May, 2018 - RSDSA

Life With CRPS In Europe With The RSDSA Board

May 30, 2018

By RSDSA Board Member, Ilona Thomassen

What is it like for people living with CRPS in Europe? Ilona, a member of the RSDSA Board and of the Dutch Patient Society, addresses some of the similarities and differences between CRPS in America and in Europe. While some approaches are similar, some are quite different. What surprises you the most?

I am writing this blog from the other side of the earth, in Europe and, more precisely, in the Netherlands. There are also a lot of CRPS patients here. There is a patient’s society to [help] inform patients, to support them, and to organize meetings. I have been the chair of that organization for many years and there are about 1800 members, 40 volunteers, and a board of 7 individuals. Our society started 30 years ago with 4 patients and Prof. Goris. He was one of the very few in the Netherlands, and maybe worldwide, who took CRPS very seriously.

How did I get into contact with the RSDSA? In 2003, we wanted to organize our first congress for healthcare professionals, especially physicians. We had never done that, so wanted to learn about this kind of congress and there is no better place to learn then by the RSDSA. They had a lot of experience. So, I went to Tampa to look at their congress in 2002. I learned a lot and was not nervous anymore about the organization of our congress. I met Jim Broatch, Mary Beth, and some other volunteers who all are still at the RSDSA. I left with a lot of information and contacted some speakers, such as Prof. Baron, Prof. Birklein, and a psychologist. Our congress was a big success.

After a few years Jim and Dr. Peter Moskowitz came to the pain department in Rotterdam to talk about the 20-years research [study] of CRPS patients. I was also invited to attend that meeting. I do not remember how that pain department got involved with this research, but I had some contact with Peter and Jim afterwards. In the following years, the RSDSA and my organization were involved in the Bath Consortium and the contact got more intensive. We saw each other in Chicago, Zürich, Bath, and Amsterdam over the next few years. One day, I got an invitation to be a member of the board. I fully agreed and there is now a telephone meeting every 6 weeks or so.

In the beginning, it was quite shocking and impressive to get the inside information of the RSDSA. Shocking was the amount of work that was going on. Impressive were of all the activities RSDSA runs as an organization; the meetings, the peer-to-peer contact, the website and all other informational sites, their political activity about medication and SH, and raising money, and more. It was a little bit overwhelming (no not a little bit, very overwhelming)

There are big differences between our organizations, but also several similarities. The Netherlands are small. The travel distances do not take much time comparing the distances patients have to travel in the USA. In 2 hours, you are from East to West with a little bit more time from North to South in the Netherlands; that is the whole country. One knows another very well and there are short lines between physicians and other health care professionals and our society. I know all the important professors/ researchers and have an easy-going line of contact. I was involved in the development of the evidence guidelines CRPS 2006/2014.

All patient organizations get money from the government, about 45,000 euro and membership fee of about 5000 euro. Most activities can be paid with this money. It takes some time for patients to get a diagnosis of CRPS, especially by GP’s. That is because they do not often see CRPS, just 1 or 2 patients a year and then with different symptoms. That makes it difficult to diagnose. But in almost all pain clinics and rehabilitation centers, they know quite well about CRPS and treatment. We do not know about visits to the SH for pain medications in weekends. We also do not have the very big problems (yet) about opioids as in the USA.

A really big difference is the Health Care System. In the Netherlands, you are obligated to have a basic health care insurance and all of your medical treatment is payed for. You can also get extra insurance, for example- more physical therapy or alternative treatment. Another difference is that disabled people or those affected by chronic illness that are are not able to work anymore get a payment from the government (that is not a lot but it helps you). It does not happen that you have to sell your home because you are not able to pay for your treatment. I think patients in pain and having a chronic illness have a lot more trouble in the USA than here.

The similarities

All patients worldwide have the same heavy pain, their symptoms with more or less disabilities, work problems, psychological problems, and even social problems. They are similar with their CRPS. We, the RSDSA and the Dutch Society, work most with volunteers, but it is harder for both societies to get new and younger volunteers. We organize meetings and also both societies have the experience that lesser people will attend those meetings (even here with the relative short distances). We also have the experience. Every year there are less members. One can find the information on the internet and social media. For most people that is enough.

But what we really share as RSDSA and our society is our commitment to help CRPS patients in any possible way but most with good information and contact.

Europe

In Europe groups from Germany (Network), England, the Netherlands, Spain, and maybe Finland have contact with each other. We form a sort of Global CRPS community. We share articles, news and sometimes just ideas or have a chat.

I hope you like this blog about CRPS in Europe and the Netherlands. I wish you well.

Ilona Thomassen

Chair Dutch Patient Society

Board Member RSDSA

CRPS – Find The Fruit Or Rot Inside

May 23, 2018

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

Belated Mother’s Day- Honor Thy Caregiver

May 15, 2018

By Guest Blogger Melissa Wardlaw

As a patient who has been living with a multitude of painful chronic illnesses for over 15 years now, I have had to reluctantly rely on caregivers. Being a highly independent and self-sufficient person my entire life (even living in my own apartment at 16), this has been a very difficult pill to swallow! The most pivotal caregiver and unsung hero in my life has been and still is my mother Donna. So on this Mother’s Day 2018, I honor her! Further, I will share some lessons learned about honoring the caregiver(s) in your own life.

Throughout my entire 20s, my focus was on my upwardly mobile and successful business career. But when I suffered a life-changing spinal cord injury during an epidural steroid injection procedure that went wrong, and was subsequently diagnosed with CRPS/RSD (and additional chronic medical issues), I was stopped in my tracks! Everything I had worked so hard for was gone in an instant and suddenly I needed my mommy – in a big way! Yes, my soon-to-be husband lived with me at the time, but I wanted and needed my mom the most!

Even though my mom had a demanding full-time job at the time, she jumped right in and sacrificed everything to be there for me. Along with my husband, she went to doctor’s appointments, came over and helped me, and just simply held me and told me it was going to be ok even though none of us had any idea if it would be. We were all scared and confused – we knew it was bad but certainly didn’t realize the extent of the far-reaching medical journey that was ahead at that naive point in time when CRPS/RSD was even less known than it is now. Not only were most doctors unfamiliar with this monster of a disease, but there were no Facebook or support groups, nor was there much viable information on the fledgling Internet as to what it all meant. So we were truly on our own – my mom and my then-husband as my primary caregivers – and me.

A few years into my medical journey, I ended up getting divorced – and no, ironically not because of my medical issues but that’s another story! After my divorce, my mom was my primary caregiver. Although I still lived alone, I was unable to drive – for almost 10 years total! I had to use a wheelchair and walker a lot of the time and similar to many CRPS patients with uncontrolled pain/symptoms, I rarely left the house or even the bed for many years. I needed help – and a lot of it.

It was a confusing and scary time for both my mom and me. I was in so much severe intractable pain, with changing and devastating symptoms and new diagnoses, along with the significant loss and grief that surrounded my “new normal;” because of all this, it was hard to focus on the fact that my caregiver was also going through the same life-changing loss and grief I was – she just didn’t have the physical piece. But she was watching her once vibrant and independent daughter being reduced to a shell who didn’t necessarily want to even exist anymore given the amount of physical suffering I was in. Those years were obviously very hard on both of us and I know many patients and caregivers out there can certainly relate.

Knowing what I know now, given that my pain and symptoms are much better controlled and managed, what would I have done differently to “honor my caregiver?”

1) Communicate and acknowledge her pain
I was so wrapped up in my own suffering, crisis and needs, that I rarely took time out to check on my mom or ask how she was handling all of this. I was also naive to think that it wasn’t affecting her greatly because she wasn’t experiencing the physical components, which was completely false. She was/is married and was working full-time (now retired), yet gave all her extra time and energy to me. Inevitably this put a strain on her responsibilities and other relationships as well as ours. Needless to say, we developed some friction and resentment towards each other, which was merely hurt, fear and frustration with the situation, manifesting as anger.

So it is important to communicate with your caregiver(s) – to check in and ask how they are doing. They need to express their feelings and pain too as they are suffering right along with us. So many lives are impacted from the effects of a chronic illness. Often times, household dynamics and responsibilities shift, which necessitates spouse caregivers take on a whole new set of tasks that may be foreign to them. Children may need to step up household chores as well and may act out as a result. They can also be frightened of what they don’t understand, especially when it comes to a parent dealing with medical issues.

It is important to be cognizant of how your medical crisis is affecting loved ones as well as yourself and not shy away from discussing it or simply asking questions. Some caregivers aren’t comfortable discussing their feelings and will be more likely to withdraw or deny them and that’s ok too. If appropriate, it may help to get a Counselor involved, as dealing with the stress of caregiver/patient (and other) relationships has many different facets that we as the involved parties don’t always understand.

2) Talk about things other than my medical situation
When we are consumed with a medical crisis, it can be hard to think, let alone talk about anything else. Don’t forget that you and your caregiver(s) can find other things to discuss – and you should. Ask him/her about his/her day, talk about current events or just watch a movie. It can bring much-needed relief for both of you to take a break from discussing your medical situation, and keep in mind it can also distract your pain/symptoms as well as your caregiver’s worries to laugh and talk about something – anything else! One of the things I remember when I was at my worst is my mom telling me she loved to see me smile and laugh again! No one wants to constantly talk about negative and depressing things and sometimes it just helps to feel normal through a little laughter! They don’t say “laughter is the best medicine” for nothing!

3) Thank and appreciate her more often
I don’t know what I would have done without my mom – both then and now. She would help me with errands, laundry, cooking, driving me to the ER and countless other appointments (in and out of town), finding other caregiving assistance and basically anything else I needed without ever asking for anything in return. In a sense, I took this for granted and put a lot of pressure on her because she was my mother. I could have thanked her and told her how much I appreciated her way more than I did.

I realize not everyone has a mother or caregiver as dedicated as I do and it hurts me to think my focus was turned so inward on my own suffering that I just assumed she would be there for me because she was my mother. She has shown me the value of true commitment, loyalty, forgiveness and unconditional love and I tell her how much I love and appreciate her and thank her now probably more than she wants to hear!

4) Encourage her to take better care of herself
As most patients know, when our pain and symptoms are unmanaged and out of control, we become more focused on trying to “fix” or cure them as opposed to trying to live with or manage them, which is impossible when dealing with an incurable chronic illness. Desperation sets in and our worlds become smaller and smaller. It’s as if we develop tunnel vision and cannot see anything or anyone around us who is also suffering because our suffering is worse, right? WRONG! For lack of a better term, it becomes all about us! We become self-consumed to the point of self-pity. And in this downward spiral, we have a tendency to drag our caregiver(s) down with us. Of course this is not any more healthy for them than it is for us!

Ever heard the term “misery loves company?” Well I think at some points along the way this quote fits perfectly. It’s as though the fear and stress of our medical issues causes us to grasp ahold of those closest to us and not let go. We are scared if they go anywhere or spend time with others, or have fun they will leave and never come back and we will be all alone. After all, why would someone CHOOSE to be around the negativity and misery of chronic illness and pain when they can live a normal life? As patients, this is the tape that plays over and over in our heads and makes us cling to those we love in times of need. We don’t want to be burdens to anyone, to the point of sometimes pushing people away; but we also don’t want our caregivers to abandon us either. It’s a dichotomy.

In reality, getting away and taking breaks is what caregivers need the most! In order to be healthy and effective, caregivers need to take care of themselves FIRST before they can take care of us. So encouraging our caregiver(s) to live as normal a life as possible is exactly what we as patients should do. This means encouraging them to go out with friends, go on vacations, spend time in the spa, etc. – even forcing them if need be! When someone is acting as a primary, basically full-time caregiver (because I’ve been told even if they aren’t physically there with the patient, most likely they are thinking and worrying about the patient), it is exhausting – not only physically but mentally/emotionally, spiritually and for some, even financially. Caregivers need to ensure they do not end up as patients themselves! As they feel refreshed and healthier, caregivers will become better equipped to deal with the physical and emotional roller coaster of the patient’s needs which in turn will have a positive impact on the patient.

Of course no one would choose the role of a caregiver, any more than we choose the role of a patient. They do it out of love, duty and commitment to support their family member so we won’t have to fight the chronic illness battle alone. They want to help and it gives them peace knowing they can make our lives a little easier. Knowing they have dedicated themselves to the pivotal role of a primary caregiver should give us comfort that they will still be there for us even if they would have more fun doing something else!

So on this Mother’s Day and everyday, I honor you mommy, and all the other caregiver warriors out there who make living with chronic illnesses and pain possible through your undying support, friendship, advocacy and unconditional love. I am forever grateful. Happy Mother’s Day!

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 in-person and online Support/Empowerment Groups 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 in their new house in Atlanta. She can be reached at [email protected].

When Is Physical Pain Emotional Pain?

May 8, 2018

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.

Safety Month and RSDSA – What Does It Mean

May 1, 2018

By Jenny Picciotto for the RSDSA blog.

Support groups are incredibly important to the CRPS community. RSDSA works to help make sure that these support groups are equipped with the tools that they may need. Jenny, a support group leader, writes about the upcoming Safety Month and what being a Support Group Facilitator has done for her.

In June of last year, the RSDSA began an outreach program for support group leaders. I jumped at the opportunity to participate in their monthly calls. Having been the facilitator of the Oahu CRPS Support Group since 2013, I have faced many of the same challenges I heard described by other leaders; finding a place to hold meetings, getting the word out, selecting topics for meetings, and maintaining enthusiasm when attendance numbers are low.

Committing to being a support group leader is an act of courage. We understand how hard it is for people in pain to make the effort to get out of their homes and commute to a meeting, because each of us are facing the same challenges our support group members face. We juggle our own physical and emotional needs while dedicating ourselves to be available for our peers. We know how validating, encouraging, and informative it is to meet people who understand what it is like living with CRPS, and make a conscious choice to create a space for others to have the same experience.

Sharon Weiner, a member of the RSDSA Board of Directors who has been a support group facilitator for nearly two decades, is spearheading the Facilitators Support Group (FSG). Her vision is to develop a strong support network for these groups who provide a vital community for the many CRPS patients who often struggle alone and rarely find people who understand what they are going through. I have been pleased to have the chance to get to know her over the last year, and am inspired by her ambitious goals. She asked me to write a blog post about our group and what we have been up to.

FSG is developing a library of meeting guides to help support group leaders organize their meetings around practical, applicable ideas about living with CRPS. As a facilitator, I am constantly looking for good content! Sharing resources with my group provides a central theme for the meeting, and a starting point to talk about how we cope with or overcome the difficulties we face.

The first guide is set to premier just in time for June, which is National Safety Month. It is chock full of ideas about things you can do to make your home safer and steps you can take now to be better prepared in the event of an emergency. This big topic is broken out into four sections: medical records and medical preparedness; household and personal safety; disaster awareness and planning; and suicide and crisis management. Any one of these subjects could be the centerpiece of a support group meeting.

We hope every RSDSA support group will take advantage of these resources and come together as a community to raise awareness about living safely with CRPS during National Safety Month.

I don’t know how many of my readers have been to a support group meeting, but I hope you will be motivated to see if there is an RSDSA support group in your area. If not, please consider starting one. There is nothing as powerful as shared experience.

The Facilitator Support Group (FSG) is a resource for new and existing RSDSA group leaders. We offer a monthly support call, a Facebook page, and a grant program. We are developing resources for facilitators including how-to publications, meeting guides, and a leader’s conference.

If you are a support group facilitator and would like to join FSG or apply for a grant, please contact Jim Broatch, 877-662-7737 or [email protected].

If you are interested in joining a support group you can find a list of RSDSA registered support groups at: https://rsds.org/find-a-support-group-near-you/.

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Jenny Picciotto is a writer and CRPS patient who enjoys reading and playing the piano. She was a yoga instructor and massage therapist before CRPS changed her trajectory. She currently lives in Hawaii, where she facilitates the Oahu CRPS Support Group.

Please consider making a donation to RSDSA today!