the invisible war
I sat in the small medical exam room at a hospital in Boston while the Specialist told me “Well, when you smell a rat it is usually a rat, this Rat is RSD.” Suddenly there I was, speechless, dumbfounded. Years of relentless pain and not knowing what was wrong with my body, to having 3 simple words bring my entire world crashing down around me… Regional Sympathic Dystrophy.
And I cried.
The three letters R S D were heavy around me and I suddenly couldn’t find the air to breathe. I knew those were the three letters I didn’t want to hear. Those three letters were meant for someone else, not me. Didn’t this doctor know I was young?? Didn’t he know that I had spent my entire life ACTIVE! I was living the dream, my dream. I had built a successful, happy and adventurous life in the Caribbean. Didn’t he know I had just learned to kiteboard?
24 hours earlier… in the caribbean
I was sitting in my podiatrist’s office in St Croix, USVI for the third time that month. I told her something was wrong. Really wrong. After 4 years of excruciating pain following a sprained ankle, I could no longer walk and I had been forced into a wheelchair.
I could no longer take showers without the falling
water feeling like daggers being thrown in my feet.
My feet were bright red, almost a purple hue. She went to touch them and my nerves fired the most intense wave of pain before she could even get within 6 inches of my feet. I held my breath and push my eyes closed through the pain and I heard her softly sigh. “ Kelly, you need to leave the island,” she said as she rested her hand back on her lap. At that point we had done all the referrals to the specialists on the island and only gained frustration as everyone either said “This is Plantar Fasciitis” or “There is nothing wrong with you! Your MRI, CT scans and X-rays are fine, this is all in your head”. But, I didn’t understand if this was all in my head, why were my feet so read and swollen?
Maybe this was in my head? Maybe I was imagining the discoloration, the swelling, the pain? Maybe I wanted to be sick? Even though I was a licensed clinical therapist, I was confused and thought, “ Is this me? Am I making myself sick?”
My trusted podiatrist, urged me again, breaking ruminating thoughts of self doubt… “You have to leave, this is bigger than any specialist on the island. If you want, I will meet you at the ER in 2 hours and I will call for an air ambulance to take you to Miami.” I was still in shock. Certainly it couldn’t be that bad! I had a job after all. I had clients who needed to see me this week. I had 2 dogs to take care of. I couldn’t just leave island. In my mind, the responsible thing to do was wait. So I left, in my wheelchair with a prescription for Vicodin and somehow I was able to drive 20 minutes home and literally crawl 100 yards down the path to my cottage. And her words hit me.
I needed to leave. Immediately.
Hours later, I was on a commercial flight to Boston to see a doctor that I had googled “best Podiatrist/surgeon” and was able to be seen immediately due to a cancellation. I was terrified to discover what was destroying my body. As I boarded my flight, being pushed by a flight attendant down the long terminal to the plane, I saw a familiar face. An old friend. A friend who was a pilot. Was he my pilot? Suddenly, I knew I knew this was an Omen, this was the right decision. My first time flying to Boston from San Juan, PR because of a mystery illness and my friend Jeff was there greeting passengers as they got on the plane. I wasn’t alone. After we landed, he carried my luggage and pushed my wheelchair. Another friend from the island happened to also be in Boston and agreed to meet me at the airport. She helped me into her car and helped me settle into my wheelchair accessible room that had been arranged by a caring friend, while I was in transit to the states. Sometimes things aren’t a coincidence. Sometimes the universe gives you exactly what you need. I don’t know how I would have survived this terrifying week without their presence and support.
The Diagnosis: Regional Sympathetic Dystrophy
“But, I just learned to kiteboard.” I told the Specialist. He stared at me, possibly questioning my sanity. “What I mean is, I have to get better. I don’t know what RSD is but I know it is bad. My podiatrist mentioned it once,” I rambled “she said, it was rare and pretty horrible but that I probably didn’t have it”. He went on to share information about the disease while tears streamed down my face.
The next 3 days were a blur of painful tests and incredible teamwork from my medical team. Although I was alone, I felt supported by the doctor’s expertise and kindness as well as support from my friends who were nearby and back home in St. Croix. On the final day, I met with the specialist one more time. “It’s not in your head,” he shared “this is a neurological disease, your nerves are telling your brain there is excruciating pain but there is no injury”. He went on to explain;
“ You have to get up. You have to walk, you can’t stay in this wheelchair, because if you do, you will never walk again. Your attitude determines your fate. You have to work hard. Work through the pain. Physical therapy every day. Don’t stop even when you hurt. Push the pain out of your mind. Mind over matter”.
As I look back on this advice, I know that he meant well. I know that he wanted the best for me. I know he wanted me to get better- to walk and to kiteboard again. But, it wasn’t that simple. RSD was no longer called RSD, it was now known as CRPS (complex regional pain syndrome) and it was still thought to be rare. Very few people are able to go into full remission even with a heart full of optimism and a handful of meds. The medical community now understands that while you shouldn’t stop moving – sometimes it is impossible to fight through the pain because you can cause nerve damage to the limb or area. However, in that moment, I could not have asked for a better doctor. He believed me. This was real and he made sure I got the best care even from 1,740 miles away.
I went home to my island, my beloved job, my dogs and my life that I loved. I stood up and walked through the intense burning pain. I went to physical therapy every day. I walked on the beach to desensitize my feet. I swam. I biked. I pushed through. I wasn’t going to allow this disease to rule my life. I was going to fight. I was going to kiteboard again. That was October 2014.
In the next two months I found that CRPS is rated as the most painful disease in the world. On the McGill Pain scale, it rates above natural childbirth and amputation. In December 2014 I was told that if I didn’t move off the island to better medical support that I would ultimately lose the ability to walk. I didn’t move. Instead, I flew back to Virginia every 6 weeks for injections in my spine to calm the nerves.
I told only a handful of people about my diagnosis but I hid it from almost everyone because I felt ashamed, broken and weak.
Somewhere in those four months, I met a wonderful man and fell in love. Ultimately, I will still say it was the love that I moved back to the states for and not because of the disease. Love was the only thing strong enough to loosen my grip from the life that I built on my island.
I left my friends, family and my therapy practice on St. Croix in late February of 2015. I flew back to Virginia with my two dogs, four checked bags and $518.00 worth of flat rate postal boxes in the mail. As the wheels lifted off the runway on that special island where I had shared laughter, tears and adventures for the last seven years, I felt my heart break. Tears built up behind my Ray Bans and my Golden Retriever Abe, rested his head in my lap as we climbed higher into the clouds. I left a piece of my soul back on the beaches of St. Croix, along with my kite boarding gear.
For the last year, I have fought relentlessly against the invisible war going on inside my body. On my darkest hour I wanted to end this life of pain and torture, but in the end I only found more courage to continue fighting. This is not the life I so carefully crafted in my late twenties. I am not the person I was working so hard to be. I am better. I am a warrior. And this is my story.
The Invisible Warrior 
I went through the same thing as you. I was only 16 when it happened to me. I know exactly how you felt and I am so sorry you went through all that.
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Hi Nashya, I was also 16 when I developed CRPS…best wishes to you..
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Thanks for reaching out. I can’t imagine having this at 16. Do you also blog?
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I’ve just discovered your blog. I was diagnosed only 3 weeks ago. My journey is so new, nowhere near as arduous as almost everyone else that I’ve come across. I literally just bumped my elbow 6 and a half weeks ago. I didn’t give it a second thought. The next day I discovered extreme pain on touching of my elbow. The pain in and around the elbow got worse, and within a fortnight the pain was travelling to my upper arm, I didn’t understand why it felt like I had just had a tetanus shot. I reluctantly saw my doctor, she thought I might have a tendonitis because of the crazy pain directly around the elbow. I thought it might be a fracture. A week later I had an ultrasound and xray, the radiologists saw some damage to the ulnar nerve. From there, I guess due to the excess pushing and poking and prodding of the nerve during the ultrasound, the pain went through the roof. Four days later, on Mothers Day, my husband took me off to the hospital to try and get some pain relief. I could barely breathe through the pain. The breath I was expelling out and onto my own skin almost tipped me over the edge. How could air hurt so much? The ER staff were amazing – the doctor there called 7 different doctors to get one who would admit me with neuropathic pain. Within 2 hours I was high on drugs and moved to a room, admitted and waiting for my son to bring my pj’s and toothbrush.
The next day the neurologist and pain specialist nurse met with me and by the end of the day the pain specialist doctor had come, started a Ketamine infusion and then sat with me and given me my diagnosis. He also said ‘don’t google it too much, it’s most worse case scenario stuff’. But since they caught mine so early they’re really really positive about my outlook. He said it was pretty rare to catch it so early. Like 3 weeks after the initial injury. So that obviously gave me a much better chance of stopping the nerve damage that takes place while you normally wait for your diagnosis. He told me about people like you who go through months of elimination type diagnoses before the final diagnosis of CRPS is given which sadly leaves them with irreversible nerve damage.
I spent 7 unexpected days in the hospital on the Ketamine infusion, Lyrica, Tramadol, Diazapan, Prednisolone and a couple of other incidental pain killers. Not to mention the anti-clotting jabs, the anti-nausea IV and the compression socks!! Oh those joyous compression socks pulled up to my knees, making my already hot and tingly feet even more so. Brain MRI after which I vomited everywhere, like everywhere, spine MRI then another one of the arm, which showed nerve damage at the ulnar nerve. And then the infection from the final Ketamine site move, which actually had me telling the doctor, who came up from the emergency room in the middle of my last night in hospital, to actually cut my leg off. I had made the decision that I needed my arm more than I needed my leg and I told him to cut it off. I hadn’t thought I could be in any more pain than when I had gone into the ER 7 days earlier, but the infection at the Ketamine site was insane. I used my crappy arm to try to rip my super thin cotton pj’s away from my thigh and hold the sheet off it, leaving me feeling like all the drugs they had pumped into me during the week were just pointless because I overused my arm and felt like I was back at Square One.
I went home the next day, pretty much unable to walk, hungover from all the drugs and with a totally different kind of pain in my arm to anything I had ever experienced. It wasn’t as insane as when I went in, but it was this constant dull, heavy ache, burning from the inside, freezing to touch, feeling like the tendons in my elbow were stuck in the wrong place, dislocated, nerve spasms causing my arm to just jump out randomly… truly bizarre and so depressing.
I tried not to take the drugs for the first week home, I just wanted to get over the sick, fuzzy head, hangover type feeling and the pain was, ‘bearable’. By Day 10 out I put myself back on the Lyrica, I just couldn’t stand the lack of sleep and the constant burning anymore. A couple of days and the burning calmed down. The locking up, dislocation type feeling hasn’t left, but the random nerve spasms have calmed down a bit. The constant dull ache is still there. My hand, my whole arm really, just shakes all the time and this has begun to move to my right arm as well. Typing… nightmare. Difficult to keep my elbow bent for an extended period of time, but difficult to keep it straight as well. The ‘shouldn’t your arm be in a sling’ question, over and over and over… ugh. And the ‘chin up, you’ll be right’… today, from a very good friend who I have been helping through a separation after 27 years of marriage, ‘oh come on, it’s not that bad, you have a lovely husband and a lovely family, this will pass soon’… devastating.
I’ve only been dealing with the diagnosis for three and a half weeks, the extreme pain for 4 weeks and I’m terrified that it’s going to be permanent. Everyone I’ve encountered has been dealing with it for years and has had additional complications or side effects. It was refreshing to read your comment about not comparing yourself to anyone else with it. I’m trying so hard to be positive but my life is suddenly filled with specialists appointments and drugs and sugar… cravings for sugar non stop… depression, tension, anger, frustration. My main problem is this comes just as I have gotten to the end of a four year battle with lawyers and work cover and compensation issues for permanently damaged vocal chords which I got as a primary school teacher, which caused the complete and utterly devastating loss of my career. I just began to move on from all the depression associated with that pain and those issues, I began a Bachelor of Creative Arts – Photography. I didn’t even get Semester One finished. I can’t even lift my camera, let alone write reports and essays. I keep telling myself I can do it anyway, I can use tripods and remote shutter controls and I can create art in photoshop with one arm, but when I don’t sleep and I can’t think past the pain it’s pretty hard to plan for a future that is, once again, different from the one I had hoped for.
BUT, your blog is the best I have come across so far so thank you for your insights and thank you for sharing your story, it’s heartening and just what I needed to find. xo
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Oh bech73, I am so sorry to hear that you have been diagnosed with this dreaded condition! I am glad they caught it early. I truly understand what you are going through and I wouldn’t wish it on my worst enemy. I am also sorry to hear about all of the trouble you’ve had with your vocal chords. Everyone tells me it will get better and honestly, given the early diagnosis, that should be very true in your case. I pray that it is and you find relief soon. If you ever need someone to talk to, please don’t hesitate to reach out.
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