Kelly, an Irish surname means “warrior or fighter”
This seems fitting as I have taken on an invisible war in my body called CRPS (Complex Regional Pain Syndrome) or RSD (Regional Sympathetic Dystrophy).
Growing up in rural Virginia, I was always active. Equestrian on the hunter jumper show circuit, backpacking, snowboarding, skiing, spelunking, running, biking, swimming, water skiing and an all around adventure junkie.
I never liked traditional rules of society so after graduate school and working as a Clinical Social Worker in a children’s psychiatric hospital, I decided to take on a new adventure: Moving to the beautiful island of St. Croix in the Virgin Islands.
The island held even more adventures as I traveled and learned to scuba dive, sail, kiteboard and surf. I even signed up to work a summer at an island adventure camp in 2011. And then it happened. I got injured hiking on the east end of the island.
Little did I know that this sprain would cause me a lifetime of pain and misery.
“Complex Regional Pain Syndrome, CRPS, formerly known as RSD Reflex Sympathetic Dystrophy, is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas.” (www.rsdhope.org)
In a nutshell, once your body has physically healed, the nerves continue to send signals to the brain that the injured body part is in extreme pain (rated as the most painful disease and on the McGill Pain scale it is higher than natural child birth and amputation). For 4 years I did not know what was wrong with me and I was misdiagnosed due to the rarity of the disease. READ MY STORY HERE.
For numerous reasons, I moved back to my roots in Virginia, fell in love and continued to work as a Licensed Clinical Social Worker. Every day I fight to put one foot in front of the other (literally).
Every day I fight through burning pain with a smile on my face.
My CRPS has spread to both feet and to my mouth, causing extreme dental issues. Behind my blue eyes, there is a river of tears waiting to be released at the end of the day but very few people see this.
I fight. I fight because I am terrified if I quit that I won’t get up again. I fight because I can’t imagine a life that I am confined to a wheelchair. I fight because there are also others who are fighting their own battles that are greater than my own. And lastly I fight because my sole purpose in life is to help others. To advocate, to give others a voice and help them overcome adversity, trauma and chronic pain and illness.
The Invisible Warrior 
Kelly, first of all – May God bless you with the strength to survive and live life to the fullest. You remind me of my sister – who has had RSD for 17 years. She struggles and no one understands. I want to help and she shuts me out.
LikeLike
Hi Linda, Thank you for leaving a comment. I am sorry to hear about your sister. It is a very isolating disease but it sounds like you want to be there for her. There are some great support groups on Facebook if you search for CRPS/RSD. These have helped in my time of need. Also, you can have her read some of my blog. It helps hearing that other people do understand what you are going through. ❤ sending love and light
LikeLike
Kelly, I’m also from VA & would get to get insight & information in regards to the medical tram that’s helped you.
LikeLike
You are an amazing strong person. I feel that I am, but I am struggling to begin. I was a Flight Attendant and have an Associates Degree in travel tourism. Unable to be a Flight Attendant I am so confused on where to start. I am on SSD and am paralized on what to do as my husband is divorcing me. I did fill out my story, but I did not add any pictures. Either missed or did not see a place for them. Any advice or guidance would be greatly appreciated.
LikeLiked by 1 person
Hello Linda,
Having CRPS to me it’s not only the pain we suffer but the emotional struggle. Why has this happened to me thoughts the drastic life changes we go through. I try my best to be strong not wanting others to see the pain I’m experiencing the mental brake down.
My mother looks at me with this guilt look upon her face, since I fell on Xmas eve on her steps and twisted my ankle. In her eyes she’s always seen this strong willed and adventurous person. I have been her crutch being her eldest of 2.
Now I have turned into some weak person that does not want to go out. Moving back home with her to accompany her after both her husband and father passes away 3 months of each other. She is an amazing woman, strong and energetic fighting her own pains in silence.
We don’t want to be a burden on anyone. The sadness, pain and our inner battle we fight in silence. The struggle to wake up in the am and take that first step and to keep walking despite the pain we feel. I have always been the type to fall and get back up start all over again but now that battle loving with crps becomes every day more difficult.
We just want to be remembered as we were. It’s probably a pride thing even if we really want to run cry and scream on someone’s shoulder.
It’s funny sometimes I get upset with both my mom and my partner, it seems as if they forget I have this horrid disease and it’s precisely what I want for them to treat me normal. But you see our own battles the irony of things.
Yvonne
LikeLike
Kelly keep fighting. I have said those exact words. I fight because…
I’ve read alot of different blogs, articles etc… on RSD (really stupid disease) as I call it or CRPS and your blog is the one I can relate to the most. I fight because if I stop I will die and RSD is not going to win, I am. Thank you.
LikeLike
Thank you ❤ Those words are very kind. I am happy that you can relate but sorry you are suffering all well. CRPS is a beast. I started writing to sort through all the emotions and difficult times it has thrown my way. I am glad my story helps. I also have Twitter, FB and instagram if you hover over the icons under the about me photo on the right handside. Sometimes I don't have time to write back on here but you I would love to follow you on those social media outlets! Have a low pain day. And keep up that fight. As I always say "Not today CRPS, not today!"
LikeLike
My name is Wendy, I was diagnosed with CRPS a year and 5 months a go now, I have it in my right foot, and I believe it is starting in my hands. I have been on crutches for that long now. I am an emotional wreck a lot, and the pain, well, I’m not telling you all nothing you don’t already know. When do you emotionally get used to get? Some days are worse then others, but it’s like it just hit me that my life is not ever going to be what it once was. Anyways thank you for listening.
LikeLiked by 1 person
Hi Wendy, gosh… I don’t know how to answer your question. I’m not sure I have ever gotten use to the diagnosis, the pain or the ways in which my life has changed. Somedays I am an emotional wreck as well. Somedays I emotionally just can’t do what I have to get done for that day. Somedays I still break down crying. Angry. Depressed. All the feelings rolled into one. The only advice I have for you is let those days happen. Let your self fall apart. Let yourself grieve. Let yourself feel all those really hard feelings. It’s okay to fall apart sometimes. Sometimes we have to fall apart because we need to put ourselves back together in a more constructive manner. The biggest no no is do not under any circumstance feel guilty for being sad or angry. You are doing a damn good job. And it is a hard job waking up everyday to a different body and your life not resembling anything you know. This has been the most difficult battle I have fought and I’m sure you can relate. I guess my perspective is be kind to yourself. You truly are doing something that is really hard. You deserve to be recognized for that. Find little things you can find joy in. Try a gratitude journal (I know corny!) but it helps me sometimes. Get into physical therapy. Find a pool. Start to move and kiss those crutches goodbye. It takes time but I have no doubt that anyone who lives with CRPS can move mountains 🙂 hang in there. You aren’t alone. Take Care xoxo
LikeLike
Wendy,
I completely understand you. Out of my own experience think twice about spinal ?? (I’m sorry my mind went blank and I can’t remember the name of the therapy)..i think it’s called something on the lines of back stimulator. It brought nothing but pure evil to my life. My left leg which was my strong good leg now is the center of pain in my life. They put this wire running down my spine and implanted a battery inside the buttocks. It never worked, it appears they touched a nerve. I lived or rather did not have a life for the next 6 months that thing was inside of me. It is not the same for all of us, but I like to earn people who have crps to think twice before saying yes and the think some more. I had predicted this would happen to me but I wanted to feel better and went against my instincts and now I regretted.
Yvonne
LikeLike
It took me 7 years to finally get a diagnosis on the RSD/CRPS 1, while on my 3rd week long stay at the hospital I became very sick during my IVIG treatment for RDS/CRPS 1. I was unable to stand and lost my ability to speak due to the bone shaking tremors of nerve pain in my upper legs and trunk. After having blood work sent to the rare disease center it has been determined thru testing that I have SPS(stiff person syndrome) Its very similar RSD/CRPS. But is more confined to the trunk area and is terminal. The only treatment they use on me is IVIG. Please tell me Ketamine Infusion, I am not familiar with it. Having all 3 of these immune disorders at once is tough but I keep going when I can. on an off note the disease has wrecked my teeth. I go back Tuesday for my fourth IVIG, which is a long week in the hospital with a splitting migraine from the meds. I would like to compare notes on this crazy thing destroying our bodies and lives.
LikeLiked by 1 person
I have a daughter with this horrible disease. If only they could come up with a cure. I don’t know how people live with this disease and still go about their daily business. My prayers are with everyone suffering with this pain
LikeLiked by 1 person
Hello. Just want to thank you Kelly for helping me (and many more I am sure) with my daily fight. You’re truly an inspiration. I have been diagnosed with CRPS/RSD for 2 years now following a vehicle accident. (My foot was run over) I pray we soon have a cure.
Chad, definitely look into ketamine infusions. They, along with my amazing doctor have basically saved my life. I began ketamine infusions in August of 2015 and have had amazing results. I see a doctor in Clearwater, FL who is a world reknowned CRPS/RSD specialist. Did I mention he is amazing? Lol
I’d be happy to give you some info etc if you are interested. (My email is wyomiwinds@gmail.com) Best wishes and hopes for pain/free low/pain days for all. 😊
LikeLiked by 1 person
Thank you to my sister who now understands my RSD/ CRPS. Tears are streaming down my face, as they do most days. She passes along these to me. Last night once again, after 0 sleep 4 3 nights, thinking there is no way out of the excruciating pain, throwing up, unable to move from bed. I was diagnosed with RSD in 2002.It starting in my right arm and chest from going to the E.R.for a ovarian cyst that ruptured. The nurse after 5*’so of attempting to insert my I.V.,then put it thru my vein into my nerve and it infiltrated my arm for 8 hrs. Screaming it was not in my vein, my arm blows up 5*’so the normal size. They said ” it’s only saline “will be gone tmrw. I could not have a sheet touch me. Lying flat on a mattress 4 week’s, my arm now mottled purple, green, blue and still as swollen. I felt as though someone had taken sandpaper, scratched my skin off and threw lighter fluid and struck the match. Going on 15 yrs, it encompasses my entire body. I was told that it was incurable, progressive disease which I have prayed it must certainly be terminal, because no one could exist like this. I also lived a incredible life. Traveling, biking,gym, hiking, outdoors, and now that sun that I sought blinds me. Noise makes me feel like people are screaming, not including all of the weed wakers.etc. I lived on a primative island in the Bahamas. I learned how to handline.Dorado 45 lbs, free dive, spear lobster, live off the sea and experienced HEAVEN ON ISLAND. Worked for the airlines 4 17 yrs I traveled constantly, my passion! I am now lucky to make it outside my front door. I have had a external tens, internal tens unit, and a pain pump which is being titrated completely. I didn’t think possible that the pain could worsen. The Dr.”GOD” told me I was over medicated and this would help. Give it a go. Maybe the pain will lesson, the first titration did help a bit. The second which is 80% has been absolute hell.it has been recommended by many to try Medical Marijuana. I finally did this last month and it has helped some with the pain,nausea, insomnia, depression, and anxiety. I have tried everything. Injections, blocks, tens, p.stims.every type of therapy, acupuncture, massage, and most bring on more flare ups. I have not read your whole story. Yes, it effects my mind, and have aged a good 10 yrs. Thank you for sharing what looks to be uplifting. Thank you for letting me get this out. God works in many ways. I needed this today more than I can say.
LikeLike
Please help me I have crps
LikeLike
Hi Geri, I wasn’t sure if anyone had answered you or if you had gotten help somewhere else but what exactly are you looking for? New diagnosis help, treatment options or emotional support? I’m sure between everyone here we can come up helpful answers and hopefully get you some ideas. I have been dealing with CRPS for 18.5 years so I have learned at lot. Just reply back if you still need help. And good luck. Lisa Kehl
LikeLike
Hi, Lisa. Do call instead, need help. Had it for one year, 2 months. No meds,due to horrible stomach issues. 914 632 3732. Please reach out again. Geri
LikeLike
Hi, Lisa. Do call instead, need help.914 632 3732
LikeLike
Hi, Lisa. Do call instead, need help.914 632 3732
LikeLike
Kelly:
Your blog has been such a source of strength for me! Please know that every minute you spend writing it is worth it to your readers.
I was diagnosed with CRPS in 2004 brought on by a sprained left ankel. I confronted symptoms for 3 months in 2004, then went into remission, then again in 2009 for 2 months and went into remission again. Now facing progression of disease for almost 3 months. (all incidents are due to re-spraining that left ankle) However, CRPS is being very stubborn and very painful this time, and it is a bit frightening.
I was wondering if you could talk/write about the prep and process that you use when you have dental work done? I have not had trouble with dental work in the past, but I KNOW that my dear dentist would understandably have no idea how to handle things if this became a problem for me and I have not been able to find this information anywhere yet.
Hoping you can help by sharing.
Thank you so very much and I wish you all the best.
-Becky
LikeLiked by 1 person
Hi Becky, Thank you for your kind words. I am sorry to hear that the disease is flaring up again. I will put that on my list of topics to write about. I hope you find some relief in the next few weeks ❤️
LikeLike
I can’t tell you how informative this blog is. In May 2016 my daughter was diagnosed with CRPS. She had sprained her ankle and was in excruciating pain. I had to be her advocate and fight with the doctors. I was told by the doctors that little girls are dramatic. Luckily one of those doctors changed his opinion after examining her. He acted quickly after diagnosing her. She had weeks of physical therapy and crutches with a boot. She had a pretty quick recovery.
Then 6 months after her diagnosis she had a flare up. The cry that came from her made me cringe. I knew that this ugly illness was back. With this flare up we did therapy on our own. After a few weeks it was improved. I realize that she is so strong, most times she deals with the pain. There are times that she is depressed and just keeps to herself. She feels alone. It breaks my heart to see her in so much pain. It’s so difficult to watch her suffer. It’s incredibly frustrating because family members and friends don’t understand her pain. She often hears that she is faking for attention. No child (or anyone) should feel such agony.
She is doing good now. She has been getting exercise and playing on her schools basketball team. I can honestly say that she is my hero. She has so much courage and strength on a daily basis.
Is there anything that she can do to get relief when she has a flare up? I want to help her in anyway possible.
Jenni
LikeLike
Hi Everyone❤ I am so happy to find this blog. I tripped over my dog at night in August 2017. I dislocated and fractured my shoulder. Bone chipped into my rotator cup. Surgery to repair and a screw holding bone together. Never in a million years did I imagine my life turning upside down with CRPS😣 Fast forward…travelled to my dominant right hand which I cannot use YET!! Months of therapy, nerve blocks and meds. I am NOT me anymore. I need more help than I want to admit. Lost my caregiver job and bills have been a strain. It helps to hear others in same boat and we are not crazy. I am not giving up but it is a struggle every single day. Love to all💕
LikeLike
My husband sneezed, ruptured discs in his neck, had spinal surgery and the the slide into this hell began. Four years in, with too many doctors to count (including Mayo Clinic), he received the diagnosis of CRPS. He has been having physical therapy to desensitize his feet and he has had a series of 3 spinal injections. The pain management doctor is pushing to have a permanent spinal stimulator implanted. I am fearful of him having this done because I have read that it is usually not helpful and that it can actually cause the pain to spread. Please, anyone who reads this and has experience with this, please respond. Thank you. Sincerely, Nancy Sexton
LikeLike
jeftine karte
LikeLike
etisalat eLife Interne
LikeLike
Charles had yet to put his own stamp on his music.
La radio proporcionaba flujo vital y era un gozoso tormento buscar en el dial -Onda Dos apenas tenГa potencia- aquella canciГіn, todavГa inГ©dita, que aguijoneaba la imaginaciГіn.
This ability of the Sun s plasma sheath to modulate the solar current was demonstrated dramatically in May 1999, when the solar wind stopped for two days.
http://kenwyzadiburphezaconzaczcilpercma.xyz And have to refer to myself in third person.
After 1997 s dance infused offering Pop some fans were suggesting that the bubble of Dublin s finest poseurs had finally burst.
Stax released Redding s debut album, Pain in My Heart, two years later.
LikeLike
I’m going to steal my father’s pajamas
LikeLike