Category: Guest Blogger for RSDSA

Written by Phyliss Shanken, MA

I wrote an article about my personal experience with CRPS that appeared in ADVANCE for Physical Therapists and for Occupational Therapists in 1993. In response to that article, I received phone calls from CRPS sufferers who wanted to talk, who felt isolated and confused about this disease.

I have spent hours on the phone listening, supporting, and giving guidance on ways to deal with CRPS. As a result, I have been sharing my ideas on how to cope with chronic and acute physical and emotional pain.

If those who responded to my last article are representative of CRPS sufferers in general, then we can assume that you had symptoms of CRPS well before you were diagnosed. You probably saw an orthopedic surgeon, a family doctor, a rheumatologist, or a neurologist, and not necessarily in that order. And at first when you eventually learned of the diagnosis, you were probably relieved because finally there was a name for your suffering. Then you assumed that the crazy feeling you had begun to experience, as well as the doubting looks you had been getting from loved ones, could finally be put aside.

You felt dependent on people who didn’t seem to know all that much. You craved information, and hung onto your doctor’s, physical or occupational therapist’s, every word. Yet you didn’t want to hear what you feared was the truth. Maybe you finally found an CRPS specialist who told you to learn to live with it. Somehow, you had not developed the skills you needed to “live with it.” You were overwhelmed. You felt immobilized because this problem erupted without warning: You are innocently living your life and then, Boom! Out of control.

This is the first phase of the predictable life stages that occur with any crisis or change, according to Roger Gould, MD, who wrote Transformations [New York: Simon & Schuster, 1979]. He calls this phase immobilization: Internally, you were stamping your feet, saying, “I don’t want to have to handle this. It’s not fair.”

The next stage is minimization: “Now I have a name for it, so I’ll be okay.” We need this stage so that we can build a “cocoon” around us to help us build up our resources for the long road ahead.

As you moved out of the denial phase, you may have experienced depression, which is based on the reality that you have no way out of this, and coping with it is just asking too much. You feel “down” and unable to move on.

Then you shifted into the frustration phase, acknowledging that you have CRPS and don’t have the ability to change it. There’s an old Chinese proverb: “When you have a disease, do not try to cure it. Find your center and allow for healing.” Or, as Bill Moyers says, “Healing is possible even when cure is not.” When you face the emotional pain of being told you have CRPS and the physical pain of this disease that makes you feel so out of control, try to allow for healing without trying too hard to control that which is uncontrollable.

When you get into the center of pain, when you relax and allow the sensations to take you over, it doesn’t hurt so much. Pain is actually resistance. Bracing yourself merely magnifies the pain. Therefore, try to investigate the pain rather than attempting to eliminate it. Is the pain sharp or dull? Cold or hot? Suppose you could draw the pain? What colors would you use?

Flow with your feelings. Here are some guidelines:

Position yourself to embrace the disease. Even though it may not be true, assume that you will have CRPS for the rest of your life. This resignation may work to prevent you from having to fight so hard against the realities of physical and emotional pain. When you let go and stop fighting, often pain subsides, and CRPS feeds on pain. Isn’t it ironic? It is by assuming that you won’t get better, that you have the best chance to get better. Work through all the aspects of CRPS so that you redefine yourself. “I am a person who lives with certain kinds of sensations, whereas other people don’t have them. I’ll have good days and bad days, but I’ll handle it. I will try to make myself as comfortable as possible and seek out ingenious ways to survive. I will be proud of these creative solutions to a heretofore uncontrollable situation as I define and take charge of the areas where I do have control.”

Some of the solutions might be ways to use pillows to prop your affected limbs, ways to use the TENS unit so it’s not too conspicuous, wearing gloves or using heating pads- whatever works.

Give up what you can’t control. The diagnosis is here, the swelling is visible and not matter how hard you stare at it, and it won’t go away, so perhaps you ought to stop focusing on it. In fact, your morbid fascination with how your affected area looks might cause more trouble.

As much as possible, forget you have this disease in the sense that you need to make your response to CRPS a way of life. Try not to think of yourself as an invalid. Share with people who love you so that you can be nurtured, but try not to milk it too much.

When I say try not to focus on the pain and forget you have this disease, I recognize the contradiction. This means accepting the reality of your disease, then working on letting go of all the resistance, protest and hysteria that impedes your ability to submit to, yet take charge of this crisis in your life. You can’t let go of the feelings until you allow yourself to feel them. Much of what I have said fits into the final stages of Dr. Gould’s sequences of change. Eventually, you get to acceptance of reality. You can now say, “I have CRPS.” Then you ask, “Now, how am I going to live with this disease?”

This is the testing phase. “I wonder what it will be like now that I have to use a cane to walk?”

The next phase is searching for meaning. “Now that I have accepted that I have CRPS and I’m learning ways to deal with it I want to see how to make sense out of why this happened to me and how it will affect my view of myself. Maybe I’ll write a book about it to help other people. Maybe I’ll start a support group. Other people have handled this; I guess I can, too. I will have a unique way of handling it.”

The last phase is internalization, when you incorporate the change into your behavior and your perception of the world, the point where you have worked through the conflict. You no longer have to concentrate, test, question or marvel over your condition. Instead of feeling defective because of CRPS, you can now say, “I need special aids to make myself comfortable. I am unique in that way.”

Please consider psychotherapy–it can help in terms of adjusting to the stress of this disease, learning why you might have resistance to coping with pain, and other problems that may erupt in your life as a result of the isolation and rejection by others.

You may have had some problems before the CRPS that are now coming to the fore. Your personality may be the type that inhibits healing. Perhaps you haven’t been tested like this before. Your coping mechanisms aren’t working the way they used to. Look for other areas in your life where you have difficulty giving up control.

It’s okay to be angry, but then you need to move on and take joy in the way you’ve adjusted to the situation. If you remain stuck in the angry, frustrated, self-pity place, then you should consider psychotherapy.

In general, those who can accept the fact that all is not lost if things don’t go their way are most likely to reach the internalization stage. By understanding the process you go through when faced with any crisis, you can say, “I’m depressed right now. This is where I need to be at the moment so I can work through all the feelings I am to experience and eventually I can go back to living a normal life.” The more you allow yourself to flow with the inevitable emotions involved in change, the more your self-assurance emerges and the greater your ability to confront unavoidable stresses of life, including CRPS.

Phyliss Shanken is a licensed psychologist in Pennsylvania and Director of Psychological Services of INTROSPECT in Montgomery County in Colmar, Pennsylvania, a psychological/psychiatric practice facility. She also maintains a private psychotherapy practice. For more information about Phyliss Shanken, click here.

By Guest Blogger Jennifer Ginsburg

Jennifer has been living with CRPS for 24 years. In her 24 years with Complex Regional Pain Syndrome, she has learned a lot about herself and about the nature of CRPS. How can her experience help you? She created 24 tips to help you!

As I just entered my 24th year with Complex Regional Pain Syndrome, I’ve realized I lived with this disease for well over half of my life.

I’ve had the “benefit” of being a child with CRPS and just wanting to move on in life. I’ve suffered the “disadvantages” too and had to end my career in my mid-thirties.

My CRPS gave me 8 glorious years of remission. It’s also taught me it doesn’t always stand alone, and I’ve had to learn a lot about Autonomic Dysfunction (or Dysautonomia) rather quickly.

I figured in honor of my 24th year, I’d put together 24 tips, tricks or lessons that could help someone else.

They are as follows:

• As early as you can, desensitize yourself. It hurts in a way I can’t describe but once you make it through, you get some freedom back for the rest of your life.
• If you spread or think your spreading, treat it like a brand-new injury.
• Don’t be scared of spreading. It’s going to happen or it’s not. Your nervous energy is only going to make it happen or have it happen quicker or more advanced.
• I feel our job during a spread is to Accept it, make your necessary Adjustments/Accommodations and Advance forward.
• Start a Gratitude Journal. Write down five things you are grateful for each night.
• A good doctor is there to work with you. If you’re unhappy or don’t agree with your treatment plan, find another. It is one of your most critical relationships so make sure it’s solid and respectful from both sides.
• Be smart. Personally, I know I’m not with a doctor that has my best interests at hand if they’re wanting to implement multiple spinal cord stimulators. I’m also not with a doctor that’s good for me if they want me over medicated.
• Have someone to talk to. I think it’s helpful to have a professional that knows about chronic pain but you know what works best for you.
• Don’t be afraid of anything that can assist you. Get a handicap placard if it means you’ll go out more and participate in civilization now that you don’t have to walk so far.
• Call the RSDSA and ask for the “I have CRPS” wallet cards. Work on spreading awareness. I had some in my wallet and in my car for years. They’ve been extremely helpful.
• Always keep the “Emergency Guidelines for the CRPS Patient” and the “Hospital Guidelines for the CRPS Patient” printed out and stored safely home. They can be found on the RSDSA’s website under publications.
• Be upfront. You don’t need to fear the Emergency Room. I always go with the documents above, my medical records, pictures of my CRPS and let the attending doctor look online at my prescriptions through my pharmacy. I also don’t go there for pain management. That’s why I see my pain doctor monthly.
• Read “Systemic Complications of Complex Regional Pain Syndrome” by Robert J. Schwartzman, M.D. published in 2012. Become familiar with other issues that could come along with CRPS.
• If you’re on Facebook, the RSDSA is listed under “Support A Nonprofit.” Add them to your post and help them in raising money and awareness.
• I know I’m an odd patient, but I try to live as normal as I can. I get an IV twice a week and my blood pressure taken at least 4 times a week. To me, these are things that need to be done to keep me alive. Mindset is huge with me and my CRPS.
• With that said, I believe that I’m going to be in pain anyway, I might as well do something.
• On the flip side, I’d rather have pain from doing something than from doing nothing at all. In a strange sense, I feel like I earned it so it’s easier to fight.
• For me, distraction is key. It can bring my pain down. My animals can do the same.
• Being online in high Pain moments isn’t healthy for me. It’s putting too much into my pain when I’m in support groups and it’s also putting too much into other people’s pain. You should evaluate your pain levels if you’re spending a lot of times in groups.
• I know when I get grumpy it’s either time for medication, rest or something to get my pain level back on the scales. It’s not my personality and I know when I see that version of me, I’ve gone too far.
• Our loved ones have a grieving process to go through as well.
• You should look for and read “The Spoon Theory”.
• You’re never alone. You should know that 1 (800) 273-8255 is the number for the National Suicide Prevention Hotline.
• I’m always around if you would like to add me to Facebook.

None of asked to be thrown into this crazy world. We all learn little “helpers” along the way. I hope some of mine resonated with you. I know I’m going to be in pain regardless, I at least try my best not to be miserable. It’s a conscience decision that I make day after day. Twenty-Four years later, I’m still at it.

By Guest Blogger Jamynne Bowles

Jamynne discusses a potential co-morbid condition of CRPS- Dysautonomia. How does this impact her life? How did the treatment of CRPS impact this condition? What does she do to make the most of each good moment? Find out what happens when treatment provides hope for a better day, but makes some of your days more complicated.

Yesterday, I was feeling brave. I was feeling invincible. I was feeling like I “could.” And so, I did.  I grabbed the car key, put it in the ignition, put it in “drive,” and went. I just went. I think I drove a good 20 miles. Admittedly, it was tough at times to see the road through my tears, but I did it. I wasn’t alone. I had My Person sitting beside me acting as my co-pilot. But I did it all the same. On my own. Not a big deal, right? Wrong. Here’s why.

For the better part of 2 years, I haven’t been able to drive at all.  And for a year before that, it was limited to sunny days and clear weather. CRPS and Autonomic Dysfunction had robbed me of my ability to see well enough to drive. It’s also taken my ability to read fine print, menus in a restaurant, and even the medium-sized font on this laptop. Over the last few years I’ve consistently had to make the font bigger and bigger, just so I can see it. In restaurants, it’s not unusual to have to ask for help figuring out what I want. Not because I can’t make a decision, but because I can’t read what’s on the menu. I’ve been relegated to the house unless My Person is home for the majority of the past two years. Most days that meant sitting on the couch and listening to the TV. It’s a large screen so I can see most of it, but looking through my eyes and trying to see what I see is often like putting 20 window screens together and trying to look through them clearly.  It’s shady, the colors are dull, and there’s absolutely no clarity in the details.  When I’m having particularly rough days, I can lose my sight all together. Everything goes black. That can last anywhere from 10-15 minutes to several hours. Imagine being home alone when that happens (that’s an estimate because I can’t see my watch, nor can I time it). Then, without rhyme or reason, it’ll improve, though never to the point where I’ve been able to feel comfortable getting behind the wheel of a vehicle. It’s terrifying. That is, until yesterday.

Autonomic dysfunction or dysautonomia is a condition in which the autonomic nervous system does not work properly. It can affect the stomach, bowels, bladder, pupils, sweat glands, cardiac function, and blood vessels. It can cause you to pass out without warning. It affects your ability to regulate your body temperature. It makes you intolerant to weather change. Gastroparesis leads to severe bloating after meals, as well as the ability to keep what you’ve eaten… down or in. It affects the bladder in terms of having the constant urge to “go” even if there’s nothing in there to pass. Your resting heart rate can be fast. My heart rate has been known to get up into the 130’s without exertion, which can be very uncomfortable at times.  Lastly, it can negatively affect your vision- sometimes robbing you of it completely. I live with this every day. It’s a tough disease and it’s very difficult to manage. And like CRPS, there is no cure. The prognosis is difficult to predict as it depends on several different factors within the central nervous system; where it’s progressing, how it’s progressing, what organ systems it’s affecting, etc. Because of so many “unknowns,” autonomic dysfunction can be fatal due to either acute respiratory failure, pneumonia, or sudden cardiac arrest. When I tell people that I feel like each moment is a gift, it is no exaggeration. Treatment is difficult and like CRPS, it’s often like trying to find a needle in a haystack. Because it’s made up of so many different symptoms, the goal is to find various drug therapies to manage them. What I’ve been battling is considered “severe” by my doctors and I’ve recently begun my second round of IVIG plasma infusions in the hope that it can make a difference in my symptoms. This came about, we believe, from the inconsistency of care that I received for my CRPS.  Because I am a worker’s compensation case there was no care rendered, at all, at the beginning of my diagnosis. The CRPS ultimately proved to be systemic and along came the autonomic dysfunction. I received my first IVIG treatment back in 2016 for 5 consecutive days a month. For 9 months. My neurologist hoped that the first thing it would help was my vision. Sadly, that wasn’t the case. While it helped with some of my symptoms, it didn’t ever touch the vision. Two years later, I’ve had one round of 5 consecutive days and while it took tons out of me, the side effects are horrible.I really struggled with even wanting to continue. 3 weeks after the first round this time, I’m driving. I’ve got two more months of 5 day treatments before going back for my reevaluation in July and I know each month is going to be rougher than the last. But I have hope and while it’s not a guarantee of anything, I’ll take it. For now.

Chronic illness, CRPS, autonomic dysfunction, and everything these diseases entail is extraordinarily isolating on its own. If pain levels are high, you don’t go out. If you’ve used up all your spoons for the day (love that Spoon Theory), you know you’re on the couch possibly for the next 2-3 days. You can’t go out with friends.  You can’t meet them for Happy Hour. And in my case, even if I was feeling up to it, I couldn’t go because I couldn’t see well enough to drive. Uber had become my best friend at times, but it’s not the same.  And honestly, if your friends aren’t coming to see you, if they just don’t understand your disease and they don’t see the need to come sit on your couch with you, you’re completely on your own. I’ve always been social.  I’ve always had people to hang out with. Always. Until I got sick. We forget that even when our lives stop, theirs doesn’t. They go on without you and most times, I don’t think they know how hurtful that can be to someone who has been relegated to looking at life through their own rearview mirror. It’s tough stuff. But yesterday, I drove. And I’ve got to say, they were the best 20 miles of my life.

I don’t know how long this period of “clarity” will last. I could wake up tomorrow and be right back where I was last week. But you know what? That’s okay. For this moment in time, I have the choice whether or not to drive my own vehicle. And that’s HUGE.  Before I got sick, I was a 12-handicap golfer. I rode a beautiful Harley. I was a proud paramedic who loved every part of her job. I played softball. I was active in my life and in the lives of others. I traveled. A lot. I lived for experiences. I loved the journey regardless of destination.  My life was full. It was almost complete. That was then. CRPS and autonomic dysfunction has taken a lot from me, but yesterday, with the love, support, and encouragement from My Person, I took a small piece of that back. As we pulled into our driveway she looked at me, smiled, and asked: “So, how did it feel?” I thought about it for a moment, and then I thought some more. I’ll tell you what I told her. Driving is like riding a bike. You never forget how to do it. On the other hand, I feel like a teenager who has just gotten her license. It is a feeling of independence and excitement that I hadn’t felt in a very long time. I don’t know how long this will last. It could all change tomorrow. But if it does, I know I’ve got an amazing co-pilot who will take over if needed. And until then, I’m going to celebrate the hell out of this. One mile at a time. The only rearview mirror I’ll be looking in, is the one attached to my windshield.

I start my second round of IVIG in a few days. I know it will most likely bring me to my knees. But I’m going to keep doing this for as long as I can. The payoff? The set of keys hanging by the front door. They’re a ticket to an independence and a freedom that never meant more to me than right now this very minute.

They say it’s always darkest before the light. No truer words have ever been spoken.

By Guest Blogger Lorna Fortner

This blog comes at the perfect time, as RSDSA has been asking the community for different treatments or things that they do to minimize their pain or reach remission. Lorna took the time to write about the various methods of treatments that she has tried and why the “opioid crisis” is a problem for those with chronic pain.

Hi, y’all!

I’ve been seeing some conversations regarding “What now?” Okay. Got a diagnosis, but what is the best way to treat it?  All of us individually made-we’re as differently as our fingerprints.  Some people may respond best to physical therapy, some to epidurals, sympathetic nerve blocks, some may do better with medications, or a combination of the different modalities.

I started out with a combination of physical therapy, blocks, and medications. Speaking for myself, I really didn’t care too much for the blocks. I just didn’t feel like having those needles stuck in me every couple of weeks.

Another issue is how does the change in weather affect your pain? I know for a fact that my body predicted a change better than the meteorologists. So, I designed my own test-parameters: pain level in various body parts, barometric pressure, temperature outside, humidity. Twice a day, I logged those numbers on a steno pad. This went on for two years. I could, with certainty, predict a weather front was coming in 2 days prior to the barometric pressure drop.

Medications

1. Gabapentin & Amitriptyline-worked well, but messed up my esophagus. Went through diagnostic testing for all that, barium swallow, esophagoscopy.  So, my medication had to change.
2. Blocks- cycles of 3 sets of epidurals every 2 weeks. Then, the evaluation and repeat. I experienced no improvement after the block wore off. Sympathetic nerve block did work to make the diagnosis, but once it wore off, there was no pain relief.

Then, I went back to more physical therapy, extensive desensitization exercises, back exercises, balance, you name it.

Finally, I went to Soma, which back then was used as muscle relaxants, and an opioid.  It was an acceptable balance for me, I was careful to never overuse, misuse, or abuse. I used pill organizers. Yes, it was a hassle, but you have figure out what is going to work best for you without your physician/caregiver.

Unfortunately, there’s a big fuss about the opioids. I’m 66 years old and can no longer be “trusted, reliable” to take my medications that I had the month before I turned 66.  That, in my estimation, is so totally wrong, that the government can make that call and ruin patient physician relationships. It’s comparable to the attorney-client privilege. But, with the opioid crisis, FDC, CDC, Medicare, and the big 5 Pharmas, the patient loses out.  People tell me to try cannabis. I live in a state that has legalized it for medical usage.  However, it is extremely costly! The patient must buy a license from the state, get a special card from the dispensary, then pay the “doctor” for the prescription. Then, there is the cost of the product-none of which are covered by my insurance.  So, yes I’m angry about this, because when I was using a controlled substance in a controlled manner, I was able to go about my life, reliably.

Thanks for listening. What’s bugging you about CRPS, RSD, chronic pain and treatments?

I’ll be here.

Lorna

By Guest Blogger Caroline Bert

We were lucky enough to meet Caroline at our Achilles Walk and then at our Long Island walk. As a young adult with CRPS/RSD, Caroline did not want to just be the “sick” girl, she wanted to be known for her dreams and talent. See how she did that here.

My name is Caroline Bert and I am 23 years old. I was diagnosed with RSD when I was 12. It started with an injury on my left wrist and then spread over time.

In school I was known for being the girl that “always has a broken arm.” I was the girl who felt right at home when I was with my pain management team, but I felt like an outcast in my classrooms.

My doctors say I’m a “professional patient” as I go from specialist to specialist. I know all my nurses by name. I am terribly familiar with the routine of an RSD fighter. RSD effects everything I do. Even on my best days, it always makes its presence known.

RSD took me away from my first college because I was too far away from my doctors and pain team. I needed to be closer to home in order to get treatments when I needed to.

When I transferred to Long Island University CW Post, I did not want to be known as the girl that’s sick. I wanted to be a photographer.

In the final semester of my BFA I had the opportunity to take a class on experimental photography techniques. I always look forward to learning from my Professor Allison Rufrano. When I am in her class, I feel like a normal student. I feel like I belong there and like there’s nothing limiting me.

One of the assignments she gave was to make a self-portrait collage using objects to show who I am. This assignment was to be done using a scanner following a camera-less Photography lesson.

I knew this was a good time to raise awareness about what I, and many of us go through.

Most of my classmates at LIU did not know that I’ve been fighting this battle for so long. They saw me as an artist first, they took me in as part of their community. I was able to start a photo club on campus and this became like a second family. They didn’t even know that they’ve been helping me by treating me like everyone else.

My scanography was composed of my medicine, my braces, text messages from my friends, letters from my parents, metals from the walks, and symbols of hope that get me through my flare ups. Even when I am in too much pain to reply, the words of my friends and family are the driving force behind my eternal optimism. When we walk with RSDSA each year my family and friends come together as “Team Caroline”. I used our orange shirts as a background for some of these images. I am so fortunate to have the strongest support system in the world.

Art is the best medicine and even in the midst of the chaos there is always hope.

These self-portraits educate those around me. By telling my classmates my story, in a way that is honest but still positive, they learned what RSD is. They don’t think I always have a “broken arm”. They know I am stronger than the obstacles I face.

Rather than worrying about what I go through, I am so unbelievably grateful for how I get through it. RSD has made me a fighter but I have made myself an artist. I am a photographer and I am part of a community that cares about me. When the people I love are not around me, they are always checking in.

by Gracie Bagosy-Young

This blog was originally posted on The National Pain Report. Click here to see it there. Gracie discusses how CRPS helped her learn a lesson about herself. This involved finding the fruits of life every day.

I was diagnosed with Complex Regional Pain Syndrome many years ago. Sometimes I forget how long it has been. Of course, no one explained what those 4 letters meant to me, they simply wrote them on a piece of paper and told me to google them. I left there irritated and confused. After some research, I landed on words like “incurable” and “lifelong” and those feelings soon turned to anger. That anger ate me up! It was rotting me from the inside out, and I was not going to recover in that state. It was not healthy at all.

I have grown a lot since then. I have reached out and met hundreds of thousands of amazing souls struggling with these same 4 letters, along with other chronic pain issues. Chronic pain has a way of slowing you down and forcing you to think.

The biggest lesson that I have learned is to find the fruits of life-the beauty in everyday living that I was too busy to see before.

Patience: I had none! Who had time for that? I was not patient with myself or anyone else. I was constantly busy. My body simply does not allow that any longer. I don’t mind when someone cuts in front of me in traffic-maybe they are headed to the hospital. While I was obsessively early prior to this diagnosis, I am ok with arriving just in time if it takes me a little longer to get ready. I used to hate broken plans. Now I understand that is not always a sign of disrespect, many times people are facing battles that we cannot see.

Pride: I was proud to a fault. Having been raised by a single father, he taught me that vulnerability was a weakness and I should always be strong. It was EXTREMELY difficult, but I have learned that the only way to be authentic is to share your vulnerabilities. It is best to allow others to help you, because that is how they show you that they love you. It is also ok to ask for help when you need it!

Silence: I never had an appreciation of silence. Even if I were messing around the house, I always had the TV or music on in the background. I also had kids. Now I crave silence. My nerves are doing crazy things on the inside of my body and I cannot control them. I feel the need to appreciate the silence and stillness that I can control on the outside.

Love: Learn to love yourself. Stop hating your body, it is the only one you get! Take care of it, feed it well. My Pastor said, “Look around at your friends and you will see your future.” If you are surrounded by toxic people, MAKE THAT CHANGE! I did. Love yourself and the right people will find you.

Nature: OK, maybe this is just my age speaking here, but sunsets have never been so beautiful, flowers have never smelled so sweet, and the sound of the ocean has never been so alluring! I love getting lost in the woods. Nature is healing. Unplug. Relax. It’s worth it.

Find the fruits in life or allow yourself to rot inside with bitterness. The choice is yours.

Gracie Bagosy-Young | www.GGPainAdvocacy.com | Twitter @GracieBagosy

By Guest Blogger Deborah R. Brandt, PT, DPT, CMA

Twice, I have had post-traumatic stress disorder (PTSD) and chronic [complex] regional pain syndrome (CRPS) occur simultaneously.  In case other people may have PTSD associated with their CRPS, here are some insights and information I have gained from my healing process I would like to share with you.

MY STORY

I discover myself running on an unfamiliar path in Central Park and watch my 6 month-old Golden Retriever, Lily, ears floating out like wings, enjoying running with me. Why am I running nowhere in Central Park on this beautiful fall day?

Slowly, I remember. I was playing with Lily in an area with other dogs and their owners when a tennis ball thrown for a dog hit me in the temple. I didn’t see it coming and was stunned. A woman approached me from a distance apologizing profusely. Screaming, I put my hands out to push her away, “Don’t come near me, don’t touch me, how could you do such a thing?” Then I discovered myself running.  I still have no memory of what happened between my screaming and my running on the path with Lily. My disembodied escape was not from the apologizing woman; I ran from my violent father whose danger my mother did not acknowledge. The shocking, unanticipated impact of the tennis ball had awakened my PTSD.

Again, with the dogs a few weeks later while still experiencing PTSD, I blanked out and discovered myself lying on my side and face down with my foot planted in the mud, my ankle folded in half. I heard someone screaming and discovered that the voice belonged to me. Another woman approached me from a distance and apologized that her dog knocked me down.

In the emergency room, I was told I was fine. The next day, an orthopedist told me I had fractured my cuboid, (I had also fractured my second metatarsal) and then I slept for three days.  When I awoke my pain did not feel like my previous fractures; it wasn’t local. I felt like I couldn’t move and had to give myself instructions on how to get out of bed.

I felt irritable, brain fogged, unable to make decisions, and uneasy about myself, but I didn’t know why.  When these puzzling sensations combined with the misinformation I received from the medical professionals I saw, I became increasingly confused.

After four months, a podiatrist finally suggested I see a pain doctor. I had removed my attention from the leg that was causing me pain, so I asked him why.  He told me that something in the MRI might indicate I had CRPS.

With the help of the pain doctor, podiatrist, behavior therapist, and osteopath, my CRPS went into remission for 5 years. Because at the time I couldn’t tolerate physical therapy (PT) I incompletely rehabilitated myself.  The behavior therapist helped me re-inhabit my real leg using HeartMath.

In 2017, while experiencing another episode of PTSD, I tripped and bruised my left knee. It recovered quickly. But, as though my body and brain remembered the previous foot injury from which I had never been completely rehabilitated, my CRPS returned along with an aggravation of the original foot injury. This time I was able to tolerate PT and I pursued EMDR (eye movement desensitization and reprocessing) for my PTSD.

EXPERIENCE OF DANGER AND THE AUTONOMIC NERVOUS SYSTEM

With both CRPS and PTSD, the autonomic nervous system (ANS) is over-stimulated.  Our ANS connects our central nervous system (CNS) (brain and spinal cord), to our organ, respiratory, and cardiac systems. It is not under conscious control; however activities like meditation can have an effect on it. Its two components, the sympathetic nervous system (SNS), and the parasympathetic nervous system (PNS) keep our life-sustaining body systems in balance (homeostasis).

When we experience danger, the SNS triggers increased heart and respiratory rates, raises blood pressure and prepares us for fight or flight. The PNS responds when we have no hope for escape and we freeze. Also, when we experience that the danger has passed, the PNS reduces heart and respiratory rates and establishes a state of restorative balance to our systems.

The ANS is designed to be resilient in response to external stimuli. But danger that continues over time can cause the SNS to remain in hyper-arousal which can cause CRPS, PTSD, and many other serious health problems.

Emotional pain and physical pain are processed similarly.[i] My CRPS and PTSD manifest on a continuum similar to my blood pressure which can go up when I feel stressed, but can also go down when I hold my dog, Lily. The nature of life is change, so the more appropriately my ANS ebbs and flows in relation to my environment, the more coincident with real-world reality my symptoms are.

A defining factor of CRPS is pain greater than what we would expect. This is a result of our brain experiencing that we are in physical danger. A central component of PTSD is fear out of proportion to the present danger. For both, the exaggerated experience of danger may or may not be relevant to the triggering event.

TREATMENT

Common treatment modalities for CRPS include medication, biofeedback, spinal cord or dorsal root ganglion stimulation, and physical therapy. Useful for treating PTSD are medication, EMDR, hypnosis, and cognitive – behavior therapies.

In his book, The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma, Bessel van der Kolk writes about how people recover from trauma and PTSD.  He explains that traumatic memories are stored in the limbic (emotional) system of our brains, separate from non-traumatic memories and away from the language center of our brain. Therefore, he writes, talk therapies, while they can be very helpful, often can’t reach the non-verbal, lived experience of PTSD. However, he says, the experience may be accessed through metaphor and imagery in one of the many ways that allow us to externalize internal feelings non-verbally.

Journaling and the creative arts therapies are some of the ways this could be done. Cognitive processes can be employed to facilitate understanding and integration once the feelings are expressed. Chronic pain is processed similarly and is also a wordless experience.

CRPS and PTSD are both psychophysical states in which the SNS remains inappropriately hyper-aroused.  Fortunately, diminishing your feeling of danger and increasing your feeling of safety can be approached in many ways. Techniques to help you access your embodied self and balance your ANS are best explored with the mediation of a helping professional.

There are active modes for affecting the ANS: Yoga, and other movement meditation disciplines; receptive modes – massage and manual therapies; and participatory modes – body and movement therapies many of which employ active and receptive components.  Breathing exercises included in many of these activities usually emphasize the out-breath because that phase activates the restorative PNS.

PT treatment employs the three – pronged biopsychosocial approach for treating chronic pain:

1) Education, that pain is processed in the brain not in the body tissues that hurt, and addressing the patient’s beliefs about pain.

2) Graded sensory experiences, designed to desensitize the patient to the felt pain. The senses involved are primarily vision, touch, proprioception (sense of body position in space).

3) Graded motor imagery, leading to active movement. It starts with the patient visualizing movements that are too painful to produce. Merely visualizing movement may cause some people pain.  It includes practicing left right discrimination, and sometimes the use of a mirror box. As movement becomes tolerable, visual imagery is embodied through body movement in space, stimulating kinesthesia (sense of movement). [ii] [iii]    If the CRPS was triggered by an injury that is still acute, the injury and the CRPS would be treated simultaneously.

HEALING PROCESS SUMMARY

Goal: a better balanced ANS to decrease pain and maximize function.

We experience a reality that is outside of our own through the mediation of other persons whose reality we trust. Establish your treatment team: doctor to help you control your pain; movement professional to guide you safely into active movement and if necessary treat acute pain; therapist who can help you process and integrate your feelings.

For CRPS:

• Differentiate your pain, after an injury, acute and chronic pain may occur simultaneously. Treatment must address both.

• Address your fears and thoughts about your pain and your movement. By decreasing your fear, you may be able to decrease your pain and maximize your functional movement.
• Move your breath and body appropriately so that muscle tension is decreased and blood flow is increased, cleansing and healing your body.

For PTSD:

• Find a therapist who can help you access, express and integrate your wordless memory of trauma through EMDR; hypnosis; techniques using symbolic representation of feelings, such as journaling, creative arts therapists.

For both:

• Learn stress reduction techniques to decrease the hyper-arousal of the SNS and increase the PNS restorative function.

• Identify and implement a healthy lifestyle that addresses positive nutrition, exercise, sleep, and cognitive and interpersonal experiences.
• Process your thoughts and feelings with helping professionals to consolidate a re-integration of your healthier self.

It is not necessary or even desirable, to do everything at once. Try any suggestion that you expect will be most helpful to you at the moment. PTSD and CRPS don’t always go together, but if they do for you I hope this will give you more tools for dealing with your pain.  If for you they don’t go together, I hope perhaps some of these ideas may still be helpful.

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[i] Eisenberger NI. The neural bases of social pain: Evidence for shared representations with physical pain. Published online 2012 Jan 27. Accessed 11/12/17.

www.ncbi.nlm.nih.gov/pmc/articles/PMC3273616

[ii] Physical Therapist’s Guide to Chronic Regional Pain Syndrome: http://www.moveforwardpt.com/SymptomsConditionsDetail.aspx?cid=31c5d12d-2fd4-4723-949d-ad741d4c71d7

Physical Therapist’s Guide to Chronic Pain Syndromes: http://www.moveforwardpt.com/SymptomsConditionsDetail.aspx?cid=dd79c11d-9ac3-42cc-bcc2-2edd5079a57a

Physical Therapist’s Guide to Pain

http://www.moveforwardpt.com/symptomsconditionsdetail.aspx?cid=e6dabed7-c6d5-4362-8260-9ce807427619

[iii] Butler DS, Moseley GL. Explain Pain. 2^nd ed. Adelaide, South Australia: Noigroup Publications; 2013.

Deborah R. Brandt, PT, DPT, CMA is a retired Doctor of Physical Therapy, Certified Movement Analyst, and dancer who has lived with both CRPS and PTSD.  She has studied pain and embodied expression of feelings throughout her professional life.  To contact her, email [email protected] and put CRPS in the subject line.

By Lorna Fortner

Lorna is a member of the CRPS. As a new blogger, she wanted to introduce herself and tell her story before she continues on her blogging journey. We bet that many of you will be able to relate to Lorna. Make sure to give her a warm welcome.

Hi, y’all, I’m Lorna Fortner.   I have CRPS2 since 1994, but it took about 7 years to get the diagnosis.

Since I new to blogging, maybe a little background would be nice for you to fill in some of the gaps.

I was born in Wisconsin in 1951.  Had asthma-first attack at 6 mos.  For the chronic sore throats, they once gave me penicillin, at age 3, I had an anaphylactic (life threatening) reaction. My tongue swelled up.  Never got that medicine again.   I was “sickly” as they said back then.  Some may have noticed the technical language-I’m an old ex-Operating Room nurse-although they say, being a nurse is like being in the mafia-once you’re in, you’re in for life.   But back to the issue We are all discussing here: RSD, CRPS1, CRPS2.

One thing I glean from the medical field & through the eyes & ears of my fellow sufferers, is this: Whenever the doctor says the diagnosis, & a bunch of letters, my first reaction, was, “huh?” It’s a foreign language.  I remember the day, the Dr. said, “you have CRPS, type 2,” my response and the nurse attending me at the moment, asked, “What is ‘CRPS type 2?”  “Oh, it is Complex Regional Pain Syndrome, type 2.”

I have the “cold” type mostly, but it can, without warning, start burning. My calf will cramp waking me up from a sound sleep.  For awhile I wanted to be a “Conehead” for those of you who remember “Conehead” movie, the skits on the “old SNL” shows.

The “experts” say it is caused by some injury and symptoms generally appear about 6 months after.  I hadn’t had an injury. HOWEVER, I did have back surgery.  While recuperating my husband I would go for walks around the block, but not even halfway through, my foot, toes started feeling like my sock was bunched up or something, on my right foot.  I’d have to sit down, straighten out, put my shoe back on, etc. Start walking again, and the SAME symptoms appeared.  Then I concluded it MUST be the shoes.  Bought New shoes.  Same result.

Back to the doctors, who sent me to neuropathic physiologist who did the tests, EMG (electromyelogram) and an NCS- Nerve Conduction Study.  There were distinct abnormalities between my right & left leg.  (Duh!- that’s what I’d been telling them!)

Stay tuned for more from Lorna! What do you want to see her write about?

Written by Melissa Wardlaw for the RSDSA blog

As a person living with CRPS, Melissa has had to manage a number of full body flares and pain for almost two decades. Because of this, Melissa was able to compile a list of tips that work for her to deal with pain flares. While these may not work for everyone, it may be a great starting point.

As a patient who has suffered from systemic CRPS/RSD (full-body) and multiple other chronic illnesses and pain for over 15 years now, one unfortunate factor I can rely on in my medical journey is knowing I will experience flares; aka, an increase or exacerbation of pain & symptoms. Flares can be mild or severe, short or long, and can occur because of many reasons, including the following:

• Weather changes
• Activities
• Overdoing it
• Not enough rest/recuperation (poor preparation & lack of pacing)
• Excessive stress/extreme emotions
• No reason at all as we know chronic illnesses and pain have a mind of their own

On a recent birthday trip with my mother to a nearby hotel resort and casino, I experienced a very severe flare. I was prepared for this to happen, as flares often occur when I’m traveling or out of my comfort zone. This particular flare was likely caused by a lack of rest and excessive activity, but it came on very quickly and hit me like a ton of bricks.

The main area that happened to be flaring most severely at the time was my right leg, where I not only have CRPS/RSD, but also sciatica and fibromyalgia. The intensity of my pain, muscle spasms, restlessness and other central nervous system-related symptoms instantly made me want to jump off a bridge! For those of you who have CRPS/RSD, which is rated the highest of all chronic pain syndromes on the McGill Pain Scale, I’m sure I don’t have to tell you just how bad it hurts all the time, and especially during a flare.

Because of how intense this flare was, I was in tears. My mom, who is also my rock, best friend and fiercest advocate, was there with me. Needless to say, she has witnessed multiple flares and has seen me at my worst (and my best)! I was thankful she was there for me during this time. So what strategies did I use to handle my flare?

1) REST/MEDITATION/DEEP BREATHING
This method is tried and true, and it works! The first thing I did was to go to the room, turn off the lights and lie down in bed to rest. I had been overdoing it thus far on the trip and hadn’t taken a much-needed break. I believe this is one of the many reasons that contributed to my flare. I started breathing deeply, focusing on calming down my nervous system. You see, when our pain and symptoms are flaring that intensely, it causes our heart rate to increase, and the fight or flight response (which is always activated with CRPS anyways) to kick in even further. The stress mechanism is triggered, flooding the body with cortisol and other hormones that make our pain and symptoms even worse. So the best thing to do is to counteract this response by calming down our emotions and nervous system, using deep breathing and meditation tactics. There are multiple guided meditation videos, short and long, that are geared specifically towards chronic pain. By doing a quick search using keywords such as “Meditation for Chronic Pain” on YouTube, you’ll find hundreds of videos to meet your specific needs. Example videos include:

• Six Minute Meditation
• Heal Your Body
• Meditation To Calm The Nervous System
• How To Relieve Stress

2) MASSAGE/STRETCHING
Thankfully my mom was able to help with massaging my leg (etc.) but one of the constant strategies I use especially when having a flare is self-massage. I’m constantly massaging various parts of my pain-ridden body as any other sensation than pain helps to offset the burning and seething as well as various other kinds of pain and symptoms coursing through my body. Massage also helps with stress management, relaxation and healing by reducing inflammation present in CRPS and other chronic pain issues. Stretching and shaking my legs (and other extremities) helps to not only bring circulation back into the areas but also increases energy lost to the ever-present fatigue chronic pain brings.

3) PAIN SPRAY

I would be lost without my pain spray! I have tried just about every pain cream, gel and spray on the market and the best I’ve found is a rare spray, only sold in a few places (most outside of the US), called Muscle Mist. Yes it is expensive, but it is all natural and not only does it help to temporarily distract from the intensity of the pain and symptoms, but it also reduces inflammation by restoring blood flow to the area. Additionally, it provides stress relief with the natural oils in the spray. Some people even think it smells good too, which I may debate, although I can attest to the fact it definitely smells better than 3/4 of the ones I’ve tried! You can buy Muscle Mist here (and no I don’t get anything if you purchase it LOL): https://www.aromasensations.com/musclemist.php

4) TENS UNIT

Similar to my pain spray, I don’t go anywhere without my TENS unit! I’m sure most of you are familiar with this technology, but if not, (TENS) Transcutaneous electrical nerve stimulation is a therapy that uses low-voltage electrical current for pain relief. The electricity from the electrodes stimulates the nerves in an affected area and sends signals to the brain that block or “scramble” normal pain signals. Another theory is that the electrical stimulation of the nerves may help the body to produce natural painkillers called endorphins, which may block the perception of pain. The unit is portable and comes with four electrode pads, which you can wear on any part of your body. Because I am allergic to the traditional electrodes, I have to get special blue gel ones for sensitive skin so I don’t break out in a rash. TENS units are FDA approved and very inexpensive to buy over the counter without a prescription. The one I use is the TENS 7000 which can be purchased from many places, including Amazon.

When I am having a flare, it is particularly helpful because I can put all my electrodes on the area that is most painful and it helps to reduce the intensity.

5) DISTRACTION
Focusing on a flare is hard not to do, especially when it is nearly impossible to think of anything else. But that is exactly what I have found is the worst thing to do! Pain is akin to a toddler having a tantrum and thrives off attention; the more attention you give it, the more it demands. So instead of crying, screaming, cussing or getting more anxious, all things that cause your body and nervous system more stimulation, the best thing to do is try and focus on something else, anything else. After resting and calming myself down for a bit, I decided to get up, pull myself together and go back down to the blackjack table! And guess what – by using the method of distraction and not giving the pain more power and attention, I was able to reduce it and power through my flare much more effectively.

In conclusion, whatever techniques are used to battle a flare, whether short or long, mild or severe, the key is to know we CAN get through it! After all, we have done it many times before and will do it many times again. And we are still here – still standing and fighting! We have come a long way in understanding our own bodies and pain/symptoms and will only continue to learn more and develop more effective coping mechanisms. We are stronger than our illnesses and that’s what makes us chronic illness and pain warriors!

Melissa Wardlaw was diagnosed with CRPS/RSD as a result of a spinal cord injury (non-paralyzing) suffered during a routine medical procedure. She also suffers from fibromyalgia, lumbar and cervical degenerative disc disease, migraines and additional chronic medical issues. Formerly a Business Executive/Consultant with an MBA in Entrepreneurship, she is also a Certified Career Coach and Certified Professional Resume Writer, and now spends her time career coaching and offering peer counseling/advocacy (pro bono) to those dealing with similar medical struggles. As a fierce advocate, she also runs both an in-person and online Support/Empowerment Group for CRPS/RSD and Chronic Illnesses/Pain in the Metro Atlanta area. Melissa is an avid volunteer and supports multiple organizations committed to rescuing animals and helping those with chronic illnesses/pain. She is a fur mom to two cats, who graciously “allow” her to live with them in their new house in Atlanta. She can be reached at [email protected].

By Guest Blogger Morgan Trevithick

Morgan experienced a CRPS diagnosis after doing something she loved. She was then surrounded by the darkness that CRPS can bring. What did it take for her to come out of the darkness? A flashlight. See what she means below.

Most people have passions, and even if they don’t admit it, there is always something that secretly brings them joy. This, for me, was running. I could have suffered the worst day of my life, but the second I heard my feet bounce on and off the pavement, all my stress dissipated. On July 8, 2015 I suffered an extreme running accident that lead to nearly every injury one person could possess. After about a year of complete immobilization and living my life unable to walk and in a boot and wheelchair, I was sent to a sports medicine doctor. I was immediately rushed into a bone scan and was diagnosed with CRPS Type 1. I can clearly remember how every cell felt in my body when looking into that doctor’s eyes being told I would never walk again. That day gasoline was thrown to the fire burning within me, and I was determined to prove him wrong. I have never been one to give up. I spent the next year in intense physical therapy working every afternoon after school to gain muscle, bone, and muscle-memory back. And if I had to choose one main lesson from that chapter in my life it would be: everything you have in life is a gift. It is a blessing to be able to move your toes, to walk, and to run. There are many people who would give up anything to have that, and I had to. I gave up my entire life as a typical teenager to fight for my life that I once lived to become my reality again.

Throughout these past two years of being pretty much bed- ridden at times, numerous colleagues, friends, and family have asked me questions along the lines of: “How are you?” “Where have you been?” Etc. There was something that all these people had in common besides empathy. This similarity was their struggle to understand. Now, to anyone out there who has a chronic illness, or have a loved one who does, you might relate. If not, stick with me. All these people, besides those who are honestly just nosy, genuinely wanted to know how I was doing. To most, you would think the answer is easy. When someone asks you if you are okay, you answer honestly. I obviously was not okay, but I never answered “No”. No, I was not okay. I was far from it. But, yes, I was going to be okay. Throughout these past two years living through this pitch black, never ending tunnel, I have taught myself how to use a flashlight and make my own light. When you are living with a chronic illness, you are completely blind to whether you will ever get better again. They diagnosed you with an illness with this miserable word “chronic” attached to it. And they didn’t just add that word for no reason. Chronic: a lifetime. You have that illness for your life. Or so they think.

So, throughout this journey I have erased that word from my illness and from my brain and found that flashlight. No, I didn’t just order a flashlight from Amazon and call it a day. It wasn’t that simple. I found that flashlight stored away in my heart and in my brain. I dug and dug through all that pain and worked for it. At one point, I found that flashlight, but it wouldn’t turn on. I needed batteries. I found these batteries in the hearts of others and their power to bring me positive energy. Throughout this long process of learning how to work that flashlight and put it to use in my life, I have learned that I may never feel comfortable being honest with those about how I feel. How do I really feel you may ask? Broken. Sick. Tired. Lost. That list could continue for years. But, when my flashlight is on, I feel blessed. That’s the only word that comes to my mind and that is okay. I just feel blessed. I feel thankful for the love and support I have been given. I feel thankful for the doctors and nurses who have spent so many nights working together to find the best solution for me to handle this pain. I feel thankful for myself. I feel thankful for those who hurt me and tore me down. And I feel thankful for those who patched me right back up. I feel thankful for this illness because it has taught me things that no one or nothing in this world could have taught me. It has taught me how to love others that aren’t loved. How to love someone that I don’t even know and give them my all. How to shower someone in support even when their problems seem trivial to me. How giving back and loving others takes my pain away, and how to make love in the silence. What is so amazing is that I have learned all of this from my illness. This illness is a part of who I am, and I am not going to shy away from that fact. I live every day fighting. Fighting to be well again, fighting for a minute where I can put my shoulders down and stop worrying. Fighting against this messed up body that I call mine. And I will be okay, and so will you.

Wake up every morning striving to make today great. Tomorrow will come in time, so focus on today. You were gifted another “today” for a reason. Don’t give up. You will always be stronger than you think you are.  Do not let anyone hold you back or tell you that your dreams are unreachable, your standards are just higher than their eyes can see. Love will get you through anything and everything, so love someone today. Make that someone yourself. Power on your flashlight and allow your eyes to focus on all the color in this world. You will get through this, because I will too.