Category: Stories of Hope

Written by Chris Connelly, D.O., CAQOM, MRO (ret) for the RSDSA blog.

Hello. My name is Chris. Actually, I’m Dr. Chris. I have practiced medicine for 32 years.

Guess what else I am? I am an RSD/CRPS sufferer, probably pretty much like you, if you’re reading this blog.

I was fairly certain of what I had, so I went to the doctor to have my diagnosis confirmed. She confirmed it alright. That was 20 years ago. I learned about RSD as a junior in medical school. I knew even way back then RSD was an ugly painful disease. What I didn’t know was how terribly painful RSD can be. I also didn’t know how limited and difficult treatment could be.

RSD and its treatment had exceeded my worst fears. Even a good graphic description of RSD in a book doesn’t do justice to the depth and breath of the terrible pain and life changing consequences that RSD will produce. Only living through the ups and downs of the excruciating pain and disability can a person truly learn the catastrophic effects that RSD will have on them. As bad as I had it, I’ve read about those who have had it much worse, endured more procedures, and had poorer outcomes than I.

I believe a new hope and relief of RSD/CRPS pain has finally arrived. There is a new medicine on the market and it is now available for use. The medicine is called Journavx (suzetrigine) made by the pharmaceutical company Vertex. It is an entirely new type of painkiller not related to any others. Journavx is non-narcotic, non-opioid and not addictive. It has no psychogenic effects whatsoever. It works by the unique mechanism of plugging the hole in the genetically defective sodium ion channels. It is the passage of sodium ions through the sodium channels that accumulate on the inside of the cell membrane that causes pain impulses. When the sodium channels have a genetic defect, they remain totally open letting sodium ions pass freely without restriction or control.

Simply put, Journavx plugs the hole: no sodium ion accumulation, no pain impulse generation, thus no pain.

The technical research that discovered these molecular structures and their functions is truly amazing. The cleverness and hard work of the research scientists is incredible to the point of almost seeming like magic or Star Wars. Neither magic nor space stories, these painkilling discoveries came about through imaginative brilliant scientific minds and relentless hard work. The result of which is a new medicine targeted at CRPS-type pain with very few side effects of its own.

Does it really work? Yes, Journavx really works for me.

How well does Journavx work? Read on and I will tell you.

I am fairly well versed in the technical aspects of the mechanism of action of Journavx including the molecular neurobiochemistry of the structures and their functions. This is all most impressive, but it is meaningless unless the medication actually relieves pain. I can speak for no one but myself. I can honestly state that Journavx has relieved 90+% of my RSD pain from the first day of taking the medicine.

As of this writing, I am on day 20 of Journavx and have little to no RSD-type pain. In my personal opinion, Journavx works very well for RSD-type pain. It works well for RSD-type pain because I must have the genetically defective sodium channels. Journavx plugs the hole.

Don’t expect Journavx to work wonderfully on every and any old pain. It wasn’t designed for that. It was designed for neuropathic pain of the RSD-type and at this, Journavx excels!

For me, well, I’m starting a new life or at least a new chapter in life. No opioids, no fogged brain or constipation, no needles, no blocks, no surgeries and no electrodes running down my spine, I can pretty much do what this septuagenarian body will permit me to do. Of course I have limitations. RSD has ravaged my left leg and body for two decades. I don’t get those years or my youth back. I do get to go on with my life relatively pain free because of Journavx. To me, after 20 years of excruciating agonizing pain, that seems miraculous, but it is actually cutting-edge brilliant science.

It is my fervent hope that all CRPS/RSD sufferers will at least know about Journavx and maybe give it a try. Because it is a very safe medication with few serious side effects, CRPS/RSD sufferers have little to lose but their pain. I personally recommend they try the new medication Journavx, and certainly before they undergo more invasive procedures.

Thank you for reading my blog. I know I didn’t get terribly personal with all the tears, failures and heartbreak. I’ve had them all. Others have described these events and emotions better than I could; please read their blogs. My purpose is to bring the great news of a scientific triumph that may benefit many or all CRPS/RSD victims.

– Dr. Chris… C’est La Bella Vie, Mon Amie!

At the time of publication, Vertex and Journavx are not sponsors of RSDSA.

Written by Jennifer Ferreyra for the RSDSA blog.

Helping others find their path is transforming to your own life, and one of the greatest blessings in mine. It’s about someone who’s already walked in your shoes reaching back and pulling you up out of the rabbit hole. It’s about love, hope, compassion and reducing pain in the worst of circumstances. Why do I care? I’ve been through my own living hell, not just CRPS, and I can’t leave someone in a similar condition if I can help. If anything that follows helps you I’m blessed. If not, please, keep searching for your formula, advocate for yourself and don’t give up.

My CRPS Pain

My CRPS, started in late December of 2016 at age 53 with a severe, raw, lighting bolt-like onset after I thought I paid my dues to cancer 26 years earlier. I absolutely refuse to lose to this disease which produces the most excruciating pain known to man even at the slightest movement or touch.

I share your pain, your tears, screaming, years of personal research, uneducated doctors, unnecessary medications, EMG tests, blurred vision, photophobia, MRIs, CT scans and years of no meaningful resolution. And please, allow me to point out that the smiley face pain level chart in the doctor’s offices is almost offensive to a CRPS patient.

Each of our CRPS pain and torture is different. Maybe I’m lucky that my pain is dedicated only to my left arm. We have little idea as to why it started except to say it was at a very stressful time in my life.

I have less of what is traditionally explained as gasoline burning, but rather a huge lighting bolt of severe nerve pain racing down my arm top to bottom, holding in the wrist, every two minutes. This includes lots of atrophy, skin scraping off like oatmeal, and brachial plexitis. Sleep? The longest I’ve gone without a stitch of sleep was five days at the Mayo Clinic hotel in Florida where absolutely no resolve was found, along with all the other hospitals I consulted with.

My first onset looked like my arm was a dead white corpse. I couldn’t take a step or move a muscle without triggering severe pain. This lasted almost three years and included the use of do nothing IV treatments, epidurals, anti-seizure medications, opioids, prednisone, and withdrawal, after which the pain was resolved for three years post acupuncture then came back. After a year, a new onset of the same pain returned. I submitted to an unsuccessful stellate ganglion block, and thirty days of implants that attempted to address the symptoms not the cause. By now I was a frequent flyer to the MRI and found it easier to keep my own hospital gown at home for dressing.

How RSDS.org Saved Me

I asked multiple doctors about a support group and to be directed to the authority on CRPS. The response was always “I don’t know.” It was then, still totally consumed by CRPS, that I started to advocate for myself and found RSDSA (founded over 40 years ago!) After seven years in pain, I spent hours reading every article, and watching every video trying to find out what causes CRPS and what pain management is working for patients that made the most sense to me. I learned that CRPS is a disease of the brain, not the limb, and that my doctors were indeed treating the symptom of pain not the cause. This made so much sense because I felt as if I had inflammation in my head for years. 

As a result of seeing all the videos, I chose to march into my pain doctor’s office to request a drug referenced by some doctors and patients as successful – called Low Dose Naltrexone (LDN). He said, “oh, we can try that,” as if he already knew about it.

LDN apparently works with the Glia cells in the brain which is currently thought to be an important area of focus for CRPS. The Glia cells and nerves, relative to CRPS, are described in further detail by Dr. Pradeep Chopra in a Court TV trial presentation for the Maya Kawalski case on September 28, 2023 . You can also find information on Glia cells on rsds.org.

For me, 4.5 mg of LDN (less than $50 per month) showed immediate signs of success and took my pain from 12 to zero in a few months. I am now 16 months pain free. To start I had vivid dreams and mild headaches, which are expected. These subsided after a few months. My understanding is that Naltrexone does not work for everyone, but if it does or if you want to learn more, visit ldnresearchtrust.org, which I also found on my own. I have even emailed questions to the Trust and had return responses. 

Rhetorically, why was I prescribed years of opioids that didn’t work and never told of LDN by any of over ten doctors anytime over seven years? Why did it take my own initiative in excruciating pain to find my own way? Why don’t doctors know about RSDS.org?

I strongly suggest reading and viewing everything on the RSDSA site. Advocate for yourself. Spend the time, in addition to your doctor consults. Take notes. See what resonates with you. It’s empowering.  

Also keep an eye on the RSDSA YouTube Channel! https://www.youtube.com/@RSDSA

How I “Survived” Many Years of CRPS Torture 

CRPS is a courageous fight of physical and emotional suffering. It’s like bleeding from a wound you can’t tell anyone about because they don’t understand. What follows is what aided me in surviving years of CRPS torture. I’ve broken this up so that you can eat the meat and spit out the bones as they say. None of this will fully resolve CRPS, but it was my path out.

Mindset

You must grab on to and not let go of even the smallest thing that takes your mind away from CRPS or any other problem you may have. This is one of the ways out.

Mindset is powerful. CRPS is a brain disease so this makes sense. And this is supported by multiple doctors. For years I found myself latching onto anything that would take my brain’s thoughts away from CRPS pain. Strangely enough, and even to this day out of pain, my cell phone is always with me set to something which will distract my brain from CRPS and other health issues. Music, TV, podcasts, even if I’m not cognitively listening to it. One of my consistent choices is The Today Show every weekday morning before work. This feels to me like I had friends with me every second and the anchors were uplifting. Even NFL and MLB games work.

I recently ran across a clip on Facebook where Jim Carrey describes being buried alive over the eight hours it takes to apply the Grinch make-up, which he did 100 times. The story goes on to say that he put his foot through his trailer wall on day one and quit because he couldn’t take it. A CIA operative with expertise on how to survive torture was hired to help. While I don’t prescribe to the methods mentioned, Jim did say that somehow every song the Bee Gees ever made got him through the eight hour make-up applications. I laughed out loud because those songs did the same thing for me with CRPS pain. It was something about the Bee Gees. Of course there were other songs, but whatever works for you on any given day.

Somehow music speaks to the spirit like words can’t. I heard someone recently say that “music gives organization to our emotions.” In our family, Spotify is the best $12 we spend every month. Almost any imaginable song that might work in a day is there and more. At night I leave the rain and ocean music on to help get me to sleep. 

Mindset is often framed by time with friends, laughter, a photo in a magazine… find a way out and keep it going. Ups and downs are to be expected, but reward or praise yourself for even the smallest victories.

Look up Dr Philip Getson’s “The Optimist Creed”. This was recently shared on a slide in his March 6, 2025 Live Stream with RSDSA on YouTube.

Hope, Expectation, Perseverance

Do not be a bystander in your own life.

Hope is mandatory. 

It’s painful to wait in the hope line, but you must hold onto even the smallest glimmer of hope in your brain. Even if it’s a piece of sand. Find it! You must work at this every day. Focus on it. There will be good days and bad days but you must continue to pull out of the defeatist attitude by latching onto any glimmer of hope, any positive path that your brain provides.

If you can only move one finger or toe, do it, and praise yourself so that your mind understands this is victory. Then add another victory, praise it and so on.  

With perseverance and strength your minds perspective should change for the good and you’ll be encouraged to continue. Do not give up.

Food

Eat an anti-inflammatory diet, stay hydrated.

I’ve found that soy, alcohol, coffee, non-organic, and processed foods increase inflammation in my diet.

I’m lactose intolerant and removed soy from my diet with immediate positive inflammation changes. I now only drink organic almond milk, and organic products where possible. I completely stopped drinking coffee and alcohol which cause almost immediate inflammation in my head. I stay away from products where the first ingredient is generally entitled “enriched”which appears to be a proprietary cocktail of god knows what.

Heat/Cold  – My Heated Vest, Lawn Lounge Chair Pad, Steam Shower and Hot Towel

There is so much to CRPS that we had to learn on our own. Not a single doctor told me that CRPS may be impacted by weather, barometric pressure, and that nerves don’t like cold until years into CRPS after I figured out how to cope for myself. 

In spring, summer and fall, my outdoor lounge chair pad becomes hot in the sun and has been a wonderful aid to relax my muscles.

I can’t do without my heated fleece vests. I use Ororo brand but there are others. I wear the vest around the house and under layers when I go out in winter. 

When pain starts I force my self into a warm shower which includes a steam shower. Heat warms my muscles, increases circulation and seems to put me on a better path. Do not sit and do nothing, you’re patterning your brain to accept the pain path.

In desperate times of pain I wet a hand towel, roll it, put it in the microwave and then throw it over my arm for moist heat. If it’s too hot, add a dry towel over it. Remove it before it becomes cold and start again.

Please note, CRPS also doesn’t like to be too hot, so it’s a balancing act. I’m constantly adding and removing layers on and off throughout a day.

Cut the Stress

When stress enters my life I immediately get non-painful shocks to my bottom lip and my entire nervous system starts shaking beneath my skin. I’m told this is also from the brain and likely from years of CRPS pain without resolve. I’ve had to choose between my health and unhealthy relationships. Be your own advocate and chose that your health comes first. For me this meant stepping back in full or part from certain relationships and events.

Call Me Crazy – Just For Fun 

I DON’T RECOMMEND THE FOLLOWING, except for riding in the golf cart and staying active, but perhaps the following shows my level of commitment, or maybe just my stupidity. (Now I know you must be gentle with CRPS and full on golf may not be the way to do it.)

CRPS Onset #1 – Parenting: I’m a single parent and things had to get done. I would drive my car locally for two minutes, pull over and scream at the top of my lungs in pain, then drive for another two minutes and repeat. I conducted every aspect of my CRPS life with one arm for years. Made beds, did laundry, cooked food, shopped for food, worked a full time desk job, typed, even if it meant triggering level 12 pain.

CRPS Onset #2 – Golf: To pattern my brain for the better, I rode in a golf cart and didn’t play. As part of this plan, I didn’t anticipate actually playing, but that turned out differently. I went so far as to “play” golf in 10 of 10 pain for about three months until Naltrexone worked. I skipped any golf hole where someone other than my three golf friends were present. The pain would trigger when I hit the ball and I would yell a few choice four letter words and try to compose myself.

Going in and out of the golf course was okay. As long as I didn’t press on the left arm I could conduct conversations and nobody would know. If I felt pain coming, I would promptly excuse myself and try to get away fast.

Just sick. But as I said, I refuse to lose to this disease. And I refuse to let it take golf away from me.

Today

I’m 61 years old and 16 months out of pain on LDN which I expect to take for my lifetime. Over exertion causes severe exhaustion and shaking of my entire central nervous system. As I write, I have a persistent pinch in my back where my brain is recalling a years old mildly painful acupuncture needle. I’m addressing this by sitting on my yard lounge chair with a pad that is hot from the sun. 

Being out of severe pain is a blessing, but I work hard every day toward ensuring my brain doesn’t recall the pain of what I hope is in the past.

Written by Jason A. Fox for the RSDSA blog.

In 2017 I met an excellent physician who gave me the correct diagnosis. He helped me learn how to manage my condition. I got my pain level under control enough to finish my undergraduate studies at Liberty University. I received a lot of support from my alma mater, and they were integral in helping me learn how to be an effective student despite my disabilities. The condition thankfully went into a partial remission and became tolerable.

Well… it did. In a big way.

Written by Sally Fowler for the RSDSA blog.

I’ve been living with CRPS for 10+ years. Mine started after a horseback ride severely twisted my right arm behind my back, causing nerve damage. It took about four years to spread to full body pain, muscle spasms, tremors, brain fog, partial paralysis, loss of limb awareness, loss of balance, thermoregulation problems, and more. It took five years to be diagnosed; by then, several doctors told me there was nothing they could do for me. 

I’d planned to be a horse trainer & professional horse photographer, and went to college 843 miles from home to pursue that career. I sustained my initial injury my freshman year, two months into the first semester. I had three friends, no nearby family, and no primary doctor. I didn’t know it at the time, but that ride disabled me. Mid-way through college, I discovered a natural talent for baseball photography, and I switched my career focus to it, because I couldn’t ride anymore. By senior year, I could barely hold my camera for 30 minutes without severe pain and tremors in both arms. Riding and driving triggered hours-long neck paralysis. I didn’t get early treatment when I needed it most, because while I saw a doctor within the first year, and he did mention RSD, he was convinced I couldn’t have it because it was rare. His mistake, plus my lack of knowledge and resources meant by the time we got the diagnosis, I was already disabled, and beyond the point of traditional medical assistance. 

After college, my life was ruled by CRPS. Nowhere and nothing was without pain. I was worried and cautious. I wasn’t active. My quality of life was terrible. I felt trapped, angry, and hopeless. My boyfriend encouraged me to try photography again as a hobby. I dismissed it, reminding him of all my new limitations. He joked that all we needed to do was get me a service llama (not a real thing) that I could ride, strap the camera to its neck, and work that way. It was probably the brightest, funniest spot of my day. It sparked an idea we hadn’t considered yet – what about a service dog?

The first time I felt safe with CRPS was six years after my initial injury. 

I fell while playing outside with Robbie, my service dog, and blacked out for a few seconds. When I came to, he was pushing his nose against my face, licking me, and standing over me. My hands were burning with the pain from hitting the ground, my whole body was shaking, and I felt incredibly weak. As he had been trained, Robbie pushed his head under my arm, pushing me off the ground and onto his shoulders. From there, I pressed one hand against his chest, one hand on his shoulders, and brought myself to a stand while he assisted, standing as still as stone. Walking ever so slowly, my hand on his shoulders, Robbie led me back inside the house, helped me change into comfy clothes, and into bed, then laid nearby. What once would’ve taken 20 minutes to get to safety, Robbie did in five minutes. 

Robbie was the beginning of changing impossible to possible. There weren’t CRPS service dog trainers available to help me train him. I took my experience training horses, reapplied the knowledge to training Robbie, then developed my skills and education as a dog trainer. Today, I own a dog training business. Disabled Advantage is dedicated to helping others with CRPS train their own service dog in the U.S., and coaching people with CRPS anywhere in the world. I became what didn’t exist for myself. I’d like to share a bit about CRPS Service Dogs, and give you access to reliable information.  

What is a CRPS Service Dog?

It is a type of service dog who helps someone disabled by CRPS. Not everyone living with CRPS needs or wants a service dog’s assistance. A service dog has the potential to be as variable in its work as the CRPS is, making their assistance transformative where other approaches have failed.

What Tasks Might a CRPS Service Dog Do/How Do They Help?

Typically, service dogs do tasks (activities) that are impossible for their handler to do. CRPS service dogs provide a broader range of assistance, performing tasks which are difficult, impossible, and those known to trigger pain. The service dog doing the activity prevents the handler from developing the flare they would’ve incurred by doing it themselves, thus keeping day-to-day pain levels more stable and manageable. They work to prevent flares, assist during flares and day-to-day life functions, and help us recover after a flare, thereby increasing a person’s functionality and independence. Though not a cure, CRPS service dogs are a game changer. 

In my experience working with and talking to CRPS teams, most people need a light or heavy mobility dog, primarily assisting with mobility-based tasks, given the far-reaching impacts CRPS has on our bodies. The dogs are often cross-trained in psychiatric tasks to help with anxiety, depression, brain fog, & tasks specific to CRPS and compounding disabilities. Tasks may include:

• Opening/closing doors
• Assistance rising from a chair, bed, or the floor
• Stabilization for walking, getting dressed, in/out of the tub, rising from a chair, dizzy, etc.
• Bringing specific items or people
• Providing deep pressure for pain/anxiety/tremors or body warmth to stabilize temperature
• Remind to take meds, to move around, etc.
• Moving heavy objects
• Assisting with repetitive motion chores, such as laundry
• Carrying flare kit in a pack
• Guiding handler to a person or place when disoriented or post-fall

How Might I Partner with a CRPS Service Dog?

• U.S. federal law allows people to train a service dog themselves, with a trainer’s help, or by applying for a pre-trained dog from a program or charity. Currently, there aren’t programs specifically for CRPS Service Dogs, and very few trainers know of the syndrome or what considerations go into training a dog to work with a CRPS disability. Programs typically advertise based on need, such as mobility or psychiatric, not specific conditions. Many programs don’t offer brace or balance tasks. 
• In other countries, you must go through an organization or work with a trainer. Check ADI to find assistance. 

What Should I Consider If Training My Own?

All service dogs need to be well-built, have no health issues, the right size for the task assistance needed, and the right temperament. Before looking for a dog, you need to know what tasks you need.

• Size – The more intense the task, the bigger the dog. Mobility dogs need size on their side to help with stabilization, opening doors, and moving objects. Any service dog must be well-balanced, well-built, and not disabled themselves. 
• Temperament – Confident, friendly, willing to work, medium energy, focused on you, 
• Coat – Being able to tolerate the feeling of their fur & fulfill grooming care needs is vital
• Barking – If you have centralized CRPS, barking can trigger vertigo, passing out, and dizziness. 
• Finances – No service dog is free or cheap. Owner-training can be $1,000/year for upkeep alone of health, toys, food, grooming, if not more. Service dog training is specialized for a reason. Your local pet shop will not be able to provide the level of training a service dog needs. 
• Exercise – Doing their job isn’t enough. I rely on a variety of outlets, including fetch, puzzle games, walks, a treadmill, and agility.  

Can I Just Get My Dog Certified/Registered?

In the U.S., certification and registration are not required by federal law. Select areas have voluntary registries, but doing it doesn’t turn your dog into a service dog. Websites offering certification and a vest are scams. A vest and a piece of paper don’t make a service dog. Intense training over 1-2 years in obedience, socialization, public access etiquette, and task training builds a service dog, along with the dog having the right temperament and suitability for the job. 

Where Can I Find Reliable Information and/or Help?

• Assistance Dogs International – Learn about service dogs, find a program or trainer accredited by ADI through their “member search”, best resource for international

• International Association of Assistance Dog Partners – Disability advocacy organization for people with service dogs

• Legal Information by U.S. State

• Ellas Animals Inc. – a nonprofit who helps people owner-train service dogs in the U.S.

• Disabled Advantage Dog Training & Consulting, LLC – Sign up for training with me, coaching, or peruse my website for free resources or blog for education

Connect with Sally via her website, Disabled Advantage Dog Training & Consulting, LLC, on Facebook via her page titled Disabled Advantage Dog Training & Consulting, LLC, Instagram via @disabledadvantage and on Patreon via disabledadvantage.

Written by Susie for the RSDSA blog.

Hello, my name is Susie. I got diagnosed with CRPS in 2015.

It started in 2012 when I had plantar fascia surgery. It spread to my other foot after a dental procedure. It got so bad that I was in a wheelchair.

I was off work for two years because I was in so much pain. The treatments I did to get into remission are 1000 mg vitamin C daily, laterality training for my brain, sympathetic nerve blocks, Calmare, ketamine infusions, and finally aspinal cord stimulator.

It took me about seven months of reprogramming the spinal cord stimulator and sometimes dealing with increased pain when it was on the wrong settings. Now I charge it up and when the battery dies, I leave it off for a few weeks because the residual effect lasts for me.

I found that I had to get one of the very lowest vibration settings then leave it off for a few weeks until my feet start hurting again then I charge it up.

The pain now is nothing compared to what it was. I think all the treatments that I did contributed a little to me getting better. I use the vitamin C daily to prevent it from spreading.

I’m cautious of procedures and surgery. I’ve researched so much, bought Dr. Katinkas book, listened to numerous YouTube seminars (like the one from Dr. Getson).

I never gave up. I knew remission was possible and once I found out what I had I never stopped. I really want to help people that have CRPS. I work at Kaiser and I educate all the providers on the illness so we can spread the word.

Please consider making a donation to RSDSA today!

My CRPS story began, like many CRPS stories, with misdiagnosis and despair over my rapidly worsening condition. Abnormal electromyography (EMG) test results led my doctor to conclude that I had carpal tunnel syndrome (CTS), despite several other symptoms that were clearly inconsistent with CTS. I disagreed with doctors, and kept searching for a more accurate diagnosis, which would offer me a solution for all of my symptoms. Meanwhile, my symptoms were spreading and getting worse: neuropathic pain in hands and arms, uncontrollable muscle contraction (dystonia), Reynaud’s Syndrome, chronic fatigue, brain fog, hypersensitivity to touch and temperature.

Written by Louise Plaster for the RSDSA blog.

As I was coming up to astanding position I struck my left knee on a metal bracket that was located on a support leg of the conveyor belt. When I struck it I at first saw black for a few seconds. As I gotmyself together from that I took a step and the pain was so great that it felt like I was going to be sick of my stomach. And so began my journey with RSD.

I was fortunate that I didn’t have to go to very many doctors before I was diagnosed by Dr. Robert G. Schwartz in Greenville, S.C. I was diagnosed on Jan. 23, 1993. It wasn’t long after that Dr. Schwartz suggested that I attend the RSD Support Group. I was afraid to go at first. I wondered what I would see when I went there because I was a little afraid of what was happening to my body.

I had always considered myself an active person. I was never into sports, but I enjoyed working out and taking walks as exercise. I also had a good job making good money. The company that I was working for at the time sent me to Japan to train. In Japan women didn’t do the work that I did so that was an experience. On return I worked with Japanese trainers to get the line started up and into production. Then I was to train others for the job. But on that day, February 17th things started changing.

Before I went to work there I had worked for another manufacturing company for 15 years. In that job I had worked my way up the ladder from an operator to a coordinator (assistant supervisor). I grew up in this company and I learned a lot. My skills grew and expanded. I went back to school and took some classes that would help me do my job better especially when I moved into management. In my job as a technician/coordinator I had a lot of responsibilities and dealt with many types of people. It was my job to motivate them to get the job done. I also did a lot of writing in this job. I wrote evaluations of employees, training manuals and operating instructions. This training also was used at the other job where I was working when I got hurt. I wrote gauge instruction manuals there. As I look back now to that time in my life I can see I was in a type of training for my future “job.”

I did decide to go to the support group and it turned out to be one of the best decisions that I have ever made. It was good to be around others who knew where I was coming from.

It seems like from the beginning my RSD was a magnet for others whohad RSD. I started meeting people just about everywhere I went whohad RSD. I remember standing in a restaurant hearing an employee telling her manager that she had RSD. Also there was a time that I won a prize on the radio and when I went to pick up my prize, the receptionist had RSD. I would invite the people that I met to the meetings. During this time, my time working was coming to an end. It was very devastating to me when I was taken out of work. I felt hurt and useless. I had always worked and had an income. Plus I valued my work. It is my belief that how I am as a person shows through my work. So my world as I knew it was changing again.

Dr. Schwartz suggested that I use my skills in the support group. He wanted me to get more involved. He said that the group needed help to move on. I thought at the time that he must be crazy. To me, my world was crashing down. I was wondering how could I organize a group when I wasn’t doing so well with my own life.

Thankfully, Dr. Schwartz could see that getting involved in the group would be what I needed even if at the time I couldn’t see it. So in November 1993 I became the new director of the Greenville RSD Support Group. It was just what I needed to do to work on living with RSD. I did find that my skills were needed. They just needed to be re-adjusted to do what I needed them for now. I needed to use these skills to bring me back out of the black hole that I had fallen into. I was viewing RSD as ruining my life because I couldn’t do the things that I use to before RSD. I would do things because I had the mind set that if I didn’t do things like I always would have done them, then I was giving into the RSD. When I did things on a fairly good day I would over do it and pay for it for weeks on end. It finally dawned on me that this was what my RSD liked. My RSD liked that mind set and seemed to escalate with it. It also liked it when I was down. This discovery was an important part of acceptance for me. It taught me that it’s ok to make changes if it allows me to do what I want to in my life. I started looking at my RSD in a different way.

My RSD has taught me some important lessons and changed the way I do things. It taught me how to set priorities in my life. I started making a list on what I wanted to do in a day. I put what I wanted to accomplish the most on top. If I could only do one thing that day it was what was at the top of my list. I also started changing around how I did things. I realized that it wasn’t how I accomplished my goal that matter, but it was the importance of accomplishing it that did matter.

RSD also brought out my fighting spirit. It occurred to me very early on that more education was needed about RSD. Everyone I met would say, “I never heard of that.” I wanted that to change and decided to put some of my focus on changing that even if it was educating one person at a time. This is when it was decided that we needed to form the S.C. RSD Association or SCRSDA. Some were hesitate at first but some believed that we could do it. We made our mission to help educate everyone about RSD. Our first conference was held in September 1994 and so far we have continued to have it annually.

I also discovered that there are some very dedicated people who do their job well. I’ve worked with many different physical therapists since having RSD. Each one helped me to move forward in my journey. Along the way I have become a teacher. Each person who has worked with me learned about RSD. They saw it on good days and bad. They helped teach me how to deal with it one day at a time. I appreciate all their dedication and I feel that I am where I am today with my RSD partly because of them and their willingness to work with me. To keep an open mind and learn in the process. I vowed to them that when they got me moving that I would keep it up and I have. I make sure that I keep moving and do my physical therapy routine at home every day. For me, having RSD and taking care of myself is like having a full time job!

My RSD has also been used to teach others in the healthcare profession. The spreading of my RSD was even used as a learning tool. I am grateful for my RSD to be used in this way because if one person is helped by my RSD being a teaching tool than it is worth it to me.

I know that my training in my past jobs has helped me to perform my “job” with the support group. I have always enjoyed working with people. It’s something that comes natural to me. My journey with RSD has allowed me to be able to help people grasp an understanding of their RSD and what it takes to deal with it. Many tell me that I was able to help them and for that I am truly grateful. RSD has taught me that I end up helping myself by helping others. Running the support group and SCRSDA has been therapy for me. It allowed me to regain in my life what I thought that I had lost. Using this as therapy has allowed me to grow and to re-build my self-esteem and confidence that was so shaken at the beginning. I still have work to do on myself and I will continue to work on myself till the day I die.

Many people ask me “Don’t you want your old life back?” To that I have to answer “No I’m to busy living my life now and I kind of like it.” I understand now that some of my old life didn’t fade away, it was just stalled for a while. As I have improved and continue to improve I am getting back a lot of my old life. It’s just different now. I’m back to working out again, just in a different way. I take my walks on the padded indoor track at the gym. I’m doing what I enjoy when I meet and/ or talk with people who have RSD. It makes me happy to be able to help people feel better and to understand what is happening to them. It makes me feel good to see a person who was scared to have a new sound of hope in their voice or see it in their faces. So my skills from before RSD are used now but in a more profound way. My writing skills have come in handy too. I have some chapters written in Dr. Schwartz’s just released book “Resolving Complex Pain.” I’ve been able to travel some to speak at conferences and other group meetings. I’ve been able to work on RSD awareness by going to Washington DC with other RSDers. We have been able, over the years, to get stories on RSD in the newspaper and on TV. I have connected with other leaders to work together in any way possible to bring more awareness to RSD.

By managing my “good ” days I’m able to get more of them. I’m able to do more with my husband Jack, family and friends. I enjoy my 2-year old grandson, Ethan very much. I also enjoy meeting people with RSD at Dr. Schwartz’s office. I have a strong support system of folks that helps keep me going. I will never give up working on myself or my RSD.

So that is why I say, “I have RSD, but it Doesn’t Have Me”.

Written by Jane O’Laughlin for the RSDSA blog.

This article is for those with CRPS who are searching for a different path to manage the syndrome. The path was filled with many unexpected turns, side roads, road blocks, incredible new people in my life, and constant discovery. Today I am again an avid athlete pursuing my passions of running and swimming, with plans of competing again. I enjoy my three active kids and husband very much. And, I recently went back to work as a family nurse practitioner, a career I love.

It wasn’t always this rosy.

In January 2003, I was diagnosed with CRPS following surgical carpal tunnel repair. For six months I could not cut the food on my plate, do an ounce of housework, cooking, gardening, nor hold the little hands of my children due to severe allodynia in my right hand. Though I had formerly been an avid triathlete, pursuing sport again seemed like a far-off fantasy. The CRPS quickly spread to my other hand. I pursued physical therapy initially. Then, as symptoms worsened and my hands began to atrophy, I sought pain control through a hospital-based pain clinic.

I received stellate ganglion blocks several times, and then moved on to Neurontin® therapy for pain control. I experienced memory loss, fatigue, and felt buzzed all the time. I realized I couldn’t be the mother I wanted to be on that drug, so I asked my pain specialist to wean me off of it. I sought relief from a cadre of reputable physicians, all of whom had plenty of hope for me regarding pain control, but there was no improvement. Muscle atrophy worsened and I decided to try alternative approaches to pain control.

I tried traditional chiropractic care and acupuncture. Both gave me modest, brief relief. Then, a well-trained massage therapist referred me to Travell and Simon’s Myofascial Pain and Dysfunction: The Trigger Point Manual. I read chapter after chapter, realizing that my CRPS was likely associated with many trigger points in my muscles, which gave me enormous pain beyond the terrible burning pain of CRPS. I knew I was onto something big when some of the self-treatments for these trigger points actually gave me a little real relief. I had to find an expert in the field of neuromuscular care who was familiar with CRPS. The problem is that muscles are the “orphan organ,” physicians are rarely muscle specialists, and physical therapists weren’t entirely trained in trigger point release. I wrote to the editors of the myofascial pain texts, asking for local specialists in their field. After numerous letters and emails, I located a specialist relatively close to home. I was cautiously optimistic.

My specialist is a chiropractor trained extensively in the field of neuromuscular care, with an emphasis in muscle trigger point release. After just one visit, I knew I had found a person who could really help me. He quickly referred me to a clinical psychologist specializing in biofeedback for pain control. Working closely and frequently with both of them, I began to have pain relief.

“Run Through the Pain, Jane”
The psychologist encouraged me to look at CRPS as a pain pattern which needs overriding, not masking. If I could train my body to override the pain, I would gain control of this monster that had taken over my life. I was advised to start running again. Initially, I was terrified of the pain I knew I’d encounter and which might flare up areas that had improved with my new care. I was told “Run through the pain, Jane.” Basically, I needed sheer willpower to make this work. I was taught to apply biofeedback to running, learning how to recognize the pain signals, then letting go of them through breathing techniques and focusing on different tactile sensations while I ran. It was very painful at first, but, I persisted and found that my level of pain, its speed of onset, and the time until pain was relieved all improved with each run I took. The pain control lasted longer following my runs as I continued to train. I continued to receive frequent trigger point therapy, which allowed me to have less pain as well. I couldn’t have run without both modalities and a huge dose of determination to make it work.

After four weeks of slow but steady improvement, I began to have pain in one leg. Initially we figured it was a recurrence of some former low back pain and sciatica. Later we realized it was CRPS spreading to my lower extremities. Running became too painful, so I was encouraged to start swimming again. Formerly a competitive masters swimmer, I could swim only 100 meters before the pain was too much to continue. Still, I persisted with the encouragement of both of my doctors, applying biofeedback to pool workouts this time and receiving regular trigger point release from my doctor. I also began a home stretching program to decrease the frequency of trigger points. Steadily I improved. After two years out of the pool, I rejoined my former swimming coach and team, with whom I continue to swim today. My chiropractor and I also worked as a team, exploring numerous therapeutic modalities for the CRPS in my legs before we found a method that worked for me in that area. Again, persistence paid off. I began to run again, and, though my legs have suffered some set backs, I am running regularly again and hope to race soon.

I take no pain medications for my CRPS. Natural endorphins and cortisol release when I maintain aerobic output are the “drugs” which keep me comfortable. The nerve signals which transmit CRPS pain are overridden by nerve signals which tell my muscles to perform. I combine daily exercise with a regimen of biofeedback, 30 minutes of stretching one to two times per day, a diet filled with fruits and vegetables, chicken, fish, nuts, and complex carbohydrates, and I take high doses of Omega-3 fatty acid supplements. I see my chiropractor for trigger point release every one to three weeks. Yes, I still have a small amount of pain every day. Occasionally it flares up on me. Yes, it is manageable. Yes, it still scares me at times, and, yes, I am living a wonderful life again, even venturing back to practice as a nurse practitioner

Lessons learned

1. Without a doubt, fear of pain is a principle driving force of pain. The pain is so severe that we become afraid of it. We allow it to control our lives, anticipating its effect on everything we do. We become inactive, suffer atrophy, and the pain only grows. Once I was able to experience even a tiny bit of relief, I held onto that feeling and continually focused on mentally capturing it again and again, no matter what it required. I became more confident of pain control the more often I experienced it. It no longer controlled me. I use these feelings to fuel my workouts, which are still painful and exhausting at times. When anxiety creeps up on me, I seek support immediately, recognizing that I won’t allow myself to slide down the slippery slope of pain and fear again. My doctor is continually supporting and encouraging me.

2. Find an inspiration. Mine was my family. I knew I couldn’t let myself continue to be the mother in pain to my children, nor the wife in pain to my husband. I also dreaded the thought of being that “pain patient” that I had cared for many times in my own medical practice. These inspirations kept me searching for answers, and continue to drive my determination to practice daily self care, which can be exhausting at times.

3. Don’t isolate yourself. Formerly a very social person who loved to entertain, I found I didn’t want friends to see me hurting or unhappy. I knew I couldn’t hold up through social gatherings very long due to the pain. Rather than isolate myself, I forced myself to frequently have friends over, hosting potluck happy hours often. I’d simply pull open my silverware drawer, let someone open the wine, and allow those whom I loved to heal me with their friendships. I found that distraction is a powerful antidote to pain, often giving me several minutes at a time of pain relief if I could relax enough to get caught up in intriguing conversation. A glass of wine helped this process, as did eating wonderful food.

4. Seek professionals who have experience with trigger point release and biofeedback. Those suffering with CRPS develop trigger points frequently. Active release therapy (ART) and spray and stretch methods are very effective. Biofeedback must be done with a professional familiar with pain control. Search online. Write to textbook editors. Network with anyone you know who has experienced chronic pain. Be persistent!

5. Volunteer. Reach out to others. It’s so easy to feel despair and anger when CRPS is present. Force yourself to do something – anything – for others. Just making the elderly lady down the street a bouquet of flowers from your yard or listening to kids read at school gives our minds a good dose of fulfillment.

6. Stay the course. Just recently, I became too confident of my recovery and slacked off on biofeedback. I suffered a setback with a large CRPS flare, and the accompanying anxiety it provokes. My doctor counseled me to get back on course, reminding me that I must work harder at my daily care regimen when I feel good. Everyday I remind myself that I am doing these things to manage CRPS for today. Tomorrow is another day.

7. Finally, believe in yourself and others will, too. Never, ever give up! Now, when I shop for running or swimming supplies and am asked what event I am training for, I say, “I am training for life.”

Travell and Simon’s Myofascial Pain and Dysfunction: The Trigger Point Manual v. 1 (Hardcover) Travell JG, Simons DG. Myofascial Pain and Dysfunction: The Trigger Point Manual. Vol 1. Baltimore, MD: Williams & Wilkins; 1983.