Category: RSDS General Info

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!

By Guest Blogger Melissa Lanty

Sometimes, all of the positive, wishful thinking blogs can be too much, especially for members of the community that are feeling frustrated. Melissa is here to let you know that you are allowed to be frustrated and aggravated and that everything is not always sunshine and rainbows in the world of CRPS

If you are looking for the positive, inspirational story then I suggest you stop reading, this isn’t it.  I am out of examples of ways I’ve overcome this illness, I have no “bright side” to share today.  Today I am mourning, today I grieve.  I don’t want the positive encouragement, I don’t want the pity, I just want you to understand that I’m never going to be able to move on, or get over the girl I was before this, the girl I could’ve been if this never happened to me.  Some days it’ll be easier for me to accept the sick version of me, some days I might even be great, but today just isn’t one of those days and that needs to be okay too.

I watch others thrive and excel doing the things I used to love, the things I used to be able to do.  Knowing I can never do those things anymore.  It hurts. You try to give me hope and tell me “never say never” that hurts even more.  That girl is gone, she can’t come back. Telling me to “be positive”, saying “it could be worse”, and to “look on the bright side”.  So, I force and smile and agree knowing that makes you feel better, and really, it’s just made me feel worse.  I know you want me to be okay, I know you care, I love you for that I do, but sometimes I just need to be sad, I just need to grieve, and mourn.  I’m not the girl I used to be, CRPS has stolen the life I could have, should have had.  Most days I put on my brave face and I face the world, but today I just can’t.

I need you to know that it’s okay for me to feel this way.  I need you to know there is nothing you can do.  I don’t need to be shielded, pitied, or consoled.  I don’t need positive reinforcement or suggestions about what new meds or therapies I should try.  I just need you to say, “you’re right, this disease sucks” and let me cry.  You don’t have to try to make me feel better, you don’t need to cheer me up, it won’t work anyway, and I just need to get this out.  I need to grieve and mourn. Maybe tomorrow I’ll be able to put my brave face back on.  Maybe tomorrow I’ll have some positive vibes to share, but today isn’t one of those days.

Written by Samantha Anderson

Fashion and Complex Regional Pain Syndrome don’t always walk hand in hand. Trying to find clothing that is comfortable can be a task. This article features primarily women’s clothing brands (although some fit both), but stay tuned for a men’s clothing article!

Finding comfortable clothing can be a hassle for every day people. Adding Complex Regional Pain Syndrome into the equation can complicate matters even more. Every person with CRPS is so different. Some people need clothing that does not move around very much and stays close to the skin, as the movement of the fabric causes pain. Others cannot wear tight clothing and need things that are more flowy so they are not restricted and there is not constant stimulation happening. Then, add in whether someone has upper, lower, or full body Complex Regional Pain Syndrome and more issues present themselves. Some brands of clothing are better for tops whereas others may be better for bottoms. Then, some brands are more female oriented instead of male oriented. It can be hard to determine what is best.

As someone that started with lower body Complex Regional Pain Syndrome, but is now facing upper body CRPS 11 years later, I have had a lot of trial and error with clothing. For me, every day is different. Sometimes, I need clothing that fits close to my skin. Other days, I need the loosest clothing possible. This list of top 5 brands of clothing is my own opinion based on my life with Complex Regional Pain Syndrome. I included some information about pricing and some of the pros and cons as well!

1. LuLaRoe

LuLaRoe is a clothing company known for their “buttery soft” leggings. I had heard many of my friends with Complex Regional Pain Syndrome talk about this company, so I decided to check them out. After I ordered my first pair of leggings, I fell in love. I have quite a collection now. They are super soft and are great for the days I cannot handle flowy fabric. Their tops are also great and come in a variety of styles. The Classic T isn’t tight around the waist or arms, but is flattering. The Perfect T is very flowy and can be styled in a variety of ways. Then there are tops like the Lynnae, which is a long-sleeved version of the Classic T, and the Gigi which is a tighter fitting shirt. Most consultants will tell you about the fabric of the item and will detail how soft it is if you ask. I was never one for patterns (I love black clothing), but this also helped me branch out into different colors and patterns in my wardrobe.

Cost: Leggings are generally $25 and tops can vary from $28-$45.

Pros: Sizes offered go smaller than XXS (you can order kids sizes) and go up to 3XL. Some of the 3XLs are actually the equivalent to 5XL. There are a lot of different styles that allow you to optimize your comfort level. The items are so comfortable and versatile. There are also men’s styles and “dressy” styles available.

Cons: Items can only be bought on Facebook or in person, as that is the way that LuLaRoe sells their products. Products are a little pricey and aren’t supposed to be machine washed.

2. C9 by Champion

C9 by Champion was a bit of a happy accident for me. I was looking for a top to wear to an appointment, which needed to be like a workout top. I then found C9 at Target (my home away from home). These items were a lot like Under Armor without the steep pricing. Everything was pretty reasonable. There were tops, sweatshirts, and pants for men and women. The tops are relatively silky, which is a nice feel compared to some other fabrics (the best it can feel when you’re in pain). These are great for hanging around the house or going to appointments. If you can do basic workouts, these are also great for that.

Cost: Price vary from about $7-$50 (higher prices for nice jackets).

Pros: Easy to access. Target offers deals on these products on a regular basis (online, too). There are a variety of colors and sizes. Very lightweight.

Cons: Sizing can vary from item to item and there are not any “dressier” items for more formal occasions.

3. Gildan

A lot of people own Gildan items without knowing it. Gildan is generally one of the main providers for screen printers. Event shirts are normally from this brand and get softer with each wash. This brand is also sold at Walmart and on Amazon. They offer a great variety of products, from t-shirts to sweatpants. I have a lot of event and concert t-shirts, which I wear more frequently than most of my clothes. It is almost like the fabric molds to your body as time goes on. It is also a pretty cheap option, even if you are ordering custom shirts from websites like Teespring.

Cost: Varies, but generally under $25

Pros: Affordable clothing. Gets softer when it is washed. A variety of different looks and customization options.

Cons: Cheaper shirts do not always last as long, depending on how well it was made. Fit can vary from item to item. Starts off a little itchy.

4. Victoria’s Secret/Pink

Victoria’s Secret has branched out to sell much more than undergarments. They offer a variety of clothing including t-shirts, sweatpants, sweatshirts, and yoga pants. Their Pink line features some Sherpa lined items and soft, loose clothing. Their Sport line offers tighter, stretchy clothing that keeps the sweat away. So, whether you need something flowy or something tight, Victoria’s Secret can fit your needs. They are generally pretty true to size, although their size variety seems to be XS to XL. I am a lover of all things fleece and Sherpa, so this line is my dream.

Cost: Pricy, generally upwards of $25 and averaging at $50.

Pros: Great variety. Soft or stretchy fabrics. Variety of color options. Easy to order online or in store.

Cons: Generally women’s only clothing. Expensive. Brand is often in large letters on the clothing. Size range.

5. Chin Up Apparel

I stumbled upon Chin Up Apparel as a happy accident. I had a favorite shirt that I bought at a local store and wanted to find more of them. I looked at the tag, which was printed on the shirt instead of an itchy tag, and it said Chin Up. At the time, I was not aware that this was an entire line of items. On their website, the declare themselves to be a workout line. They have all different styles of t-shirts and sweatshirts. These items always have fun sayings on them, which can really brighten a day. For example, one of the baseball style tees on their site says: “After This We’re Getting Tacos,” which truly spoke to my heart. The material is generally very light and airy, which is nice for the days where clothing is just so painful that you’d rather wear nothing. This is a nice alternative. Plus, the sayings on the shirt can either tell people to back off or can make you smile with the silliness. I just wish they made pants. I should pitch my ideas.

Cost: $19.95 to $37 (sweatshirts are the $37 items).

Pros: Funny sayings cheer up the gloomiest of days. Sizes seem to be flexible. Material is soft and airy. Can be found in stores or online.

Cons: Limited men’s items. Can be considered pricey. Some of the sayings may not fit your life.

 

Clothing can be stressful. While we joke that it takes me a while to get dressed because I’m indecisive about what to wear, I am generally trying to gauge my level of comfort. Complex Regional Pain Syndrome and clothing may not be the best of friends, but these brands can at least make them acquaintances. I hope you are able to try out some of these brands and that they bring you the most comfort possible. I will continue to research some men’s fashion and try it out to tell you about the comfort of other brands to maybe write a follow up to this one! Good luck and rock what you wear!

Please consider making a donation to RSDSA today!

Written by Samantha Anderson for the RSDSA blog.

Winter has arrived and is hitting many areas of this country hard. Temperatures are low, snow is coming, and many people with CRPS are trying to figure out how they can stay entertained without further aggravating their CRPS.

For many people with CRPS, winter is not a friend of theirs. Cold air and storms can make pain levels go up and can really put a damper on someone’s day. It can be a quite unfortunate occurrence, especially for anyone that loved to play in the snow pre-CRPS. Snowy weather and storms do not have to mean that the fun ends. There are indoor activities that you can do to keep yourself entertained this winter (and during any stormy season). While not all of these ideas are flare-friendly, they may be little goals that you can reach as you go. Some of these activities may be more possible for people with lower body CRPS versus upper body and vice versa.

1. Learn a crafty hobby.

CRPS has left me with a lot of time on my hands. While my arms and wrists are impacted by CRPS (although I’m primarily affected in my lower body), I’ve taken up crocheting. YouTube offers a massive amount of tutorials. From blankets to hats and even sweaters, you can make it all. It takes a little while to learn, but it turns into a lot of fun. If you are looking to give back, some hospitals look for hats for newborns and some shelters look for blankets. You can always donate your creations. You can also make them for yourself or sell them on Etsy. The possibilities are endless. Knitting is in the same family and some people consider it to be much easier than crocheting. The possibilities are endless.

2. Do a jigsaw puzzle.

I feel as though appreciation for puzzles has decreased dramatically over the years. I still love a good puzzle. There are puzzles in all different categories, from animals to movies. You can find one to fit your interests. These consume some time and allow you to complete them while staying warm under a blanket or within your house. There are also mats that you can purchase to do your puzzle on that allow you to roll it up in between puzzle sessions. If you love your puzzle, you can glue it all together to make wall art for your house. That’s a win-win!

3. Become a word expert or a business tycoon.

No schooling is required for this one. Board games are a great solution to boredom that comes as the result of being cooped up in the house. There are game for two people all the way to twenty people. My personal favorite is Monopoly, which I played for four hours on New Year’s Eve. Classic board games are a great way to keep busy. New games are being created every day and more are being targeted towards adults instead of children. Host a friendly competition to see who can be the very best.

4. Create your own Food Network Show.

One of my favorite television networks is Food Network. I’m constantly amazed by the cakes that some people create and the ingredients people can use to create a full meal. Now, there are shows featuring children under 10 and they make me feel completely inadequate, but I digress. Shows like Chopped show that meals can be made with the most random ingredients. Play your own version of Chopped by picking four random ingredients from your fridge/pantry to work with (or have someone pick it for you). See what you can create. Or, test out some recipes that the stars of Food Network have tried out. If nothing else, you’ll end up with something great to eat!

5. Play online games

While many people are huge fans of video games, they can be a lot of fun. There are online versions of classic games, such as Scrabble and Monopoly, on different websites. Then, if you own a gaming console, you can play games on it to keep busy. Many games even offer the ability to play against others online. Video games have been shown to improve reactions times and mental sharpness (crazy, right?) So, really you’re just strengthening your brain.

6. Write about something.

Make yourself a nice cup of tea, coffee, or hot chocolate and curl up with a journal or a laptop. Then, just write. Whether you want to write about your life and keep it as a diary, think up a poem, write a blog, or start writing a story that you hope to turn into a book, this can be a great outlet for creativity. If you write a CRPS related blog and you want to share it, please send it our way for The Tuesday Burn! We also love to hear when members of our community publish books.

7. Take pictures.

Document daily life through pictures. Smart phone cameras can be just as good as some digital cameras. DSLR cameras can take some breathtaking images. Whether you want to show a boiling tea pot or want to take a photo out the window of a bird on a branch, there are ways to find the beauty in everything through photography. You may even surprise yourself when you’re snapping away. It may help you find more beauty in every moment.

8. Color or draw and let your inner child soar

Coloring and drawing are great pastimes that do not require any kind of outdoor interaction. Grab some colored pencils and a coloring book (or drawing pad) and go to town. More and more coloring books are becoming adult-centered and help with meditation and relaxation. Creative things can make you feel happier, even if the weather outside is frightful.

9. Sing

Not all of us were blessed with pipes that compare to Adele or Josh Groban, but that does not have to stop you from singing. Make up your own song, sing one that you love, even turn the music on low and sing along with it. Four songs can take up 20 minutes of time. It can make time go by quickly. Singing is also linked to more positive emotions and is considered a release of stress. Sing it loud and proud, even if you sound like William Hung from American Idol.

10. Binge-watch a new television series

With Netflix, Hulu, and on demand television shows, it can be hard to select a new show to watch. Maybe there is a show that you have always heard about, but never got to watch. Or there may be a show you started and never finished. Take to the television to watch all of the episodes of that show. See what the buzz is about and make your predictions for the show, even if it has been over for a decade or two. This can be a great way to waste some time while staying warm and out of the bitter cold beyond the door.

11. Create a fantasy team

If you like sports, you may already be a part of a fantasy football or baseball league. Have your own fun and create your own fantasy teams and rules for other sports or for the off-season. In my family, we have a fantasy league running for the NHL. We focus it around our team and see how many points we can get each game. At the end of the season, we announce the winner. We also have a fantasy Grammy, Emmy, VMA, AMA, and Tony’s game. We predict the winners and see who can get the most correct. We collect responses from some of our friends and family and keep track of who predicted the most wins accurately. Sometimes we offer prizes, but other times it is just bragging rights. It’s tons of fun.

What you do on your cold or snowy days is up to you. While you may have to stay warm and away from the cold temperatures, you can still have a good time. What do you do to keep yourself entertained and warm when the weather is less than favorable?

By Samantha Anderson for the RSDSA blog.

2018 is coming up quickly. With a new year, everyone is thinking of restarting and having a better year. For those of us with CRPS, we’re looking for hope while also looking to improve our lives through a new years resolution. Let’s talk about the changes we can make.

There are typically two types of people in this world. There are those that boast “New Year, new me” at the strike of midnight on January 1, and then there are those that roll their eyes and say that a new year is only a change of numbers. I, for one, am in between those people. I’m not an optimist and I’m not a pessimist. I like think of myself as a Samanthaist. Regardless, 2018 is coming up quickly. 2017 was quite a year. Some will say it was the best year, some will say it was the worst, and others will say it was not particularly memorable. My thought is I want something positively memorable every year, even through the bad. So, how can we all move towards making our 2018 a year that is positively memorable?

With CRPS, we may not be able to set the typical resolutions for ourselves. For example, we may not be able to say we want to go to the gym every day or run a marathon this year. But, that is okay. Being normal is vastly overrated (if you can name that movie, you’re awesome). We can set “small” goals for ourselves. I say “small” because that is in the eye of the beholder. You can set a number of goal that lead to one larger goal, or you can set a goal that others may consider small, but that you may consider monumental. This could be a goal of eating better, educating others on CRPS, watching less television, having family time once a week. It is important for us to have goals. Having something to work towards can make us feel good. We may have to overcome more setbacks than a “normal” person, but we are all strong. Yes, I know sometimes it is so hard to feel strong, but you are strong. You can reach these goals you set for yourself. Just make them reasonable!

Personally, my New Years Resolution is to be happier. What does this mean? To find the things that make me happy and engage in them. Seeing my nieces and nephews more is a part of that, as they do nothing but make me laugh. Getting out of the house more and getting fresh air while I take my camera out for a spin could help as well. Some days, these things may not be possible. That’s when I can find the little things that make me happy. Cuddling with my dog, playing Monopoly with my husband, and coloring or crocheting in my alone time can help fill the times when I cannot be as active as I would like. It also means doing some hard work of getting rid of the things that bring me down. I learned in 2017 that the people that bring you down, especially the ones that bring you down for having Complex Regional Pain Syndrome, are not worth the tears or frustration.

How can you set a resolution that is appropriate for you? Take out a piece of paper. Write a list of the top 5-10 things that happened to you this year. Write 3 things that you wished had happened in 2017. Write down 2 dreams for the future. Use those as a guide to determine even a small action that you can do to set your New Year’s Resolution, which will be your 1 goal. If the goal is huge, break it down into smaller steps and try to accomplish those through the year. Maybe your big goal is to go on a trip. You can start saving, book hotels and transportation, plan an itinerary that works with your body, and more as you go through the year. Creating smaller goals that lead up to your big resolution will help everything be more manageable and may reduce stress. But there’s nothing wrong if you can’t complete your New Years resolution this year. It’s just something to work towards.

Here at RSDSA, we have goals, too. We want to raise more awareness through the country (and the world) about CRPS. We want to make sure that we reach more people in the CRPS community that may not have heard of us before. RSDSA wants to make sure resources are available to all those affected by Complex Regional Pain Syndrome. Our publications can be helpful in a variety of situations, including hospital visits. RSDSA wants to support members of the CRPS community to make sure they know that they are strong and that there is hope. This goes for caregivers as well. Having hope is so important for all of us. We also strive to continue to raise funds to help us reach our various initiatives and to help fund research for better treatments. To do this, we need your help. Encourage friends and family to make donations, hold a fundraising event, and event participate in one of our conferences. You are the key to our success.

We hope that 2018 brings all of our friends with Complex Regional Pain Syndrome lowered pain levels, great feelings of support, and happiness.

Please consider making a donation to RSDSA today!

Compiled by Samantha Anderson for the RSDSA blog.

Thanksgiving can be a particularly difficult time for people living with CRPS. The holidays in general are stressful. Whether you are hosting dinner at your house or have to travel to a relative’s house, it can be stressful. However, Thanksgiving is a wonderful part of the year, as we get to reflect on why we are thankful. Sometimes, it can be difficult to be thankful when you are living with the pain associated with CRPS. But, there is always at least one reason.

We asked members of our wonderful RSDSA community to let us know what they are thankful for this year. We received an overwhelming amount of responses. After reviewing everyone’s amazing submissions, we wanted to feature some of them in the blog. We hope that blogs like this one remind you to reflect back on the positive elements of your life. There is good in everything, sometimes you just have to search. I understand this first hand, as I am a member of the CRPS community. What am I thankful for this year? I am thankful for having such a strong, powerful community that supports one another and that is so determined to make a difference. I am thankful for the amazing support system I have, from my husband, to my mom, and the family I got to choose. I am thankful for the healing power of animals. I am thankful for each and every one of you! Here are some of the things your fellow community members are thankful for. Enjoy!

“I am thankful for the people who have adjusted to the CRPS with me” -Heather P.

“I’m thankful for my eternal salvation and for God who gives me just enough strength to face each day and for all who walk with me.” -Joy K.

“I am thankful for CRPS making me the strongest I have ever had to be and learning that I can still smile through all of this pain.” -Brenda B.

“[I am thankful for] a roof over my head, food in the cupboard, and my little dog who never leaves my side.” -Rochelle O.

“[I am thankful] for RSD friends that I would have never met but for this monster!!! So many Warrior [sic] and so much caring and love!!” -Earl D.

“I’m actually thankful for the pain. As weird as that sounds, it has changed my life. It has forced me to slow down and enjoy the smallest things that most people take for granted. It has allowed me to learn about self love and to actually live life rather than just existing.” -Kristin M.

“I’m thankful for my support system. My mom and my aunt are experts at waiting room etiquette. I’m thankful for my doctor and his nurses. I’d be lost without them!” -Maria T.

“[I am thankful for] My pain doctor, who first diagnosed me 29 years ago next month, and whose knowledge and tenacity allowed me to talk again. He has passed away and I never got to thank him enough but he was ma saviour [sic]. RIP, Dr. S.” -Sharon V.

“The lessons that come with CRPS: patience, perseverance, balance, and celebrating the small wins. It reshaped my world by now I value so much the time I have with family, friends, fur babies. I celebrate the days I work and the walks I take” -@moonglotexas

“I’m thankful for the very breath I breathe because I have had breathing problems before. I am thankful for my smile because I almost lost it when I was 10. I’m thankful for the pain I feel because it means that I am not paralyzed. I’m thankful for every single day that I can wake up because God has allowed me to stay on this Earth with my family for another day. I’m thankful for the life I have because I almost lost it when I was 10. I could have died from the cancer that I had at 10 so I’m thankful that I have CRPS because it’s not cancer. I’m thankful for everything I have because I’ve had less.” – Windy F.

“I am thankful for my son, I have been living with this for probably most of my entire life, I have been in very dark places, & just having him & loving him & knowing truly what unconditional love is fills my heart everyday [sic], without him I don’t know if I could fight this disease much longer, but he pushes me out of my safe places & into new adventures and levels of strength I didn’t know I had! His imagination & curiosity help me see the world in so many amazing ways, he has no clue but he has given me a piece of life I never thought I would have, 6yr old little hero, & I couldn’t be more proud of him every day! The empathy he shows others warms my soul.”- Ashley M.

“[I am thankful for] my family, Netflix, painting, and writing all help distract my pain. I am also thankful for my friends who have stuck by me and for my youth group and youth pastor and his wife.” -Makenna R.

“I am thankful for my family’s unconditional love and support everyday [sic] and in every aspect of this disease..[sic] I have six kids four grandkids and my husband..they help me in every way..even allow me to just have my meltdowns but there to pick me up after.. I truly believe that if not for them I’d be dead by now! They are my rock through this fight.”- Jeananne B.

“I’m thankful for the things that I can do instead of dwelling on what I cannot do! I’m thankful for God giving me the power to be tenacious and to not give up despite the pain nor give in to the pain. I’m also thankfuol [sic] for the power of positivity and for being able to make “Hope” a verb and to do something about it as much as possible. I’m also thankful for my soul mate, my husband Craig; who’s also my caregiver much of the time. Lastly, but definitely not least, I’m thankful for the few non profit org who have been with me and for me from the start.”-@raseforcrps

We had so many incredible responses. It was one of our most impressive comment threads. We want to know why you are thankful. We challenge you to make a video, a post, a tweet, anything to explain why you are thankful. Tag us so we can see. Happy Thanksgiving!

Please consider making a donation to RSDSA today!

By Samantha Anderson

When was the last time you went to an event? A wedding, a reunion, a birthday party, a holiday- they all count. It can be incredibly stressful to prepare for these events, especially when you cannot predict how your CRPS pain is going to be. But, every day, we continue to push to make it to the things that are important to us and those we love. I thought it was only appropriate to write this blog, as I am attending a wedding tonight after injuring an area of my body that is greatly affected by CRPS earlier this week. With that being said, congratulations to my cousin Andrea. This is inspired by your wedding!

Preparation. It can be the most important part of everyday life. If we go to the grocery store, we prepare by having lists and coupons ready. If we go to the doctor, we have records and logs of issues to report to them. How can we prepare for a major event? This starts off within the month of event. While we must continue to live our day to day life, it is important to try to conserve energy and stamina for the big event. This does not mean everything has to stop, but try to make life easier on yourself. Rest up as much as possible, prepare meals in advance so you do not have to do as much every day, ask for help from family and friends. This is something I would recommend anyway, but especially during times of special events. If you are experiencing pain, continue about with the plan put in place that helps you manage your CRPS. Whether that includes physical therapy, acupuncture, meditation, medication, or anything else, you will want to keep doing that. (PS. If it is an event you need to bring a gift for, remember that registries are now online and you can get items shipped right to your door OR to the door of the person/people receiving the gift). This prevents the last-minute rush that so many of us resort too.

Dress to impress (no one). Okay, to some degree, dress codes need to be followed. Weddings are a bit more formal than a birthday party. However, there are ways to dress comfortably and appropriately all in one. With the wedding I am going to tonight, I will be wearing a long sleeve shirt and a tea length skirt. The skirt has a silky layer by the skin, so it will cause minimal irritation to my legs. This skirt also covers the swelling in my knee and discoloration of my legs, especially after getting injured early in the week. The elastic on this skirt (and the flowy bottom) help hide the swelling I currently have in my abdominal region as a result of cysts. But that’s another health story. The arms of my shirt are soft and work in case there is an air conditioner that is cranked too high, minimizing my pain. I also tend to bring multiple pairs of shoes with me, as things can change from moment to moment. I may wear my Toms, or I may wear a pair of flats that work with my foot. It depends on the swelling. Generally, I wear LuLaRoe items to events. I have found soft shirts, dresses, skirts, and leggings that work with my CRPS. Some days, I need tight garments around my CRPS affected limbs, making leggings a perfect fit. Other days, I need loose fitting clothing. It’s day to day. I always try to have a few ideas of what to wear in case my body is not cooperating. This can go under being prepared, as you will not have to experience last minute panic trying to find something to wear. Men, I’m sorry. I’m not nearly as in tune with men’s fashion as I should be. But Target seems to have some soft men’s clothing, based on what I’ve experience while switching my husband’s laundry over.

Be strategic. You know your CRPS and overall pain triggers (loud noise, a lot of vibration, sunlight, etc.). You should tell whoever is planning the event about your needs. For a wedding, you may want to be away from the speakers of the DJ, but also not under a vent. Tell the bride/groom/mother of one of them and see if they can talk to the venue to discuss the best place for you to sit. Do this for other events, too. If you do not say anything, no one will know how to make you more comfortable. If you do say something and they cannot accommodate all of your requests, at least you mentioned it and gave it a shot. You have to do what is the best for your health. Also, brings things that will help make you comfortable. If you need a pillow or blanket to protect yourself or to minimize your pain, bring them with you! We tell all of our conference attendees to make sure that they bring anything that could help their comfort levels, especially staying in one crowded room for a long period of time. I have seen some fantastic ideas. You have to take care of you.

Have a good time. This sounds like a silly instruction. However, after talking to so many of you (and living with this myself), I know that we can often feel guilty for going out and having a good time. We get anxious, thinking people will think we are magically cured just because we are smiling and laughing. We worry that our employers or people from social security will find out and will then take everything away, even though we have worked so hard. However, by having a good time, I am not saying to go run and jump on a trampoline and make sure to hit all of your affected limbs. I am merely suggesting that you enjoy the moments. Occasions of celebration are meant to be fun. We are allowed to enjoy life, even though we are in pain. As a matter of fact, that’s more of a reason to enjoy life. Say this to yourself (or out loud): “I am a CRPS warrior. I live in pain, but that does not define me. I define me. Today, I am going to embrace fun and not feel guilty.” That felt good, didn’t it?

By Guest Blogger Victoria Abbott-Fleming

I grew up in the North West, UK as an only child and went through early life enjoying school, sports and music. At primary school I made Head Girl and became a Head of House and School Prefect at Secondary School. My childhood was a very happy one!

I became the first in my family to go to university and I eventually qualified as a Barrister and was Called to the Bar in 2002. I loved it but knew it was a tough profession to get in especially for women.

After University I got a job as Head of the Law Department at a college. I loved it! Passing over my legal knowledge that I had learnt over the time gave me a real buzz! Soon after starting lecturing in 2003, aged just 24 years I suffered what seemed a simple accident at work. However this very quickly turned complex.

I suffered no broken bones but suffered major soft tissue damage and possible nerve damage. But my main problems had still not been diagnosed by the multitude of doctors I had started to see, where I was told that ‘it was in my head’ or the ‘pain can’t be that bad.’

Eventually after 7 months and seeing huge number of different doctors and specialists, I was diagnosed with Complex Regional Pain Syndrome (CRPS) in my right leg. I had never heard of it and neither had my husband. I was numb with fear and worry; I just didn’t know what my future held for me.

The condition caused me to experience extreme burning pain, allodynia, temperature and wild colour changes. I had other typical signs and symptoms such as shiny skin, loss of hair, terrible brittle nails and major swelling which unfortunately resulted in me having painful ulcers and eventually total skin breakdown.

I started to fall into a deep dark hole of depression and even though I have a fabulous husband and my dog they couldn’t bring me out of it. I began seeing a counsellor, who did her best, but I couldn’t see any way ahead of me and yes I did consider suicide. I found it difficult to accept and contemplate how a minor fall down a flight of stairs at work could lead to something so life changing.

I tried the majority of treatments available at that time but after almost 3 years doctors decided that my leg needed to be amputated above the knee. I was just 27 years old and had my whole future ahead of me including an excellent legal career. I didn’t know what I was going to do. It took me a long time to learn to accept my condition and amputation but when I did I felt that I had really achieved something and was determined that this condition wasn’t going to beat me.

However something else very positive did happen to me before my amputation took place in 2006 and that was my long term partner and I finally got married. We had been together since 1999 and with everything that had gone on, the last thing on our mind was marriage. But when I knew that I was going to become an amputee, I took the decision that I wanted to marry with 2 legs and not in a wheelchair. So we travelled to Las Vegas, USA and got married in a beautiful location over Lake Las Vegas and no, we didn’t have Elvis at our wedding!! It was a fabulous ceremony and for just one moment I didn’t think about the CRPS or the impending amputation. For just one moment the words “in sickness and in health” meant so much to both my husband and I.

Following my 1st amputation, I tried to rehabilitate onto prosthetics but it turned out impossible due to the CRPS remaining in my residual stump. I also had terrible phantom limb pain which was and still is like having the CRPS still in the lower part of my leg. I also suffered with several pneumonias and eventually contracted Swine Flu while on holiday in New York in January 2014. Was anything going to go right for me? I kept thinking that world was set against me.

I was put into an induced coma and my husband was told that I had less than 20% chance of survival and if I did survive I may have some brain damage. I did survive which was a sort of miracle but unfortunately after I returned to the UK I started with familiar symptoms in my left leg. Yes, the CRPS had spread to my left leg. I just couldn’t believe it. I kept thinking, why me? Why did this all have to happen to me? After only 9 months I needed my remaining leg amputated above the knee, leaving me totally confined to a wheelchair and unable to use prosthetics due to the severe pain and hypersensitivity from the CRPS. I was just 35.

It was during 2014 that I decided that no-one should go through what my husband and I had been through without any form of support in the UK. I wanted to help all those affected by this devastating and life-changing condition and more importantly to raise awareness of it. So I set up a UK charity, Burning Nights CRPS Support and we are dedicated to supporting everyone affected by CRPS as well as raising awareness amongst the healthcare, legal professionals and of course the public.

In terms of where I am now apart from the charity, I still live with a lot of excruciating pain as well as having other CRPS signs and symptoms such as tremors, temperature and colour changes as well as hair and nail problems. I have to take things slowly a lot of the time and have to factor in rest time and time for my husband. There are days when I don’t want to do anything or can’t do anything because of the pain or tremors but I enjoy raising awareness and reaching out with the knowledge I have gained to members of the public, legal and healthcare professionals and students. I don’t know what the future holds for me, so I take this one day or week at a time. But I know that I couldn’t do this without my caring and supportive husband.