My Life’s Journey With RSD

Written by Louise Plaster for the RSDSA blog.

February 17, 1992 started out like any other day. I got up and got ready for work, got my daughter ready for school and then drove my 30 mile trip to work. When I got there I prepared the machines that I operated for the day’s run. The assembly area where I worked was totally automatic and had robots. The assembly line was in a horseshoe shape and products, which were fuel pumps for cars, were sent through the line by a conveyor belt. My line came off of the main assembly line and produced the caps of the fuel pump. This particular morning I had some small parts that were sticking in the track and I had to go to the back of the machine to fix it. After a few times of this running around to the back of the machine I went underneath the conveyorbelt section that connected two of my sets of machines.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Training for Life

Written by Jane O’Laughlin for the RSDSA blog.

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

It wasn’t always this rosy.

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

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

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

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

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

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

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

Lessons learned

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

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

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

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

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

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

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

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

Support for People with CRPS

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.

24 Tips For People With CRPS

Jennifer writes about the tips she has learned to help with CRPS over 24 years 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.

When Treatment Offers Hope For Normalcy

Jamynne discusses what it is like when treatment offers hope for normalcy and how that impacts CRPS and dysautonomia 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.

Experimenting With Treatments/Modalities

Lorna discusses treatments/modalities that have and have not helped with her pain related to CRPS/RSDBy 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

From Professional Patient To Young Adult Photographer

Caroline, a young adult photographer with CRPS, took an image of her medications and texts and messages she has received during her time with CRPS 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.

Caroline, a young adult photographer with CRPS, takes a picture of diary entries, letters, and medications that help depict CRPS

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.

Caroline, a young adult photographer with CRPS, depicts her team shirt for the awareness walks she has participated in along with her medals

CRPS – Find The Fruit Or Rot Inside

Gracoe Bagosy-Young writes about finding the fruit or the rot as a result of being diagnosed with CRPS and how it can make you strongby 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

When Is Physical Pain Emotional Pain?

PTSD and CRPS can be correlated, causing physical and emotional pain. Read what Deborah has learned about the relationship between the two and how she addresses them bothBy 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.

————————————————–

[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. 2nd 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.

A Conversation With Our Newest CRPS Blogger

Lorna, our newest blogger, discusses life with CRPS and introduces herself to the CRPS communityBy 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?