Living with CRPS
This post was originally written in 2014. I decided to share my story to raise awareness about CRPS and bring hope to others who have been diagnosed with it. I am so grateful for every day that I am able to craft it up, design on my computer, and walk my dog because it reminds me of the days when those tasks were impossible.
Update: March 2020: Please also refer to my recent post about “leaky gut” and how I’m currently managing my CRPS flare-ups.
Back in August 2012, I was diagnosed with Complex Regional Pain Syndrome (CRPS) otherwise known as Reflex Sympathetic Dystrophy. CRPS is essentially a nerve disorder that affected my right hand and made it impossible to complete simple tasks such as washing my hair, getting dressed, typing on a computer, or driving. Although the doctors had told me there was no “cure” or time frame for my hand to start functioning again, I was able to go into remission in a matter of weeks.
I truly believe that it was a combination of treatments that healed me, but that my mind played an integral part in that healing process.
At the time of my diagnosis, I was spending all my energy working for someone else and forgot to pursue my own passions on the side. I didn’t realize it then, but looking back I was no longer in alignment and was beginning to feel depressed. CRPS was a blessing in disguise because it woke me up and helped me reorganize my life. I soon realized life is too short not to be doing what you’re passionate about, and I’ve been following a creative path ever since. This is what I now refer to as, “Following My Bliss” or being in alignment.
When I was diagnosed I remember finding it difficult to find information and stories that would give me hope, instead I generally ended my Internet search feeling more scared than when I started. For me, it all began with a game of volleyball with friends (well some may call it volleyball but it was more like attempting to hit the ball over the net rather than into the trees, haha). The next day I had a bruise on my right wrist but didn’t think much of it… the day after that is where my story begins.
It was a Tuesday and a typical workday but typing on my computer and moving the mouse was becoming painful – I am right-handed. I pushed through not thinking much of it, just that I bruised my wrist and it would heal in a week or so. Wrong. I borrowed a small hand brace my sister had used for carpal tunnel but it only seemed to make the pain worse. I think it was after day 3 that I decided it was time to see a doctor. When I broke my wrist back when I was 11 and a part of me thought that may have something to do with my current injury. Of all the ways you can break your wrist I actually broke mine from walking my dog! In my defense, he was a greyhound so he took off with lightning speed when he saw a squirrel, which ended with me on the pavement with a distal radius fracture. Well, it turns out that incident had nothing to do with my new injury. The general practitioner told me it looked like tendonitis and prescribed me some pain medication and a splint wrist brace.
A week passed and the pain still didn’t subside, instead, it was intensified and my right hand was pretty much useless– I was extremely sensitive to touch and temperature and had my arm permanently positioned as though it was in a sling. I tried ice (which I now know was a BAD idea) as well as heat but nothing worked and it was getting difficult to sleep at night. At work, I had to move my mouse pad to the left side and began typing AND writing with only my left hand. Simple tasks like washing my hair and getting dressed were becoming more difficult by the day. I called up my doctor to see if there was anything else they could do or better drugs they could prescribe and that’s when he referred me to a specialist.
I visited the hand specialist who took x-rays of my wrist which I assumed at this point must be broken. Having to place my wrist down while someone moved my hand into different positions was extremely painful so you can only imagine my surprise when the doctor told me my x-rays looked fine. This is when I finally learned what was wrong with me all along – I had CRPS. It is difficult for me to explain the amount of pain I was in, all I can say is that it was severe, constant and felt like burning. The temperature in my right hand was degrees colder than that of my left hand, it was somewhat swollen and my fingers would randomly spasm. To top it off I was also getting terrible migraines. When the doctor was trying to examine my hand it was hard to hold back tears because the slightest touch was so painful. Eric wasn’t even able to hold my hand the pain was so excruciating.
She explained to me that CRPS is generally caused by an injury or traumatic experience where the nerves become extremely sensitive – like a switch turned them on but didn’t turn back off. She was surprised how much it had progressed in such a short matter of time (this was about 2 weeks after it all started) yet positive about the fact we caught it early. The worst part was when she told me there was no “cure”, just treatment that would help subside the pain. She also said there was no time frame as far as how long it could take before I could use my hand again. She prescribed me some pain medication and referred me to both a pain specialist and a physical therapist that I would now need to visit several times a week. This is when the vision of dollar signs started to swirl around and I felt my throat tighten. It was bad enough I had this “disease” but how was I going to pay for all these doctor visits? Even with insurance, my doctor visits were quickly adding up.
When I got home I started researching CRPS but most of the articles I read freaked me out and were discouraging. I was scared to finish reading some of them because I felt like my hand hurt more when I read about symptoms but knew I needed to be knowledgeable about the condition I have. The doctor had told me to try and stay relaxed and if something starts to stress me out that I need to stop and step away from it – so I decided to read chunks of information at a time. I needed to stay positive and told myself over and over I would be fine and recover from this all very quickly. After all, if there was no timeframe for my hand to start functioning again, that meant it could happen any day now, right? I just had to will it.
I had scheduled an appointment with both the pain specialist and physical therapist but had to wait a day to see both of them, which seemed like forever. The pain specialist prescribed me an oral steroid to take for one week, some hardcore pain medicine to take continuously and a topical cream to apply to my hand daily. I was excited to finally have several options that would hopefully ease the pain, but not so thrilled about spending my paychecks on so many prescriptions.
Before I went into physical therapy I remember telling my mom and my boyfriend husband that it better work because I couldn’t afford to keep going, only half kidding. They kept telling me that I was going to beat this thing and that I was strong enough to overcome it – that I just needed to stay positive. They are both strong believers in mind-body control and reminded me not to worry about the future but focus on the present moment. When I first walked into the physical therapist office I had no idea what to expect, but all I can say is that day changed my life forever and I will never forget it. It was a miracle in my eyes.
The therapist had me sit down and tried to get me to do simple tasks (well what should be a simple task) like lift up my arm and straighten out my fingers – this was extremely difficult as my hand had been in a cupped position for over a week now, and my fingers barely budged. She then had her assistant go over some mirroring techniques – she would move her arms and hands and I would mirror what she did. This somehow made it slightly easier, although my motion was still very slow and progress was slim. In an attempt to help get my hand in position the physical therapist put her hand on mine and I started to panic, my hand had been extremely sensitive and I nearly broke down in tears every time a doctor even barely touched it. Surprisingly, it didn’t hurt, in fact, the pressure was nice and somewhat a relief. I know it may sound insane but it was like she had the magic touch! After 30 minutes of hand exercises, corn husk therapy and playing with putty, I was able to put my hand into a fist! It had been weeks since I had been able to move my hand this much, which brought tears of joy, tears of HOPE. No longer did this disease control me, I was now in control. From that point on I was extra focused and driven to succeed. Originally, I was supposed to see a physical therapist 4x a week, but after my initial visit and the progress I had made, the PT told me to come back the following week. She told me that my mind is a powerful being and just to keep telling myself “this feels good” rather than being scared and thinking it would hurt. Words of wisdom if you ask me.
I practiced my hand exercises several times a day while telling myself “this feels good” every time I used my hand, and to my surprise, it did. There were moments where I had to stop, take deep breaths, close my eyes, focus on health, be present, and then start again but I improved every day and Eric was there for me every step of the way. I went back the following week to have what turned out to be, my FINAL physical therapy visit! I was so proud of all the hard work I had put in at home and it showed. She said it wasn’t necessary for me to come back the following week unless I really wanted to and she couldn’t believe how quickly we were able to turn this thing around. I am forever grateful to her and her assistant because I truly believe they changed my life. I trusted them and was able to free myself of any preconceptions about how long I would be in pain, on medication and unable to use my hand. It may seem ridiculous to some but I believe I “tricked” my brain into thinking or knowing everything was okay and they helped me accomplish this. My family and friends were all so supportive of me as well and never stopped believing in me which is awesome. I am so very blessed.
Maybe it was the pain medication, maybe it was my dedication to have my “normal” life back, maybe it was my will to prevent high doctor bills that I can’t afford, maybe it was physical therapy, maybe it was my mind, maybe it was God or maybe it was all of the above, but I have found a way to live with CRPS and am back to doing the things I love.
It’s been years since I was diagnosed and do I still have pain? Sometimes, but I’ve learned how to manage it without medication. Is the temperature in my hand still different? Sometimes. It used to be almost daily but now it’s maybe a few times a month or during colder months. Do I remain positive? Absolutely! I may notice it, bring out the heating pad, and move on with whatever I’m doing.
My hand still gets weak while working on certain projects, when I spend too much time on my phone (booooo), or from typing away on my computer (which is practically every day), so I make sure to take breaks and practice my hand exercises. I also keep a portable heater or heating pad next to my computer and use those when my hand starts to get cold.
I’m not gonna lie, sometimes when I feel my hand getting tired or it falls asleep in the middle of the night I’ll think, oh no what if it’s back! That’s when I take a deep breath, relax and remember that I’ve got this under control. Practicing being present is key. I do some hand exercises to stretch it out, take a short break from what I’m going and it’s all good. My hand gets stronger every day and so do I as a result. I am also proud to say that I have been off of medication since September 2012! I also like to repeat the mantra, “I am healthy. All is well.”
I want to share my story to raise awareness about this disorder and bring hope to others who have been diagnosed with it or know someone who has. I am so grateful for every day that I am able to craft it up, paint, blog, design, cook dinner and walk my dog because it reminds me of the days when those tasks were nearly impossible.
While I absolutely believe there’s a place for medicine, I also believe we have more power than we give ourselves credit for. Getting CRPS was the wake-up call I needed. Looking back, I was depressed at the time and wasn’t following my passions or doing anything that brought meaning or excitement into my life. I actually get pretty emotional when I think about it, but it gave me the opportunity to dig deep and make some big changes in my life.
I was lucky to be diagnosed pretty early on, and for that I am grateful. There wasn’t a lot of information available back in 2012, there still isn’t enough available today, and I think it’s important to raise awareness and bring optimism to others who have been diagnosed with CRPS, or know someone who has.
Is “leaky gut” the cause of your auto-immune disease and can the AIP help?
To learn more about CRPS/RSD you can visit the links below, you can also read my story over on their blog, along with more inspiring stories HERE.
Wanna learn more about the power of your mind and how to help heal yourself? Here are a few of my favorite resources:
Eckhart Tolle – I was given the book, “The Power of Now”, by a coworker back in 2007 and that book completely changed the way I thought. What’s crazy is I had nearly forgotten about some of the important messages in the book until I was diagnosed with CRPS. This book definitely had a massive impact on my life, I just didn’t know how much until I was diagnosed. I later read A New Earth, and it’s become another favorite read.
Super Soul Conversations Podcast – If you’re looking for inspiring stories, this is one of my absolute favorite Podcasts! You can listen while you drive to work, run errands, or at home. Oprah even has a special series with Eckhart Tolle that follows his book, A New Earth.
Louise Hay – I love Louise and am so grateful that her books came to me at a time I needed them most. Be sure to check out her book “You can Heal Your Life” and if you’re really ready to put in the work, “Mirror Work” is amazing!
Dr. Wayne Dyer – One of my favorite mentors is Dr. Wayne Dyer and I highly recommend his podcasts and books. One quote I think of often is from his book Wishes Fulfilled, “Never place anything in your imagination that you don’t want to materialize”. He is full of so much wisdom and has taught me so much. You can check out his Podcast recordings here.
Gabby Bernstein – Gabby is awesome and has a voice I think especially resonates with younger generations. I love her meditations, lectures, and books. My favorite book is Super Attractor, which is all about learning how to feel good.
Hayhouse – I LOVE me some HayHouse Radio Podcasts! There’s a bit of everything on there.
Someday I’d like to share more information about the topics mentioned below, but here are a couple of quick notes:
Meditation
Meditation has helped relieve a lot of my anxiety and stress and is something I practice daily… or at least try to. If you’re looking for guided meditations, there are TONS out there. Some resources include: Insight Timer, the Chopra Center, Calm, or HeadSpace app. You can also search for free meditation podcasts or videos, and again, Gabby Bernstein has some amazing meditations too.
Chakras
You may also want to read about Chakras and see the meanings behind pain in different parts of your body due to them being blocked. I was amazed when I read about what can cause neurological pain, but it all made sense – even though this was years after I had gone into remission.
Food is Medicine
And finally, I highly recommend reading up on autoimmune diseases and how food is medicine – and when you eat the wrong food it can have a negative effect on your health and cause inflammation.
Speak with a naturopath doctor to see if there are any lifestyle changes you can implement to relieve pain, figure out if you have “leaky gut”, or see if the Paleo or Auto Immune Protocol may help. There are tons of great documentaries and books on this topic that are worth researching and implementing to see if they have a positive effect on your situation.
And if you can, see a nutritionist and take food sensitivity/gut tests to help take away the guesswork (there are also home tests you can take without a nutritionist’s recommendations). I took the LEAP MRT and GutZoomer tests in 2022 and the results and supplement recommendations based on those tests have changed my life!
Life is too short not to be doing what you’re passionate about, and it’s never too late too start!
