Category: Guest Blogger for RSDSA

By Shara Wilkey, Capt. USMC Ret.

I graduated from Fountain Valley High School after marching I President Ronald Regan’s Inaugural Parade plating the Tuba. I auditioned for the US Marine Corps Band about two-months after returning from Washington DC. Within a month of graduating high school I was at Parris Island, South Carolina at boot camp!

After boot camp, I went to the School of Music at Little Creek Amphibious Base, Norfolk, VA for 6-months. Then I was stationed at 29-Palms, Ca Drum & Bugle Corps. During this time, I was able to play at a taping for a USO Anniversary in Hollywood, having dinner with Scattman before he passed away then the Drum & Bugle Corps Unit drove down to San Diego, CA where I was first Women Marine to sleep on a US Navy Ship USS McKee for a change of command the next day on the ship. I have played for the Queen of England and again President Regan as a US Marine the second time!

After a regular hearing test, and major hearing loss was detected, I was forced to find a “quieter job.” During this time, I read messages about applying for college and becoming an officer.  I applied for these programs and was accepted for Broadened Opportunity for Officer Selection and Training (BOOST.) I was then selected for the Marine Corps Enlisted Commissioning Education Program (MECEP,) where I attended San Diego State University and was a “Blank Holder” with Graduating NROTC and MECEP Class.

While attending The Basic School, a six-month course where all newly commissioned and appointed US Marine Corps officers are taught the basics of being an “Officer of Marines.” During the last part of this course, in the Motor-T Operations filed exercise while jumping out of the Deuce and a half truck with a S.A.W. and a radio on my back I hyper-extended my left-knee at least 9-times the within the first two days. I went to the field corpsman for help but he was more worried about my blistered hammer toes than the knee.  By the end of the week, five days in the field, I had hyper-extended my knee at least 27-times or more. This was in March 1988. I already had TMJ and some carpel tunnel syndrome from playing the tuba and string bass/electric guitar. I went to the “sick call” on the following work day, and was told I had “runners knee.”

When I graduated from The Basic School, I was sent to Communications School also at Quantico, Va. I was then sent to Okinawa, Japan Marine Wing Communications Squadron-18. I continued to have problems with my knee so I bicycled rather than run most of the time or did pool work outs. I was later deployed several times to South Korea and once I was deployed to Western Australia for several weeks. After21-months I was finally able to see one a US Navy Orthopedic Doctors, who looked at my knee and basically said Patellofemoral pain syndrome, and stated “You’re going to the Land of the Ortho Doctors!” I am not going to help you. So more medical doctors time and delays for a proper diagnosis.

Three-months later I was stationed at Parris Island, South Carolina and Gulf War’s Desert Shield started. Now all the good doctors were sent to the combat zone and the not so good doctors were left in the rear. I had a civilian doctor who worked on base and put me in a leg brace from high hip area to my ankle, in short order my leg atrophied almost 3-inches!

I wore this brace for approximately 6-months. During this time, I learned what a Kinesiologist is and a few of them tried helping me. I got better at swimming up to 2 miles even with three T-shirts, and then working out in the gym with weight machines mainly then with my upper body and arms.

Finally, late in February 1991, I was sent to the Charleston VAMC Charleston, SC to have a 3-Phase Bone Scan. It turns out that VA at that time had never had a “hot” evaluation! When the report was read it seemed the overhead speakers went crazy calling me back to Radiology for more exams procedures! Then the civilian orthopedic doctor working on base was informed that I could be sent to another military base hospital for higher level care to Portsmouth Naval Hospital (PNH), Norfolk, Va.  It was at Portsmouth Naval Hospital I had various testing, and meeting my first psychiatrics. Then the orthopedic doctors did more exams to ensure nothing else was going on with my knee that the MRI, X-rays and others could miss due to the knee being a very large joint in the body. Afer an arthroscopic exam of the knee in question, I was informed there was no mechanical problems but I had RSD (Reflex Sympathetic Dystrophy,) as this was pre-1994 IASP changing it to CRPS.

Eventually, after almost a year at Portsmouth NH, I was able to return to full-duty back and back to Parris Island, SC. I eventually had to have a few more blocks and one of the doctors put me on Prozac, long before any “Prozac Law Suits.” I complained almost from the start about this medication causing me various problems. I was told by many in the “Medical Field.” “This is a new drug. It is safe. You can’t be having those problems.” Due to Prozac and CRPS/RSD, I was eventually medically retired from the military. About 5-years later were the first class-action lawsuits against the Prozac manufacture. Being in the military the Soldier Sailor Act I could not join this.  In 2007, through Medic Alert, I did a DNA Pharmacology test which showed me and anyone I would show this test to, I was allergic not just Prozac but all SSRI drugs and all SNRI drugs as well.

I was officiating Baseball, Softball, and Soccer, I kept doing these sports from youth, High School, and adults out I town to the military base Intramural Games. When my husband returned from overseas duty and was transferred to Camp Pendleton I continued with my Sports Officiating adding later Football, Water Polo, Volleyball, and Track and Field. I was able to do medical transcription part-time for several years as well. I later became Comptia A+ Certified on repairing computers laptops and desk top as well.

I was feeling well with my CRPS seemingly under control with the current medications and physical exercise moving, that I decided to thru-hike the Pacific Crest Trail (PCT.) While preparing for the thru-hike and while hiking the trail I learned of trail maintenance of the PCT. While Thru-hiking was being planned I learned of a HS Football Camp for Officials in Reno, NV. I made plans to go off the trail for attending this camp, as well. While hiking in Northern California near the California Oregon Border I got a March Fracture on my left foot, which had been broken two other times in the past 10-years.

After working real hard, as a football official, I was finally earned a Junior College Football schedule. Sadly, I had to turn in the schedule back the assignor, as I fell too many times as the head referee during a Junior Varsity High School football game. Even in the wheelchair, the only sport I could continue was Track & Field. When my left foot broke, it triggered Lymphedema in my lower body lasting a little over 2.5 years and put me in a wheelchair.

I was told by civilian, military, and VA doctors that I probably would not walk again. My husband of 15-years walked out of our marriage. Some of being told I probably would not walk not being proper diagnosed with lymphedema. On my own I did what felt right beside the typical nerve blocks, trigger points, and other. I did more mental relaxation, use of lavender scented candles, deep tissue massage really worked but yes painful too.  As the economy was tanking during this time, and the loan on my house was due to go up I was able to sell and moved an approximately an hour East of Reno, Nv.

While in a wheelchair, I learned about owner-trained service dog and the trained my own. I got her from the shelter near Anaheim, Ca. Even when the lymphedema settled down and left the body my legs and core was very weak. It took time for me to regain my strength to walk or ride a bike.  I had trained my service-dog to help pull me in my wheelchair, so now I had her help me pull me on my bicycle. The nice thing while near Reno, Nv with my service-dog pulling me I met some people who had horses. I liked horses and had ridden when I lived at Camp Pendleton for several years and later in Orange County, Ca as well. When Doctors told me to stop ridding horses, due to the last horse pulling my shoulder out of joint/hyper-extending, I got really ill physically and my CRPS pain, with comorbidity problems got greater as well.  So, this time, I went back to riding horses for others first, as a safety person so not ridding alone, exercising horses, or extra hand for exercising and/ or feeding as well. In time, I eventually bought my own horse, then another, and had the strength to get on all by myself again! I helped and met others who had horses, got square bales loaded up for myself and others as well.  I have ridden the Pony Express Remount in Nevada one year along the original trail used then too!

As I started feeling better than I had in a long time, I started to look back on my health and other things as well. I read about Medic-Alert doing DNA Pharmacology testing, around 2006. After I got the results, I found a way on the internet to get a hold of one of my former US Navy Medical Doctors in San Diego, CA about the results.  I discovered over time she was able to reflect and agreed with what she saw had since learned herself, and started doing DNA Testing on all TBI patients she saw at NMC San Diego from that point on to help them not go through the “hell” I had to. I was able to read about a pain doctor working on the East Coast for the US Army military and emailed him about my results, as well and any questions to verify my facts he could check with my former doctor in San Diego, CA.

Due to many homes already being planned to be built, new roads and bridges designed and even started, I started looking for another place to move but was not rushing. A friend of mine, who I bought my horse from, needed help in moving to their new home in Nebraska., I said sure. It was during this trip, on the return part, I found a place in South Dakota that was for sale. In 1991. When I was first taught how to do self-guided mediation for reducing pain and relaxation, I made up an imaginary place I thought. I had used this “imaginary place” for some 16 plus years. I did not know it was rea, but discovered it really was real! l When I saw it was real, I had to do everything I could to buy it and that is where I live today and plan to for the rest of my life.

I am still building, adding on, and improving my home here in South Dakota. I will say my horses and barn cats lived better than I did my first few years. I have since worked for a horse farm and learned how to train foals, wean them, and even breed mares as well properly. I have boarded horses as well as goats at my place.  In building my home, I made it so that my only heat was from firewood. Part to keep me moving, year around, regardless of temperature so I am always moving. I have found moving to be the best even if it hurt to move and keep moving.

Over time, I finally decided to join Facebook and discovered the Military and Veterans CRPS/RSD page, as well as several other CRPS types of pages. I really enjoyed Nancy Cotterman, RN page talking about ketamine. I had been reading about ketamine since early 2000. Finally,my former US Navy Doctor commented that she had been trained in ketamine and saw it working.

When I started seeing new doctors in Rapid City, SD area, I started having to “fight” that I had CRPS. It turned out that the VA Neurologist locally seems to not believe in CRPS let alone know how to properly diagnoses CRPS.The VA Neurologist said to me, “Oh, you are not in a wheelchair anymore, so you can’t have CRPS.”  Since 2008, when I moved to South Dakota, I have continually had to fight for my CRPS medical care. My first few months, I needed to have a LSB for my right leg as the leg was atrophying by 1.5-inches and getting worse. I was not able to get this LSB, and my right leg gave out and I fell onto a rock directly on to the knee cap. Eventually, leading me to require another knee surgery due to a “chip bone in the knee cap,” which was in the shape of a pie with the point outwards towards the MCL. The chip finally tore my MCL. During this time, I travelled via military insurance to Colorado Springs, Ca to see my first ketamine doctor. For the first time in so, so long, I did not have to get totally poked as he was an active reserve medical officer in the US Army! He knew all the terms and equipment I listed off on how I had my original injuries for my RSD/CRPS.

I had my first ketamine infusion, Sept 2009, not 36-hours after having the “Staples” from my knee removed.  I did not know about having music, but having learned self-guided meditation I kind a sent myself into a dream state each time and it worked for me.

I began asking the VA for this treatment but was told no.  After joining Facebook then discovering the Military and Veterans with RSD/CRPS . I had learned of Doug Strand, Col USAF Ret is why I joined Facebook honestly. I discovered Doug’s CRPS/RSD on the internet and connected with him via LinkedIn originally. I continued pushing my local VA for ketamine infusions. The chief of staff at my VA kept telling my US Senators it was not allowed in the VA I then found information about Jonathan Haag USAF Ret and his coma-induced ketamine infusions at the Audie Murphy San Antonio VAMC in late 2010.  I emailed and called my VA-VISN Headquarters for my area with no results. When some of those VISN-HQ Senior Executives came to my area for various talks etc., I would approach them and ask in person again with no real answer or help for proper medical care.

I finally started emailing and calling to the DeptVA Secretary and every name that was in the DeptVA Washington, D.C.  I proved to those in Wash DC VA Executives that ketamine infusions was based on medicine based evidence for helping those with CRPS. It helped that I had had ketamine-infusion twice before on my own via the Tricare Prime and it worked for me giving me back my life as far as I am concerned!

Finally, in July 2014 I was told I had to go to my VA VISN Headquarters Pain Clinic for evaluation. Minneapolis Pain Clinic agreed I had CRPS/central sensitization and I needed ketamine, but refused to help my VA to get it. This caused more fights and locating a place that would take VA Fee Basis Pay. I would post my “trials and fights” on the Military & Veterans CRPS/RSD Facebook Page for others and to help them as well.

I finally needed a ketamine infusion and was forllowed to get an “out of region treatment” a one-time at Walter Reed National Military Medical Center Bethesda, MD (WRNMMC) the first week of March 2015, for a 4-hour infusion after evaluation. This was also due to as my former ketamine doctor not being sure when he would be able to do ketamine at his new location, in a state, that had never had it before, Nebraska, at least as inpatient.  On the way back home from WRNMMC my Ketamine Doctor’s office called to set a time and date at the end of March 2015 for a 72-hour infusion.

I let other veterans know of this success and how I had accomplished it and helped in “PreFab Letters” basically having the names, titles and emails address of those in Wash DC VA Executives so others could get ketamine if they wanted. Soon a few others and via the VA Choice Program could get ketamine-infusion from care in the community.  Ii have been trying to keep a list up-to-date of VAs doing ketamine-infusions and locations that take VA Fee Basis be it outpatient or inpatient ketamine-infusion since then.

Last year when I had the unfortunate luck of breaking my pelvis and femur head and greatly needed an inpatient ketamine-infusion, my ketamine doctor that I had been seeing unexpectedly left. This, sadly, allowed my local VA Chief of Staff (CoS) to stop any chance of me getting ketamine for my CRPS. My VA PCP wrote an Urgent Ketamine-infusion consult, but unknown to me the local COS cancelled the consult.

This started some determination on my part to email even more in VA Executives in Wash DC every day, holiday’s and weekends with CC: Jim Broatch, Dir RSDSA as well! After 40-days of this then backing down some the VA Under Secretary of Health emailed me back about the best thing on CRPS he had seen was Dr Padreep Chopra’s Denver, Co June 2015 Slideshow Presentation, which I and my boyfriend was able to attend then.  At the end of Oct 2016, I was told to get my LDN prescription renewed. I had to go to another local VA Pain Clinic Team evaluation, but this time after that the Pain Team and myself would be at a Video Conference with the VHA Interim National Director of Pain Management and someone else. This someone else I was told then was the VHA’s “Ketamine Expert.” Even my boyfriend knew, as I did, this person was not a ketamine expert, as the first thing out of his mouth in talks about ketamine was, “Ketamine is a one or two times event in life maximum.” I told him, “He was not a “Ketamine Expert” that knowledge in the VA was at Audie Murphy San Antonio VA, were they performed a coma-induced ketamine infusion, let alone since 2011 have been doing ketamine infusions every month with just a little over 100- veterans getting ketamine infusions for pain since then.

Still I was again lied to as my VA prescription for the past 12-months had run out on LDN was not written. Fortunately, my out in town PCP did write the LDN prescription. The VA did not write the LDN prescription for another 45-days approximately, and was not delivered to me until Dec 29, 2016. By late December 2016, I was still not seeing any dates for ketamine other than more “harassment” from my local VA, especially the CoS. Nearing my wits end and in the worst flare-up of my Systemic CRPS that I could recall in 29-years of this unhappy relationship with CRPS, I was still sending emails for help to VA Executives in Wash DC. I got another response back on Dec 31, 2016 from the VA Under Secretary of Health Dr Shulkin, who stated he was going to help me get the needed care I needed.

I had already been setting up psych-clearance appointments locally out in town, for getting ketamine infusions through my non-VA Counselor to see a psychiatrist as Dr Ashraf Hanna and other ketamine providers require this prior to making any appointments with them.  I informed Dr Shulkin that I knew of locations where Care in the Community was being provided by and paid for by the VA for myself and other veterans.  Further, I stated my local VA, had been “bad mouthing me” on various diagnoses, which I could prove to be false, let alone I had been taking intra-nasal ketamine, daily since mid-November 2011, and ketamine troches daily since late-September 2016, via my PCP out in town provider.  I also informed him of the other ways ketamine can be taken as the VA in San Antonio has been providing one veteran liquid ketamine daily for several years. I informed him of how some in the Mental Health fields were doing it via IM beside traditional IV with talk therapy at the same time for some patients around the US. Further, that others were taking ketamine by compounded pill form as well.

Dr Shulkin, even after his appointment as the New DeptVA Secertary, had his staff called my local VA CoS and inform them I was to get ketamine at the location of my choosing, and I selected Dr Ashraf Hanna. Sadly, on part Dr Shulkin and/ or his staff had to call my local VA FOUR times, as one of my appointments, which I had proof was cancelled! I got a call from my local CoS this was not done and I stated wrong it was. The last few days of February 2017, I was able to see Dr Hanna in Clearwater, FL, and start my 10-day loading dose.

Upon returning home and back to my local VA, staff strangely happy with me and the best I had seen in a long time. Then someone asked me what had happened to the local CoS as their desk and office was cleared out empty! I went to the one US Senator who had been trying to help me, and his office informed me the CoS was “under major VA Admin Investigation and doing “Special Projects.” I also was aware that some staff had reported the CoS for being retaliatory and vindictive even to fellow VA Employees.

In the meantime, since January 2015, I have had to have a right total knee replacement, but I would not do it unless I had the proper ketamine surgical protocol followed per Dr Padreep Chopra guidelines written up for RSDSA. As the Minneapolis VA, which does ketamine infusions my VISN HQ, will not see any veteran outside of their VA location for ketamine-infusion I kept asking for Walter Reed NNMC, since I knew they did ketamine infusions and can do surgery for my now much needed hip replacement, via the DoD/VA sharing agreement for care with the proper ketamine protocols for CRPS patients. Within 3-weeks after my VA sent in the consult request for care, I had an appointment and was on my way for improved medical a care for me.

This does take a lot out of my boyfriend as pre-9/11 Veterans our “Caregivers” do not get paid. He is not able to work a full-time job especially since my hip was broken. Going to Florida he had to drive almost 80% or more of the way, on the way home we could share equal driving time finally. Getting my total hip-surgery with a lot of limited mobility especially in the beginning, he has had to be with me at Walter Reed NNMC, but is studying so he can get his cyber hacking certificates and others so he can do some more work from home or a far in the future.

I am hoping that my meeting with the Director of Defense & Veterans Center for Integrative Pain Management (DVCIPM) to possibly facilitate help for all DoD/VA Veterans with CRPS, let alone other central sensitization problems and Chronic Pain Patients can be helpful for all of us which is at the end of Oct 2017. Hoping to better dialog with the providers and researchers for Pain from a long term CRPS patient.

Shara Wilkey

Capt USMC Ret

CRPS/RSD Warrior

Writen by Marcia Nolting for the RSDSA blog.

Treatments for CRPS or RSD vary per person. We would like to note that you should always consult with your medical team about treatment options. For Marcia, DRG was the right answer. See what she was able to do due to DRG.

My name is Marcia and I’ve had RSD for almost ten years and as of writing this, am post Abbott DRG stimulation surgery 4 months.

A decade ago, I tripped over a step and thought someone had cut my left ankle/foot off, it hurt so bad. The pain was instant, continuous and unrelenting. The ER thought I was insane and sent me home with what they termed a “sprain” and to rest it. (translation, get over it crazy woman, we aren’t giving you drugs).

Luckily, I was quickly diagnosed and found an appropriate doctor. Following that came ten doctors and every treatment available in the United States. Spinal injections, nervings, nerve suppressant drugs, pain killers, and a spinal cord simulator designed for back pain (that was all there was at the time).

Each of those things helped a little, and combined was enough to allow me to continue walking, but chronic pain was a daily reality for me and unfortunately everyone around me who had to deal with me, dealing with the pain. There were many times when I would be in bed at night, crying myself to sleep (where no one could see me), talking myself into getting through just one more day. Many days were like that…just get through today…just get through tonight, you can do this, you are stronger than this condition, you will be able to survive.

Some nights I honestly don’t know if I believed that, I just knew that I couldn’t give up. I have a wonderful family, loving husband, and kids I had to stay strong for. My youngest doesn’t know who I am, except after RSD and essentially as a “broken” person. I just kept thinking that I had to hang in there until technology/medicine caught up to my condition and there was another option. I hoped to show my son my other self, my true self, someday.

Then Dr. Gullo and Dr. Heros, along with the team of Abbott neuromodulation representatives, told me about DRG stimulation and suggested I try it. I admit to feeling pretty cynical, like, “yeah, right, ok…been there done that, don’t get my hopes up.” The trial was good, but I had no idea what the machine was really capable of until a couple months later. About 2 months after surgery I realized, “Wow, I can work a normal person’s work day and not be a total  *itch and snarl at everyone!” Then I started to feel something extremely powerful, hope.

Another month went by and I noticed that compared to the other spinal cord simulator I had first, it was simply worlds apart. I have stopped using 3 meds. Also, I’m not using any prescription pain medication at all, except the machine. This is the first time in 10 years that’s been a possibility.

When we went on vacation, I was able to walk through the airport without using a wheelchair for the first time. I was able to do most of the activities with my family which was exciting! I went to a Renaissance Fair with my family and walked all day on that uneven ground which previously would have been a harsh sentence of pain for days!

I’ve been able to do a mostly normal work day without taking anything more extensive than Aleve or Tylenol. I had given up and sold all my horses and show equipment (after a lifetime of being an equestrian) because I figured that was not something I could realistically do anymore, and I needed to face reality.

Well just last Friday, I rode with my friends for a half-day girls ride, and I WAS GOOD TO GO!!!!!

Life-changing are the only words to describe it. I’m hoping to get back to my WHOLE life! It has changed my pain level for the better. An over 90% improvement with DRG, and I’m living proof this is a successful treatment option. I’m happier, healthier, easier to live with and so much more optimistic about the future.

I think I’ll travel the world… I’m done rearranging my life around RSD, I WIN!

If you would like to find a location/options near you, visit Abbott’s website. I hope everyone with this awful condition finds help!

Written by Guest Blogger Suzanne Stewart

Suzanne is an active advocate for all things chronic pain. She is the voice behind social media sites like RASEforCRPS and is an active ambassador for the US Pain Foundation. Suzanne also helps RSDSA with our awareness and fundraising efforts. Read her story below.

My name is Suzanne and I have been disabled since 1999; 1^st from PTSD and stage two chronic kidney disease. In August 2002, I was in a motor vehicle accident which caused multiple injuries, including a Traumatic brain injury, hearing loss (I acquired 2 hearing aids), vision lessened & eye issues, many surgeries, & 3 years of TBI rehab. I still suffer with short term memory loss and other effects from the TBI.  In 2003, I had to have a dual chamber pacemaker placed for Sick Sinus Syndrome, along with Dysautonomia/POTS. After seven surgeries and a pacemaker, I was diagnosed with” Complex Regional Pain Syndrome”, in 2007. It started in my right foot after surgery and it spread over the years to both feet & knees.

In 2005, I had an M. I. or heart attack and in 2006. Afterwards, I was diagnosed with Atrial fibrillation and was put on Blood thinners. But, I suffered a CVA or stroke in 2006. In 2013, I had to have pacemaker replacement surgery. When the Heart Surgeon got inside of my chest, they found that the entire pectoral muscle had to be totally rebuilt. The old pacemaker had been placed in the muscle instead of inside of a bag near the muscle. Over 10 years, It wore a hole right through my pectoral muscle and then had to be rebuilt during a long surgery, which was very painful afterwards.

The surgeon, a Neurocardiologist, had researched RSD/CRPS & did an internal surgical wash of Bupivacaine to try and “head off” systemic CRPS, & prevent it from spreading. It ended up being unsuccessful and the CRPS progressed into Severe, Systemic/Full body CRPS and disseminated. It’s spread everywhere including my eyes and my mouth.

I have a few other chronic pain illnesses, including:  CKDII, Arnold Chiari Malformation I, Degenerative Disc Disease, RA, OA, Gastroparesis, S.I.B.O., Chronic Erosive Gastritis, Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease (EDS-4/vascular), multiple herniated & bulging discs (with L4-5 Radiculopathy) at L4, L5& S1 + C5,C6 & C7. CID (Combined Immunodeficiency Disease), Lymphedema, Scoliosis, Asthma, Right Long Thoracic Nerve Neuropathy, Severe Dry Eye, and just too much to mention here today! But you get the idea!

I’m not the only one! There are so many chronic pain warriors with a list as long or longer!  I’m not a candidate for a Spinal Cord Stimulator nor can I receive an Intrathecal pain pump, because of the Combined Immune Deficiency Disease. It could cause paralysis and/or infection in my Spinal cord. So, I’m limited in what I can do for my chronic pain. I’m one in a group of chronic pain patients, who has had to resort to taking pain medications. But in doing this, I can have some semblance of a life outside of my bed or the sofa. Believe me, since 2002, I’ve tried many, many medications starting with chronic Lyrica & Gabapentin. I went through 8 years of physical therapy. I had to go to TBI rehabilitation for 3 years. I’ve had many braces, therapies, tests, TENS unit (prior to the CRPS) and more! Depending on the day & how much I need to do; I have a wheelchair, Motorized scooter, walker and/or a cane.  Right now the pain medications are what give me the ability to do some activities outside of my home, bed or sofa.

This is my story in the “Readers Digest” short version. It’s a long arduous and continuing saga of chronic pain and surgeries. But I just don’t give up HOPE. I make it a Verb and try to change negatives into positives. So rather than do nothing, I try to do something. For fun, I make You Tube Videos of favorite songs or stories translated into American Sign Language (@ASLSuzyQ).

I’m an Ambassador for the U.S. Pain Foundation. I write in my blog, “tearsoftruth.com.” I am a writer for the National Pain Report, I also run a few support groups for RSD/CRPS & chronic pain.   I’m a chemo-angel, a patient leader for WEGO Health and a mentor with RSDSA, for newly DX CRPS patients.  In July 2017, I was certified by the U. S. Pain Foundation, to lead an “in-person” Support Group. Without having my wonderful, loving husband/caregiver, Craig; my loving U.S. Pain Fdn. Family, Jim Broatch & RSDSA, my WEGO health friends, my friends, family and my writing, I’d be lost in all of this.

Written by Guest Blogger Melissa Lovitz. Melissa initially featured this post on her blog.

The Washington Post recently published an article about CRPS titled “The Strange Pain that can Overcome Kids, Especially High-achieving Teenage Girls.” The article was shared with me by someone who has never experienced a chronic, physical illness and believes that you can actually have unlimited spoons. The premise for sharing this article was simply, “I thought it could be interesting”.

Here’s the thing about living with CRPS: it’s not interesting, it is excruciating. 

This article wasn’t an easy read for a person who lives with this condition or in general. The story was raw and real in its recollection of the girl’s suicidality and deep despair. I know that feeling. I could understand.

I shared this articles with several of my RSD sisters, and for those of us who have experienced programs like the ones described in the article, by the end of reading this piece we were feeling like we were fifteen again and meeting our parents by the PT gym at the end of the day. We too easily remembered our own puffy, red faces that were damp from crying, sweating, and working incredibly hard all day. We could feel our legs as wobbly as Jell-O from pounding the concrete stairs for “just thirty more seconds” over and over again. I was transported back to the days where I convinced myself I could do anything for thirty seconds. Later, this notion was expanded to “I can do anything for the length of one song” – just as long as it’s not Stairway to Heaven! As I was reading this article I could actually feel the roughness of a towel rubbing on my leg. I pictured the shaker machine – a machine meant to desensitize our bodies to vibration – and felt the heaviness of dread in my throat and chest. Honestly, it makes me shudder.

The truth is, this disease is horrific and the treatment isn’t glamorous or complacent. In fact, I remember coming home from the hospital after weeks of treatment protesting and boasting that my physical therapy regimen was more difficult than the gymnastics conditioning I complained about during every workout. I worked so hard for my recovery! I was thrilled to get back into my sport, but the emotional toll and trauma of this condition and the various treatments weighted heavily on me as I progressed through the rest of my life. I became one of those people who would do things “in spite of” my pain and to prove everyone wrong. During my physical recovery, I unlearned healthy limits and pushed my body too hard too often both out of fear of relapsing and losing everything I worked so hard to regain and out of sheer persistence – I had to prove to everyone and to myself that my pain wouldn’t stop me. I will never unlearn “doing too much” and I will always have a hard time differentiating between “good pain” and “bad pain”. Doing too much has been my emotional defense mechanism and my brick wall that has separated and protected me from the world ever since I was able to move freely, yet not pain free, again.

The problem with articles like this is that they present only one story and they’re oversimplified. First of all, the characterization of this illness as something that is common in high achieving girls makes it seem like we did this to ourselves. Or worse our parents’ ambitions for us got us into this mess. The article goes as far as to describe Type A overachievers as “one stone’s throw away from being a pain kid”. This simplification absolutely dismisses the severity and rareness of our lived experiences. For some of us, our bodies cope with stress in maladaptive ways – i.e., pain. For many of us, our capability to hone our Type A strengths is what helped us to overcome this debilitating out condition. We were taught to push through the pain. The mantra “If it hurts to do something, that’s what you should do” is how we learned to regain and reclaim our functionality. Discipline and commitment were the mechanisms by which we executed each day. Consistency is how we maintain our gains and continue to grow stronger. Those Type A characteristics saved my life.

In this intense program, we were taught to ignore the pain and prioritize functioning. It was the epitome of “fake it til you make it”. One person I talked to told me, “It was engraved in your mind as a kid that you have to act like it’s all fine but no one fully understands… that you’re not fine”. As I read this article I felt like my 3D, actual living body was squished into some 1000+ basic words on a page. A huge chapter in my life was minimized to a single story of one person’s “strange pain” that others might find “interesting” – my life and (my) pain became click bait. “Strange” is pathologizing language – one step away from “crazy” – that makes us feel less believed and like we’re making it up. This actual, legitimate pain is sometimes inexplicable and definitely described and experienced differently by each person, but regardless it’s tangible and all too familiar to me.

This isn’t the first time mainstream media has failed to adequately capture the lived experience of someone with RSD. In 2013, Dance Moms featured Nia’s experience with chronic pain. Nia’s mom says, “Nia says she has the pain but when she’s not thinking about stress… she’s fine… I think it’s in her head that something’s wrong with her feet… she has to tell her brain to shut off the pain signals”. This 2:20 segment of TV did not do Nia or our community justice. This mentality practically implies that we are choosing to live in pain. If it was that easy to just shut off our brains and decide that we are not hurting, then by that same logic many of us wouldn’t also have depression or anxiety. It is important to note that the comorbidity of these conditions is exceedingly high. The bottom line is: this is a real illness. We cannot shut it off. This simplification which occurred on a show that likely has a large audience of “high-achieving teenage girls” was a missed opportunity. Put another way, the public perception of this illness doesn’t align with how it manifests for everyone – with all our realities – and that’s harmful to us.

I realized this article and these “media moments” aren’t made for “us”. This Washington Post article wasn’t written for people whose doctors didn’t believe them, who have spent years warping their own experiences in their mind so relentlessly that they have convinced themselves they were faking it or that when they were feeling their worst it wasn’t really “that bad”, who felt like their pain and neediness tore their families apart and ruined their friendships. This article wasn’t written for people who know what it’s like to “lose what you are and what you love” and have to fight like hell to get some semblance of the life you knew back or worse, accept your new reality and deal with the implications or that – “even if – and especially if – it hurts”.  I finally realized this article was never going to be interesting to “us”.  And, it was interesting to “them” the same way a “freak show” is interesting at the circus. It’s othering and othering doesn’t take ever take the form empathy or compassion. It rarely even resembles pity.  It feels like on a smaller scale this article evoked the same thoughtlessness and naivety that “13 Reasons Why” did when it appealed to a privileged, untroubled audience, and “To the Bone” did for people who do not have explicit experience with eating disorders. Representing shock value at the expense or representation is irresponsible.

My painful disease reminds me daily that I don’t have control over my body and I will hurt physically and mentally sometimes just because the wind blows. However, I do have control over the choices I make each day about the life I lead and the way I love myself and my ambitions – fiercely. The article got one thing correct: “It is not as simple as “come for three weeks and now your life is all better.””

After all this ranting, I am left feeling energized by the possibility of a different conversation about “us”. My condition and my experiences living with chronic pain have shaped who I am today. I am hopeful to one day hear sentences like this, “this article was interesting to me because of what you shared about your experience. I want to understand you better. How do you relate to this article?” I will look forward to conversations that are powered by the curiosity to better understand my story and a willingness set aside expectations in order to make space for surprise, ambiguity, and maybe even genuine understanding.

Written by Tracy Coval for the RSDSA blog.

Tracy Coval gives RSDSA a look into her life with CRPS and dystonia. See what she has done through her journey. Note this was initially posted on her blog, which can be found at this link (click here). Some of the images may be too graphic for some readers.

I was first diagnosed in 2002 with Complex Regional Pain Syndrome (CRPS/RSD) when I was 11 years old after a running injury. I was running in gym class and twisted my left ankle in. When I told the gym teacher I couldn’t run anymore, he wouldn’t believe me and had me keep going. The pain kept progressing, and I saw an orthopedist who diagnosed me with Tendonitis and put me in an air cast. The pain continued, and my ankle/foot was turning purple. After going back to the orthopedist 2 more times, the doctor finally told my mom, “I’m sorry but this is all in your daughter’s head. You need to get her psychological help”. After getting in an appointment with an orthopedic surgeon at Boston Children’s Hospital, I would learn of the name Reflex Sympathetic Dystrophy (the name was changed a year or so after to Complex Regional Pain Syndrome).

CRPS/RSD is a neurological disorder that causes pain waves to be sent to the brain, telling the brain that you are in chronic pain, even though nothing is wrong. CRPS/RSD usually develops after an injury, surgery, or even something as simple as a blood draw.  CRPS/RSD is known as the ‘suicide disease’ as many people can’t handle the pain anymore. The disease is rated on the McGill pain scale as being more painful than amputation, or giving birth naturally. CRPS usually develops in a limb, but there are cases where individuals are affected by it throughout their entire body. This is known as full body CRPS. The pain is the worst pain one could encounter. The pain feels like you are lit on fire, on top of stabbing, throbbing and aching pain. Think of sticking your hands in a bucket of freezing cold ice water and not being able to take your hands out of it. No one really understands CRPS, but the sooner you are diagnosed, the better chance you have to go into remission.

I would be told that I would need to be referred to a pain clinic, and that this would resolve on it’s own. Boy was this doctor wrong. I would learn that I would have CRPS for the rest of my life. A common phrase that was heard by my main provider was, “suck it up and live”. I was 11 when I heard this for the first time. I would then try every medication, nerve blocks, epidurals, lidocaine infusions, acupuncture, reiki, herbal remedies and more with no relief.

At the age of 14, I was sent to Children’s Hospital of Philadelphia (CHOP) to attend an aggressive physical therapy program. The goal was to retrain my brain to understand that non painful stimuli would not make my pain worse. This is known as desensitization and it’s done through physical activity.  Treatment was scheduled Monday through Friday, 7 hours a day. The staff were comprised of physical therapists, occupational therapists, social workers, art therapists, music therapists, and the main doctor.

The doctor running this programed believed it was crucial to be taken off all of your medication, and treated CRPS more as a psychological issue than a neurological issue. Both the physical therapists and the occupational therapists reminded me of drill sergeants; their approach towards the exercises were aggressive. In PT, I was pushed to my limits with many exercises, especially the ones where I was required to beat my record of the amount of reps I could complete in a minute. If I didn’t do more than my previous record, I would have to do it again. There were many tears, and too many vomit buckets to count.

After being there for two weeks, I had a few falls to my left arm, and I remember feeling this stabbing burning pain. It was discolored and swollen, and I couldn’t touch it. X-rays were performed and it was determined that the RSD had spread.

After being at CHOP for 1 month, I was finally discharged after being there for 1 month. The pain in my left ankle/foot and knee was gone but my left arm was horrible.

The pain relief in my left leg lasted for a year, and it was amazing. I went back to dancing 5 days a week, while doing physical therapy on my left arm. There was one day I was in dance, and I felt that familiar pain that I hoped would never come back. I followed up with my doctor at Boston Children’s who said there was nothing more that he could do for me.

At this time, I was finishing my freshman year of high school. I would now be on my own handling the pain. My mind set was to ignore the pain, and continue to do the things that I loved: art, dance, and cheerleading. By junior year of high school, I had taken a break from dance, as I fractured my spine. This recovery lasted for a year and a half. After getting cleared to return to activities, the CRPS was intensifying. I was noticing I was going through frequent flares, missing a lot of school, and it was getting harder to walk. I am amazed and proud to say I graduated high school.

2009 I started college at Lesley University in Cambridge, MA. I was excited to finally have the college experience. I was continuing dance and cheerleading, but realized I really needed help with the CRPS pain. After talking with a family friend, I got the name of a pain doctor who I still use to this day. The best part is he looks like Kramer from Seinfeld. I was his youngest patient at the age of 19. His treatment plan was to do a Spinal Cord Stimulator (SCS). A SCS is a mild electric current to your spinal cord. The goal is to block out the pain receptors by feeling the electric current instead. I went through the trial run, and found it extremely helpful. The trial gave me hope that I could go back to dance. I had my first SCS implanted December of 2011, my junior year of college. I had it done during my winter break. The SCS is a 6 month recovery that requires you not to bend. The pain from the surgery was extremely painful, but my CRPS pain was getting more tolerable, and I found I was finally getting relief. I am so grateful for all of my friends in school who were so helpful and understanding. My friends were awesome for pitching in, and I was fortunate that my professors were understanding of the surgery. After 6 months, I was back to dancing with my team. Words can’t explain how it feels to go back to something that you loved so much that had been taken away from you for so long. I was so happy, and really felt I was getting my life back. I was doing an art therapy internship with a pediatric inpatient psychiatric unit for over a year, and I was interested pursuing a career in social work.

After dancing for a year, I began feeling pain in my right foot. My foot was becoming discolored and was ice cold to the touch. When I followed up with my pain doctor, he confirmed the CRPS had now spread. He felt it was time to try a medication called Ketamine. Ketamine is mainly used during anesthesia, but there is reports that it helps treat CRPS. I would start with ketamine lozenges (it looks like the size of a starburst), and then I would go for infusions. The infusions would take 4-6 hours, and often I would be extremely out of it because of the side effects.

It was exciting to see how much the Ketamine was helping. I wasn’t missing as many classes, my flares were not as severe, and I was finally enjoying college more because the pain was better. I would go for infusions every 8 weeks, while being in my senior year of college.  By my second semester, I started working on an inpatient psychiatric unit specializing in eating disorders, and ecstatic to learn I was accepted into my top choice for graduate schools. I graduated Lesley University with my Bachelors of Science May 2013

Fall 2013 I started graduate school, while continuing to work part time. I was really busy, but happy with everything I was learning. My pain was still there but it was manageable thanks to the Ketamine infusions. Unfortunately, my treatment approach was about to change, as my health insurance stopped covering the ketamine infusions, and the ketamine lozenges. My doctor fought the insurance providers for months, but they wouldn’t budge. Next treatment plan: another spinal cord stimulator for the right side of my body. When I had the first SCS implanted, it was designed to control one side of the body. A year after I had my SCS implanted, a newer model came out where there is now an ability to get full body coverage. My doctor felt it was best to keep in my first one, and put in a second device. It was decided I would have this surgery done after I finished finals, and recover during winter break.

Two months before my surgery, I started having some issues with my job. Because the ketamine infusions had stopped, my flares were getting worse, and there were shifts I had to call out on. I had met with my nurse manager and had explained about CRPS, and had asked her if she wanted documentation. Her response was no. After a couple of weeks had gone by, I was called in to meet with the Director of Nursing who scolded me for calling out because she thought I was out partying and lazy. (I wish I was joking about this). I started hysterically crying and trying to explain I had a neurological disorder, and made sure to explain that my nurse manager was aware. I explained I was going to be needing neurosurgery again and it is out of my control when the pain flares occur. She asked to get the documentation, and set up a time to meet with human resources to talk to them about this. Once I met with human resources, I learned that my job would not be held when I come back from surgery, and I was let go from my position.

I had the surgery December 2013, and it was a rough and painful recovery. I would go to classes sitting on pillows, in attempt to try and be semi comfortable. I knew I needed to continue school as a distraction from the pain. Once I got through my 6 month recovery, my friend helped me get a job working at an emergency room working as a Patient Safety Assistant. Often, I would be working with psychiatric patients who were on a section 12, and needed supervision for safety reason.

Fall of 2014 I started my second year at school, and was assigned my first field placement; a homeless shelter for children in state custody. I was having difficulty balancing work, an internship, school, and RSD. I was offered at my internship an opportunity to be paid to work as a social worker on top of doing my school internship. For me this felt like the right fit as my internship was a shorter commute than my job at the ER.

Summer 2015 I decided I needed to take care of myself, and my whole self. I have struggled with weight all of my life, and had tried many different approaches to lose weight, and I was never successful. I decided to meet with a bariatric specialist, and after a lot of consideration and research, I decided to get the lap band. The lap-band is an adjustable silicone band placed around the top part of the stomach, designed to restrict food intake. At the time of surgery, a small device called a port (or reservoir) is placed under the skin of the abdomen. I wanted to lose weight on my own, but I knew that I needed help. Weight loss surgery is NOT a quick fix to losing weight; it is a tool to help. Weight loss surgery is a complete life change, and I was ready to take on that change. I had the surgery done on August 11, 2015 and I went into surgery smiling because I knew this was going to help my overall health, but especially the RSD. To this date, I have lost 100+ pounds, and I have never been so proud. It was worth the change, and I did not realize how important your diet is especially with a chronic illness.

I entered my last year of school, Fall of 2015, and my next placement was at a homeless shelter for pregnant teen and teen moms. I had been having a lot of muscle spasms, especially in my feet. My toes would curl and get stuck at times from the muscle spasms cramping my toes. I thought this was from the RSD and really didn’t think much of it. When I would bring this up to my pain doctor, he wasn’t sure why the cramping was so severe. I remember laying down on the couch Saturday morning with the worst muscle spasms. I took my meds hoping it would help loosen them. 2 hours later the muscles spasms were continuing and were so severe I was hunched over crying from the pain. My toes were curled and I was having uncontrollable cramping. It felt like the worst Charlie horse that would not release. 911 was called as I couldn’t move. My legs were locked, and it was the most frightening moment of my life. Paramedics had to carry me out of the house as I was howling from the contractions. After being in the ER for 6 hours, I was discharged, and told to go see my pain doctor immediately. I got an appointment with him a week later and described to him the symptoms and the ER event. I would learn I have a condition called Dystonia, and he informed me that he doesn’t treat this. He warned me that if this happens again, where I get locked in contractions, then I have to go to the ER ASAP to break the abnormal posture before my brain thinks this is the way my toes should be positioned.

Dystonia is a movement disorder where you have uncontrollable muscle contractions. Usually body parts will twist involuntarily, have repetitive movements and/or can often get stuck in different postures. I would later learn that often times CRPS/RSD and Dystonia like to be best friends. Not always, but it can happen.

After my first initial diagnosis, I would be in the ER two more times due to my legs locking up, one of the situations happened while I was driving and lost control of my car. I was hospitalized for 9 days, and all of the doctors felt that this was psychological and I was a drug seeker, even though my toes were stuck in a curled position. I was sent to a rehabilitation center for another two months. All of the doctors there tried different medications, Botox, physical therapy, and occupational therapy and nothing was getting better. The doctors all had team meeting and felt it was time I be transferred to another hospital as they felt that I need further help with pain control, but they also felt this was mainly psychological. I was transferred to another hospital to have a psychiatric evaluation performed per request by the insurance company. The three doctors who were in charge of my case felt this was not psychological, and felt it was in the best interest to be transferred to a Boston hospital to work with a Dystonia clinic. I was in the hospital for three days, and then finally discharged and wheelchair bound.

During the next couple of months, I would be tossed from specialist to specialist all agreeing that my case was too complicated, and there was nothing they could do. One doctor referred me to a neuropsychiatrist at Massachusetts General Hospital, and my appointment wouldn’t be for another 6 months. During this time, I taught myself how to walk again using forearm crutches. I did not have any form of physical therapy during this period, so I forced myself to practice every day, several times a day. I took myself off all of the opioids, muscle relaxers, and benzodiazepines. I decided to use medical marijuana to help with the pain and muscle contractions, which was one of the best decisions I have made. I was tired of having so much medication, and I wanted to prove to the doctors I was not faking this.

When I finally had my appointment with the neuropsychiatrist, I was amazed he spent an hour and a half with my dad and I. He agreed this was a form of Dystonia, and this was not psychological. I would then be referred to a neurologist who specializes in Dystonia. This specialist would spend over 3 hours with me for my first appointment. Apparently, there are several types of Dystonia’, but often physicians are not educated about Functional Dystonia because the United States is not up to date when it comes to Functional Neurological Disorders. Apparently, the United Kingdom is extremely educated on this, and if I was in the UK, the muscle contractions could have been reversed because there is a proper treatment team protocol that is used when a patient starts to show signs of a Functional Dystonia. The sooner it is caught, the faster it can be treated. I had learned during this appointment that if I got to this neurologist soon enough, this all could have been reversed. I would then be referred to a physiatrist to determine if my ankles/feet/toes could be saved.

While waiting to see the physiatrist, I would travel to Rhode Island to meet with Dr. Pradeep Chopra on May 24, 2016. Dr. Chopra is very well known for CRPS and his diagnostic work. After spending over 5 hours with my dad and I for our initial visit, another diagnosis added to my medical terminology list: Ehlers-Danlos Syndrome (EDS). EDS is a genetic disorder you are born with that affects your connective tissue. Usually this is seen with joint hyper-mobility, skin hyperextensibility (my skin is really stretchy, I know gross), and fragile tissue. Dr. Chopra was able to help me understand that I was born with EDS, and the EDS most likely caused the CRPS, and the CRPS caused the Dystonia. Dr. Chopra also felt something else was going on with my spine, but that will be discussed another day.

In September of 2016, I would meet with the physiatrist, who did a nerve block to numb my leg, and see if he could break the contractions. His thought was if my brain couldn’t feel the pain then the contractions would break; my toes never moved no matter how much he forced it. I learned that my toes were paralyzed, and my ankles were frozen. I was told it was time to meet with an orthopedic surgeon as I would need surgery. I was told it could be either reconstructive surgery, or amputation.

After waiting a month, I got an appointment with an orthopedic surgeon who is the Chief of Orthopedic Surgeons for Brigham and Woman’s Hospital. He looked at my feet, and said he didn’t even know if he could get to the tendons in my toes because of how severe the contractions were. He wanted to do a further exam by putting me under anesthesia and seeing if my toes would relax. We tried it with no such luck. The surgeon brought in 8 opinions to see what my best option was. All of the doctors felt amputation was most likely what was going to happen, but here was the action plan: tendons would be severed in each toe, bone would [be] removed from each toe, and pins would be placed. I was told to prepare for amputation as the surgeon was unsure that my skin would hold up when it came to suturing the wounds, and the plastic surgeon felt that I was not a good candidate for a skin graft. I learned this surgery will not fix the Dystonia, or my ankles, but it will help my walking and pain in the long run. Both feet have to be done, but the left foot will go first as it is the worst out of the two.

The first surgery was done on March 28, 2017 and I woke up with all of my toes. There were so many tears of joy and happiness as everyone is amazed this happened. I was given a 90% chance that I was going to wake up from surgery needing amputation on half of my foot. All of the doctors have been preparing me for amputation, so that was what we were all anticipating. I was under the knife for four and a half hours, as the surgeons worked as hard as they could. All the tendons of my toes were severed, bones were removed, and I also have a bone fusion for my big toe where the knuckle is.

On June 30, 2017, the second surgery was performed. During this procedure, the pins were removed from all of my toes, and my facia muscle was cut. The purpose of cutting the facia muscle was to see if it would lengthen the Achilles tendon. The surgeon and the Dystonia specialist explained that if we did not do work on my tendon, I would never be able to walk again.

My foot morning of surgery 3/28/17

My foot morning of surgery 3/28/17

The first time looking at my foot after surgery 3/28/17

2 weeks post-operative after the pins were taken out and the facia muscle was cut

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