Never Let Pain Define You – CRPS Inspiration

Gabe blogs about not letting pain define you, but letting CRPS help you find your strengthWritten by Guest Blogger Gabe King

Guest blogger Gabe returns this week. After his blog entitled “A Thorn in the Flesh” was well-received, he returns to write about how CRPS pain can change you, but it doesn’t need to be in a negative way.

“Don’t let pain define you, let it refine you.” -Tim Fargo

With chronic pain, it can be very easy to allow it to define who you are. You can feel like just giving up and allow it to control every inch of your life, letting it decide who you can be.

In all honesty, I have found myself doing the exact same thing. Because of how extensive and unpredictable our condition is, we find it extremely difficult to set and attain goals. Every time we set out with good intentions we find ourselves shortly thereafter in so much pain that we feel defeated before we even start. Things that usually help us cope with the pain, after a while, stop working. We are constantly having to adapt to this illness.  Sometimes, we just want to throw in the towel, saying, “What does it matter if I plan to do this now? I won’t be able to when the next surge of pain comes along.”

To put this in a matter of perspective, imagine you are a fort being defended by a small garrison of soldiers against a larger, menacing foe.  Your enemies have the ability to be invisible until they attack, making your job of defending even more difficult because you do not know from where the attack will come. To make things worse, your enemies are not mindless barbarians, but super-intelligent aliens, so they are very quick learners and will never attack the same way twice and never let up. Because of the relentless onslaught, your soldiers are constantly on the brink of total surrender.

Now, let’s change up a few things in this scenario. What if we replaced our extremely exhausted soldiers with adaptive, super robots that will constantly take the enemy’s attacks, and, with equal strength, push back, seeking new ways to combat and overcome the unrelenting forces.

Wishful thinking, right? What I am trying to say is that one of the key things we need to do is just like Tim Fargo stated, “…not let pain define you, let it refine you.” Some of the greatest people in history were refined through their pain, from Steven Hawking to Helen Keller. If they could overcome their struggles, can we not do the same?

You may not need an army of adaptive, super robots to help you fight your battle with chronic pain, but not allowing it to define you is a good first step toward victory. Choose not to be defined, defeated by this invisible enemy, but choose to be refined daily, facing it head on.

You Want to Write About CRPS, But Don’t Know What to Say

Written by CRPS Warrior Samantha Barrett

To write about CRPS is to expose a part of yourself that is vulnerable, but so important when it is shared. Members of our community have voiced an interest in writing about CRPS, but didn’t know where to start. Here we go!

Writer’s Block. Anxiety. Fear. Overwhelming thoughts. All of this contributes to an issue that I hear about all to often. Members of the CRPS community want to write about their experiences, both good and bad, but it can be incredibly difficult to find a starting place. How can you get past the barriers to write about your own experience, whether it’s for public viewing or for your eyes only?

Finding a starting point for you writing can be the most difficult part. Brainstorming can help you find the topics that you would really like to write about. Take about one to five minutes and write down every topic that you can think of that pertains to your CRPS. From the day of your diagnosis to meeting your first CRPS friend, write down anything you can think of. Think about your passions in life. Do you like to cook and have had to make adjustments to accommodate your CRPS? Were you a dancer that now choreographs from a chair? Did you find a new hobby because of CRPS? Anything is up for grabs! When time is up, review your list. Circle the topics that you think you could write a detailed piece about. Is there one that sticks out the most? Great! Let’s go from there.

I have always been one that likes to map out my thoughts. I still utilize a tool I was taught in 2nd grade. Take a blank piece of paper. Write your topic in the middle and circle it. Think of at least 3 main points you can write about for this topic and have them web off of the main topic. Then, add your details about each point around it. Then, all you have to do is put it into sentences. I put a sample of my mind map below (yellow is the main topic, blue are the supporting ideas, green are the details for the supporting ideas). Try doing this for a few ideas until you find one that you can’t stop mind mapping. This topic would be something great for you to write about!

Mind Mapping has been a tool that Samantha uses to write about CRPS

With writing about CRPS, more obstacles than Writer’s Block come up. It can be scary to put yourself out there. So many of us living with CRPS have been judged at one point or another, or have been told that our diagnosis isn’t real or to get over the pain. That’s the beauty about writing though. Your thoughts and opinions are your thoughts and opinions. Your experiences with CRPS are your experiences! They may differ from mine, Jane Doe, and John Smith’s experiences, but that’s the amazing thing about sharing your writing. We can all learn from each other. Within every story is something to learn and something to relate to. You never know who you could help by sharing a story about the time you went to Reiki or acupuncture, or to aqua therapy. Whether your experience was positive or negative, people can take that away from your piece. Here at RSDSA, we try to keep a supportive environment. Everyone is entitled to their own opinion, but we ask that people comment respectfully. Remember, no one can discredit your experience as a human being.

Once you get past your obstacles and start writing, reference your mind map to help you through the process. If you start to get stuck or frustrated, take a step back from it for a little while. Stressing yourself out about writing will not help your CRPS. But, as soon as something sparks in your brain, go back to your writing and get it all out. It may take you an hour, a day, a week, a month, or even longer. Writing is a process, and each process is different.

When you do finish your piece, consider submitting it to RSDSA for TheTuesdayBurn. We are always looking for writers to submit their experiences, opinions, and overall thoughts. You can submit your piece of writing to [email protected]. We like to try to have our blogs be over 400 words and to include a picture related to the topic. We want to hear from you!

A Thorn In the Flesh – A Chronic Pain Journey

Guest blogger Gabe King details how living with CRPS and chronic pain is like living with a thorn in the flesh. This is his RND story.Written by Guest Blogger Gabe King

This blog was originally featured on Gabe King’s blog site Treasures on the Sand. This blog was submitted to us by Mr. King with full permission to share his chronic pain journey.

For many of us with chronic pain, we can only remember suffering. It can be very hard to think of the times that were pain-free, living our lives like normal human beings. However, this is not the path Our Heavenly Father has in store for us, for He has a greater purpose at hand. Though this is the case, it can still be a difficult journey, walking through life with what the apostle Paul referred to as a “thorn in the flesh.”

I wanted to share with you my own journey, from its early beginnings to the present. I hope that you can find encouragement from it, no matter what stage of life you are in right now.

In October of 2013, while at a fencing practice, I popped my back during a routine exercise, causing my back to ache for at least a week. Eventually, the pain subsided, so we thought nothing of it.

From November to December, while in the midst of performing as “Scrooge” in A Christmas Carol at our local community theatre, I contracted two respiratory viruses back-to-back, causing immense pain in my chest. I went to our family physician, who, after finding nothing on my chest x-ray, diagnosed it as costochondritis, gave me an inhaler and Z-pac, and sent me on my way. The chest pain continued, along with fatigue from constantly being in pain.

January of 2014, the pain decreased and I began to feel better. This was not to last,
however, and by February my pain was back with a vengeance. We returned to our family physician. This time, he ran blood tests and gave me 1000mg of Naproxen to take once a day. Finding nothing on the tests and having no relief from the pain, I was once again diagnosed with costochondritis and told to go to the ER if it did not improve. In March, as the pain intensified, we went to an ER and had a chest x-ray and blood work done. Both came back clear…again, and we were back to square one.

April added a new layer to the mystery as my eye became inflamed for several weeks. We tried treating with redness eye drops, Neosporin drops, and allergy medicine. Nothing touched it. We got in with a pediatric ophthalmologist. She believed there was a connection between the chest pain and the eye inflammation, gave us prednisone drops and pills to see if they helped, ordered full blood work to be done, and referred us to a pediatric rheumatologist. The blood work, of course, came back normal, so we waited for our appointment with the rheumatologist.

In May, while waiting to get in with the pediatric rheumatologist, we went to a regular rheumatologist at UVA who believed that it was not a rheumatoid issue, but a muscular one, and decided to give me twenty cortisone shots in my chest wall. Needless to say, it was not a pleasant process, nor did it have its intended effect of relieving my pain. In fact, not long after, the pain began to spread from my chest to both my legs and arms, making it harder to participate in daily activities.

A few weeks later, we had our appointment with the rheumatologist. This is where I was first diagnosed with RND, Reflex Neurovascular Dystrophy. (RSDSA Note: RND and AMPS are used as names for pediatric CRPS).  After running another batch of tests to prove his diagnosis, he gave us information on a Children’s Hospital in Pittsburgh that specialized in treating RND and sent us on our merry way. We never heard from him again nor were we able to get in touch with him.

We researched Pittsburgh and found they treated RND with intense physical therapy, along with psychological therapy. It sounded promising, but as we began the process to get scheduled with them, we looked deeper to find that they had a rather large percentage of patients who, within a year or two, had a recurrence of the RND. Though the possibility of being free of pain for a short time was great to hear, the fact that it would be short-lived struck me like a dagger in the back. I wanted to be completely cured, not halfway cured.

So, during most of the Summer of 2014, we sought out other means, from aqua therapy to a tens unit, all to no avail. We even went to a pediatric neurologist, who turned me away because he “couldn’t help,” pretty much saying it was all in my head.

Finally, in the middle of June, I gave it all to my Father, and He gave me a reprieve and allowed me a full month and a half without pain. Though I may not have known why He decided to grant me this gift, I understand now that it wasn’t a gift, but a message; a message that would take me two more years to figure out.

That fall, the pain reared its ugly head again, radiating out from my chest to my back, arms, legs, and hip. At this point, I was working part-time at a restaurant in town. I had to quit that job due to the physical limitations from my intense pain making me unable to continue.

Over the course of 2015, I had to limit most of what I loved to do, acting, fencing, singing, and other extra-curricular activities, because the pain was becoming unbearable to the point I was having a hard time getting out of bed. We tried everything from Lyrica to Maxalt. The only medication we found that helped was Cymbalta, which mainly allowed me to sleep through the night without waking up in excruciating pain. When the pain would get severe, I would take a Hydrocodone, which only knocked me out, but it allowed me to rest for a short time.

It was at the beginning of 2016 that it began to up the ante, from the death of my grandfather to living through an EF-3 tornado to our eventual move to North Carolina in the fall. The stress of all those combined caused my pain syndrome to spin out of control. I was taking classes online at the community college nearby and had the hardest time passing with good grades because I could hardly focus with all the pain.

When we had officially settled in NC, we set up an appointment with a nearby neurologist, who was highly recommended by members of our church for persevering to find answers. He diagnosed me with AMPS (Amplified Musculoskeletal Pain Syndrome, for more info, click here) and, after poking and prodding me, decided there was nothing he could do and left me to fend for myself.

This was the final straw for me. I had finally had enough with doctors and medications, and finally came to grips with the fact that my Heavenly Father has allowed me to bear this burden for a greater purpose. And so, that brings us to the present, where I currently am endeavoring to go through life with this “thorn in the flesh.” Yes, I may have my bad days, but I still strive to fight this vicious disease and glorify my Father through the path He has in store for me.

I hope and pray that you can say the same.

Happy Disabiliday – A Letter from A Canadian CRPS Friend

Paula Orecklin, a CRPS Warrior, details what disabiliday is and what it means to here.
Featured image and photo credit: Dario Schor

This Disabiliday blog was originally featured on Pain Matter‘s website. It was submitted to us by Paula to share with our wonderful #TheTuesdayBurn community. We hope this helps inspire all those living with disabilities, especially CRPS/RSD.

You may remember Paula Orecklin, the inspirational Canadian CRPS patient whom I wrote about in yesterday’s blog post:

Let’s Talk To An Inspirational Young Canadian Woman, Paula Orecklin, About CRPS, Sativex, Physiotherapy and Neuroplasticity

(There are additional References and Links at the end of this blog post.)

This week, Paula sent me a beautiful letter to share with all of you (see below).  Paula’s letter contains a very important message for everyone, on behalf of all people living with disabilities including chronic pain. I feel delighted and honoured that Paula decided to share her inspiring letter and beautiful photos with my Pain Matters Blog (as well as any other media that Paula chooses). Upon reading Paula’s letter, I thought to myself, “Paula’s idea to start a ‘Disabiliday‘ tradition for patients whose lives are challenged by disability and pain is fabulous!  In fact, any day, whether it is April 1 or otherwise, is a great day to celebrate people who face adversities and obstacles due to disability including pain, and to also be grateful for our own blessings.”

Quoting from Paula’s her own words written to all of you from the bottom of her beautiful, caring and generous heart:

“This past Saturday, April 1, 2017, I held the world’s newest disability holiday – Disabiliday. I just entirely made up a holiday. I figure someone has to have started every other celebration, so why can’t I do the same?   Last year, I had my 15th anniversary of having Complex Regional Pain Syndrome, a severe chronic pain disease. With such a large milestone, I knew I could either get very depressed, or make something positive out of it. It wasn’t something I could just ignore. Instead, I chose to make a celebration out of it. I hadn’t just been in pain for 15 years – I was in pain for 15 years and was still going. It became my Disabiliday.

The event turned out to be so positive and wonderful that I decided to hold a second one this year. I ended up making more progress this past year than I ever had, in terms of function and ability. I wanted to celebrate that as much as anything – that I’ve been in pain for 16 years and am now going somewhere. I don’t really know where yet, but I figure I have another year to figure that out.

I think Disabiliday could also be relevant to other people with disabilities. When you’re disabled, you can often feel isolated, or like you’re not having the same kind of lifetime milestones other people have. Maybe you can’t move out and have a housewarming, or maybe you can’t have a long term relationship with engagement and marriage and babies. Of course, plenty of people with disabilities do just those things and I’d never discount them or their lives – but I, at least where I am right now, don’t feel like I’m able or ready for them. And even birthdays can feel like you aren’t where you should be in life, especially compared to people around you.

So I wanted to do something new and different. I wanted something that fit where I am in life, where I am emotionally. And thus, Disabiliday. A day to celebrate that despite the amount of pain I’m in, despite the limitations my disease has enforced, I still am. I still have worth. I still have a presence in people’s lives. I still am going. Surrounding myself with the support structure I’ve been so lucky and honoured to have found in my life, I was able to sit back and take in just how many people love and care about me. Without them, I would never have gotten through so many years of pain. They’ve made the time worth it.

Disabiliday is a way of reinforcing my place in life. The place in my life, and in my family and friends’ lives. Emotionally and psychologically, all of the normally invisible ways people care were made evident. It might seem silly to just make up a holiday out of nothing but a terrible pun my friend came up with to have a Disabilitea Party that I later expanded because if I’m going to make up a celebration I might as well get a full day out of it, but the meaning really is there. And it was a lot of fun too. I got my hair and makeup done at Sephora and Mario’s Salon (now Aura Polo Park) respectively last year and felt amazing once I was all made up. This year I got my hair highlighted, trimmed, and makeup all done at Aura Garden City. It’s superficial to some extent, but I felt so much better once finished. It’s an external thing, of course, but that doesn’t mean it doesn’t matter.

Last year we went to Sam Po Dim Sum and also introduced all of my non-Jewish Winnipegger friends to the deliciousness that is a shmoo torte from Gunn’s Bakery. It’s this layered angel food and whipped cream confirmation that’s North End of Winnipeg Jewish tradition.This year I upped my game with a wonderful dinner at Kildonan Park’s Prairie’s Edge restaurant and a cane cake from Dolce Bake Shop. I’ve used two canes for quite a few years now (when I wasn’t in a wheelchair), and I’m finally, finally starting to walk on my own. In fact, I made a great entrance to my party by walking in. That alone made the night amazing.

Paula celebrating her disabiliday with CRPS/RSD
Photo Credit: Dario Schor

But I wanted to step it up. I went to this awesome bakery (I recommend the chocolate cupcakes with pistachio buttercream icing) and had the pastry chef make a custom cake for me- a replica of one of my canes. And man, did slicing that thing up feel good!

Paula, on disibiliday, slicing up a cake made to look like her cane that she used for CRPS/RSD
Photo Credit: Dario Schor

Other highlights of this year’s Disabiliday party included a featured guest, my physiotherapist Maria Pawlyshyn of Movement360 Inc. She is a huge part of why I’ve made so much progress this past year. Working with her, I’m doing better than I ever have since developing Complex Regional Pain Syndrome. Other features included a dinosaur balloon- a DisabliT-rex of course (I hate myself for these puns just as much as you do) – and a truly stunning purse my mom and I designed and she made for the event (see top photo). We’ve made a lot of purses over the years, but this one has to be one of the best. Just really gorgeous. The writing on the front of it is my handwriting.

Paula wirth her DisabliT-rex for CRPS RSD
Photo Credit: Dr George Fulford

We also filmed the Disabiliday parties for a documentary Dr. George Fulford of the University of Winnipeg and I have been filming for a few years now, with the assistance of Steven Mellor for sound. Originally meant to be the first of a series of five minute videos of young adults with disabilities, this project has ended up capturing the huge amount of progress I’ve made over the past couple years. I was at my worst, nearly entirely wheelchair bound, when we started this project and I’ve made such huge gains. To actually walk on my own – I never expected ever to do that again in my life.

In other bragging about things news, my wonderful friends got me the most amazing sets of rings for a Disabiliday present. This isn’t quite as materialistic as you might think. For many years now, I’ve developed open sores and wounds all over my body. My doctors think that with the amount of pain I’m in, always, the skin has just sort of gotten very weak and opens up into wounds. I don’t do anything to create them, I’d like to explain – they just open up without any influence or action on my part. They eventually close up but leave scars. Even though the scars eventually start to fade, it doesn’t help because more new wounds have already opened up. To detract attention from all of my wounds, I wear lots of rings (and wear makeup) to both cover up wounds on my fingers and to attract attention away from wounds on the rest of me. My friends know this, and so rings really do mean a lot to me. Plus they are adorable and I totally love them too.

So Disabiliday does really have some meaning. One one level, I realize how weird – and how self-important – it is to make up your own holiday and expect people to celebrate it. On another hand, this matters to me, and my friends honestly do support it. If it makes me feel better, if it doesn’t harm anyone else…why not? Maybe a lot of people – if they were to ever even hear about it – will think me stuck up or even that I’m celebrating being a victim of my disease, but I can’t help that. All I can do is lay out my reasoning here and hope maybe other people might understand. That’s really all anyone can ever do, really.

Finally, I want to thank Prairie’s Edge for hosting us, Dolche Bake Shop for a delicious cane, and Aura Garden City for totally making me over. And I really want to thank my best friend, Eryn Schor, for not only organizing both of my Disabiliday events, but actually sticking around for the better part of five hours as I got all made up. Now there is a truly loyal friend! She means so much to me and has been by my side since we met in elementary school. Without her, these events would never have happened. Thanks also go to Dr. George Fulford for filming the whole event – and for filming my life over the past few years, and to Steven Mellor on sound. Dealing with that boom mike was not easy!

And lastly, thanks to my parents. My dad was unable to be in town for the event, so we just got him on Skype on a phone to take some family photos. With my parents, all of my friends, and my health care providers, with all of their love, care, support, understanding, work, and through their thought, research, and education, I can truly say that despite the amount of pain I’m in, the past 16 years have been entirely worth it.

Happy Disabiliday!”

Paula at the end of disabiliday with some of her support system
Photo Credit: Dario Schor

I am certain that most of you will be equally touched by Paula Orecklin’s letter just as I am!

Sabina Walker, Pain Matters Blogger

PS  Are there any thoughts on Paula’s idea of a ‘Disabiliday‘ tradition from the rest of you in ‘Pain Matters Blog Reader-Land?’

FURTHER REFERENCES AND LINKS ON PAULA ORECKLIN, CRPS PATIENT:

(1) Paula Orecklin – UNE Patient Case Study – April 4, 2013

(2A) CRPS Video on CRPS by PARC (a CRPS website)

(2B) This blog post also includes details and links to a video/DVD called:

Living a Life in Pain – The Story of RSD/CRPS (by Sarah Panas, film maker):

This video is also accompanied by a 5-minute trailer:

Living a Life in Pain: The Story of RSD/CRPS – Trailer’”

SPPAN Tracking State Issues- How Can We Help CRPS/RSD?

This blog was originally titled “How SPPAN Went From Tracking A Few State Issues A Year, To Monitoring 1,900- And Changing the Rules in Several States.” It was initially posted on Connectivity.

At RSDSA’s Nashville conference, pain-related legislation was a major hot topic. Some of the most frequently asked questions were about pain legislation and how to move towards change. RSDSA was offered this blog by CQ Roll Call to help explain a little bit of what SPPAN does and how one person can make a difference. How can this help people with CRPS/RSD? How can we move towards progress? The article starts below:

“Here’s how one organization (for whom policymaking is currently on fire in the states) moved from managing a handful of pieces of legislation at state level four years ago, to keeping on top of 1,400 different bills and 500 regulations, in all 50 states, D.C. and Puerto Rico. Without missing anything of importance.

And it’s all done by ONE policy director.

Katie Duensing is the assistant director for legislative and regulatory affairs at the Academy of Integrative Pain Management. Like many busy policy directors, a huge part of her job is juggling federal and state tracking for which she has CQ’s StateTrack to see what’s going on with her issue. But four years ago pain management, and patient access to it, wasn’t yet treated as a legislative and regulatory issue of top priority in the states. Then came awareness of the opioid crisis. Suddenly states all across the country were being confronted with huge spikes in prescription pain medication addictions and overdoses. Lawmakers needed to legislate fast regarding the prescribing and dispensing of opioid analgesic medications. But that led to a lot of knee jerk policy being written.

Need to watch what’s happening in the statehouses? Check out StateTrack

Enter the State Pain Policy Advocacy Network (SPPAN), set up just five short years ago as the policy department of the Academy of Integrative Pain Management, to tackle the policy barriers relating to optimal pain management.

The Academy of Integrative Pain Management has nearly 4,000 members that represent the various members of a “pain care team” necessary to provide effective integrative or multidisciplinary care. Half their members are physicians, but other disciplines include nurses, behavioral health specialists, physical therapists, pharmacists, acupuncturists, physician assistants, chiropractors, massage therapists, and more.

The Recent Shift in Action

‘I’ve been doing this for four years, and the first year it was just a handful of states dealing with pain management regulations and opioid prescribing,’ says Duensing. ‘Now it’s really every state on some level. It’s a constant deluge. There used to be a break in the summer, when the legislatures were out of session, but now that’s when the regulations start coming fast and furious, and the pain management rules are written.’

The Dilemma

The sheer numbers Duensing has to stay on top of are staggering: ‘I track all legislation and regulation related to pain management in all 50 states and in D.C., as well as federally. It’s intense to say the least. We don’t work on all of them in-depth, but we still track each one, and I go through them all to decide if it’s relevant or not. If it is, I categorize it in case we need to look it up quickly. We track by issue and by jurisdiction, and there are 13 different issue trackers we’re watching with StateTrack.’

How SPPAN Has Translated That Tracking Into Big Wins

In Florida last year the Board of Pharmacy was looking at redoing their dispensing guidelines for controlled substances in response to a big patient access issue. A couple of years previously, there had been a significant push in the state to shut down what are referred to as “pill mills”, the so-called clinics where patients could get prescriptions for large numbers of opioid analgesics without getting a proper evaluation. While the clinics were forcefully shuttered in Florida, the unintended consequence was that the scales tipped too far in the other direction, says Duensing. ‘Even patients that were getting legitimate prescriptions from legitimate practitioners, couldn’t get them filled. Pharmacists were so terrified of the backlash from all of the rules, and from the fear of the DEA looking at them very carefully, that they essentially said, ‘we’re not going to fill these prescriptions.’ So all these patients couldn’t get their medications. Even the media reported on it, which was a testament to the efforts of a coalition of patients and providers in the state highlighting these terrible disparities.’ Duensing picked up on the Florida prescribing-issue using StateTrack, and used it to get updates as the rules were amended. ‘The rules were published in proposed form three different times, so it was quite the process. But we were able to keep up to date, keep tracking the changes, keep putting in our comments and pulling together the necessary stakeholders,’ she says.

The states are a whopping 17 times more productive than Congress. How are you staying on top of state legislation? Check out StateTrack!

‘We wrote numerous letters to the Board of Pharmacy and had suggestions on how they could deal with the issue. But we also attended hearings and convened many interested stakeholders to really discuss the issues. We spoke with the DEA at length, the Florida Attorney General’s office, and really tried to work the issue from within. Florida can be a difficult state to crack if you’re not on the ground.’

The Result

For SPPAN and their stakeholders, their constant tracking and commenting meant the resolution was a clear win as they effectively ended up completely rewriting the Board of Pharmacy rules. ‘The new rules really enabled pharmacists to practice the way they wanted and should be practicing, to give patients their medications. That was a really huge win in Florida, with a lot of stakeholders who worked closely together. Luckily everyone saw that there was a problem and that doesn’t always happen,’ says Duensing. The icing on the cake came when Florida’s attorney general, known to be tough on crime, and who had been behind the push to get the pill mills shut down, came out and said the pendulum had swung too far in the opposite direction, and the issue of patient access needed to be addressed.

Spotting The Trend In Delaware

Thanks to those almost 2,000 pieces of legislation and regulations Duensing is keeping an eye on, she was also able to spot bothersome regulations in Delaware. In August 2015, the Delaware Control Substance Advisory Committee released the first draft of their rules related to safe prescribing of opioid analgesics. Duensing saw that bubble up from her StateTrack alerts. ‘The first draft was worrisome for us, and we submitted seven pages of comments in response, proposing alternate language and explaining why some language might not be correct,’ she says. While the final proposed regulation is expected any day now, SPPAN can mark things down as another solid win. ‘They ended up adopting a good amount of what we suggested verbatim, which was really very exciting,’ says Duensing. ‘I found this originally using StateTrack, tracked it all the way along, and have been alerted to each new proposed version. StateTrack has been very reliable through the whole proposed regulation, and we’re anxiously awaiting the final version any day now!’

How Having a Tool Makes Life Easier

Having a tool that tracks diligently state by state, means Duensing and her small team can stay on top of the multiple pieces of legislation that have spiraled relating to pain management throughout the states. ‘Because we’re a national organization, and the fact our field covers legislation and regulations that are both federally and state controlled, it would be almost impossible to do this without a tracking tool like CQ StateTrack. I certainly wouldn’t get the coverage or depth needed. Or the timeliness.’

Legislative Tracking – The Quiet Man On The Team

‘We used to be a three-person department, but the director of policy and advocacy became the executive director of the organization, so we like to call ourselves a two and one third department now,’ says Duensing. ‘I know some people that track manually, but they usually only target a few states, or for a very narrow issue. When I tell people how much I’m tracking, they’re blown away. The sheer amount is ridiculous.’ ‘I still track a lot more than what our top priorities are, because we do deal with other issues,’ Duensing says. ‘If I see a hearing has been scheduled for a bill having to do with pain rules, or a piece of legislation having to do with a prescription monitoring program, I’ll do a deeper analysis to see if it’s something we need to support or oppose. If so, I start writing letters.’

Advocacy With A Twist

Those letters sometimes take the form of giving the perspective of pain physicians, and show unintended consequences for patients, and how they might be resolved. ‘Other times we’ll reach out to our stakeholders and try to do sign-on letters. If you can get 70 organizations to sign onto a letter, you’re going to get much further. The way we depend on action getting done is by finding and disseminating legislative and regulatory updates to the SPPAN network organizations, and reaching the leaders of these organizations.’ SPPAN has a long list of network organizations, such as the Center for Lawful Access and Abuse Deterrence, the American Medical Association and American Cancer Society – bodies concerned, but not necessarily directly involved with pain management. ‘We try to be both a warehouse and a distributor of pain policy information, keeping stakeholders up to date on the most important issues that need action,’ she says. ‘In my opinion the most important aspect of my job is the letters I send out to policy makers because for us that’s where the rubber meets the road, and how they hear from us. A hugely important part of my and my colleagues’ jobs, jointly, is outreach to other organizations, because that’s also how things get done, too.’ While Duensing’s organization has been at the eye of a hurricane of policymaking for the past few years, it’s not showing any signs of letting up. ‘When I first started, our field was such a kind of niche one off to the side. No one really talked about it and getting any media attention was next to impossible. But in just a few short years, policies related to pain care have quadrupled! It’s a really intense time. I can’t even imagine not having a tool like StateTrack. It’s really vital to what I do.'”

CRPS/RSD warriors, be sure to find SPPAN online and follow their efforts. See how you can help make a difference for people living with chronic pain syndromes, such as CRPS/RSD. It is important to get involved!

The Impact of Mindfulness on RSD/CRPS

Mindfulness with RSD can be a key part of healing and reducing pain. Emily details how she practices mindfulness to manage her RSD/CRPSBy Guest Blogger Emily Salser Nunez

How important is mindfulness and CRPS/RSD? According to Emily, it is crucial. Read Emily’s story and then see how being mindful helped her.

Eight months after fracturing my small toe in a simple misstep, I was diagnosed with Reflex Sympathetic Dystrophy (RSD).  I had never heard of this disorder when my podiatrist concluded this was what was causing my excruciating pain and inability to walk.  I knew something was seriously wrong, as over time my foot felt like it was burning and became bluish-black in color.  So, at first, I was relieved that I finally had an explanation for what was happening to me.  But then the podiatrist looked at me with deep concern and told me this condition can result in lasting, debilitating pain.  “This is beyond my realm of expertise,” he told me.  “You’ll need to find a specialist who can hopefully help you re-gain use of that foot.”  Hopefully, I thought, was not a word I like to hear from a doctor.  He wrote down the acronym RSD on a sheet a paper, and told me to go research the condition.

Following the doctor’s instructions, I went home and immediately Googled RSD.  As I read about the horrors of this neuro-inflammatory disorder, I naturally became overcome with fear and anxiety.  I wondered whether I’d ever be able to walk again, or whether this condition would spread through my body like so many others with this nightmare of a disorder.  And as my fear and anxiety levels crept higher and higher, I noticed something—the swelling in my foot got more and more severe.  This was a very important observation, as I noted a direct connection between my emotional state and my level of inflammation.

A couple months later, I saw a pain specialist who was able to successfully treat my RSD.  She was the first person to confirm what I had observed on my own—that high emotions cause an increase in neuro-inflammation.  Of course, the flip side of that is maintaining a calm emotional state can help lessen the severity of the inflammation and pain.  She was quick to remind me that being fearful and anxious did not cause me to get this disorder in the first place.  There is still a lot unknown about RSD, including why it occurs, but for me it is related to an autoimmune process already very present in my body.  I also have lupus, and my pain doctor believes that RSD may be a manifestation of systemic lupus in my nervous system.  So, while we can’t blame the disease entirely on emotions, we do need to acknowledge that emotions can have a profound impact on the disorder.

As I began a series of sympathetic nerve blocks to treat my RSD, I also began seeing a pain psychologist.  He was able to explain to me the connection between stress, pain, and inflammation.  When we are stressed, we tend to tense up our muscles, thus constricting blood flow and increasing pain.  When we are calm, we let our muscles relax, and our pain is lessened by increased circulation.   He taught me how the more I became anxious, stressed, and worried about my condition, the severity of the pain would increase.  “Don’t worry about the pain,” he told me.  But of course, this was much easier said than done.  We all know that someone demanding us not to worry does not help mitigate our worries in the least bit.  I needed more instruction on how not to worry.

To help decrease my stress and anxiety about living with RSD, the pain psychologist began a series of sessions with me on mindfulness training and biofeedback.  The first exercise we did was a deep breathing technique. The breathing exercise is simple: inhale slowly through your nose, filling not only your lungs but also your stomach with air, and then exhale slowly through your mouth.  Your exhale should ideally be much longer than your inhale.  My pain psychologist had me to do 15 of these breaths at once, with my eyes closed.  He instructed me to start doing these 15 breaths at set times during the day.  So, I set an alarm on my phone at five times throughout the day as a reminder.  Once I began incorporating these meditations into my daily life, I definitely noticed I was becoming more calm and centered.  Even if I was in the middle of doing something, when that alarm went off on my phone, I stopped what I was doing to just focus on breathing.

Now, to be clear and honest, my RSD symptoms did not disappear when I started meditating consistently.  But, I was able to cope with the symptoms better, and I was able to better control my emotional reactions to the pain I was experiencing.  As my doctor noted, relaxation is incompatible with feelings of anxiety, frustration, tension, and pain.  When I was having a particularly painful day, I would just breathe.  The breathing exercises gave me a distraction from pain.  After all, allowing yourself to focus only on the pain is a dangerous path to go down.  By directing your attention to breathing, you’re directing your attention away from the pain.

My pain psychologist even showed me how meditation was having a physiological impact on my body.  He connected my hands to thermometers, which were connected to a computer.  As I breathed deeply and consciously relaxed my body, I could see on the computer that the temperature of my hands increased—a sign that my body was more relaxed with increased circulation.  When the doctor asked me to speak about stressful topics or solve difficult math problems, I could see the temperature of my hands falling on the computer—a sign that my body was stressed and tense, with more constricted circulation. This technique is called biofeedback, and has helped me learn to control the blood flow to my hands and feet.  As someone who also has Raynauds Phenomenon (a circulation disorder that causes blood vessels to narrow), this has been particularly useful!

Another important mindfulness tool that the pain psychologist taught me was about the impact of positive self-talk.  Self-talk (or they way in which we speak to ourselves) can have a big impact on pain levels.  For example, negative self-talk would include phrases such as:

  • “I can’t believe this is happening to me.”
  • “I’ll never be able to enjoy anything if I can’t walk.”
  • “I can’t take this anymore!”
  • “No one will ever understand the pain that I’m in.”

Negative self-talk results in a self-defeated mind, which translates into pain signals being interpreted as suffering and misery.  Now, if we change some of that negative self-talk into positive self-talk, it might sound more like this:

  • “It’s unfortunate that I can’t walk today, but there are many other things I can still do and enjoy.”
  • “I’ve had days this painful, and I have always gotten through them. I can get through this one.”
  • “I can distract myself from the pain by meditating, watching a movie, or reading a book.”

Mindfulness training teaches us to be conscious of our own self-talk.  By training yourself to be more understanding of your own illness, you can bring in more positive self-talk and decrease your level of overall discomfort.

There is certainly a lot about this disorder that is out of our control.  But it’s comforting to know that we have the power to control how we respond and react to the pain of RSD.  Pain doesn’t necessarily have to result in suffering.  Learning mindfulness and meditation techniques was and continues to be a very important part of my RSD treatment plan.  My RSD has improved a great deal, but it is still very much present in my life.  When the next flare comes, I know that I have many mindfulness resources and tools to use to help me cope with pain and stress effectively.

The CRPS Wedding Chronicles – Almost There!

By Samantha Barrett, Special Events Coordinator

Getting closer to the wedding date, Samantha updates everyone on some of the tips she has learned through the wedding planning process with CRPS. What questions do you have for Samantha? She can answer them in the next edition!

Hello friends! It’s been a while since I’ve update you on the wedding chronicles. We are just about 3 months out from the big day (I know, crazy, right)? But I’m getting extremely excited, although a tad overwhelmed.

Recently, my health hasn’t been the best it could be. My CRPS has gone into occasional flares, but the EDS and POTS have been what is really affecting me. But the EDS contributes to CRPS pain for me and then the POTS just makes it so I’m down for the count. I’m really glad I started planning actively so early in the process. I’ve had quite a few days when I had intended to do so much, but was able to do so little. It is a gentle reminder that we have to pace ourselves and roll with the punches. Some days will be bad. That’s when you have to listen to your body.

Since the last time I blogged, we’ve had a lot go on. Our best man dropped out of the wedding, but was replaced with a best woman. Our amazing photographer also did a super fun engagement picture session for us. We’ve had suits and dresses ordered, started on the floral arrangements (which I’ll get to below), almost completely finished our centerpieces, received our invitations, and we’ve been getting all of the other décor items and accessories in stages. It’s all really coming together!

Our engagement photography session was fantastic. I found an amazing photographer whom is all about making sure I’m not straining myself. Plus, she lets you do whatever you feel is natural, so most of our pictures are just how my fiance and I are as a whole. It was so much fun. She even found a location that looked like it was right out of Beauty and the Beast (which is my wedding theme after all). We did a lot of pictures sitting down so I could rest, since I had been flaring around that time and had just recovered from a dislocated hip. It was incredible to have someone that was so willing to work with my limitations. She’s now on the top of my recommendation list for everything. This whole day was just really special and so much fun. I can’t wait to see what she does for the wedding. She even came up with a plan for if I get a pain surge the day of the wedding! Woohoo!

The floral arrangements are really a fun element. My maid of honor is the one that is actually doing my flower arrangements. Because of my dye allergy and the sensitivity of my hands, we decided to go with fake flowers. I was extremely hesitant about this decision, as fake flowers can look, well, fake! But Michael’s Craft Store has some extremely realistic flowers that even the petals feels real (but the stems don’t). They are coming out beautifully. Even better, now I don’t have to try to preserve fresh flowers as a memento. Since my main flower is a rose, now I don’t have to worry about de-thorning either. It’s a win all around. I can’t wait to share these floral arrangements with you.

So, what is my current source of stress due to CRPS? Thinking about trying to write out all the invitation envelopes and finishing the centerpieces. While my hands aren’t too bad, my back and arms start to burn if I lean forward for too long (i.e. to write out anything with a pen and paper). My mom and my maid of honor have volunteered to help me with this so I don’t have to do too many, but it is frustrating. There are so many envelopes to fill out, but I’m working on accepting help. It’s the only way it’ll get done without sending me into a full flare after all. For my centerpieces, I have to paint some stands and get some appliques printed out with the Cricut. I know my grandfather will be the one doing the Cricut, but it’s the application that stresses me. Much like the writing, any kind of leaning forward for extended periods of time, or extending my arm out for extended periods of time, sends me into terrible flares (and I tend to dislocate because of all of the extending). I think my fiancé will have to put the appliques on our teapots. I can at least spray paint the stands. Other than that, I just need to arrange some flowers for inside of the teapots and I’ll be good to go!

We did some cake testing about a month ago. My fiancé hates cake so he’s a fun one to bring. Granted, I’m just as fun with all of my restrictions (no red dye, gluten intolerant, lactose intolerant, etc.). We had wanted to bring my grandmother to our cake testing, but unfortunately, she was too sick to come, which was a blessing in disguise since her wheelchair wouldn’t have fit. I’m lucky that I was using my cane and not my wheelchair, because there is no way I would have been able to fit in to the testing area with my own wheelchair. What a reminder that you must check EVERYWHERE. Even if they say they are handicap accessible, some places do the bare minimum. I realized in college how many places do the bare minimum. I almost started something I wanted to call Sammie’s Challenge, where business owners or higher ups have to navigate their entire place of business in a wheelchair without assistance. I always thought that would open their minds and eyes a little more. I think I saw that someone recently started something like this. I hope they go far with this. But, I digress.

I’m currently working on customizing a cane for the big day. I feel as though the zebra print may take away from some of the classier details. Let me know if you think I should do a cane customization tutorial or share links to where I found a cane that fit!

I recently booked my honeymoon trip as well. How on earth I’m going to get through the full wedding, then flying, and then a ton of walking at theme parks is beyond me. You know how when you really want something, you pull the strength from deep inside of you and pay the price later? I have a strong feeling that’s what’s going to happen. But I’m strategizing. I’m going to start with the theme park that has the most walking. I’m also making dining reservations so there are designated times when I have to sit and rest. My fiancé is one of the best people I could take a trip with in terms of resting. He makes sure that I don’t overdo it when we just go out to do errands. I imagine this is going to be interesting.

So, now that we’re a little closer to the end of this process, let me give you some more tips. Whether you’re the bride, groom, maid of honor/best man, or parent of the bride/groom, you can make these tips your own.

  1. Start planning and buying things as soon as you can. This will save you time and energy as the big day gets closer. It’ll also seem like less of a financial hit since you’ll be doing everything in stages.
  2. Take breaks. If your health is doing poorly, focus on getting yourself better. Nothing is worth overdoing it, especially because it could take away from your special day.
  3. Make a realistic budget. Remember, a budget is an estimate. Don’t go over what you can handle. The day is about you and your soon to be husband or wife, not about how many flowers you had, how extravagant things were, or anything else. Do what feels best for YOU!
  4. Make changes based on how/where your CRPS affects you. Have it in your feet? Ladies, avoid the heals and opts for cute flats or sneakers (or whatever you can tolerate). Make time to sit (even if you have to schedule it), and online shop as much as possible. Have it in your hands? If you can’t grasp flowers, consider a pinned corsage on your dress. Can’t wear a ring? Find a necklace that you can put a ring on or a necklace that will symbolize your marriage.
  5. Call everywhere to see if they are handicap accessible, especially in the areas that you will need to access. You don’t want any unpleasant surprises.
  6. Accept help! Have an envelope writing party and have snacks or food for everyone that helps out. Don’t be afraid to ask for help either. The worst they can say is no! This applies to every part of your wedding.
  7. Find vendors that will work with you and that will accommodate your needs. You are paying them for their services, don’t settle!
  8. Find bridesmaid dresses and suits with plenty of time to spare. Everyone has at least one flaky bridesmaid/groomsman that will wait until the last second to get what they need to get.
  9. If you’re going on a honeymoon, try to find somewhere that you think your body can handle the best. Can’t handle the feeling of sand on a beach? Don’t do a beach resort. Can’t have anyone bump you? Don’t pick a popular tourist destination during tourist season.

You Know You’re a Hospital Kid When… Life with CRPS

What is it like being a hospital kid with CRPS? Read Melissa's article and see if you can relate to her CRPS/RSD adventuresWritten by Guest Blogger Melissa Lovitz

This piece about being a hospital kid, especially one with CRPS/RSD, was originally posted on The Mighty.

When you’re a spoonie you spend a lot of time in the hospital. About 10 years ago, I spent more than 10 cumulative weeks of my freshman year of high school either in the hospital or at doctors’ appointments. During my middle and high school years, my experiences with reflex sympathetic dystrophy syndrome (or CRPS) landed me two six-week stays at Children’s Hospital of Philadelphia, two 10-day stays at Boston Children’s Hospital, and more doctors’ appointments than I can realistically count.

When I was in high school, most of my inside jokes were with physicians who liked to dance every morning. I got excited about making toga costumes with hospital sheets and having photo shoots with the other girls in the clinic. My main priority, aside from going home, was befriending the nurses so they would steal pillow cases for us to tie dye or extra ice cream cups at lunch.

Every so often I reminisce with a few close friends, who I met in the hospital, about out “those days.” Many of us are in remission or have found ways to cope with our illnesses outside of frequent appointments and emergencies. Others are still struggling, but have an amazing network of family, friends, and doctors who are there to support them every moment of their journey.

There’s something special and unifying about being a “hospital kid.” There’s something comforting about knowing that other people “get it.” There’s a relief that comes with not having to explain yourself. There’s a sensation of belonging that is revitalized every time I text, “I just smelled Purell” and get a response that reads, “OMG yesss” or “I know what you mean.”

When I was talking with my friends, I realized we all had fond memories of our nurses knowing our favorite shows, what we were studying in school, or which activities we were excited to go back to! We all had jokes about which arms or veins were best for blood draws and IV’s. We were all confident we could navigate the hospital so well, perhaps better than our own towns, that we could give directions to other people even to this day; most importantly we knew approximately five ways to get to the cafeteria!

So, when I asked my friends to respond to the phrase, “You know you’re a hospital kid when…” here’s what they said:

You know you’re a hospital kid when… 

1. Your biggest allies are the nurses.

2. You almost always anticipate that your plans will fall through because of an unexpected trip to the ER (or an appointment you forgot about).

3. Random things like the smell of Purell, concrete staircases, or writing your order with a golf pencil at restaurants remind you of the hospital.

4. Your best friends are people you met in the hospital, and over a decade later you still keep in touch.

5. You laugh whenever someone asks you to rate your pain on a scale of one to 10.

6. You’ve perfected realizing when someone isn’t really “fine” because you too perfected looking “fine” when you’re not.

7. Even though it’s a bit twisted, you get excited if you learn someone has the same condition as you.

8. Getting blood drawn or an IV is “no biggie.”

9. You watch “Grey’s Anatomy” and scream at the TV because that would never happen in real life!

10. Your hospital stories are so intense or dramatic that most people don’t believe you or think you’re exaggerating (e.g., “I relearned how to walk twice by doing PT/OT for eight hours a day for six weeks – twice! It was more difficult than the conditioning we do at gymnastics practice.”)

11. You can explain the spoon theory with more accuracy and detail than your actual homework!

If you ask most hospital kids, they’ll say their upbringing inside the walls of the hospital was definitely not traditional! They’ll probably tell you that they’d never wish chronic illness on anyone, but in hindsight they can’t imagine their lives without their stories of medical struggles and victories. Our illnesses don’t have to define us, but the definitely shape who we are and how we encounter the world.

Chronic Pain and Family Responsiveness

Chronic pain and family responsiveness image. How can caregiving be different with different ages for CRPS/RSD?Written by Laura Lustig, PhD for the RSDSA blog.

Originally Titled: “Chronic Pain And Family Responsiveness: Stories Of Courage In The Face Of Unimagined Change.”

There are many types of chronic pain experienced by people all over the world, many of which have been well recognized and have treatment regimens that are prescribed regularly by doctors and allied professionals. To categorize the pain of Reflex Sympathetic Dystrophy (alternately referred to as Complex Regional Pain Syndrome) as chronic pain is almost a disservice.

To begin with, people suffering from this syndrome go through indescribable pain that can strike without warning and become unmanageable. Then, there is the agony of waiting for someone to diagnose it correctly because, unlike so many other types of chronic pain, it is not commonly recognized until it grows in intensity. Even then, it is still not well understood.

All of this as preamble is known to those of you out there who are experiencing the pain, and to your families who are suffering the mental anguish of going from pillar-to-post trying to alleviate your family member’s pain.  My hope is that in reading my thoughts and suggestions, you will respond and tell your stories, your actions toward relief and your questions, through me to others like you and thus become a support team for each other. Your stories should not be silent and unnoticed; they should reach the ears of medical professionals and researchers.

But to any who have not experienced personally the anguish described above, those of you who are friends, relatives, neighbors, or associates of these families- my hope is that this article will better acquaint you with what they are going through in the hopes you find incentive for assisting them in whatever ways you can offer. Even the common family duties of everyday life are disturbed by the disabling effects of this syndrome.

The Role of Caregivers: The term “caregiver” has a multitude of meanings. It can range from a service provider taking care of a disabled person, to a parent, a spouse, a sibling, a son or daughter, or other relative taking care of the individual affected with CRPS. Each of these roles are different by the nature of the category and each can vary within the same category for individual families. It has life-changing consequences. Complicating things even more, many members of the same family not in a caretaking role may have their lives changed because of their relationships within the family.

So, how does one describe the duties of a caregiver in these situations? The best I can come up with is to compare them to the normative roles of individual family members and the variations that may occur in those roles.

For example, a mother and father of a fortunate child who is healthy of mind and body are expected to nurture and train their child for increasingly independent life as he/she grows. Along the way, their needs as spouses and individuals can be attended to with increasing confidence that they will, one day, launch Junior and move onto, or continue, their own interests and relationship needs. This paradigm cannot help but be hindered when a child has more dependency and critical care needs. The question is: can a parent of this child eventually reach normative life functions? Can the child eventually find ways of becoming independent? There is no general or right answer to this question.  Each family has to find their own way through the morass they encounter. It is all too common to deal with day-to-day issues and let time go by without thinking further about the future until it is upon you. But what is important is the recognition that your roles have been modified so that better planning can occur.

At this point, I would like to further identify myself and the role I took as a caregiver in my own family, because I faced a similar question as I raised my physically and mentally challenged son. I went day-by-day, doing everything I could for him: researching his condition, talking to doctors, going to clinics in the hope of finding diverse professionals who might lend their composite expertise for the medical, psychological, social and educational needs of my son. I think that in the back of my mind, not fully consciously thought out, I was looking toward a future in which he could be successfully launched toward a life of his own, and not remain in my caregiving role for the rest of my life. I have other children, and I always wonder if I gave each of them enough attention, not to mention my husband. Eventually, I was fortunate enough for my son to be moved to a life of his own, certainly not an independent one – he will never achieve that – but, at least a life in which he has contentment, work, and home life that approaches the normative environment I wanted for him.

I went through agony, crises, family troubles, and roadblocks within the social and educational environment that may, in some ways, be similar to what many of you are going through. At some point, I found myself asking who I was before and what I became after my experiences with my son Jesse. I wonder how many of you have thought about that. If anyone wishes to learn more about my story, my book “Attics of the Mind: The Story of Mother and Her Special Son,”  is available online or at Amazon.com. I was fortunate, also, to have 2 older children who love their brother and have taken courageous roles in helping him. Their story is also available online. But, I could not have done it alone, which is why I emphasize the importance to each of you of reaching each other and some helping professionals along the way. Your solutions are not only medical; they are psychological, social, educational, and ongoing. There is always one more thing to do, I found, and you may also.

But what of the role taken by a spouse? One hesitates to call this a caretaker role, though it may end up that way. In the so-called normative environment, one marries with the idea that there will be love, family, a division of tasks in the everyday life, a companion to share the good times and bad times. The readjustment becomes obvious when one spouse is hit with CRPS. How much adjustment is dependent on the state of the illness, and more than this, the understandings between the spouses of their responsibilities to each other. This is an even more difficult readjustment than one borne out of a natural caregiving responsibility of parent to child. In each case, the spouses will face a complete change in roles. Yet here again, the backdrop of attempts on the part of both spouses to approximate as normal an environment as possible is most likely to result in more harmony between them.

In some cases, it is a sibling who may find him or herself in the role of caregiver? Here, a whole life may be unintentionally upended. He or she may have the least expectation of anything in the natural course of events to prepare for this new role. It leaves many more questions than answers. For example, where does a new companion fit in; what of the expectations for career building and family development? How much does one continue moving in these directions when the needs of the CRPS brother or sister is suffering? If there are several siblings involved, the complications can cause rifts between them. Who takes the major role; is it divided equally; are there explanations one or more siblings give for taking a lesser role? Again, no easy answers.

I haven’t mentioned the reverse order of child to parent. In the ordinary course of events, children are expected to take some responsibility for providing a basis of helping their aging parent who may become ill. There are many agencies and living arrangements which can be found to provide care for the aged, but not so many for the parent who may not be elderly but who is suffering from CRPS. This condition may exhaust or go beyond the abilities of nursing care to know what to do or to provide the amount of care needed.

So, in all of these cases, what does it mean to do a good job. A caregiver can be thrown off his or her balance when confronted with the extraordinary problems involved. Even the best of care may seem insufficient – with attendant guilt feelings, loss of confidence, and eventually, despair.

In all of these cases, it is vitally important that people in the caregiver role find other supportive help. Talking to a therapist and other professionals, intimate friends and medical people can help create better balanced judgment and relief. It is vitally important that caregivers not become stressed out to the point that their own health is affected.

I know I have raised many more questions than answers. But, I feel confident that in each family there are strengths that can be found and resources to use. Each of you out there has your own story. Many of you can help with the solutions you have found, the resources you know of, and the empathy you can lend to each other. Together much can be accomplished; alone the troubles you face can feel impenetrable.

If you would like to share your story or have any suggestions for others involved with caregiving, please email RSDSA at [email protected]

How RSD Potentially Stole My Dreams – Cope With RSD/CRPS

Tatiana blogs about how RSD CRPS stole her dreams but also about how to cope with RSD CRPSWritten by Tatiana for the RSDSA blog.

Being diagnosed with RSD/CRPS is challenging at any age. Being young and going through the challenges of school can make it hard to cope for children and teenagers. Tatiana writes about her experience being diagnosed with RSD/CRPS, her stolen dreams, and how she has ultimately learned how to cope.

When I was a young girl, only five years old, I had crazy dreams. Every single time someone asked me what I wanted to be when I grew up, I’d smile, and tell them that I was going to be a dancer. A ballet dancer, to be specific, though I often dreamed of ballroom dancing. Getting to wear a ballgown, heels, and having a handsome gentleman’s hands draped on my waist, as I twirled around to music over and over was beyond exciting to me. I yearned for it. I lusted for it. Something I didn’t know when I was five years old was that the daydream would have ended sooner, rather than later. I did not know that by the time I’d turn sixteen, I’d already be living with a chronic illness.

Something that almost everybody knows about growing up is that it’s hard. Sometimes, it may even seem impossible. You may even feel like you just can’t do it. Between juggling school, and just everyday life, it can be hectic and stressful. Just imagine what it’s like to go through your day with pain so horrible, you’d wish to saw off one of your limbs, in hopes of finding some sort of relief. Imagine what it must feel like to have various parts of you set on fire, but realize that this fire cannot burn out, no matter how much water thrown on it, no matter how much ice you throw into the mixture. So, you want to fight fire with fire, and throw in some heat? I’m sorry to tell you this, but that’s not necessarily going to help you either. Reflex Sympathetic Dystrophy, now known as Chronic [Complex] Regional Pain Syndrome, is an autoimmune disease that attacks the sympathetic nervous system. It causes the brain to constantly send pain signals to different parts of the body, but the pain that it causes is not as simple as a muscle ache or a simple sprain. Reflex Sympathetic Dystrophy causes a burning pain that can be brought to a point in which one cannot take it anymore. Many people with RSD/CRPS turn to suicide as their only option, leading RSD/CRPS to also have earned the nickname of “The Suicide Disease.” Unfortunately, although I am just a child, and I am trying to grow up, although I am trying to make something of my life and finish school to move onto college, and [find] my place in the real world, I also have the burden of RSD/CRPS to carry with me.
I started to experience my pain six years ago, when I slowly lost my ability to even just walk. I had previously sprained both of my ankles, and had finally recovered. Or at least I thought. At just ten years old, I was able to say that I could watch all of my friends running around in the school yard, but I couldn’t run after them. It hurt me to a point in which the pain resembled walking on shards of glass. As a clumsy child, I, unfortunately, had the joys of knowing what that felt like. And with that I spent an hour in the podiatrist’s office, being told that it was simply a case of plantar fascitis, and that I simply needed orthotics. And so, it was orthotics that I received. I didn’t know that these would not solve my problem, though. I was unaware that my pain would come and go as it pleased, and leave me practically crippled, from time to time.

On my fourteenth birthday, I had the joy of returning to the podiatrist, after being unable to walk again. This time, I was told that I had tendinitis, and a bruised bone. I was given a note that stated for no gym until further notice and an array of braces to wear on my ankles. At that point in time, friends of mine began to question me. They’d ask me questions that not even I could answer at that point. “Tatiana, what is wrong with you?” “Dude, you’ve been out of gym for eight months, when are you coming back?” etc. For a fourteen year old, being out of gym for more than eight weeks alone was a huge deal. And when teachers started to question me and my walking boot, that I was in to prevent pressure from being put on my foot, I had no clue what to say. But as before, my pain went away for a while.

September of 2015 came around, and I was in Florida with my family, trying to have fun, and enjoy myself in the various theme parks. I’ll never forget the night that we were simply walking through Epcot, and it was as if someone had literally torched my foot. I brushed it off, thinking it was just muscle soreness, from walking around way too much, without sitting. Everyone around me was having fun, and enjoying themselves. I didn’t want to ruin the trip. So, I kept my mouth shut until the end, when all of the walking, moving, and various rides jerking my body back and forth finally took a toll on me. Throughout our plane ride home, the turbulence brought me enough pain to make me want to crawl under a rock and never leave that sanctuary that that rock would’ve brought me. For days following our return, I stayed in bed and cried. I was in so much pain and discomfort- there was nothing that I did that would alleviate it. Another trip to the podiatrist, more false hope, and more joy stripped from my already stressful life. I was missing so much from my sophomore year of high school. I was missing out on everything my friends were doing, and the places they were going. I was at a point where I could barely even do the work I was given from my teachers. I was confined to my bed, living a painful life, full of depression and tears. Every single time that I attempted to leave my house to do something, the pain crept up on my shoulder, as if it were a ghost that was dying to tease me to no end, despite the fact that I could never catch it no matter how hard I tried. My pain to me was what a little black cloud was to a depressed person. It followed me around to no end. Toying with my emotions, making me hate myself more and more, with the less and less that I was able to do.
After missing twenty three days of school, and being out of gym for two and a half years, nobody believed me anymore. My friends began to doubt me, my family, even my own mother doubted me. Though my doctor always told me that she believed me, I started to doubt myself. I started to think that this pain was just a figment of my imagination. Something that my brain decided to make up because it had nothing better to do with itself. And that, that dragged me down into this depression that I was unsure I’d ever survive. I built up my walls and locked everyone out, including those closest to me. I no longer wanted to know anybody. I’d look in the mirror and see this broken, tattered body, looking back at me. And when I’d go to turn away, I’d whisper to the soul trapped behind the shards of glass, “You are such a liar.” I was breaking my own heart and I didn’t know if I could save myself.

In April of 2016, I could no longer move from the waist up. My ankles, believe me, they were just shot… I couldn’t bend down to grab a pen that fell from my bag, I couldn’t walk up two stairs, I couldn’t even sit up to do simple tasks such as drinking a tiny bit of water. I felt the weight of the world on my shoulders. I was falling behind in school and in life. Yes, I was surviving life, but was I really living it? Not at all! I’d drag myself from my bed every single morning, and force myself to get up, to go to school, where I’d suffer for 8 hours, only to come home and cry myself to sleep. Everywhere I went, I received pitiful glances and sad stares from people who knew me and the happy person that I once was. I begged the neurologist for answers. For a solution. For anything other than pity. And finally, after 11 MRIs, 8 X-Rays, and 3 C-T Scans, I was confronted with the fact that I have Complex Regional Pain Syndrome. By then, after much research, and suggestions from doctors, I had known what CRPS/RSD was. And I knew that it was one of the most painful conditions out there. At the end of the day though, the real question was, could I actually live with this?

I am almost seventeen now, and life is hard. Life is very hard. I have to work ten times harder to complete simple tasks than most people do. Getting myself dressed is an accomplishment alone. Occasionally, when I do have an endless amount of bad days, I do fall behind in school, and it is as if I am drowning in school work and the fact that I feel the need to impress my family. I think one of the most complicated things for me, though, is trying to keep up with my friends and people my age. Sometimes, I feel like an eighty year old woman, trapped in the body of a seventeen year old girl. Yes, I have friends. Yes, they have lives. They go out, they have fun. But I don’t always want to go out. I always want to have fun, but from time to time the pain becomes unbearable, to a point in which I cannot even go to school. Of course, people question me or accuse me of being lazy, but I know for a fact that I am not that at all.

Another huge problem about being seventeen and having CRPS/RSD is painkillers. I, like most patients with my illness, depend on painkillers to live a somewhat decent life. But, with the opioid epidemic, and me being just a teenager, people often accuse me of being a drug addict or a drug dealer. My question for the people who jump to conclusions would be, just who wants to take more than fifty pills per week? I take eight pills every single day, just to live a sufficient life. That’s fifty four pills per week. Do people actually find enjoyment from that? Because I don’t. I never could. Something that people don’t realize is that aside from naltrexone, I don’t take anything crazy. I take Lyrica, and if needed, gabapentin. It’s not like I’m popping oxy every hour on the hour. This is really a huge misconception, that I honestly hope is cleared up soon.

Despite all these struggles with people and their opinions, a topic that most teenage CRPS/RSD patients will not touch on is the struggle with themselves. Despite my hope, despite my dreams, my mind is a battlefield and I am constantly at war with myself. Being seventeen and struggling with such a chronic illness leads me to have such hateful thoughts towards myself. My mind is constantly pondering why I still have to be here, if I’m only going to suffer. The second I have a flare, I freak out, and wonder if I will ever find a lover who will care about me, despite my disease, despite the fact that it leaves me paralyzed with pain, and often, in tears. This is the part where my CRPS/RSD would want me to tell you that after this, I am giving up. That I refuse to go on. This is the part where it wants me to tell you that this is the end, that I cannot win this fight. However, I am not going to give that obnoxious ghost what it wants. I am the author of this story, and I refuse to lose this fight. I have been in therapy, working on my emotions affiliated with my illness for several months now. Finally, I have learned to love myself. I have learned to ignore what people have to say. I have learned to never give in, and to never give up. The second you allow it to win, is the second that you lose yourself. Although it might be hard, although this body may be cursed with such a painful disorder, I have decided to throw away that little dark cloud, and see the light again.

At the end of the day, no matter what happens, no matter how bad you feel, or how horrific your pain is, all that matters is you. All that matters is you and the fact that you can win this fight, no matter how hard it seems. Your pain tomorrow will not be as bad as the pain that you have felt today. Your life is not going to be horrible forever. Your initials are not RSD or CRPS. And all of us fighting this horrid disease, no matter how young or old, need to know that life does not end with RSD. This is only the start of my journey, and I am terrified for what is to come, but I am ready, and I am stronger than ever. Life starts now.

If you are feeling like harming yourself, feeling suicidal, or know someone that is feeling that way, please call the National Suicide Prevention Lifeline at 1-800-273-8255 or visit their website