Crystal's Burning Desire RSD/CRPS

http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm

Hello and thank you for taking the time to read my story about my journey with CRPS/RSD... It is a disease that attacks the sympathetic nervous system sending with decreased blood flow and increased sensitivity (read link above). Please share and spread the awareness so that others are made aware of this disease that does not yet have a cure. I require ongoing treatments to remain hopeful that someday I will regain function enough to play with the kiddos again and to continue in the medical fields helping others. The expenses of speciailist weekly, PT twice a week, MRIs, xrays, injection and potentional surgeries overwhelms me and our family is appreciative of any help we can get.  

I am looking at having to travel because CRPS specialist are rare and the most local I have found is one 6 hours away but I am still searching and praying. I am currently under the care of a hand surgeon, who feels There is nothing else he can do for me even though my function is only 50%. He referred be back to the shoulder specialist to relieve some of the shoulder pain and release my frozen shoulder for the 2nd time in 8 months. There is a possibility I need pain management and a neurologist to manage the pain throughout the nervous system. The hand surgeon feels the effects of the CRPS is basically out of his scope and states his main function is to follow up on my progress from physical therapy. Sadly, the progress has been very minimal since my 2nd surgery in August and I am only at 50 degrees range of motion with limited function. ..Please read my story below:

My amazing family & my main support on my graduation day 2015.......

God's beautiful mountains are my peace....

My name is Crystal and I was diagnosed with CRPS/RSD affecting my right wrist/arm in March 2015 following a surgery gone bad. I had an open TFCC repair on my right wrist, that is repair 2 torn of ligaments on my pinky finger side. I was told I would be back to 100% in 6 months, but I knew immediately something wasn't right but no one would listen until I found a new provider. After 7 weeks in a cast, my wrist would no longer go thumbs up or palm up (neutral or supination). The physical therapist was concerned that he wasn't seeing gains in Jan 2015 but would not consult with the surgeon. Instead, he kept trying without gain for another 6 weeks before sending me to a hand therapist. She knew right away something wasn't right and wanted me to see my surgeon. My hand was ice cold and she couldn't even push it past neutral (thumb up). At this time I still had not been diagnosed and was looked at like I was just a baby that couldn't handle the pain. Well, my surgeon happened to go on medical leave the day before I was suppose to see him with these concerns so I was left without care for a month. They couldn't get any other surgeon to accept my case and no one else other than the PA would see me, and she did xrays and was very concerned. 
Upon finally getting another surgeon to take this surgical screw up at another clinic, he said right away you have a very bad case of pronator contracture and CRPS/RSD. I had no clue what that meant for me I just knew he wasn't talking very hopeful and was left puzzled. What is this CRPS/RSD/Causaglia/Hand-Shoulder (4 names) that you speak of? I didn't realize that diagnosis was something that would affect my entire life, I thought it was something that was corrective. He wanted to do another 2 months of physical therapy since he had never worked with me before to give it a fair shot and we didnt see any gains; It has only started getting worse from there. He tried more aggressive physical therapy with no additional gains in ROM for 2 months, and it had spread to my shoulder causing an unbearable burning.
I was teaching water aerobics at the time and realized I wasn't even able to tolerate lifting my arm anymore. My clients started to notice the function in my arm getting less. The burning in my shoulder made me feel like I had torn my rotator cuff off my bone, and it still burns daily now with increasing intensity during flares. I saw a shoulder specialist and had to get an injection for frozen shoulder. Not only that, but he saw Osteoporosis on my shoulder that has already formed in results of this awful disease along with some biceps tendonitis. He got me to where I could lift my arm, but the burning and ripping sensation of my muscles only continued to increase.  And now, my ROM of my shoulder is decreased and so painful with the only hope being pain management adminstering nerve blocks.  I am considering more aggressive therapy but some of the treatment is not covered under insurance and may require travel, in which I can not afford.
I am a 35 y/o female who has been active in sports since I was 2.5 yrs old. Iwas at the end of completing my bachelors degree in Exercise Sports and Science when the surgery went wrong. Just before surgery, I was active in the intense boot camp at school and teaching a boot camp at the YMCA to help individuals become better fit and help their overall self confidence. Turns out I am the one they ended up helping along the way. Thanks to accomodations from my professors and the ADA (American Disabilities Act), I was able to complete my bachelors degree in May 2015. If it weren't for an amazing academic department head and the ADA center, I would have felt even less accomplished. I had to use the Dragon software for papers and testing, and recording devices for notes. I was encouraged not to give up now and they will provide whatever reasonable accomodations necessary. Thank you Joel and Em for all of your continued support especially after surgery to ensure I could still be successful in such a vigorous program. You truly had a major role in transforming to be a better leader for society...  I am just sorry I am not able to demonstrate all I learned from you hands on in the sports medicine world as I had hoped. 

Princess 1/2 Marathon Feb 2013
When I made the decision to get my bachelors, I decided quit my job and my career as a paramedic in the emergency department after 10 years to continue to be a full time student continuing my education as a Physicians Assistant in Sports Medicine. I had been going to school full time and working full time night shifts in the ER while I completed my 2 year degree, but I wanted to dedicate my all to my bachelors in hopes of maintaining a 3.8GPA or higher for PA school. I took out student loans for the first time while I was a full time student to pay for living expenses, but now that I am not able to continue onto graduate school due to uncertainty of my career path; I am required to start paying off my private loan $36k regardless of no income. I was able to get my federal loans on income driven so they will remain no payments for a while.

I had started working part time at a fitness facility personal training following my internship in July 2014, and went out for surgery with an expected full recovery and returning as normal. It was depressing and frustrating everyday to explain that my wrist was not getting better and it seemed to only be getting worse. Luckily my boss, co-workers, and clients all worked with my and understood my limitations but I only continued to get worse. I went back out for a corrective surgery in August 2015 and since then have not been able to return. It is not only physically hard to personal train clients, but I feel it more mentally draining because I want to be able to do those things myself so bad. I train others to become stronger and healthier, while I have to live with the disability that I aquired from surgery.  

The new surgeon was able to break through all the soft tissue with a nerve block and anesthesia with the last surgery. He casted my hand palm up, however; once the cast was removed I am not able to turn it palm up myself despite 2 days of hand therapy per week since the day of cast removal. My arm continues to be red and purple. Each day, I feel my wrist getting tighter and tighter, reverting back to the contracture.

My skin is shiny and looks old with wrinkles due to the the continous swelling and lack of response from the sympatheic nervous system. My fingers and joints are stiff and my thumb has remained numb since. My elbow locks up with any weight applied to my arm such as laying on my stomach and they aren't sure why. I can not lift, push, or pull with that hand and any activity I participate in, including walking, causes my arm to flare but that doesn't stop me from enjoying the beautiful mountains.
Right hand/fingers swelling after a day of hiking...They rate the pain of CRPS/RSD as the most painful on the McGill Pain Index.Pictures of the journey to hell... Stop the Burn

Day 1 from hospital... Nov 6,2014
Still original casting from OR from surgeon...
Found out I had open repair instead of arthroscopic...
And the screwed up casting begins.. this is plastered over the original casting because the tech didn't wanna deal with my pain.. it;s lumpy at my wrist because he squeezed it do death hince my fingers being sunken in.. I told them but they just said it was part of it..
The beginning of a nightmare... my wrist is contracted palm down and all deformed.
That's the extent of my ROM in my right hand.. Trying to make it match the other hand (comparison). This was after 3 months of physical therapy.... Imagine what it was like with them wanting a palm up or completly sideways xray, yea NOT NICE! The MRI that I had to do, i laid on my side in that closed machine... with my arm clamped down.. felt like I was in a torture chamber trying not to have a panic attack from the pain. 

Along with my multiple appointments and treatments a week for myself, my boyfriends 14 year old suffers with Chrons disease and just had surgery. We have 3 weeks of hospital bills, home health, MRI's, Remicade infusions, etc that we have to pay for monthly. He has recovered from surgery and is doing better.. but we still have continous Dr visits and Remicade infusions.. The poor kids main concern in the Emergency Department was how we are going to afford this... That shouldn't be a at the time 13 year old's worry..He spent his 14th birthday at Dornbechers Childrens Hospital from 12pm-930pm doing test...

I pray that there are people out there that can help us both receive the care we need. The healthcare system makes it unaffordable to get better but we refuse to let that stop us..