Christy’s Story

 

This is CRPS

Christy’s Story

“The MRI imaging today was complete and utter torture. There’s really no other way to describe it. I was lying on that awful, cold, hard, MRI table sweating profusely from the intensity of the pain, clinching my fists together and grinding my teeth…just trying my very best to be perfectly still so that they could get proper images of my back and then my right knee. At one point, when the machine was knocking in my ears, I could hear myself screaming from the inside. I just wanted it to be OVER. I just wanted to get back home to the walls that have imprisoned me since the beginning of this journey with RSD. Where I’m most comfortable these days. Where I’m not constantly being judged by others.

“I’d worked in law enforcement for nearly 14 years and I was out on medical leave, going in for my second spine surgery, but first fusion. They’d be going through my abdomen this time, they said I’d have a much quicker recovery time. Boy, were they ever wrong! When I came out of surgery, I knew something was terribly wrong. Both legs were swollen and felt like they were burning from the inside out. They were bright red and warm to the touch. It almost looked like I had fallen asleep while lying out in the sun and gotten an awful sunburn, unfortunately, that wasn’t the case. I wasn’t sure what was wrong, but I don’t think I could have ever imagined the nightmare that was in store for me. I went for my first post op appointment and my neurosurgeon’s PA was the first to utter the words, ” it looks like you have RSD”. I had no idea what that was. I’d never heard of it before in my life. I’d asked her, but other than verifying the symptoms that I’d had, all she could tell me about RSD was, “There’s no cure”. Oh, and she did tell me to go home and “Google it”.  Yeah, thanks. Fast forward through countless specialists and numerous tests later, I was formally diagnosed by my pain management Dr over a year later. Of course, they say, if caught early on…usually with in the first 6 months, it’s your best possible chance of remission.

“My days now consist of laying in bed until I eventually force myself to get up and drive myself on my scooter to our living room, where I’ll lay on the couch until bedtime. I’d rather lay on the couch all day  and starve myself, than to risk causing myself more pain by moving. I know that must sound crazy, but when you live with intractable pain day in and day out, you’ll pretty much do anything to get some kind of relief, even if it’s just for a moment. Here’s how I usually describe the burning pain of RSD. Imagine, all of the blood in your body has been replaced with lighter fluid and set ablaze and there’s absolutely nothing that can put that fire out….NOTHING. You’re just left to burn 24/7/365. Then, there are all of the other symptoms to go along with the fire. Dystonia, allodinya, swelling, muscle spasms, dry hair & skin, brittle nails, skin discoloration and thinning of skin, intense electric like jolts, insomnia… just to name a few. Then there’s the brain fog and memory loss issues from taking copious amounts of pain and nerve medications, and even more meds to help with the side effects.

“Atrophy started in both of my legs shortly after being diagnosed. I’ve tried physical therapy and aquatic therapy, with no relief or results. If anything, it made the pain worsen. As well as RSD/CRPS, I’ve also been diagnosed with degenerative disc disease, severe spinal stenosis, vasavagal syncope, chronic cellulitis, fibromyalgia, anemia and possibly MS. I’ve had countless epidural injections, sympathetic nerve blocks, and ketamine infusions and yet still nothing has helped ease this pain.  Living a life of pain makes you want to give up sometimes, but we are fighters, so that’s what we do – we fight just to make it to the next day.” – Christy 

Help Christy fight the flame. Every year we raise money to donate to the RSDSA to research CRPS. Register for our Fight the Flame 5k or donate below:

 

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“Here’s how I usually describe the burning pain of RSD. Imagine, all of the blood in your body has been replaced with lighter fluid and set ablaze and there’s absolutely nothing that can put that fire out….NOTHING. You’re just left to burn 24/7/365.” – Christy