Written by Colleen C. Ross for the RSDSA blog.
How and when did you develop CRPS/RSD?
Well, that is actually a really great question! I suffered a back injury around 2008ish, did not really get adequate medical treatment until 2009, and opted for a laminectomy at L5-S1. I pretty much knew right after surgery that things seemed much worse, but all of my concerns were dismissed and I was basically told that I just wanted the pain pills.
After horrible results from a round of epidural cortisone injections, I opted to just realize that this was my new normal. That really did not last long though because by 2011 I was a hot mess, literally. My new PCP chalked it up as thyroid issues, which would eventually result in me having a thyroidectomy due to believing there was a very big chance that I may have thyroid cancer. I honestly felt even worse after that surgery too. Again, accepting my new normal, I pressed on working as a prep/line cook in a restaurant. That was extremely tough!
In 2016, shortly after changing jobs, my appendix ruptured and I had to have an emergency appendectomy. Again, I was not okay after this surgery. I ended up with an abscess, had to have a drain put in my body, which resulted in another hospital stay. I went back to work within a month of all of that, which is the normal amount of recovery time for a regular appendectomy, let alone all of the added complications. Due to the nagging and bullying by a co-worker whom was also a “supervisor” and a long time close friend, I went back to work before I was physically ready, but I could not afford to lose my job. When people told me, that able bodies people will never “get it” until they got it, they really nailed it there!
In March 2018, my body finally gave in. With my entire left leg screaming and pounding in pain accompanied by my back in excruciating pain as well, I went to my closest ER in the middle of the night. A CT confirmed my worst fears: my L-4 and L-5 were now both herniated and my L-3 was bulging. That started what has been a whole other merry go round of doctors and specialist appointments, most resulting in either being turned away or very limited options.
In May 2018 I noticed my left leg was a completely different color and temperature than my right leg. It kind of made me panic because they had tried another “nerve block” a few weeks before that and I feared I was having a reaction to that. That night was the first time I had ever even heard of CRPS/RSD. As I began researching about it, the last 10 years of my life and all the crazy symptoms I had been having were flashing before my eyes in script on a computer screen. The next day I made an emergency appointment with my PCP and between her and her nurse, they agreed that they too believed that I had CRPS/RSD. After months of waiting for an appointment, I was officially diagnosed with CRPS/RSD type 1 by a pain management specialist in 2019. He proclaimed that he felt that I had most likely had CRPS all the way to either before my back surgery, if not indefinitely after my back surgery. He also felt that I needed to have a DRG implanted and my fiancé and I actually left that appointment feeling the best we had after leaving an appointment in a very long time. It was short lived though.
What has daily life been like since your diagnosis?
At first, it was a relief because I finally had a diagnosis and knew that everything I had been experiencing all those years was not “just in my head” like everyone was telling me, or that I was “just really crazy” as my “friends” told me. I also figured, “okay, I have this diagnosis, there is tons of information about how debilitating it is, as well as the fact that it has no boundaries.” So I figured that “great, at least now I will get adequate medical treatment” and hopefully even start to get some quality of my life back! Yeah, that did not happen either. I just keep on going though.
Even before the back pain, life was always a struggle for me in one aspect or another. So now, it is almost like I have realized maybe my life was so tough because it was preparing me for life with CRPS. I probably will never know the answer to that question, but what I do know is that life with CRPS is not for the weak. At 36 years old, my quality of life is not great at all. My mobility is limited, my mental health is not good, I do have major concerns for my general health and the route I had to take for pain management, but as I always have, I just keep going, waiting for my turn, to hopefully get the best relief I can from the symptoms that plague me the worst.
What is one thing you wish those without CRPS/RSD could understand?
Remember, we did not ask for this to happen to us. We do not want to be in this situation AT ALL. Instead of accusing people with CRPS of being crazy and attention seekers, just try to understand them and MOST DEFINITELY if you are friends with someone who has this, or gets diagnosed with this, do not abandon them. Be there however you can for them and even if you know they might say no, include them. Try not to complain to them about things YOU KNOW for a fact they would do anything to be able to do. Offer to help with tasks that are really easy for you to do, but you know are horribly difficult with someone who has CRPS/RSD. Most of all, learn as much as you can about this disease so you can try to understand the best way possible what we are going through. And if you make a commitment to someone with CRPS/RSD, do the absolute best that you can, to follow through with it. Obviously things happen, as everyone has their own lives and own responsibilities, but I am referring to the people who are always offering to help and then are always either backing out for a ridiculous reason at the last minute or ignoring them all together.
For me, being ignored and not included is probably the hardest. Before March 2018, I was a really good friend to certain people for many years by babysitting their kids for free and bringing them food when they were sick. Most of my friends I worked with, so on many occasions I went in for them if they needed me to. I would cook dinners for them, watch their pets, let their pets in and out if they went on a weekend getaway, and generally be there for them when they had an emergency, no matter how big or how small. For a majority of those years, I was a very able body person who did not drive, so a lot of those tasks were a little more difficult than it would have been if I had drove myself. I did it though, and I enjoyed doing it, or I wouldn’t have done it. I never expected that those people would not be there for me during the time I needed them the most, but that is the way it is now. I cannot change any of it, so I know who I can count on and who I cannot. I have realized that some people just cannot see past their own existence and their own wants. I am at peace with that, but I will never stop challenging people to be better than they were the day before.
What advice would you give to newly diagnosed Warriors?
Reach out to other Warriors as most of us have a pain management tool box that usually does not include immediate help from a medical professional. Learn as much as you can about this disease as most seasoned Warriors have links saved with a plethora of FACTUAL information! I have found great comfort from the CRPS/RSD support groups on Facebook and I suggest you join a couple and see if it is a good fit as there are tons of them. If one is not a good fit, try a different one.
BE YOUR OWN ADVOCATE! No one is going to fight for you more than you will fight for yourself! Do not get upset if you lose friends, even if you never imagined your life without them. This is not a life for weak people, and it is best to weed them out now rather than let them continuously let you down, or give you bad advice. I have found that controlling my emotions the best way I can by not getting mad or upset keeps the worst of the worst symptoms away. Do not put up with toxic people (weed them out too!) as they will only make things worse in the long run. I had a friend who was like a sister to me and she knew how to push my buttons. I was dumb enough to let her and my life has been more peaceful since I quit talking to her. The amount of time you have been friends with someone does not really matter as it is how they treat you that matters. I would rather have four quarters than 100 pennies, and thankfully my quarters now are worth more than .25 a piece. My tribe is amazing and I know I can trust them all 125%.
What advice would you give to Warriors who have had CRPS/RSD for many years?
This might not necessarily be advice, but to the ones who have knowingly been Warriors for many years, THANK YOU! Thank you for paving the way for newly diagnosed Warriors like myself. Especially thank you to the ones who have started the support groups, spread awareness, and are networking years of valuable information to help others! I honestly would have been lost without you all! I have yet to find a more amazing community, than the CRPS/RSD community! Everyone just wants to help you, or even just be a friend and talk about what helped them.
What activities or treatments have helped you find temporary or long term relief?
That is a tough question, because I am still navigating my way through the healthcare system and trying to find a treatment that is actually available to me. I did have a spinal cord stimulator implanted, but I have had some complications and major setbacks with it and honestly do not know what is going to be the end result of that. However, I hope it is something positive.
My daily life consists of a list of medications, with a very little side of actual pain medication that is not really at the best therapeutic level for me. It gives me relief, but it’s basically just enough so that I am not in so much pain that I am screaming, all the time. PURE full spectrum CBD has helped, along with an array of creams, salves, and lotions that either myself or my fiancé massages on the problematic area. I had a jacuzzi tub installed and that has given me tremendous relief! Water has been one of the few things that has consistently given me relief throughout all of this, even prior to my diagnosis. I have had luck with meditating music on YouTube, whether it is just to have calming music in the background or to fall asleep. The combination of that and a good massage after a relaxing bath is basically how I am able to get some sleep. Sleep helps me to be better mentally equipped for whatever crazy symptoms this disease decides to throw at me! The body tremors and spasms are pretty difficult to control, but magnesium supplements help. I have not found anything that I have been able to use to really get back to living my life.
Anything else you would like to add?
It is easy to get frustrated and want to just give up. However, I keep telling myself that I have made it this far and have been through so much so I must be here for a reason. Therefore, I refuse to give up. I may say I want to, in a moment of desperation, but that is also the thing that I remind myself: it is just a moment and eventually that moment will be gone.
I am truly very blessed to have the amazing life that I do, and that really helps me to keep pressing on. I have a 16-year-old daughter who is just purely nothing short of amazing and is really more responsible and resourceful than most adults I have met. She helps so much around the house and actually cooked ALL of Christmas Eve dinner by herself last year because I was in such rough shape. I wish I could keep her home forever, but I will not let this disease take her life too. She has so many amazing plans for her life and I will support her every way that I can.
My fiancé is really a force to be reckoned with and we both feel that we really have something special together! We have known each other since we were 13 and were friends for many years, prior to dating. He really is cut from a different cloth than the rest! I really am blessed to have him and to call him mine. He’s been through all of this with me, and has never left my side. He is now my main caretaker and manages our household, finances, grocery shopping, chores, helps me keep on track with my meds, will massage me whenever I ask, stays up at night with me when I am struggling, and anything else I need as well as working as a full time mechanic in a very busy garage. I have my mom, aunt and fiancés parents too as well as other family and a small group of friends. There is so much that keeps me going, and even in the worst of it, I have so much to be thankful for.
Please consider making a donation to RSDSA today!