fluent in CRPS/RSD and have now learned that nerve blocks prior to surgery really help. I can always tell when I have an injury that needs rest or attention because I feel that high level of pain, the swelling is disproportionate and the area gets shiny. My flare ups have tended to be intense but brief, and only in the area around the injured body part. And yes, they are like fire: sometimes smoldering embers, sometimes firestorms, it just depends on the day. There’s no rhyme or reason to how it presents nor how long it lasts.
As I get older, I do wonder if my RSD is evolving. Two years ago, I fell down a couple marble stairs (don’t do it!!). Most of the injuries have resolved, but I still have an ECU subsheath dislocation and tear in my left wrist, and now also have ulnar nerve slowing at the elbow and wrist. On two occasions since the injury, I have had debilitating all-over body pain: the first lasting a couple hours, the second lasting six hours and almost prompting an ER visit. I literally could not move because of the pain and nothing helped: I was terrified.
Thankfully, that has not happened since. However, my wrist and ulnar nerve injuries have created a “new normal” in that my wrist is constantly at a level 5 pain, and the ulnar nerve varies between a constant 5-7. Am I happy about this new normal? Heck no! After a lot of mental fighting of this new pronouncement, I decided that it was not doing me any good to hold on to the anger of the new normal (although I still occasionally have a mental, “Says who?!”). I continue to do my normal activities, but I know there is a price to pay: I will inevitably have a pain flare up that will last anywhere from a couple hours to a couple weeks, depending on the activity.
And while I feel guilty saying this for all the other Warriors that are so much more impacted than I am by this horrible thing: I refuse to give up my life for this pain. It does not own me. It doesn’t get to control me. And I will fight it tooth and nail (and have been known to give it an obscene gesture). I absolutely realize that I am so, so lucky to have such a mild form of RSD. And I absolutely give shout outs to the Universe asking it to not have my RSD morph into something worse. It is the one thing I fear most in this life.
What is one thing you wish those without CRPS/RSD could understand?
So I am going to change this one a little bit… The one thing that drives me CRAZY is when you go into a doctor’s office, urgent care or ER and they ask the inevitable question: “So what’s your pain level like on a scale of 1-10?” (yep, I just felt all of you cringe). My answer, because after all I’m there because of an injury or flare up, is “10” or “10+”.
At this point, they already know I have CRPS/RSD so what follows should not ever happen. The NP, LVN or (worse yet, especially in the ER!) doctor inevitably says, “Well you can’t be a 10 or you wouldn’t be able to talk to me” or “you would be writhing in pain.” It is all I can do not to scream, “Pain is my everyday so how would you know how I’m experiencing it?!” (yep, I can see Warrior heads nodding).
Let’s face it, Warriors, this is our least favorite question because, guess what? Pain is relative, especially to the Warrior. We experience pain differently (hello, regional pain syndrome). But we have pain in the extreme if we are going to the doctor about it. Or, as I have had happen, we have had moderate levels of pain for such a prolonged period of time, that we are just exhausted.
So for any physicians or medical practitioner reading this, if you must ask me the dreaded question, please accept my answer. Do not negate it because you have been taught that a 10 is impossible unless the patient is babbling incoherently or writhing on the floor. My pain is real. I’m not making it up because I like going in to the doctor’s office. I need your help. I need your compassion. I need your empathy. I do not need to be dismissed or diminished because you do not experience pain like I do.
What advice would you give to newly diagnosed Warriors?
It is not your fault. It is not just you. Do not read the blogs (sorry!) and do not go searching the internet, not yet. I joined a local Facebook Warriors group and was both humbled and terrified by what others were going through because it is not my experience. You will read things that will absolutely be your experience, but you will read things that may frighten you right now. And you just do not need it: this is a scary enough diagnosis by itself. Just give yourself time to learn about your CRPS/RSD experience.
You absolutely must be your own advocate. You have to be vocal, pushy and sometimes downright hostile. I went in for an ankle reconstruction surgery and put a stop to the whole pre-surgery procedures (as in literally the ones where I was all gowned up, they were about to do the nerve block) because the anesthesiologist was just running through her checklist. I was a medical record number, not a patient, and there was no way in hell I was going to let her do anything to me until she saw me as a person, as someone she could do serious harm to if she did not hear me about the RSD.
If you have a medical practitioner who does not see you as a person or blows off your CRPS, find another. Keep searching until you find the right match for you. I would far rather delay my care to find someone who is going to listen to what I am saying about my RSD than to be even worse off with someone who does not.
Telling others about your experience is hard, not because of what you’re going through, but because people may think you’re crazy. If you say you have nerve pain, people think of Fibromyalgia because of all the ads they see on TV. They do not understand that nerve pain is not normal pain and that it does not just go away when you take a pain med. So for this I say be patient. Keep trying to help them understand. And honestly, those friends who do not get it are the ones I just do not talk about my RSD with. It isn’t that they are trying to be naïve, they just do not get it. And that is okay.
My mom has been with me through all of this, from 15 when I was diagnosed to now at age 45 (wow, 30 years ago!). She still does not “get” it, but she is not one to judge. She listens, she’s empathetic. And, yes, sometimes she tells me to just suck it up and get over it, but it is usually when I need to get out of my RSD pity party and get back to living me life. 🙂
What activities/treatments have helped you find temporary/long term relief?
So, again, my RSD is different than most. I have not met anyone else with RSD like mine in a mild form. A TENS unit will help with the severity of a flare up, but is not a long term solution. It just makes it more manageable. Acupuncture is the only thing that consistently works to decrease both the level of pain and (more importantly to me) the duration of the pain cycle. I do have to have it every week, though, in order to keep the benefits. This is not always realistic, though, with work schedules and life, but it definitely helps. Pain meds do not help, though.
What else would you like to add?
My heart goes out to all the Warriors. You are amazing and loved. Even though I know it seems grim, please don’t give up.
We Bleed Orange Together and Will Quench the Fire!
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How and when did you develop CRPS/RSD?
In 2016, my father was in his third stage of Alzheimer’s. He was coming out of a truck, but just a little too fast, and I went to grab him so he would not hit the concrete. At that moment I knew I had done something to my back. After getting the test results saying that I ruptured four discs in the lower part of my back, they started therapy and injection. Since nothing was helping after all failed attempts, my doctor said, “You are going to have to have surgery.” I was very reluctant to do the surgery, but he explained to me that it was a very simple procedure.
How and when did you develop CRPS/RSD?
How and when did you develop CRPS/RSD?
Anyone who knows me knows what a huge lover of music I am – and that any time I am in the car it is either on the Broadway or Classical channels; though, when it is football season I tend to listen to ESPN. However, there was a day when I was in the car and the programming on the channels I normally listen to did not fly so I turned to a local radio station and I heard this upbeat song and I liked it (major rarity!) – but I did not find the name of it – so after I got home I went to my friend Google and looked up the radio station’s playlist and found the song and immediately went to iTunes and found the song – and oh my gosh it was the perfect tune if ever I have heard one – 
How and when did you develop CRPS/RSD?
Every day is a determination of what can I do. What priority is there I must meet. With a young daughter and husband, as well as a job, you can imagine that my own rest is one I usually push to the side as much as my body allows…. despite my husband’s wishes otherwise.