None of Us Wanted Our Lives Altered
Written by Christine Sibley for the RSDSA blog.
My name is Christine Sibley. I am a 43-year-old mom, athlete, body builder, and runner who also loves Jiu Jitsu! I am a certified nursing assistant at a senior living facility in North Branford. I describe myself in a present way, because although CRPS literally ripped these abilities away from me, I have very high hopes that I am returning back to all the things I love and the things I did that made me, ME!
I tore my meniscus on November 5 , 2019. It was a typically busy day for me. I got up at 3 am to go to the gym as it opens 4 am. I did my usual mile run and weight session, showered and headed off to work. I did my usual very busy shift which includes non-stop walking. After work, I headed 21 miles to my Jiu Jitsu class. I remember limping out of my class with my left knee literally on fire! My leg was immediately stiff and would not bend. My knee felt like hot elastic every time I tried to bend my leg.
I got home and thought it was not a big deal. I am an athlete and get injured from time to time, and besides, I could not wait to show my son my GI [uniform] I had just received from my coach. I was in and finally becoming a white belt! I went to bed since I had to work another morning shift and expected that after ice and elevation my leg would be okay. I was also in serious denial because my leg was far from okay. I could not sleep that night and my leg was doing very oddball things. I had never had a knee injury, so I was not sure what to expect and I was an overall healthy person. Not even 24 hours later, I felt my overall heath swiftly declining.
I woke up with a very swollen knee and thigh and at this point my entire leg was burning, I could not bear weight on my leg at all without a great deal of pain. I called out of work and drove myself to the ER. The usual protocol was used: x-ray, ice, immobilizer. I sat and chatted with the doctor there who knew a great deal about sports medicine. At this point we knew my knee was not broken. I was given time off work and referred out to get an MRI. The last thing I said to the doctor was, “but why do I feel a bubbling sensation under my knee? Why does it burn so bad? Why is my whole leg moving by itself?” He said it was all normal.
I was in a hurry to get my MRI and get back to my life. I had a demanding job and no time to waste looking for the perfect doctor. My insurance is limited as well. I just wanted this to be over.
I found an orthopedic advanced practice registered nurse (APRN) and she referred me for an MRI. I had a very small 1 mm tear in my meniscus along with a bone on bone arthritic knee. She assumed the right knee was the same arthritic mess. She said there was no option for surgery for pain relief due to the arthritis. I told her that I am a runner, and that I never had any knee pain and would never of known they were bone on bone if she did not inform me.
She suggested cortisone injections. With these, I would be back to work within three days, and it would alleviate the burning, stabbing, and leg on fire pain. This would end up being the worst decision of my life. From that moment forward, my CRPS (that no one knew I had) was kicked into overdrive. What happened to me during those last four months gave me PTSD so severely that I was too terrified to get out of bed. Very long story short: It was something said at physical therapy that got me diagnosed with CRPS. I asked how my knee was doing, and I responded, “You mean my leg? You should see it at night!”
Nighttime is when the “dance party” happens. My leg has a life of its own now. It burns and I cannot have anything on it. It shakes and actually feels like my patella is being tapped on from underneath! My mind is doing odd things too. I just do not feel well at all, and it is getting worse by the day.
After physical therapy, I received a call from the orthopedic APRN. She said, “Have you ever heard of CRPS?” I had not, so I asked for more details. She matter of factly said, “It’s a pain syndrome.” It honestly did not seem like a big deal to me. She then referred me to a physiatrist and the month I had to wait leading up to that appointment was horrible.
I was getting sicker and sicker. I had four ER visits and was begging for amputation which got me nothing but a Valium and referral to a psychiatric doctor. I swore I had an infection, but nope. All of my labs were normal. I had no blood clots. I also had no answers. This was all because not one doctor (and I saw many) in the three months I was very ill knew what Complex Regional Pain Syndrome even was. I did not know either even though I was suspected to have it and was far too sick to do any research. Now I am well enough to help spread awareness!
Daily life over the last six months started out as a complete nightmare. My pain was so bad and all I did was cry. It turns out, the needle injections put my CRPS into a monster flare up. I lost many of my abilities during this time, including my mind. I thought I would stay like that for the rest of my life. Once I met my current doctor, I was able to finally got on the right combination of meds that work for me and things are so much better. However, each day with CRPS is completely different from the last. Some days my legs just do not work well and it is very hard to walk and some days I can walk just fine with little to no pain. Being out of work and waiting for long term disability to be approved has been very challenging. I’m unable to regulate the things that happened to my body like skin discoloration, regulating my heart rate and blood pressure, and extreme allodynia of sounds. They are all unwelcome, but dealt with the best I can.
One thing I wish those of you without CRPS would understand is although most of us look fine, we are not, so please be kind, always. I find that people can be very judgmental. I hear a lot of, “You were in a wheelchair yesterday but today you are walking?” and “Why are you using the scooter when I saw you pushing a cart last week?” I wish able people would be more understanding of the chronically ill community in general. None of us wanted our lives altered. Now here we are, doing our best with what we have.
The advice I would give to newly diagnosed warriors is to reach out to others such as family and friends and CRPS Warriors on Instagram. There are so many online groups filled with Warriors who are very helpful with the millions of questions we all have. There is a wealth of info on YouTube with Ted Talks on CRPS and chronic illness in general. Whatever you do, do not isolate yourself! It is easy to slip into the muck with the psychological impact of CRPS. I did and it sunk me even further. Although it can be scary, research anyway, advocate for yourself, and please find a doctor who specializes in CRPS.
Other advice includes:
- Obtaining a medical alert bracelet
- Keep a journal. I keep one for meds and pain, one for personal thoughts, and a regular planner for appointments. This will help with brain fog and keeping your mind healthier. As you get to know your CRPS, you can also direct your treatment.
- Use EMLA cream before you get needle sticks to help prevent a spread
- Watch for tight blood pressure cuffs. Those can also cause a spread.
- Please make sure that before any procedure you always refer to your doctors
The encouragement I would give to the CRPS warriors fighting for years is to please continue to share your journey, keep spreading awareness, and keep pushing. Sharing your journey has gotten me through my darkest hours. You are well honored and greatly appreciated by me and all the new Warriors. Keep fighting. Your strength and endurance carries us and we love you for it!
The treatment that has helped me for long term relief first and foremost is my medicine regimen. Before we found the one that worked, my nervous system was all over the place and so was my mind. CRPS is complicated as it has a psychological component to it as well. Although topicals help with allodynia, the biggest help was to start desensitizing my affected area right away. I started with a Q-tip and now I use a wash cloth over my affected leg and it has made a tremendous difference with pain and fabric on that area.
Temporary relief, varies from day to day. Getting myself out of bed each morning and taking a shower helps with depression. Distractions are also a must. Whatever makes you feel good that you can do in bed during flares, go for it!
I also suffer from severe allodynia. I have not found any treatment for that except pills, rest, and minimal to no noise. Soothing nature sounds help on a low volume. Be aware of loud noises like motorcycles and fireworks. It is a trigger you do not need!
The last thing I would like to add is NEVER GIVE UP! To any Warrior out there, please contact me if you need help. You are not alone!
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Thank you so much for sharing your experience with CRPS