Category: RSDS General Info

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.

Written by Louis Siegelman, DDS

Many aspects of daily life are a significant challenge for patients dealing with chronic pain conditions like complex regional pain syndrome (CRPS) or fibromyalgia. Dentistry can often be an extremely difficult environment with its inherent discomforts. Most dentists provide their care with local anesthesia as the sole means of pain control. Some dentists will also use nitrous oxide, which delivers excellent analgesia, and/or a benzodiazepine, such as diazepam (Valium) or triazolam, for relaxation. A limited number of dentists can provide more advanced multimodal therapy that is within the limits of a dental license. Such dentists may be oral surgeons, dentist anesthesiologists, or others with extensive postdoctoral training in anesthesia and pain control. These dentists with more comprehensive training can provide intravenous sedation for oral surgical, pediatric, or general dental procedures.

A comprehensive evaluation and consultation should be the first step in developing a treatment plan that suits the patient’s needs. A detailed past dental and medical history needs to be reviewed. Co-existing mental health conditions relating to panic and anxiety, depression or posttraumatic stress disorder are considerations. Coordination with other involved healthcare providers, such as pain management doctors, internists, neurologists, and surgeons, may be required. All of this information forms the basis for appropriate dental and anesthetic treatment planning.

Multimodal treatment includes a pain management strategy for pre-emptive analgesia, intra-operative comfort, physical therapy, and postoperative pain relief. The goal is to cover as many pathways of discomfort for patients during the peri-operative period as is reasonable and indicated for specific patients and procedures. Possibilities include alpha agonists, NMDA receptor antagonists, antihistamines, opiates, acetaminophen, NSAIDs, benzodiazepines, steroids, anti-emetics, local anesthetics, and sedative hypnotics. Common routes of administration may be topical, oral, intravenous, or intramuscular. Skillful use of these medications can provide a patient experience that minimizes pain, swelling, nausea, and anxiety. Talk therapy with the dentist or mental healthcare professional can be instrumental in overcoming obstacles to care.

Many patients with chronic pain face constant suffering and may be unwilling to seek professional care for their dental conditions because of fear of additional pain. They may also expect the same level of anesthesia and pain control available for minor medical procedures in the dental environment. Trained dental providers are available, but it’s important for patients to ask questions like what was the type of training the doctor received, how many patients like your self the doctor sees, and how often he/she does these procedures? Many offices and programs offer information online about their services, and treatment philosophy. Calling the office and asking questions of the dental team members is a great way to see if a doctor will be best able to serve a your individual needs.

Louis Siegelman, DDS, is a dentist anesthesiologist practicing in New York City. Click Here to visit Dr. Siegelman’s website.

RSDSA Review. Summer 2009.

Written by Dr. Chu for the RSDSA blog.

As most patients suffering from Complex Regional Pain Syndrome know, long-term data regarding standard treatment for this oftentimes debilitating condition has been mediocre at best. In fact, most of the usual treatment available, until recently, have been extremely limited. Nerve-specific medications can have intolerable side effects and low responder rates. Injections such as sympathetic nerve blocks are typically short-lived. Even more advanced therapeutics such as Dorsal Column Stimulation (traditional SCS) have mixed results with patients reporting unwanted areas of stimulation or loss of pain relief over time.

The idea behind neuromodulation is simple, of course. Change the way our nervous system transmits pain signals by blocking it with low levels of electrical current delivered to the spinal cord via small implantable wires and replacing painful sensations with more pleasant ones, thereby giving patients relief. Traditional spinal cord stimulation has been used to treat a variety of chronic pain states. Originating back in, that late 1960s to treat refractory cancer pain, this technology has evolved to successfully help patients suffering from many different types of pain, including failed back surgery syndrome, chronic nerve pain, headaches, chronic pain that develops after trauma or surgery and many more, including CRPS.

I often tell my patients the simplest way to think about this it [is] to remember the last time you stubbed your toe. Between hopping on one leg and screaming at your furniture, you were probably also rubbing your toe. You instinctively do it because it makes your toe feel better. You are distracting your brain from the intense pain by introducing another type of sensation- the sensation of a nice massage.

But as I mentioned, traditional SCS is often not precise or targeted enough for patients with CRPS. Let’s say you suffer from complex regional pain syndrome of the foot that has been refractory to the usual conservative treatment. Spinal cord stimulation may be a reasonable option to treat the continuous pain in your foot, but you may also experience unwanted stimulation in other areas like your low back or thigh. Alternatively, doctors may be able to capture your painful areas with stimulation, but it may not provide durable pain relief.

Given these limitations with traditional SCS, pain physicians around the world have been so excited about Dorsal Root Ganglion Stimulation, a new, ground-breaking, novel treatment option for patients suffering from CRPS. Like traditional SCS, pain relief is achieved through an implantable medical device which delivers low levels of electricity. However, the primary difference is that physicians are now able to precisely place the stimulator leads to target specific areas of pain or damaged nerves, avoiding unwanted areas of stimulation. In addition, the therapy is “sub-threshold,” meaning pain relief is achieved without any paresthesia.

While this therapy has been available in other parts of the world for more than 5 years, the FDA only recently approve (Feb 2016) this treatment for the use in the US. Results from the U.S.-based ACCURATE study have recently been published. In comparing DRG stimulation to traditional SCS, the study found that after following CRPS patients for 12 months,

• More patients found pain relief with DRG stimulation (74%) when compared to SCS (53%)
• More patients reported better focused relief of their painful areas with DRG (95%) vs SCS (61%)
• More than 33% of patients in the study experienced 80% pain relief or better.

CRPS affects many patients in many different ways. More advanced treatments such as the ones discussed here may not be for everyone. However, if you or someone you know is suffering from CRPS, have undergone more conservative therapy without benefit, have significant functional limitations due to pain from CRPS, or continue to rely on high-doses of opiod therapy, DRG stimulation may be right for you.

Please consider making a donation to RSDSA today!

Written by Guest Blogger Juli Wordgirl

Chronic Pain Blogger, Juli Wordgirl, offers her insight into the short film entitled “A Happy Seven.” How does she think this relates back to the CRPS/RSD community?

Life with Complex Regional Pain Syndrome (CRPS) is very difficult for me. Over the past nine-years I’ve made some difficult decisions, and I’ve had to face the consequences of those decisions—whether they are my fault or not. But in the past two-years (especially the last six-months), I’ve made the decision to be pro-actively more positive in my mind-set. One of the steps I’ve taken in my pro-active path is finding a local chronic pain support group. The following review is based on my post on the support group’s Facebook page, which I wrote immediately following group May 2017. The support group meets twice a month (first Saturday of every month, and last Thursday of every month). The people there are uniquely qualified to offer support because they understand everyday life with constant pain. It’s so refreshing to not have to explain over and over again what’s no difficult about simply opening my eyes and getting out of bed. “A Happy Seven,” the short film we viewed, captures nicely, in video, life with chronic pain.

“Last night at support group, we had a great discussion. The group’s support was awesome. I know I felt better when I left; my physical pain wasn’t gone, but my emotional pain was lessened. The group was blessed with a visual treat of watching a short-film “A Happy Seven.” It’s about a day in the life of a young-woman who has Fibromyalgia. The following is my personal reaction and review of the short film. I encourage everyone to view this film when opportunity arises.

The film opens with a beautiful tree while the young-woman is speaking. Then startling, harsh FEEDBACK sound interrupts and the screen switches to the woman in pain crawling on a carpeted floor. She says, “I don’t want to slow down. I need to get up.” Soon it’s clear the feedback is an indicator for pain: the louder the feedback, the worse the pain

Scene switch to woman and her mother. The mom is overly concerned, looking at her daughter with love. The mother hen-pecks about her daughter’s meds, how her caretaking is going, and what her pain level is–maybe a 5? The woman responds, like we all do, that’s she’s fine and she smiles. But the smile fades into the blank stare of pain as she gazes out the window.

The next scene is the woman and her brother. They look genuinely happy playing together, while the mother looks on with consternation. The young-woman sees the look, lowers her eyes, and seems to feel condemned. Then the brother leaves the room, and the young-woman struggles to stand from the floor. Next, she is lying in bed but not sleeping. Flat on her back, completely still and unmoving, with tears falling from her eyes. FEEDBACK. The phone begins to ring on her headboard. She makes no move to answer the phone.

She is remembering a talk with a friend who is enthusiastically urging the woman to take a long-planned trip. The friend says to just do it, it will be fine, she will go slowly with the woman. The young-woman says, with blatant honesty, that it will never happen, but the friend ignores her and runs up the stairs ahead of her still making plans for a trip that is ripping the heart of the woman.

In the kitchen later, the sister and woman are peeling carrots talking about family when a sudden flare causes the young- woman to scream and fall to the floor. The sister sits with the woman until the flare passes, then asks about the pain level, “Is it an 8?” The woman says it’s more like a 7/10 for her.

The next scene is my favorite, because I hear it all the time. The young-woman is meeting with some “friends.” They call out what they think might be the cause of her pain: “It’s a disorder,” Arthritis,” Psychosomatic,” ” Too much dopamine,” “Get outside more, “It’s not even real, and (my favorite) “You don’t look sick.” The woman’s reaction is a swirl of non-stop thoughts: “You don’t see me, don’t know me, I’m in too deep, a burden, it’s too hard, I’m trying so, so hard, I need to slow down, stop looking at me like that! Just let me feel safe!”

A great illustration of fibro fog comes next, when someone asks a really easy questions of, “How long have you known your friend?” The woman stumbles for an answer, “Umm, umm, ahh, ahh, umm. We met at grade school.” How many of us do the same thing? I do it all the time. Light feedback grows to LOUD FEEDBACK!

FEEDBACK. Now the woman is throwing up. She’s crawling up stairs. She’s trying to start a shower. She climbs in, fully clothed, and just sits in the falling water. She is panting, with labored pain filled breath. The sister enters the bathroom, immediately see her sister, sensing her pain. So the sister simply climbs into the shower to wrap her arms around her younger sister. They both sit in the falling water.

Now the woman is dry and alone in bed, sleeping. The movie is closing, and her voice is heard saying, “Learn to breathe.” The screen switches back to the beautiful tree from the opening screen as her voice continues, “I may never feel good, but I can be well. And I can be happy.’ And the credits roll.

This movie resonated with me because I feel like I live in a constant “7,” except when I flare into a 10 or 15 or 20. “A Happy Seven” is beautifully scripted, filmed, and acted. It felt genuine to me. I felt like it was a day in the life of me. Relatability is a large part of targeting an audience, and this short-film did it well. These are the opinions of Juli Wordgirl, and are in no way affiliated with any group or persons. Once again, I encourage everyone, with any chronic pain disease or illness, to view this film in its entirety. Gauge for yourself and see what you think. Wordgirl uses and defines words of all sizes to create awareness of CRPS and related conditions. Word Up!”

This is the entire review post on the pain-group’s Facebook site. Embarrassingly, there were spelling errors found when I copied it into a Word document. Bad on Wordgirl! Oh well, even Wordgirl makes mistakes—that’s how CRPS works on the brain’s limbic system, right?

The point is: CRPS affects the whole person, not just the physical body. Recent scientific links have found that Fibro actually IS CRPS. For more information, please view Dr. Philip Getson’s YouTube.com video “A Different Approach Extended with Philip Getson, DO.” There are, of course, different opinions about the Fibro/CRPS link; but after thinking about the commonalities—how can they not be related [This is the opinion of Juli Wordgirl]?

Unfortunately, “A Happy Seven” is not currently available for general viewing. When it is released, I ardently urge everyone to watch its well-captured viewpoint of life with chronic pain. Word up!