Category: RSDS General Info

Recorded by Lisa Folsom for the RSDSA blog.

Listen in as Lisa details how a 2015 injury of her left pinky finger caused her CRPS, her diagnosis, education for friends and family, treatments, and much more.

 

Learn more about Lisa via her YouTube Channel and her Instagram.

If you’re interested in writing or recording your story for the RSDSA blog, please send us an email at [email protected]. Please consider making a donation to RSDSA today!

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We’ve also included the full transcript of Lisa’s video:

Hi, everybody. My name is Lisa, and I am the 44-year-old wife to a wonderful and handsome husband, the mom to three pretty darn good kids that are now in their 20s and Noni to an absolutely adorable infant grandson. Life with CRPS began about five and a half years ago in May of 2015 when I fractured my left pinky finger, of all the smallest things you could possibly do, with the injury of what’s called a boilerplate injury. Now, if you’re like me, and about 98, 99% of other people, you have absolutely no idea what a boilerplate is. What it is, is a small disk that is located on the inside of your fingers over the middle joint of each one of your fingers. And it’s attached by two small ligaments to the bones on either side of it. So it’s located, like I said, in the middle joint, and it’s attached by two small ligaments to the other bones. What I did was I turned my pinky finger completely sideways, 90 degrees, and I tore the ligaments completely off the bone and it took a piece of the bone with it and caused a fracture.

Well, by September of that same year, 2015, I was still in pain, which shouldn’t have been that way because most fractures, you know, will heal within about six weeks. And the ER doctors had already tried immobilization, which of course, all our RSDSA folks know., immobilization is probably the worst thing you can do for CRPS patients. But of course, by September, I was still in pain, severe pain, and it was starting to hurt. It was starting to crawl up my wrist and forearm. And so I went to an orthopedist who told me there was no reason I should still be in pain. He took his X-ray and told me there was no nerve damage, there was no bone problems, there was nothing wrong with the bones. And so there were there, therefore, there was no reason I should still be in pain. And I absolutely hate those words. Because I’m pretty sure that every CRPS patient has heard them at some, you know, some time or another. But he sent me to an orthopedic hand surgeon who was just as baffled as the orthopedist was, and so I got shuffled back and forth between the two for quite some time before the orthopedist decided that, you know, maybe I had a compressed ulnar nerve.

Well, the ulnar nerve is the nerve that runs along the back of your arm, all the way up your shoulder, into your neck and into the brain. And if you’ve ever you know, hit your so called funny bone, You know exactly what your ulnar nerve is. So they did a surgery called the cubital tunnel release, and essentially widens the channel that the owner nerve sits in. And they figured that they had resolved the problem. Well, long story short, all they did was cause my CRPS to spread because it was a new injury, new surgery, new injury, and it caused my CRPS to spread all the way up the back of my arm into my shoulder and part of neck. So that continued with the burning and the crushing pain. And by January, you know my  husband, my poor husband, by that point, I was keeping him awake at night. I was no longer sleeping properly. I was thrashing around just trying to get comfortable. And by January that same by January of 2016. He was like you know what you are done. We’re taking you to pain management. And that’s it. So, I was fortunate in that, you know, in in sort of searching out Google Maps. I happen to pick out, pick the name out of the hat so to speak, of the one doctor in my town that was one of the leading doctors in the state for CRPS. It was phenomenal. It was like God had just opened the heavens and given me a blessing beyond belief that, you know, this doctor was positively the greatest in the state, you know, when it comes to this disease.

And so we went to see him and I gave him the down low on all of my symptoms, what I had been going through, the misdiagnosis I had received, which was thank, thank goodness, it had been my one and only misdiagnosis. And he essentially said, you, you have textbook RSD. And he handed me you know, this brochure that started detailing all the symptoms, and all the issues that come with this come with this disorder. And I was like, holy crap. I didn’t have any idea that this disorder existed, I hadn’t Googled any of my symptoms, because I know that Dr. Google is sometimes a dangerous thing. Um, and all I had done was just, you know, outline what I had been going through to him, and he handed me my diagnosis without, you know, without skipping a beat, you know, I had undergone all the testing, the MRIs, the laboratory testing, the clinical examinations, the EMG’s. You know, all and it took maybe a month or two before he had handed me my diagnosis. And that was by about February or March of 2016. And life, daily life since then has been, you know, sort of touch and go. I feel sometimes, like I’ve been at a treatment guinea pig because, you know, what works for one patient doesn’t always work for another CRPS patient and unfortunately, that’s just sort of the way it goes for us, you know. One treatment may not work for another. And so we had to sort of test out all the different treatments and all the different medications to see what would work for, what would work for me. And, of course, you know, when it comes to the home life, there’s no such thing as a schedule, because you never know how you’re gonna wake up. You don’t know, if you’re gonna wake up in a flare. You never know, if you’re gonna wake up stuck in bed. You never know how you’re gonna end up feeling that day. You may be full of energy and full of pep and you may be able to go run all your errands, and you may be able to do some of your housework, and get everything done and you may feel like Superman. But then the next day, you are just down for the count. So there’s no such thing as a schedule. And my husband is fully aware of this and he makes, he makes tentative plans. He pencils things in and hopefully we can do them,  but he knows that if I I can’t, then I can’t. And then we just, you know, sort of take a chill day at home and we watch TV or we play board games or we you know, just have a semi fun day at home as much as we can.

The one thing that I really wish that people who don’t have this disorder could understand would be you know, I just wish they could understand that, you know, there are some days that even [sigh]. There are some days when even our skin hurts, and that we don’t mean any offense when we say please don’t touch me. We’re not being distant. We’re not being snobby. We’re not being, how can I say this? We’re not mad at them in any way. We’re not being ugly to them. We just can’t deal with the human touch because allodynia and hyperesthesia are a thing and those are big fancy words for the fact that things that shouldn’t cause us pain, do. And our skin is way more sensitive to touch and to outside stimuli than the normal human being. I’ve often said that I can feel a mosquito land on my arm before she can bite me. Which is kind of a handy superpower to have, but it’s not always a happy thing. I can feel a single hair land, you know, and I kind of brag on it as being a superpower, but it’s not really the most fun superpower to have all the time. And so I just wish that, you know, sometimes people can understand that we don’t mean any harm when we say, “Please don’t hug me, please don’t touch me.” We just can’t handle it on that particular day. And I wish that they could understand that yes, CRPS is a physical disorder. It’s not a mental one. It is. It is a clinical, physical diagnosis that has been verified by multiple physicians across multiple disciplines. And it’s been documented since the Civil War. And there’s no, there’s no denying it at this point. You know, it’s real, and the pain is real. The McGill University pain scale has bumped up the pain level, from a 42 to a 46.5, which is more painful than the amputation of a finger or toe without anesthesia.

You know, I have and the one thing I missed, I failed to mention is that, you know, through subsequent injuries, you know, I have developed CRPS in all four of my limbs. I have had sprained toes, multiple sprained toes. I have dislocated another toe. I have sprained an entire foot. I have had surgery to get a spinal cord stimulator. And I have had a radio frequency ablation, to try and help with some of my back pain because I do have some spinal issues on top of everything else. Well, every single one of those procedures, surgeries, injuries, and all of that have caused my CRPS to spread to every single one of those sites. And so my case is absolutely no joke. And I truly wish that, you know, people without this disorder could understand that, you know, the pain associated with this disorder is just unreal.

When it comes to the advice that I would give newly diagnosed Warriors: Be patient with your doctors. You know, they’re not incompetent. At least most of them are not. It’s just that they have to find what works for you. You know, what works for me, may not work for you. So, please be patient. You’re not a guinea pig. They just need to find what will work for you specifically, you know, I have found for me in particular, that ketamine is a wonder drug. It is the best thing that has worked for my CRPS pain ever. You know. And so my doctors have given me you know, oral ketamine capsules to take, they’ve given me an intranasal spray, as well as most of the other traditional medicines that will work for that have been tried and true for CRPS like Gabapentin and Cymbalta, etc. Now, that may not work for you. It may be that you know only opioids will help you. You just have to go through your process and understand that you may have to do a little trial and error when it comes to your treatment regimen. And, you know, just be patient with your doctors, be patient with yourself, please. And be kind to yourself, don’t beat yourself up when it comes to your hard days. They’re gonna come. They’re not going to be easy, but they’re going to come. And even though you might feel useless on some days, you might cry, you might get depressed, but you know, be patient with yourself as much as you are with your doctors, as much as you are with your family. Be patient with yourself, be kind to yourself, be loving to yourself. And, you know, give yourself as much self care as you need. Do the hot baths, the hot water therapy. Do your physical therapy. Do everything that you can to help ease your pain and get back to what your normal might be.

For the Warriors that have been there for many, many, many years, help us help those of us who are who are still in our journey, still in the early stages of our journey early to mid stages of our journey, and to the newly diagnosed Warriors. We need guidance, you know from the long termers. We may not understand what the long term effects of the illness will have on our bodies. Whereas you might. I’m still five years maybe I’ll be six years in this May. I need guidance just as much as the newly diagnosed Warriors do. So you know, reach out to us help us to understand where we’re going to be 20 years from now. We need it. We need the help. We need the guidance. And we need the kindness and the love from those of you that are, you know 20, 25, 30 years in. Reach out to us and help us you know, help us get there and help us to help others.

When it comes to treatments, you know the only thing that I have found that helps me is physical therapy. Warm water therapy and meds. Those are the only things that have really helped me in the long term. I have tried epidurals. I have tried steroid injections, the Toradol injections, I have tried. As I said the radio frequency ablation for my lower back. I have tried well the spinal cord stimulator has done wonders. I will say even though the implant site has become an RSD site, when it comes to the pain relief in my limbs, the spinal cord stimulator is a technological wonder and it gives me so much relief that it’s unbelievable. And so I would highly recommend that to anyone who is finding their pain, unresponsive to meds, or other treatments. But like I said, physical physical therapy, warm water therapy, my stimulator and my meds. Those are the only things that have worked for me in particular, the injections don’t usually last very long for me the nerve blocks the sympathetic nerve blocks don’t usually last long for me. That’s not to say that they won’t work for others, that’s simply saying that they don’t work very well for me.

That’s just about it. I don’t have too much else to add other than to say you know, I want to help as many people as I can when it comes to this disease. And so I have started social media channels you can find me under the username @thespoonbunny. And I have you know, I have tried to include as much information there as I possibly can including some ways to help save energy around the house. Including you know, some some informational videos that outline symptoms and you know, how to you know, sort of recognize the signs and symptoms of CRPS and hopefully, I like to add a little humor, but I just want to help as many of you as I can, that’s all I can say. I enjoy it and you know, when it comes to just being there for others I feel like it’s my calling and you know, what else am I going to do when I’m you know, disabled and at home? I have like I said, a wonderful handsome husband who allows me to just be me and allows me to be home and not you know, have to deal with working or dealing with anything but healing myself. And so I will leave you with my normal sign off when it comes to my social media channels. Until next time, my friends this is The Spoon Bunny signing off. May your spoons be plenty and your troubles be few. Have a great day.

Written by Teryl Worster for the RSDSA blog.

How and when did you develop CRPS/RSD?

On June 4, 2020 I sustained a fractured bone in my right hand from a kick from my horse.

What has daily life been like since your diagnosis?

I had never had a broken bone in the 54 years of my life and I was very active, so I was not sure what to expect. Things went fairly well at the onset as I have a high tolerance for pain and was a certified personal trainer, so I felt that I could bounce back relatively quickly. I also own and operate a wellness spa, so I felt that I had all I needed at my disposal. This turned out to be a godsend because as the next few months played out, I found that my hand had become unusually immobile post incident. My right hand was very swollen when the cast came off, there was a burning pain, and the color of my entire right arm was very different from my left.

I immediately started physical therapy and added a variety of treatments. I used far/near infrared light, PEMFT (Pulse Electromagnetic Field Therapy) as it was good for microcirculation. I had no idea what was wrong but began working hard to decrease the pain and inflammation. I used homeopathic pain management products, massage therapy, and acupuncture, yet still the hand was not getting better. This did not make sense to me as I understand much of the science behind inflammation.

My right hand was very sensitive to touch, and the skin discoloration and edema were beyond what was normal after several weeks of PT. My surgeon offered to give me a cortisone shot in my wrist due to the pain and immobility. This was the most pain I had felt up to that time. He also put me on a prednisone pack.

By August, I was still unable to really use my right hand and I was not sleeping well at night due to the pain. I continued to do therapy at home, ice baths (ouch) warm magnesium soaks, etc. It was a full- time job and I was also trying to run a business. I finally insisted that this was “not normal” and looked closely at the new x-rays in August showing a very different looking hand as far as the bones were concerned. My doctor shockingly said how sorry he was and that he sees now it is “classic signs of CRPS.” I had never heard of this but he felt that I was in a good place with all the therapies I was utilizing. He felt that I had made such good progress that he felt I may have already put it into remission. The next step was a stellate ganglion block with a pain management specialist. These shots compiled with the therapies I was already doing have given me hope and have allowed me to gain function and to decrease pain to a very manageable level. I also added ozone therapy and hyperbaric chamber therapy as I did not want to leave a single option behind.

The second battle I fought and won was against the insurance company. They denied several times payment of the nerve blocks, the very procedure that with the other therapies will, according to my doctor, leave me with a normal hand within the next several months.

What is one thing you wish those without CRPS/RSD could understand?

This disorder affects not just the physical body, but the psyche of the individual dealing with it. It is debilitating and causes multiple layers of dysfunction beyond just the pain.

What advice would you give to newly diagnosed Warriors?

When you are newly diagnosed, you need to hit the ground running with everything you have. Time is of the essence with this disorder and science has not quite caught up with this disease. Be your own advocate and find multiple ways to treat this including natural therapies such as acupuncture, ozone therapy, hyperbaric therapy, and massage therapy, when tolerated, as it will work if caught early. Do not give up and be diligent to do all the homework necessary.

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

If this has become a chronic issue for you, you must find natural ways to manage the symptoms. I practice daily Sudarshan Criya breathwork as it calms the nervous system and helps you to get your mental state grounded. Yoga, movement, homeopathic pain management all will allow you to be the captain of the ship and take control back over your body. Your body is a miracle and when you give it the right environment, it can heal itself. Also watch the foods you eat. I did notice quickly that certain foods flared the pain more than others. Try to go on an anti-inflammation diet if you can.

What activities or treatments have helped you find temporary or long term relief?

Acupuncture, physical therapy, ozone therapy, hyperbaric chamber therapy, yoga, cardio, strength training and working diligently with my farm animals all have helped me progress in my healing.

Anything else you would like to add?

Make sure to monitor your “self talk”. I had no idea that I had developed a nervous system disorder, so I started to feel over time that I was “weak” or my body was “less than”. I did all I could to stay positive around that and decided to just make jokes and try to see a positive outcome. I never allowed myself to succumb to the internal conversation of “Why am I not healing when other people heal quicker from this type of injury?” My ego was bruised until my orthopedic surgeon eventually confided in me how amazed he was at not only my progress, but my overall attitude towards what I was dealing with. He feels it is in part contributing to my ability to beat this and put it into full remission. It may be a year after the original trauma that I will regain full use of my right hand without pain, according to him, but I see this as good news. There is a light at the end of the tunnel, and if my knuckles do not go back to their pre-injury size, then there are jewelers who can fix all my rings that are just waiting to be worn once again. We can do anything as human beings we want to, we just have to believe.

Please consider making a donation to RSDSA today!

Written by Heather Maerten for the RSDSA blog. 

My name is Heather Maerten and I’m a mother of three and a pediatric nurse.

How and when did you develop CRPS/RSD?

In August of 2015, I was working as a nurse in emergency transport for Children’s Hospital of Philadelphia. During a call, I rolled my ankle coming off the helicopter. I went to urgent care after my shift and was diagnosed with a sprain after the s-ray was misread (my talus bone in my ankle was actually fractured). From August to April, I saw multiple doctors and completed six weeks of physical therapy on a broken bone, unknowingly. In April, I met with a specialist and after multiple images it was determined my talus was broken, a ligament was shredded, and both tendons were torn. I had surgery in June which included a fibular groove deepening. During the surgery, my sural nerve (a sympathetic nerve) was accidentally cut through but the surgeon failed to inform me with the thoughts that it “would get better.”

That is the moment I developed RSD/CRPS, the moment my life changed forever.  

What has daily life been like since your diagnosis?

The first few days post op were horrible.  I cried, took pain medicine, slept and cried some more. My foot and leg felt as if they were being strangled but the doctors did not seem to understand. I was told it was a painful surgery, given more pain meds and sent on my way multiple times. Weeks went by and the pain progressively got worse: pins and needles, burning sensation, color and temperature changes, and atrophy. I had no choice but to go back to work as I am a single mom. I had to take a light duty job for the first time inmy life and it was extremely disheartening.  As the months passed, the nerve damage spread up my leg. I went to numerous pain specialists and underwent multiple nerve blocks (spinal, epidural and sural) over the next year. I was literally exhausted from being in pain every day. The thought of having to wake up day after day in pain made me feel hopeless. My kids would ask me almost daily “are the doctors going to fix you yet?” I tried my best to cover up what I was dealing with but they knew.

Nerve pain is hard to explain. It is like pins and needles times one thousand 24/7. It’s like coming inside after being out in the snow when you were little and experiencing that burning/re-warming feeling 24/7. It’s the feeling of having rubber bands cutting off circulation 24/7. It’s exhausting and it’s exhausting being exhausted 24/7. 

There was a point in time I made the decision with myself that I wanted to have my leg amputated. In my mind I was willing to lose my leg to get rid of the pain. I even had a meeting with my doctor and brought my family and begged him to amputate but he would not. Apparently that would not help the nerve pain and only make it worse.

What advice would you give to newly diagnosed Warriors?

Do not give up! If one doctor does not listen or understand, go to a second. If thirteen doctors do not listen, go to the fourteenth. Do your own research and listen to your body! 

After doing my own research I found an RSD specialist in my area. His name is Dr. Philip Getson. He was the first doctor to tell me I had RSD and basically inform me of my options. Unfortunately, I am in that 20% whose RSD spreads so my options were slim.

What activities or treatments have helped you find temporary or long term relief?

After many discussions with Dr. Getson, I chose to have a DRG spinal cord stimulator implanted. I was referred to Abbott and an amazing doctor, Dr. Sean Li. 

After a successful trial, I had the stimulator implanted June 2017.  It has completely changed my life.  My nerves and pain are now controlled. Although I still have work to do with this leg, I feel great! Since the stimulator was implanted, I have gone back to working my 12 hour shifts as a nurse, I coached my sons baseball team, and I run around with the three kids sometimes forgetting I even have RSD. There are days that are worse than others but the good days far exceed the bad days now!

What is one thing you wish those without CRPS/RSD could understand?

When I would go to doctor’s appointments and try to explain the pain and frustrations, I would often hear “well you look great, just keep doing what you are doing.” The biggest misconception one can have is thinking that just because someone looks great means they feel great. Just because I tried to hide my pain and actually get dressed and do my hair and throw a little mascara on does not mean I felt great. Just because I looked great does not mean my body was not screaming for help.

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

RSD continues to be studied and is becoming more recognized in the medical field. With more knowledge comes more treatments and the possibility of a cure.

Anything else you would like to add?

I hope that each and every one of you warriors can find something that provides relief! Do not give up! You are a warrior for a reason!

Reach out to Heather on Instagram or via email.

Please consider making a donation to RSDSA today!

Submitted by Jay Conner and Kathleen Coleman for the RSDSA blog.

CRPS Warrior Kathleen Coleman is the biggest Tampa Bay Lightning fan you’ll ever meet. She lives in Arizona and wanted RSDSA to help share her message of hope and gratitude via the below video by Jay Conner of Jaybird Media.

Please consider making a donation to RSDSA today!

The RSDSA team is excited to have you join our first virtual conference from October 19th through October 22nd. Below are a few FAQs to ensure you have an amazing experience!

 

Q. Is the conference free?

The conference is 100% free to join!

 

Q. When does registration close?

Registration does not close! You can register at anytime, even once the sessions have started!

 

Q. What time does the conference begin?

The conference officially begins with networking and our expo hall at 6:30p Eastern / 3:30p Pacific each night. Sessions begin at 7p Eastern / 4p Pacific each night.

 

Q. Which browser should I watch the conference on if I’m on a desktop or laptop?

Hopin recommends using Google Chrome or Mozilla Firefox when watching from your desktop or laptop. Safari is not fully compatible for video on desktops. Explorer/Edge is not compatible on desktops so we do not recommend using Explorer.

 

Q. Can I watch the conference from a mobile device?

Yes! Please visit https://hopin.to/events/rsdsa202ob on your mobile device with Google Chrome or Safari. There is no app to download!

If you are watching on your phone, once you login you will see the chat. You can minimize the chat by clicking the arrow on the right. From there, you’ll be able to see the buttons that says Reception, Session, Networking, and Expo.

While the conference is available on your phone, watching on your computer will give you the best experience.

 

Q. Where can I find the event schedule?

The event schedule can be found here.

 

Q. How do I join a session?

At 7p Eastern each night, click on the “Sessions” button to see which sessions are available to join. Click into the one you are interested in. There will also be a chat inside of each session that will allow you to speak with other Warriors and ask the speaker(s) questions.

 

Q. Can I view more than one session at a time?

If there are two sessions running at the same time that you want to participate in, you can always “hop” between the two of them.

 

Q. How does the networking feature work?

Hopin’s networking feature allows you to have a one on one conversation with another CRPS Warrior for up to five (5) minutes. Once you click on the networking tab, you’ll see a sentence that says “Are you ready? Click the button below to meet someone.” After you click the blue “Ready” button and confirm your audio/video settings (like the screen shown below), you’ll be in the queue to meet face to face with another Warrior.

 

If no one is available to chat at the moment, you’ll see a sentence that says “You’ll meet the next person available.”

Once you match with another Warrior, if you find yourself enjoying the conversation and want to connect with them, you can click the blue “Connect” button in order to share your information with them. It will only be shared with them if they click Connect as well. Their information will show on the Home screen when you log in to Hopin at https://hopin.to/account.

If you are not enjoying the conversation with that Warrior, or if the conversation is done, you can click the “Leave” button and you will not be matched with that Warrior again.

The timer at the top will show you how many minutes and seconds you have left with that Warrior.

The networking sessions will be available 30 minutes before and 30 minutes after our sessions each night.

 

Q. Can I watch the sessions later? Are they being recorded?

Each session will be recorded and you’ll be able to watch the presentations once we upload them to the RSDSA YouTube Channel here.

 

Q. When does registration close?

There is no deadline to register. If the event has started and you have not registered yet, you can still register and hop right in!

 

Q. Can I join RSDSA’s virtual conference session on Thursday, October 22nd and watch the final presidential debate?

Of course! Our conference ends at 8:30p Eastern on Thursday, October 22nd and the final debate begins at 9p Eastern.

 

Q. What should I do if I have a question that is not listed here?

Comment below or send us an email at [email protected]!

 

Written by Rocky Odell for the RSDSA blog.

I am but one face in pain out of millions

My name is not important. However, my PAIN is very important.

A physician triggered the monster I now live with. CRPS, also known as Complex Regional Pain Syndrome, is a pain disease with no cure and is very misunderstood. It has crippled my body. I live with pain often beyond description. It is a very real disease often called the most painful disease known to man. It is also called the suicide disease.

All the faces of pain share pain from diseases and injuries we never heard of and certainly never wanted. We all suffer in ways the healthy cannot even fathom. Those of us called legacy, high impact pain patients suffer diseases/conditions that destroyed our careers and our lives. It is said there are twenty (20) million Americans who are identified as high-impact legacy patients.

Almost all faces of pain were treated with alternative treatment modalities before being placed on medications only. Our physicians were responsible for ensuring every treatment was tried before opioids and other pain-relieving medications were ever started. I knew opioids were addictive, however there is a distinct difference between addiction and dependence. They cared!

My pain was treated by:

• Lumbar Sympathetic Blocks
• Two concurrent Temporary Epidural Catheters that ended up causing staph infections and more surgery.
• Three (3) different Spinal Cord Stimulators.
• Two (2) Intrathecal Pain Pumps
• Two (2) Brachial Plexus Temporary Catheters
• Stellate Ganglion Blocks
• Intrascaline Blocks
• Axillary Blocks
• High Dose Lidocaine Clysis procedures requiring five days each in the ICU
• Lidocaine Drips two to three times a week in MD office for several weeks
• Subq 20% Lidocaine injections at home
• Cryoanesthesia where an offending nerve was frozen
• Two (2) Chemical Sympathectomy’s (nerves burned)
• One Surgical Sympathectomy where five inches of nerve ganglion was surgically removed
• Bier Blocks
• Trigger Point Injections
• Physical/Occupational Therapy
• Hypnosis
• Acupuncture
• Psychological visits

I am sure I have missed some treatment modalities. I/We do/did everything asked of us, everything before being placed on opioid pain medication. No one wanted our pain gone more than we did, no one! Often these treatments only served to worsen our pain, to even cripple us further. For me, all I underwent caused my disease to spread from my left foot to now encompass my whole body in just over four years! It is all very well documented in my medical records. My disease has crippled my body horribly. I have lost the use of my dominant right hand; my left hand is following the right. I have bilateral thumb fusion meaning I have no grip, none. We signed pain contracts and were subjected to regular urine testing. Many had to undergo random pill counts.

For the faces of pain, we suffer even more now because we functioned and functioned well on often high-dose opioid pain medication. It was ALWAYS STARTED LOW and titrated up. Then in 2016, the CDC Opioid Prescribing Guidelines came about. Those involved in writing the guidelines were not pain management physicians and none of them understood the term chronic pain. The faces of pain suddenly found with no warning our long-term pain medication was suddenly tapered and or stopped suddenly. We weren’t even included in a tapering or cessation program. It just suddenly stopped. Far too many of us are in our 50’s, 60’s and 70’s. I had just turned 70 and the opioids were stopped with absolutely no thought to my safety or health.

Now there are millions of faces of pain, suffering needlessly because of those who abuse illicit drugs like Heroin, Carfentanyl, Methadone, Methamphetamine to name a few. Those who abuse illicit drugs are not monitored ad certainly do not sign any kind of contract. It is a rare face of pain that goes to the street for illicit drugs.

What in the hell does the government want from all the faces of pain who have done no wrong and never abused any drug? Do you want all the faces of pain dead? Seems like it. May you nor anyone you ever care about experience what we do, the pain we all feel we would never wish on anyone. Why are you causing the faces of pain to suffer needlessly? All I can say is shame on you for going after good doctors that directly affect the faces of pain. Shame on you.

Please consider making a donation to RSDSA today!

Written by Dr. Katinka van der Merwe for the RSDSA blog.

The Spero Clinic has gained a reputation for effective, non-invasive nervous system rehabilitation, and for the sheer number of people who have found remission after going through our program. Often people ask me why our clinic is so unique in its approach. I think the answer is multifaceted, but certainly, one of the factors that makes us most successful where other approaches have failed is that we approach the body as a whole. This may seem simple, but if you think about it, it is very powerful. When patients are suffering from conditions like CRPS or EDS (Ehler’s Danlos Syndrome), they are often bounced around from specialist to specialist. Each doctor only studies the specific symptomatic area that falls within their specific specialty. They do not consider (or may not have knowledge of) how a condition like CRPS may affect multiple systems. They do not consider the root of the diagnosis, but rather focus on the various symptom(s) they specialize in.

The autonomic nervous system is a control system within your peripheral and sensory nervous system that influences the function of internal organs. This system acts largely automatically without any conscious input from you, and regulates bodily functions such as digestion, sexual arousal, respiration, heart rate, blood pressure, and urination, to name a few. Certain reflex actions such as sneezing, coughing, and vomiting are also controlled by the autonomic nervous system. Within the brain, the autonomic nervous system is controlled by the hypothalamus. The hypothalamus is located just above the brain stem within the brain.

This system is divided into the sympathetic and parasympathetic nervous system. The sympathetic nervous system is largely responsible for speeding up functions in the body, and is known as the “fight or flight” system. The parasympathetic nervous system is considered the “rest and digest” or “feed and breed” nervous system, and mostly is responsible for slowing functions down inside the body. Think of the sympathetic nervous system as the gas pedal in your car, and of the parasympathetic nervous system as the brake.

Pedal to the Medal or Playing Dead: The Two Things Every Single CRPS Patient’s Nervous System Has in Common

What if your body was an airplane and your pilot is drunk? The autonomic nervous system (sometimes known as the automatic or involuntary nervous system) is incredibly important to your health, as this system is the master control system that runs every single function in your body. Most of these functions require no conscious thought from you. You don’t have to remember to breathe, for example. When you are sitting in an airplane, you don’t have to know exactly what the pilot is doing up there in the cabin. You just trust that he is doing his job and will keep the plane in the air and eventually land it safely. In the case of most CRPS sufferers, the pilot is unfortunately up to all sorts of monkey business, and usually has his hand frozen in the full-throttle position.

The sympathetic and parasympathetic nervous systems have exactly opposite effects on the functions of the body. They essentially work in opposition to each other, but in a way that complements each other. As I said earlier, think of your sympathetic nervous system as the gas pedal, and the parasympathetic nervous system as the brake pedal. The balance between the two is crucial for the perfect function of every cell in your body. While they are both crucial to the car, they cannot be stepped on at the same time. As many CRPS sufferers unfortunately find out firsthand, this is bad news for your health. The golden rule of the autonomic nervous system is that if one system is up, the other system must be down.

In every single CRPS patient, one of two abnormal states exist: the sympathetic nervous system has its pedal to the metal, all the time, or the brain has been stressed for so long that the nervous system plays dead. This is much like an animal which, after fighting for its life, understands that its options have ran out, and so it plays dead in a last ditch effort to survive. This may be the case years before you ever develop CRPS, or your nervous system may be injured resulting in this imbalance when you suffer from the traumatic injury that triggered your CRPS. Sometimes CRPS can even be triggered without a traumatic injury or invasive procedure.

The Sympathetic Nervous System: “Fight or Flight”

This system was designed to help your body fight to stay alive when your survival is being threatened. Think of a caveman in hand-to-paw combat with a saber-toothed tiger. This portion of your nervous system responds very quickly (think zero to ninety in a few seconds), since one usually doesn’t have time to calmly ponder one’s response to a life-threatening situation. When your life is being threatened and your body gets ready to fight in order to ensure its survival, every small bit of energy spent is carefully considered. Nothing is wasted. Energy will be rerouted away from systems that do not concern themselves with short-term survival, to where it can be used more readily to fight an immediate threat. For example, blood will flow away from the digestive tract and skin in order to be rationed out to the lungs and muscles. It is more important under those circumstances to be able to fight using your muscles, and to breathe hard and fast, as your body needs oxygen.

Speaking of oxygen, the bronchioles (small air passages) in the lungs will open up, which allows for more oxygen into the blood. At the same time the heart will beat faster. Another physiological change in the body is that the pupils will dilate, allowing more light to enter the eyes. The adrenal glands on top of the kidneys will pump adrenalin in case you need extra motivation besides fear to fight. It will also make all the sphincters (think of pressure valves) in the body, like the urinary sphincter, contract and close tight.

So why does this affect you? There probably isn’t the equivalent of a saber-toothed tiger chasing you every day. Your brain cannot distinguish fear and stress from actual life-threatening situations. Additionally, a very old traumatic event can run in a continuous “loop” in the subconscious mind. The brain cannot distinguish between this old memory and present danger. The old memory almost acts like a computer virus, messing with the software in your nervous system. Your brain does not know that it isn’t happening anymore.

When a person suffers an emotionally traumatic event or a neck injury following, for example, a fall or car accident affecting the brain stem directly or indirectly, the sympathetic nervous system will become overexcited, affecting the whole body. This will cause your sympathetic nervous system, or fight-or-flight response, to be stuck in the “on” position day in and day out—and if your sympathetic nervous system is stuck all the time, your parasympathetic nervous system is turned off. Instead of these two systems working in perfect harmony, the sympathetic nervous system turns into the schoolyard bully, or the puppet master, pulling your body’s strings and directing it on a disastrous course every second of the day. This will create the perfect conditions inside your body that put you at risk to develop CRPS and other autonomic dysfunction or WAD (whiplash-associated dysfunctions). I will discuss each symptom in detail, after we explain how the parasympathetic nervous system works.

The Parasympathetic Nervous System: “Rest and digest” or “Feed and breed”

Think of your parasympathetic nervous system as the system that calms you down, helps you to rest and sleep, helps to facilitate healing in the body, and deals with sexual arousal. It functions to counter the sympathetic system. After a crisis or danger has passed, this system helps to calm the body. Your heart and breathing rates slow, your digestion resumes, your pupils contract, and you stop sweating.

This system will also cause the increase of blood flow to your GI tract following a meal to allow digestion. It stimulates the movements of your intestines (called peristalsis) that move food through your intestines. It will constrict the pupil of the eye, cause you to salivate when appropriate, and is responsible for getting you in the mood for sex. This system, if activated, will activate your immune system, cause increased circulation to the skin and extremities, and help to release your “feel-good” hormones, called endorphins. It will also decrease temperature. It is the main control system that promotes healing. This system is usually underactive, suppressed, or turned off in those who suffer from CRPS. No wonder you are not in the mood for getting frisky!

The Vagus Nerve: Your Severed Lifeline

If you suffer from CRPS, you should familiarize yourself with the vagus nerve, as it is a major player in building the puzzle that forms CRPS. The vagus nerve is the single most important nerve inside the human body outside of the spinal cord. It is one of twelve pairs of cranial nerves. These nerves emerge directly from the brain and brain stem, as opposed to spinal nerves that emerge from the sides of the spinal cord. Each cranial nerve is paired and is present on both sides. The cranial nerves provide motor and sensory information mainly to the structures of the head and neck (think sensations like smell, taste, hearing, or vision, for example.) These nerves are numbered by roman numerals. The vagus nerve is the tenth nerve (CN X), and it is the longest cranial nerve.

Please stick with me here, as I realize that some of you may be bored by the anatomy of the nervous system. I promise that this nerve matters greatly in the development (and therefore also the healing) of the neurological symptoms of CRPS.

The vagus nerve (meaning “wandering nerve”) has multiple branches that diverge from two thick stems rooted in the cerebellum and brain stem that wander to the lowest viscera of your abdomen also connecting to your heart and most major organs along the way, such as the lungs. The vagus nerve supplies motor parasympathetic fibers to all the organs except the adrenal glands, from the neck down to the transverse colon. The vagus nerve is responsible for many different tasks, including (but not limited to): heart rate, digestion, sweating, speech, coughing, fainting, and vomiting, to name but a few. Remember, people who suffer from CRPS also suffer from sympathetic dominance (the schoolyard bully), causing the parasympathetic nervous system to be suppressed and to shut down. This means that people who suffer from CRPS also suffer, by definition, from an underactive vagus nerve.

Just to recap: the parasympathetic nervous system is responsible (in general) for slowing and calming things down, as well as healing and sleep. The vagus nerve forms an electric circuit that links our heart, digestive tract, and lungs to the brain. Let’s look at how this nerve affects specific organs just a bit closer.

Because of the vagus nerve malfunction, CRPS patients almost universally will exhibit some form of GI symptoms or conditions. These symptoms may be as mild as constipation or as severe as gastroparesis, a complete shutdown of the GI system. Other diagnoses may include IBS (irritable bowel syndrome), diverticulitis, celiac disease, Crohn’s disease and gluten intolerance, to name but a few.

In my experience, few doctors will treat these problems as a central nervous system dysfunction. It is far more likely that these patients will be prescribed medicine to counteract their symptoms. If they experience heartburn, they will be given antacids. If they are constipated, they will be prescribed medication for that. Of course, this complicates the toxic load your GI system is already dealing with, not to mention your liver and kidneys.

The following may cause digestive symptoms (especially in patients suffering from CRPS):

• Autonomic (parasympathetic) nervous system dysfunction, turning “off” digestion and the immune system in the gut, specifically malfunction of the vagus nerve
• Overuse of antibiotics causing an imbalance in good versus bad bacteria
• Candida overgrowth resulting from a weakened immune system, heavy-metal toxicity, or not enough good bacteria in the gut
• A poor diet low in fiber, acidic in nature, and high in sugar and saturated fats
• Medications adversely affecting the gut
• Weakened digestive enzymes, resulting in food not being completely digested
• Food sensitivities or allergies

The health of your digestive system is directly linked to the health of your immune system. Almost 70 percent of the immune system resides in your intestinal tract. This branch of the immune system, made up of billions of friendly bacteria and yeast, is responsible for many functions including proper nutrient absorption, production of vital nutrients (produced by the bacteria in your gut), detoxification and alkalization of the body, and last but not least, one of the main weapons your body uses in fighting against bad bacteria.

While we do not have the luxury of space to discuss every digestive problem or diagnosis in detail, we feel strongly that the digestive system of every patient suffering from fibromyalgia must be treated as if it is not well.

The Basic Steps Necessary to Heal the Digestive System

• Detoxify
• Avoid foods that you are allergic to (or get treated for your specific allergies)
• Change your diet
• Rebuild the gut with good food and good bacteria
• Nourish the body with healthy and proper vitamins, minerals, and supplements

In my previous post on the RSDSA blog, I discussed the role that viral and and/or bacterial infections play in CRPS. These infections can wreak havoc on GI track and can also use the Vagus Nerve as a ladder, essentially reaching the brain and causing massive central nervous system inflammation and dysfunction.

It is my experience that the vast majority of CRPS patients also suffer from GI dysfunction. Doctors must recognize this and stop treating the symptoms of CRPS without addressing the underlying nervous system dysfunction.

Dr. Katinka van der Merwe is founder and CEO of The Spero Clinic and practices in Fayetteville, Arkansas with four other chiropractors and a growing dedicated team of twenty staff members.  She has gained a reputation of taking on hopeless and severe patient cases and has gained international attention due to her unprecedented success rates in these cases. She treats patients from all over the world, using her Neurologic Recovery Program, the emphasis of which is Neurologic Rehabilitation and restoring balance to the Autonomic Nervous System.  She is the author of two books, “Taming the Beast: A Guide to Conquering Fibromyalgia” and “Putting Out the Fire: New Hope for CRPS,” available on Amazon. She is also featured in the newly released best-selling book “Wakeup: Miracles of Healing from Around the World.”  In October 2018, Dr. Katinka was awarded Global Chiropractor of the Year in Atlanta, Georgia by the Masters Circle Global for her outstanding achievement in her profession.

Please consider making a donation to RSDSA today!

Written by Bryan D. Pope of The Cochran Firm for the RSDSA blog as a silver sponsor of RSDSA’s First Virtual CRPS Awareness Walk.

The last five months have been hard on everyone as we deal with the impacts of COVID-19 in our society. I have represented victims of negligence my entire career and have seen people struggle with the aftermath of life altering injuries.

Having personally represented many members of the CRPS community for over 20 years, I know these past few months have been especially difficult for CRPS/RSD Warriors.  They already face isolation and deal with challenges such as difficulty sleeping and trouble concentrating and completing simple tasks due to the never-ending pain and discomfort. Now they are dealing with being at high risk for COVID-19 due to their compromised immune systems and being afraid to go to doctor appointments for fear of potential exposure.

Our law firm has worked hard to keep our team and our clients safe and healthy. We have set up remote workspaces and operate via Zoom for depositions, court hearings, calls with clients, etc.

We have also paid particular attention to the well-being of our CRPS clients because we understand the struggles they deal with. This includes setting up calls with them to make sure they know we are here for them. We want them to see our faces, feel comfortable with the status of their legal cases and to make sure they know we are still working on their cases despite the “new normal.”

We know the pain and struggles of CRPS can be difficult to explain to family and friends. This is why it is so important to get support from organizations like Reflex Sympathetic Dystrophy Syndrome Association (RSDSA).

We are proud to continue our partnership with RSDSA as a silver sponsor of the upcoming First Virtual CRPS Awareness Walk. On Saturday, August 22nd, we will all be wearing orange as we continue to raise awareness of CRPS/RSD.  Join us in the Fight Against the Flame!

Please consider making a donation to RSDSA today!

Written by Dr. Katinka van der Merwe for the RSDSA blog.

Ten years ago, I treated my first CRPS patient, Carlos. Carlos had full body CRPS and suffered from gastroparesis. Carlos had no quality of life left, and would curl into a ball each time he ate the smallest bite of food, screaming pain ravaging his body. Carlos’s youngest son was nine months old. In those years, I was like so many other doctors who face their first CRPS patient. I was unfamiliar with the condition, and I felt daunted by the sheer magnitude of his suffering. Luckily for me, I had one tool that turned out to be exactly what Carlos needed: Vagus nerve stimulation. The Vagus nerve is one of the twelve pairs of cranial nerves. Back then, it was still rarely discussed as relating to chronic pain. I understood its role in inflammation of the nervous system and the communication to the GI tract. I thought that as scared as I was of failure, I might be able to make a difference for him. That day, my career made a quantum leap. Carlos left my office and was able to eat a full meal. Three months later, Carlos achieved remission and has remained in remission despite serious subsequent injuries and a gallbladder surgery. I would never forget the gift that my first CRPS patient had given me. He gave me passion, he showed me my mission.

You may wonder how the answer for Carlos might have been so seemingly simple. You may also wonder how a chiropractor (of all professions) was able to help such a serious CRPS case. The difference can be found in my education (which started in my childhood, growing up in a holistic family, raised by a successful chiropractor in South Africa). Medical doctors are trained to believe that pain is wrong, and that sometimes, the body fails to repair itself. In this instance, allopathic medicine attempts to save the day. This is done by interrupting, numbing or interfering with the pain signal. The root of disease is rarely addressed, and if so, it is most often seen as as a genetic weakness, to be managed by pharmaceuticals. The philosophy that I was raised with believed something quite the opposite. The tenets of chiropractic stated that the body is intelligent, governed by the central nervous system, and capable of healing even the most horrific injuries or condition if able to function correctly. It stated that pain is not a mistake to be numbed, but a cry for help from the body for attention from the nervous system.

I set out to build a program to heal the central nervous system from within. My philosophy was one of unending hunger for perfection. You see, my father taught me early in life that a good physician is not driven by the people they help as much as the people they cannot help. My criteria for treatments, modalities and systems were that they had to be minimally invasive and that their outcome would be to help the body function better from within, allowing the patient to heal. I felt undaunted by the commonly accepted belief that certain conditions simply could not heal and should be accepted.

Fast forward ten years later, and my dream of helping the hopeless is still a work of progress. What a magnificent work of progress, however. To date, my highly trained team and I have treated more than four hundred CRPS cases. Our reputation has grown (in a large part due to word of mouth and social media). While we are still attempting to break through and be accepted by the mainstream CRPS establishment, our success stories are undeniable.

Our treatment system is one I call “shock and awe”, meaning, we have precious few weeks to give a hopeless patient hope again. You see, most of our patients are desperate and fearful when they start. Their biggest fear is that they will face disappointment once again. It is our job to help them gain trust in their body’s ability to heal again. To achieve this goal, I have gathered treatments and modalities from all over the world. If something is not consistently successful, it is replaced by another more effective treatment. These treatments are delivered in unison over (on average) a three-month period for maximum effectiveness. We believe that together, our treatments all have the same goal: healing the central nervous system. When delivered in this way, they increase the chances of success in a synergistic fashion.

Because we have seen hundreds of CRPS cases, all of which are approached in a holistic fashion (where every part of the body affects every other part), we have accumulated a wealth of interesting data that we believe may one day greatly benefit those who suffer from chronic pain conditions like CRPS. When we have obstacles come up in our treatment plan, we always want to know why. The why makes you more effective and allows you to help more people. The whys of failure have pushed us to grow.

During the years, we have noticed a particularly interesting commonality between patients who experienced unexpected increased pain during treatment, or failure to respond to treatment:  Viral and/or bacterial infections. As we have developed a successful approach to safely drawing blood, we have been able to study the blood analysis of hundreds of CRPS patients, and started to recognize repeated patterns. We then realized that not only were these patterns present in our difficult patients, but in roughly ninety percent of our CRPS and EDS (Ehlers-Danlos Syndrome) patient populations. Most often, we find that the culprit belongs to the family of Herpes viruses (The Epstein-Barr virus, also known as mononucleosis, being the most common).

You see, viruses and bacteria often hide inside the body long after the initial symptoms of obvious infection have passed. Instead of being conquered by a healthy immune system, in a compromised body (where the central nervous system cannot govern the immune system correctly), these bugs repeatedly infect the Vagus nerve, hampering its function and causing massive inflammation, eventually affecting the brain, spinal cord and global nervous system. The GI tract is particularly vulnerable to these infections. I am not alone in this theory. Michael VanElzakker, a researcher affiliated with the Massachusetts General Hospital Psychiatric Neuroscience division as well as the Tufts University PTSD neuroimaging laboratory, has published a novel hypothesis on the possible etiology of Chronic Fatigue Syndrome (CFS) and the Vagus nerve, for example. His theory is that Herpes viruses and certain intracellular bacteria establish latency in the Vagus nerve and reactivate during periods of stress or illness, causing the release of pro-inflammatory cytokines. Cytokines are protein messengers that when activated, can lead to massive inappropriate inflammation of the Central Nervous System.

It is his belief, as well as mine, that traditional antivirals are not effective in treating these infections.

Separate research has found a connection between GI infections and Parkinson’s. Experiments in mice at Johns Hopkins Medicine strongly suggest that the transmission of a toxic neuron-killing protein (associated with Parkinson’s disease) originates among cells in the gut and travels up to the brain by hijacking the Vagus nerve, essentially using the Vagus nerve as a ladder to the brain.  This paper, “Transneuronal Propagation of Pathologic α-Synuclein from the Gut to the Brain Models Parkinson’s Disease,” was published in the journal Neuron.

In our clinic, we have learned how to identify the footprints that viruses and bacteria leave in blood work analysis. We have developed a natural treatment arsenal that attack these organisms, and we support the central nervous system to aid the immune system, which in theory allow the immune system to fight these infections from within. This has greatly improved our success rates.

It is my belief that we are simply scratching the surface of what we know of conditions such as CRPS. It is also my belief that a holistic approach to these conditions will be the most effective way to allow patients to heal from within, rather than an allopathic model, where separate symptoms are treated by separate specialists, often with a vague to non-existent understanding of how each system affects the other. For example, gastroparesis and chronic bladder infections are often not associated with CRPS, when they should be.

It is my sincere goal to help as many hopeless and suffering patients in my lifetime, and to share my knowledge and approach with others. To this end, we have committed to start our first study (backed by a major university) on the effectiveness of Vagus nerve stimulation using our own technique early next year. CRPS has been misunderstood and mistreated by Band Aid treatments for too long. It is time to fight this beast with a fresh approach.

Dr. Katinka van der Merwe is founder and CEO of The Spero Clinic and practices in Fayetteville, Arkansas with four other chiropractors and a growing dedicated team of twenty staff members.  She has gained a reputation of taking on hopeless and severe patient cases and has gained international attention due to her unprecedented success rates in these cases. She treats patients from all over the world, using her Neurologic Recovery Program, the emphasis of which is Neurologic Rehabilitation and restoring balance to the Autonomic Nervous System.  She is the author of two books, “Taming the Beast: A Guide to Conquering Fibromyalgia” and “Putting Out the Fire: New Hope for CRPS,” available on Amazon. She is also featured in the newly released best-selling book “Wakeup: Miracles of Healing from Around the World.”  In October 2018, Dr. Katinka was awarded Global Chiropractor of the Year in Atlanta, Georgia by the Masters Circle Global for her outstanding achievement in her profession.

Please consider making a donation to RSDSA today!

Written by Isabel and reposted with permission on the RSDSA blog.

My 17-year-old son broke his leg at football practice the summer before his senior year of high school. The X-ray showed a broken fibula in two places and one of the pieces of bone was pinching the peroneal nerve. The orthopedic surgeon was concerned about foot drop because of possible damage caused to the nerve. He warned us that foot drop might still be present even after surgery to repair the fibula. Foot drop would require our son to wear a brace on his ankle for the rest of his life. Little did we know then that “foot drop” would have been way better than the CRPS he ended up with.

Immediately after the surgery, pain spiked even more than he had in the four days waiting for surgery. Our son, Austin, was in excruciating pain. The hospital discharged him with a cryo ice machine to help with the swelling and a prescription for pain killers that is normal for a fibula repair like the one that he had done. Four days after surgery, the surgeon reached out to us to check in on Austin and how he was doing. We told him that he had been in constant pain and could not get off the couch without assistance and that the foot was discolored (pink). The surgeon instructed us to bring him in to his office. He diagnosed the color change from the calf down to his toes and touched his foot lightly and then applied a little pressure on the foot’s affected area. In both instances that the foot was touched the response was the same. The pain was excruciating for our son. The surgeon informed us that Austin most likely had RSD (Reflex Sympathetic Dystrophy – another term for Complex Regional Pain Syndrome aka CRPS). Austin could not put any weight on his leg. He was bedridden, but more like couch ridden. He required help for everything including getting to the restroom and bathing. The surgeon made a referral for Austin to see a pain specialist.

Twenty days after surgery, we visited the pain specialist. We were so excited to learn this doctor studied CRPS at Harvard. We could not believe in our small town we were able to find someone with knowledge about this disorder. The doctor explained how painful CRPS is and compared it to the pain an amputee feels. He planned out six sympathetic lumbar nerve blocks over the next several weeks. Each block provided a few hours of relief and at this point we were grateful for every minute of relief. We had him doing physical therapy three times a week and we scheduled those close to the nerve blocks so he would have less pain and more mobility. The doctor also started Austin on Gabapentin. The dosages were increased to the max of 1800 mg a day. The pills helped with some of the electric shocks he would get however the side effects were less desirable. Austin was “foggy,” and unable to answer questions or remember simple things. He was still unable to put weight on his leg and so he was confined to the couch. He could not even have the ceiling fan on because he could feel the pulse of the fan blades blowing air on his foot. The air waves hitting his foot would cause throbbing pain. We made a box so he could put his foot inside to keep the air waves from causing him any additional discomfort. His leg was purple and swollen. The hair on his leg would hurt him. A sheet touching his skin was too painful. We made a box over his leg so he could have a sheet on his body at night. He could only move around with help or crutches. His skin temperature was hot and he would be sweating even if the temperature was cold. Sometimes it was just his leg, other times it was his whole body.

After the six lumbar blocks were completed, the pain doctor (the “Harvard CRPS specialist”) wanted to take a “wait and see” approach to our son’s care. We tried to follow his advice, but our son was in so much pain. We began to research alternative treatments for CRPS. We asked the doctor about ketamine infusions. He was completely against it. We felt we now had to put our son’s care in our own hands as we could not see him in this pain.

Against the pain doctor’s advice, we scheduled our son for two weeks of ketamine infusions. The infusions were all day outpatient. Our son slept through most of the infusions and we were grateful he could sleep. The dosages were increased and his pain diminished from a 10 to a 7-6 on the first day of treatment. That was the first time in months that he was able to sleep in his bed. As the ketamine infusions continued and the dosage increased, the pain kept dropping. We able to get it down to a 5-4 on the pain scale. The ketamine infusions were not covered by insurance and were very expensive. As parents we did everything we could, using our savings and taking out a hardship withdrawal from our retirement account to pay for all of the treatments that we did to keep our son from being in the pain that he was in. Eventually after many appeals, our medical insurance reimbursed us for part of the ketamine infusions.

Austin continued to do physical therapy and aqua therapy. The aquatic therapy pool was an hour away. We would drive there three times a week. It was the only time we could see our son “walk” again without assistance while in the water. I broke down in tears every time. These therapies were giving him some more movement but he was in a lot of pain. I did a lot of research and tried acupuncture for two months as well. Austin did not feel much of a difference. I continued to search for more treatment options. My husband and I felt we were racing against a clock because the best chance of remission from CRPS is within the first six months to a year. At this point we were almost five months in and he was still unable to walk without crutches. Our search led us to stem cell.
 We found facilities that were in Florida and very expensive. Luckily I came across a physician locally who had just opened up a functional and regenerative practice. I contacted this doctor and he had been a pain doctor and was tired of masking people‘s pain. He was familiar with CRPS, but asked us to wait until he could learn more before treating our son. It just so happens he was set to attend a seminar for physicians treating CRPS with stem cell. I could not believe the luck and so we waited.

I will mention this doctor’s name because I believe he was Godsend to our family. His name is Dr. Jonathan Tait and his practice is in Oro Valley, AZ. He ended up doing two procedures on Austin a few months apart. Both procedures were stem cell transplants (from Austin’s hip) and PRP (Platelet Rich Plasma). Since Austin’s CRPS was a result of a major nerve injury, we felt targeting the site of his nerve injury with stem cells could repair some of the damage. The doctor injected the stem cells into the myelin sheath near the injury site. Prior to these treatments, Austin’s entire foot was where he felt the majority of his pain. He had numbness and shocks in his calf near the injury site. After the procedures, Austin’s pain decreased and the numbness and shocks were less. It was a turning point. The pain doctor was against this procedure as well and probably many people with CRPS would be afraid to have needles injecting into their area of pain, however it was a risk Austin was willing to take due to the pain he was feeling and frustration with his inability to walk and live his life.

Austin reported feeling a difference and his rehab was moving in the right direction. Dr. Tait recommended Hyperbaric Oxygen Treatment (HBOT) to help with the stem cell growth. I had read this had been helpful for people with CRPS. There was a clinic offering HBOT treatment about an hour away. This was also an expensive treatment not covered by insurance. Within three HBOT treatments, Austin’s pink/purple leg began to look normal. After seven treatments, both his legs were the same color and size (not swollen). He completed many treatments (45) at the clinic, however to cut down on costs, we purchased a home HBOT. He uses the home HBOT daily and it finds it very helpful.

Dr. Tait also wanted Austin to not be reliant on pain pills or Gabapentin. It was this physician who helped us come up with a plan to wean him off of these drugs. Dr. Tait also wanted Austin to change the way he ate. We had read before how certain foods (sugar, pork, etc.) can cause more nerve pain and so we figured let’s do this plan! The doctor had him tested for food allergies and sensitivities and put him on a strict plan. Again, pain was reduced and other symptoms he had been having were also reduced. Austin had a lot of digestive issues after starting the Gabapentin. The diet helped with this as well.

After all of this, our son was still mostly homebound and only able to go to school for a few hours a day. This was his senior year. He had been a popular kid with lots of friends. He was on the football team and his hopes for an athletic scholarship were out the door. He was unsure if he would even be able to complete the 12th grade and graduate. Socially, it was very difficult. Many friends came by when he had initially broken his leg. When he was diagnosed with CRPS, friends seemed to dwindle down. People just do not understand the disorder and level of pain. Eventually only a few friends checked in and visited. It broke our hearts to see how a happy 18-year-old boy with his whole life ahead of him was now depressed, in pain, and alone with the exception of his family. There were many nights he cried and shouted, “why?!” As parents, we felt the same “why?!” We feared for him. We were afraid he was going to commit suicide. We put him in counseling even though he did not want to go.

So now he is seven months into CRPS and we kept searching for a cure. Now, I know there is no cure but I prayed every day for one, I still do.

I saw on the internet some had success with Calmare. We showed the testimonials on Dr. Michael Cooney’s website to my son. It gave him hope. He was still weaning off the Gabapentin, but this gave him motivation to wean off since you cannot be on nerve medications for Calmare treatment. We set up flights and hotels for a few months away to go to New Jersey for Dr. Cooney’s Calmare. We prayed this would be the cure or at least the path to remission. Our son graduated high school. We had dreamed of him walking across the stage to get his diploma, walking without a thought of pain, but that was not the case. He walked with a cane and he had pain but we were so proud of everything he had overcome.

June could not come sooner. The flight was so difficult as the air pressure causes someone with CRPS a lot of pain. He was still using the walker or crutches to get around. He was unable to wear shoes! The only shoes he could wear on his CRPS foot was a diabetic slipper. It has Velcro straps allowing it to have more room, but he still had to apply a ketamine cream or a lidocaine patch to numb the top of his foot. Socks were hard as well but he could tolerate a fuzzy sock. We arrived and met Dr. Cooney the next day. This man was another angel in our son’s life.
Dr. Cooney explained the scrambler therapy to us. I would have never thought something like this could help anyone but when you are desperate you are willing to try it all. As a family, we were desperate and we deeply wanted our son to live without this pain and be able to walk! The treatment was painless. Other than the doctor touching his foot, which any touch was uncomfortable, the electrodes do not hurt. They emit a painless signal. The first few days, there was not much decrease in pain, however Austin slept a lot which was unusual. The doctor was determined to help Austin and would change up the placement of the electrodes each day. Finally a few days later, Austin reported feeling less pain and being able to touch his foot. We located a HBOT clinic in the New Jersey area and he continued with this as well.

After a week with continued improvement, we asked the doctor if we could double up on treatments. He agreed as Austin was showing improvement. When Austin completed the Calmare treatment, he could wear shoes and did not need a walker or the ketamine cream or lidocaine patches on his foot. He could even touch his foot. It was for us, a miracle! For the next month, per Dr. Cooney’s instructions, he had no physical therapy and had to simply REST. This was scary advice to follow as we were afraid he would regress, however we had Austin follow the advice. He was in almost no pain. He was at a level 2 to 4. He could walk unassisted! He was slow but he was walking. After a month of rest he started walking on a treadmill on a daily basis and increased his level of activity. He also started going to collage two days a week so that also helped to get him walking and back to a normal routine.

After a few months some pain started to come back. As per Dr. Cooney sometimes a calmare booster is needed to settle the effected nerves back to their normal state. Luckily for us we found Dr. Wade in Glendale Arizona only 2 hour away. We took him in for a Calmare booster, three treatments. Austin’s pain was now down to a 1 to 3. The last Calmare booster was over a year ago. I am happy to report that Austin is in remission, not cured but not in pain. He worked up to wearing various shoes and he was able to do this by using a tub of rice and immersing his feet in the tub for 10 to 30 minutes a day for desensitization. He continued on the treadmill and was in such great shape he went snowboarding various times last winter. Snowboarding was his goal and it was tough to get there. The boots are painful and he knew he had to get used to shoes and improve his stamina and balance. He worked hard every day using snowboarding as a goal and his hard work paid off. Austin’s rehab was almost four hours a day. It included two hours HBOT (home chamber) and two hours of treadmill, exercise bike and weights. He also did the rice desensitization daily until he felt he did not need it.

CRPS remission is not like a cancer remission. There are still occasional shocks and a lot of stiffness, especially in the morning. Austin gets up an hour earlier and sometimes uses a cane until he does not feel stiff. He can finally sleep in his bed with sheets but he wears a fuzzy sock on his CRPS foot because though he does not feel pain, the sensation of sheets feels awkward. Weather also impacts him. Cold can cause more joint stiffness.

Every CRPS case is different and what works for one person may not work for another. This story is what helped my son.

There are things I wish we would have known from the beginning and so I hope my son’s story helps someone out there. Here are some tips I wish I would have known:

ICE and cryo are detrimental to nerves and bad for CRPS

MOVE – It hurts, but keep moving as being immobile makes you more immobile

Go to physical therapy (PT) as early as you can. Every little bit will help you get further. Water PT is even better!

Try to not rely of walkers or wheel chairs. Do your best PT to stay mobile.

Counseling – If you are in chronic pain and depressed get help, talk to someone

Pain pills and Gabapentin – In our case, we wish we could not have used these at all or as long as he did. If you can, try treatments like Calmare and HBOT that are painless before medications. This is a personal choice but it is one of the biggest regrets I have.

Consider diet changes and research supplements. Austin takes fish oil, R-lipoic acid and B-Complex (for nerve health), tumeric (anti-inflammatory), vitamin C (for no CRPS spread or recurrence) and Neuro-Mag (magnesium- calcium channel blocker).

If a new surgery is needed for an unrelated condition, take vitamin C before and after surgery (50 days total – we use 1000 mg time released). Also read up on anesthetic protocols to help prevent CRPS spread. A ketamine infusion during surgery and an epidural could help as well. Consult with your doctor and the anesthesiologist prior to any procedure.

If you are a caregiver or loved one, be understanding of the pain your loved one is feeling. Be supportive and be present. Our son was a teen and when we should try to let him be more independent we were babying him. We learned to stop asking all the time about his pain. Asking about pain reminds people they are in pain. As he got better, we tried to give him chores he could do and allow him to be more independent even though we wanted to coddle him.

Other therapies that Austin thought were helpful were mirror therapy, Epsom salt foot baths, rice tub for desensitization, and red light therapy.

Occasionally Austin feels shocks in other parts of his body, but it has not spread. He gets up and moves around and it goes away. Do not stress about it, just move!

As difficult as this CRPS situation was for our son and our family, we were fortunate to find some great doctors. We thank:

His surgeon Dr. Ty Endean. We are grateful for his quick diagnosis as a delay in a proper diagnosis can be even more detrimental to treatment or possible remission.

Dr. Jonathon Tait for his dedication to treating our son and his compassion and genuine care for Austin’s best health. This doctor is one of a kind and a blessing to anyone in his care. He believes in looking at alternative treatments for rare conditions and overall health.

Dr. Michael Cooney for his knowledge of CRPS and expertise in Calmare and helping patients worldwide.

Dr. Ryan Wade for his knowledge of CRPS and Calmare treatments.

Dr. Carol Henricks for her Hyperbaric Oxygen Therapy Treatments and understanding of CRPS.

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