I Wish I Could Do The Things I Used To Do
Written by Kellie Slater for the RSDSA blog.
How and when did you develop CRPS/RSD?
My original injury happened in August of 2012. Even though I saw providers on a regular basis and continued to have excruciating pain, and some of these providers thought it could be CRPS, I was not formally diagnosed until later. I underwent physical therapy, which only exacerbated my pain. I had ice applied and instruments that applied a high amount of pressure to my nerves and all the while, the therapists could not understand why my pain did not abate. In fact, they were visibly annoyed that I was not getting better. This added insult to injury. I feel like this lack of knowledge and not listening to the patient contributed to the chain of events that lead me to where I am now – in constant pain and the associated other medical issues that come along with CRPS.
What has daily life been like since your diagnosis?
It is a struggle to try and stay positive. Though I have always been highly independent and active previously, including having a highly demanding, highly physical, long term career as a flight attendant, I now have to rely on the help of others, which is not that easy to find either. Though I have always been social and able to do typical things that friends do together, I now am unable to walk my dogs and participate in typical physical activities that others want to do. When people discover you use a cane to walk, you have memory problems, cannot concentrate, etc., and that you simply cannot do things a person of your age normally does, it creates a barrier.
What is one thing you wish those without CRPS/RSD could understand?
That just because you cannot see my disease and I am not crying in front of you, it does not mean that I am not suffering and in constant pain. There are plenty of times where I do cry out of frustration and pain, but I do it privately. I wish people would realize that I am definitely giving things my best effort, and I wish I could be able to do the things I used to do.
It would be great for people to know how important it is to maintain contact with those who have CRPS, and really any other disease, as a lack of communication can lead to people being isolated.
What advice would you give to newly diagnosed Warriors?
Do a lot of research on your own! It is up to us to provide the research to our providers, because odds are, they do not know anything or not much at all about it. It is important to advocate for yourself. No one else will do it for you. If your provider will not listen or discounts what you say, find another provider. Keep moving towards finding medications or other things that help you. Being able to get a good night’s sleep is paramount. If you cannot sleep, this impacts your life in all sorts of negative ways. This disease affects us all differently, but there are commonalities as well.
I would also advise all, especially women, to take another person with you to all doctor appointments. It is a second set of ears that can document what is said and done during the exams.
I have a substantial temperature difference between my limbs as measured by a thermography device. A limb being much colder than the other may be a big clue that you may have CRPS.
What advice would you give to Warriors who have had CRPS/RSD for many years?
Try to find something to distract you from the constant pain and isolation. Reach out to others you know (through responsive and stable CRPS support groups if possible), to keep contact and share information. Do not let anyone try and tell you that your disease is anything other than what it is – a severe and devastating (physically and most likely financially) disease without a cure (at least for now). Also, take photos which will document the differences and changes in your limbs, if you have that type of initial injury.
What activities or treatments have helped you find temporary or long term relief?
I have my dogs which provide 24/7 love and companionship. Treatment wise, I think I have tried most everything, except Ketamine infusions and stim implants. I do not plan to do anymore invasive surgeries as that seems to result in the spreading of the disease (I already have that) from the individuals I know who have had that done.
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First time I have found a crps site of support! Finally someone else who can truly understand the pain and understand the isolation you can feel having this.
I am finding out being an advocate for myself is so important, since many Drs and physical therapist do not understand the depths of this disease.
I have crps after having a simple bunionectomy 3 years ago. I use a cane on occasion, but usually still walk in a aircast, yes that ugly boot!! but it helps my pain.
Thanks for reading, but most of all I loved what you wrote it gave me support I needed! thanks
Yvette Hugs to all you crps frieinds!
Kellie – THANK YOU for this post! I was diagnosed w CRPS in March 2019 after severe pain started out of nowhere in Dec. ’18. I spent all of 2019 at podiatrist, rheumatologist and physiatrist vists, plus PT, medications and various orthotics and boots to try and alleviate my intense constant pain in both feet. Your post is the first time I’ve been able to feel “I am not alone.” I’m extremely frustrated and down because I can’t enjoy the simple things – like walking my dogs! But I keep trying to get to the bottom of this (latest path: desensitization treatment by PT). I’m going to carry on, of course, but now with renewed confidence that comes from knowing that others are out there battling this too. Thanks so much.
Thanks for the comment, JT!
Your statements are spot on! I feel that it is important for warriors as well as caregivers, if blessed to have one read this. Lots of times very few understand what it’s like even with being in front of you 24/7, the guilt, isolation, sense of hopelessness all of the emotions one can go through in a day. They try but most haven’t a clue!
Great suggestion, Denise!
Thank you for reading my story and for you kind comments. We are all in this together and when we share our stories, it helps us and other s know we are not alone with what we are going through.
All the best to you!