Be kind to yourself. Don’t beat yourself up.
Recorded by Lisa Folsom for the RSDSA blog.
Listen in as Lisa details how a 2015 injury of her left pinky finger caused her CRPS, her diagnosis, education for friends and family, treatments, and much more.
We’ve also included the full transcript of Lisa’s video:
Hi, everybody. My name is Lisa, and I am the 44-year-old wife to a wonderful and handsome husband, the mom to three pretty darn good kids that are now in their 20s and Noni to an absolutely adorable infant grandson. Life with CRPS began about five and a half years ago in May of 2015 when I fractured my left pinky finger, of all the smallest things you could possibly do, with the injury of what’s called a boilerplate injury. Now, if you’re like me, and about 98, 99% of other people, you have absolutely no idea what a boilerplate is. What it is, is a small disk that is located on the inside of your fingers over the middle joint of each one of your fingers. And it’s attached by two small ligaments to the bones on either side of it. So it’s located, like I said, in the middle joint, and it’s attached by two small ligaments to the other bones. What I did was I turned my pinky finger completely sideways, 90 degrees, and I tore the ligaments completely off the bone and it took a piece of the bone with it and caused a fracture.
Well, by September of that same year, 2015, I was still in pain, which shouldn’t have been that way because most fractures, you know, will heal within about six weeks. And the ER doctors had already tried immobilization, which of course, all our RSDSA folks know., immobilization is probably the worst thing you can do for CRPS patients. But of course, by September, I was still in pain, severe pain, and it was starting to hurt. It was starting to crawl up my wrist and forearm. And so I went to an orthopedist who told me there was no reason I should still be in pain. He took his X-ray and told me there was no nerve damage, there was no bone problems, there was nothing wrong with the bones. And so there were there, therefore, there was no reason I should still be in pain. And I absolutely hate those words. Because I’m pretty sure that every CRPS patient has heard them at some, you know, some time or another. But he sent me to an orthopedic hand surgeon who was just as baffled as the orthopedist was, and so I got shuffled back and forth between the two for quite some time before the orthopedist decided that, you know, maybe I had a compressed ulnar nerve.
Well, the ulnar nerve is the nerve that runs along the back of your arm, all the way up your shoulder, into your neck and into the brain. And if you’ve ever you know, hit your so called funny bone, You know exactly what your ulnar nerve is. So they did a surgery called the cubital tunnel release, and essentially widens the channel that the owner nerve sits in. And they figured that they had resolved the problem. Well, long story short, all they did was cause my CRPS to spread because it was a new injury, new surgery, new injury, and it caused my CRPS to spread all the way up the back of my arm into my shoulder and part of neck. So that continued with the burning and the crushing pain. And by January, you know my husband, my poor husband, by that point, I was keeping him awake at night. I was no longer sleeping properly. I was thrashing around just trying to get comfortable. And by January that same by January of 2016. He was like you know what you are done. We’re taking you to pain management. And that’s it. So, I was fortunate in that, you know, in in sort of searching out Google Maps. I happen to pick out, pick the name out of the hat so to speak, of the one doctor in my town that was one of the leading doctors in the state for CRPS. It was phenomenal. It was like God had just opened the heavens and given me a blessing beyond belief that, you know, this doctor was positively the greatest in the state, you know, when it comes to this disease.
And so we went to see him and I gave him the down low on all of my symptoms, what I had been going through, the misdiagnosis I had received, which was thank, thank goodness, it had been my one and only misdiagnosis. And he essentially said, you, you have textbook RSD. And he handed me you know, this brochure that started detailing all the symptoms, and all the issues that come with this come with this disorder. And I was like, holy crap. I didn’t have any idea that this disorder existed, I hadn’t Googled any of my symptoms, because I know that Dr. Google is sometimes a dangerous thing. Um, and all I had done was just, you know, outline what I had been going through to him, and he handed me my diagnosis without, you know, without skipping a beat, you know, I had undergone all the testing, the MRIs, the laboratory testing, the clinical examinations, the EMG’s. You know, all and it took maybe a month or two before he had handed me my diagnosis. And that was by about February or March of 2016. And life, daily life since then has been, you know, sort of touch and go. I feel sometimes, like I’ve been at a treatment guinea pig because, you know, what works for one patient doesn’t always work for another CRPS patient and unfortunately, that’s just sort of the way it goes for us, you know. One treatment may not work for another. And so we had to sort of test out all the different treatments and all the different medications to see what would work for, what would work for me. And, of course, you know, when it comes to the home life, there’s no such thing as a schedule, because you never know how you’re gonna wake up. You don’t know, if you’re gonna wake up in a flare. You never know, if you’re gonna wake up stuck in bed. You never know how you’re gonna end up feeling that day. You may be full of energy and full of pep and you may be able to go run all your errands, and you may be able to do some of your housework, and get everything done and you may feel like Superman. But then the next day, you are just down for the count. So there’s no such thing as a schedule. And my husband is fully aware of this and he makes, he makes tentative plans. He pencils things in and hopefully we can do them, but he knows that if I I can’t, then I can’t. And then we just, you know, sort of take a chill day at home and we watch TV or we play board games or we you know, just have a semi fun day at home as much as we can.
The one thing that I really wish that people who don’t have this disorder could understand would be you know, I just wish they could understand that, you know, there are some days that even [sigh]. There are some days when even our skin hurts, and that we don’t mean any offense when we say please don’t touch me. We’re not being distant. We’re not being snobby. We’re not being, how can I say this? We’re not mad at them in any way. We’re not being ugly to them. We just can’t deal with the human touch because allodynia and hyperesthesia are a thing and those are big fancy words for the fact that things that shouldn’t cause us pain, do. And our skin is way more sensitive to touch and to outside stimuli than the normal human being. I’ve often said that I can feel a mosquito land on my arm before she can bite me. Which is kind of a handy superpower to have, but it’s not always a happy thing. I can feel a single hair land, you know, and I kind of brag on it as being a superpower, but it’s not really the most fun superpower to have all the time. And so I just wish that, you know, sometimes people can understand that we don’t mean any harm when we say, “Please don’t hug me, please don’t touch me.” We just can’t handle it on that particular day. And I wish that they could understand that yes, CRPS is a physical disorder. It’s not a mental one. It is. It is a clinical, physical diagnosis that has been verified by multiple physicians across multiple disciplines. And it’s been documented since the Civil War. And there’s no, there’s no denying it at this point. You know, it’s real, and the pain is real. The McGill University pain scale has bumped up the pain level, from a 42 to a 46.5, which is more painful than the amputation of a finger or toe without anesthesia.
You know, I have and the one thing I missed, I failed to mention is that, you know, through subsequent injuries, you know, I have developed CRPS in all four of my limbs. I have had sprained toes, multiple sprained toes. I have dislocated another toe. I have sprained an entire foot. I have had surgery to get a spinal cord stimulator. And I have had a radio frequency ablation, to try and help with some of my back pain because I do have some spinal issues on top of everything else. Well, every single one of those procedures, surgeries, injuries, and all of that have caused my CRPS to spread to every single one of those sites. And so my case is absolutely no joke. And I truly wish that, you know, people without this disorder could understand that, you know, the pain associated with this disorder is just unreal.
When it comes to the advice that I would give newly diagnosed Warriors: Be patient with your doctors. You know, they’re not incompetent. At least most of them are not. It’s just that they have to find what works for you. You know, what works for me, may not work for you. So, please be patient. You’re not a guinea pig. They just need to find what will work for you specifically, you know, I have found for me in particular, that ketamine is a wonder drug. It is the best thing that has worked for my CRPS pain ever. You know. And so my doctors have given me you know, oral ketamine capsules to take, they’ve given me an intranasal spray, as well as most of the other traditional medicines that will work for that have been tried and true for CRPS like Gabapentin and Cymbalta, etc. Now, that may not work for you. It may be that you know only opioids will help you. You just have to go through your process and understand that you may have to do a little trial and error when it comes to your treatment regimen. And, you know, just be patient with your doctors, be patient with yourself, please. And be kind to yourself, don’t beat yourself up when it comes to your hard days. They’re gonna come. They’re not going to be easy, but they’re going to come. And even though you might feel useless on some days, you might cry, you might get depressed, but you know, be patient with yourself as much as you are with your doctors, as much as you are with your family. Be patient with yourself, be kind to yourself, be loving to yourself. And, you know, give yourself as much self care as you need. Do the hot baths, the hot water therapy. Do your physical therapy. Do everything that you can to help ease your pain and get back to what your normal might be.
For the Warriors that have been there for many, many, many years, help us help those of us who are who are still in our journey, still in the early stages of our journey early to mid stages of our journey, and to the newly diagnosed Warriors. We need guidance, you know from the long termers. We may not understand what the long term effects of the illness will have on our bodies. Whereas you might. I’m still five years maybe I’ll be six years in this May. I need guidance just as much as the newly diagnosed Warriors do. So you know, reach out to us help us to understand where we’re going to be 20 years from now. We need it. We need the help. We need the guidance. And we need the kindness and the love from those of you that are, you know 20, 25, 30 years in. Reach out to us and help us you know, help us get there and help us to help others.
When it comes to treatments, you know the only thing that I have found that helps me is physical therapy. Warm water therapy and meds. Those are the only things that have really helped me in the long term. I have tried epidurals. I have tried steroid injections, the Toradol injections, I have tried. As I said the radio frequency ablation for my lower back. I have tried well the spinal cord stimulator has done wonders. I will say even though the implant site has become an RSD site, when it comes to the pain relief in my limbs, the spinal cord stimulator is a technological wonder and it gives me so much relief that it’s unbelievable. And so I would highly recommend that to anyone who is finding their pain, unresponsive to meds, or other treatments. But like I said, physical physical therapy, warm water therapy, my stimulator and my meds. Those are the only things that have worked for me in particular, the injections don’t usually last very long for me the nerve blocks the sympathetic nerve blocks don’t usually last long for me. That’s not to say that they won’t work for others, that’s simply saying that they don’t work very well for me.
That’s just about it. I don’t have too much else to add other than to say you know, I want to help as many people as I can when it comes to this disease. And so I have started social media channels you can find me under the username @thespoonbunny. And I have you know, I have tried to include as much information there as I possibly can including some ways to help save energy around the house. Including you know, some some informational videos that outline symptoms and you know, how to you know, sort of recognize the signs and symptoms of CRPS and hopefully, I like to add a little humor, but I just want to help as many of you as I can, that’s all I can say. I enjoy it and you know, when it comes to just being there for others I feel like it’s my calling and you know, what else am I going to do when I’m you know, disabled and at home? I have like I said, a wonderful handsome husband who allows me to just be me and allows me to be home and not you know, have to deal with working or dealing with anything but healing myself. And so I will leave you with my normal sign off when it comes to my social media channels. Until next time, my friends this is The Spoon Bunny signing off. May your spoons be plenty and your troubles be few. Have a great day.