Category: RSDS General Info

Written by Kelly Clendenning for the RSDSA blog.

How and when did you develop CRPS/RSD?

The how is hard to determine as my first mini stroke and seizure happened in 2007 when I was 20 years old. At the time, the pain started in my spine. 12 years later, it is now in my entire right side, face, chest, and left hand. At this juncture, we do not know what caused it, but it is possible the TIA (transient ischemic attack) and seizure triggered it. I was diagnosed in 2015 after seven years of trying to get a diagnosis and treatment and well over 50 various doctors. My daughter was seven months old.

What has daily life been like since your diagnosis?

After so long, what should be abnormal is no longer strange. In the morning, I wake up and determine if I need my cane or not. I take my medicines and get my daughter ready for school if it is a weekday. Compartmentalizing pain and keeping my face blank is no longer a conscious thought as I see friends, family, and stranger alike as I give my daughter a final kiss before going home to work.

I cannot work out of my home anymore. In fact, I cannot exercise anymore due to the risks it poses to my body. I determine after work what I can do based on the amount of pain I am in. Sometimes I can manage to do dinner and two chores, but most often it is one with frequent rests.

Sleep is fractious. In fact I can count on one hand the times I have had an uninterrupted night of sleep in 12 years. A sleep study done while undiagnosed reveals I wake up every nine mins. While pain management has helped this to where I may get two to four hrs of straight sleep, it is nothing like before.

Every day is a determination of what can I do. What priority is there I must meet. With a young daughter and husband, as well as a job, you can imagine that my own rest is one I usually push to the side as much as my body allows…. despite my husband’s wishes otherwise.

What is one thing you wish those without CRPS/RSD could understand?

We, especially those of us who have had it for years, physiologically will not express intense pain the same way you will. Our bodies have protected itself so that it does not literally break with the stress. Our blood pressure may not go up, we may not cry or tear up, we may not sweat or only sweat on our affected limbs, and we are very, very sick.

We need allies. One in ten doctors or medical professionals I have met over the years even knows what it is… and therefore we have very few who believe us. Stand by us. Because this illness may not seem as dangerous as cancer, but it can be just as fatal.

What advice would you give to newly diagnosed Warriors?

Do not take the long view right away. For many of us, we will not stay in remission so it can be easy to think “what happens in 30 years?,” focus on today. Let it be enough.

Do not beat yourself up when you cannot do things you think you should. Accept help.

Do not give up. Do not stop fighting for treatment or to be heard.

Most important? You are never, ever alone.

What advice would you give to Warriors who have had CRPS/RSD for many years?

Remember that this illness can flare up or outwit or outdo even the best of coping tools and treatments. Do not be afraid to cry to a friend and don’t be afraid to talk your doctor if it is time to do something new. And as a reminder, while this may be so rare, we are not alone. We are not alone in this illness or the chronic pain and illness community.

What activities or treatments have helped you find temporary or long term relief?

Treatments are currently an all around approach from herbal like non-THC CBD oil to pharmaceutical-like fentanyl and gabapentin to spiritual like prayer and a relationship with God.

For me, I also find playing video games, reading, playing piano, writing, and other distraction activities during a flare are helpful when I have the energy.

I imagine my toolbox of what works will change and keep changing as time goes on.

What else would you like to add?

This illness is extremely isolating because of its lack of knowledge in the medical community to its misunderstood severity among layperson.

If we are going to really find hope, we need go start with gaining allies who are ot afraid to help those of us with this. We need allies in neurology, rheumatology, emergency care when pain hits a 10 and medicine is not working, therapists skilled in mental health with acute chronic pain involved, physical therapists, pain management, dentists, anesthesiologists, research, pharma and natural medicine, nutrition, spiritual leaders, and more. We are dying because the help is too few or non-existent. If you are an able-bodied person, then please consider this a call to action. Educate yourself and for the love of the sick, help us.

If you have been undiagnosed and still are not getting answers, do not give up. I went to over 50 specialists including an Emory teaching hospital in Atlanta (which was by far the worst experience), and well over 30 other types of professionals in seven years. I was having three to six appointments a week at one point for tests and telling doctors that I was not making it up at 20 years of age.

Do not let them tell you it is not real or is not as strong in pain as you say it is. Do not be afraid to talk to someone else, educate yourself and above all advocate for yourself. Get family and friends involved. Get that answers and fight like the pain warrior you are.

Please consider making a donation to RSDSA today!

Written by Jacque Neff for the RSDSA blog.

I joined the Army 25 years ago to follow in the footsteps of my family and work to become an officer. I thought I had an idea of what battles laid before me, but little did I know that I was at the beginning of a lifelong battle that would forever change my life.

While running during a physical endurance test, I felt and heard something in my left knee pop. I stumbled and the Captain told me not to “fall out.” I pushed on and finished in good time. A month later I was discharged with 10% disability and a diagnosis of tendonitis.

The pain continued way past when it should have and increased with each passing year. I kept going to the VA trying to find out what was wrong, but every test showed normal. They started to treat my like I was making it up. 

Long story short, after 21 years of nothing, I demanded to see orthopedics again. I told them I was not leaving until I did. During the exam, she tried to test the reflexes in my knees. At this point they were both bad and I cried and begged her not to. She said she had only seen that one other time and sent me to pain management where I was diagnosed with CRPS type 1. 

As a nurse, I had never heard of it, and was so relieved to finally have validation. Unfortunately, I had progressed so far in the disease that she jumped straight to a spinal cord stimulator for relief stating that she feared not much else would help. She was right. Nothing has helped me at all or for only very short periods of time. I am currently unmedicated.

At first I could still function decently. The pain was there, but I pushed through it. Each year brought different challenges. However, I started declining rapidly in 2015. 

I now have CRPS from the waist down, starting in both arms and have lots of issues with digestion, including my bowel and bladder. It spread like wildfire after my spinal cord stimulator implant.

I have trouble with all activities of daily living. I am 45 and use a walker, but only because I refuse to be wheelchair bound yet. I can no longer clean my house or do most things I liked to do. I was an outdoor person.

What hurts the most is that I have lost a lot of family and friends because they do not understand just how bad CRPS is. I wish they could see that this is not the stuff they are used to. That there is no cure and I am not going to be better tomorrow. I wish they could understand that my once spotless house is a mess because I can only do something for five minutes and take breaks for hours. I am not lazy, I just hurt!

My advice to all warriors is to be your own advocate. If a doctor is not listening, make them listen or find one that will. Make yourself heard. We are the only ones who know our body! If you are new to this diagnosis, research will be your friend as well as joining support groups for this. I say this because it is a complex disease with many symptoms and a lot of doctors have no clue what it is. They will try to fake their way through it rather than educate themselves. This can lead to more problems. Trust me, I have been through it.

For those who have lived with this for years, I hope that you have found treatments that work. If not, keep fighting. I still read medical journals and they are making advancements with chronic pain all the time. It is hard, I know, but there is always a reason to keep fighting. Oh and just because a treatment works for one person, does not mean it will work for you. We have to find out what works for us. Unfortunately for me, right now Percocet is the only thing that helps me out of bed and because of the crisis, no one will prescribe it for me.

Pain psychology classes do help. I have taken a couple. They teach coping strategies and techniques to help lower pain. I use distraction the most. I miss all the outdoor activities, but discovered I can draw. I also crochet and play video games. Breathing is an absolute must. Learn breathing exercises to help get you through bad moments. 

I pray for us all every night. I may not know you or have never met you, but I pray for you. After all, we are brothers and sisters in pain. We are WARRIORS.

Please consider making a donation to RSDSA today!

Written by Abby Sams for the RSDSA blog.

My name is Abby Sams and I was diagnosed with RSD/CRPS at age 19, over seven years after its official development.

When I was 12, I injured my knees playing with friends and myself, my family, and my doctors all agreed it was likely a growing pain situation, or a simple “runners’ knee” that would clear itself up eventually. I ended up having to wear knee braces almost constantly for several years. My skin was purple, and my knees and thighs hurt to touch. I hated pants and always opted for our uniform skirts or shorts even during the winter. My daily life since diagnosis has changed tremendously.

Now that I have answers I am able to do physical therapy at home and be more active in ways that suit my needs without having to worry about further injury. I am a wheelchair racer and college student and I able to deeply enjoy both of those things and many others even with RSD.

I wish people could understand how good RSD/CRPS patients get at hiding their pain. RSD/CRPS pain is rated one of the most painful things a human being can experience on the McGill Pain Scale, but when you are living with that constant pain for years on end you learn how to hide it or push through it rather easily which often leads to people without RSD/CRPS not believing just how bad it is.

However, if I could tell a newly diagnosed warrior anything it would be to keep going. I know it sounds cliché but that’s it. Some days are going to be so much worse than others and it can feel like there is no light at the end of the tunnel or no end at all but it does get easier even if it does not get better and that is worth fighting for.

For long term RSD/CRPS warriors, I would tell y’all that I am here for you, I know what you are going through and you are not alone. I know sometimes it feels like there are just a million things going on and nobody gets it, but we get it. This amazing community of people is here for you, ready to fight for you and support you.

As someone who the spinal cord stimulator, nerve blocks, and ketamine infusions did not work for and were not options, the best treatment I have found for myself has been physical activity. It started as just moving my knees gently through squats or lunges, maybe just two or three a day. Then over the years it was walking every day even just down to my mailbox and back. As a patient that also has Ehlers-Danlos Syndrome and a multitude of other chronic illnesses, I have found that even being in my wheelchair and doing wheelchair racing has improved my pain in my legs. Getting that circulation flowing in spaces other than my legs has proven to benefit my whole body. It’s the little things that can make big differences, so don’t underestimate their power.

Keep fighting friends,

Abby

Please consider making a donation to RSDSA today!

Jessica Kennedy Dutkiewicz is a Florida-based vocal chronic pain warrior who often speaks about 1% disorders, medical marijuana, chronic pain awareness, and much more.

The RSDSA team did not hesitate to share her full story so those who are looking to learn more about CRPS/RSD, chronic pain, and treatment methods can have yet another resource to turn to.

Please consider making a donation to RSDSA today!

Barry M. Wein, MSW (He/Him) is a writer, storyteller, advocate and ally. For more than 20 years, he has helped good causes share their stories, so they can do even more good in the world. These days, Barry feels compelled to share his own stories because they simply demand to be told.

His voice is strikingly direct, honest, and intimate. Yet, he has an uncanny knack for finding a laugh even during life’s most challenging times. He finds it to be extremely empowering and encourages others to try it too. Barry seeks to create special moments of connection with fellow Warriors through his writing.

He understands those with CRPS are as unique as snowflakes, but likely share many common experiences as well. He hopes his writing will also touch the hearts, minds and funny bones of the general public.

This video captures Barry presenting his first CRPS story, “Consumed by Flames”, at a benefit held recently for the Madison Reading Project, a nonprofit organization that promotes literacy to underserved children where he lives in Madison, Wisconsin.

Before taking the stage, he had just learned that his CRPS had spread from his right hand and arm to his left The text to his reading can also be found below the video.

Consumed By Flames

By Barry Wein

The autumn day is unusually warm and sunny. In the distance, the city bus waits at the designated stop. Its doors wide open like the arms of a siren beckoning me to answer its irresistible call. I start sprinting, so I don’t miss it. My middle-age heart begins to race. Sweat is now pouring down my face like Niagara Falls from my receding hairline. Forget receding, these days it’s as if I can hear the follicles on my head screaming “retreat, retreat”. As I get closer to the bus, my breathing becomes shorter and I’m gasping for air. I quickly picture my diaphragm, the muscle that pumps my lungs, and am surprised to see it’s an old chain-smoking asthmatic man with a Yiddish accent. He looks back at me with a shrug and says, (cough) vhat vere you expecting, Captain America? Feeling a wave of relief so big it would have inspired Hokusai to make a wood block print, I step onto the bus with my right foot. Just then, to my complete astonishment, it feels as though the bus takes off faster than Usain Bolt at the 2009 World Championships.

In an instant, I fall back out of the bus and hold my balance precariously with my toes on the edge of the sidewalk, swaying like a circus tight rope walker, waiting for the behemoth of public transportation to pass until I plummet into the street. Before I’ve locked lips in a passionate French kiss with the pavement, my arms instinctively reach out to protect me. My hands, arms and elbows take the brunt of the impact before my knees follow suit.

I’d like to say that I rose from the street that day like the mythical Phoenix, a bird that crashes to earth every 500 years, consumed by flames, only to emerge from its ashes renewed and reborn with radiant scarlet and gold plumage, leaping into the sky and flying off towards an eternal sunset making its melodious cry. Instead, I managed to get up, dust myself off, and quickly walk to the sidewalk to get out of the way of oncoming traffic. Then, like a miracle, as if a Holy Spirit moved through me and took control of my body, I suddenly saw my right arm reach to the sky, my fist close by itself, and my middle finger rise on its own towards the heavens. My mouth opened and a voice that was mine but not my mine shouted with religious fervor towards the bus “Be fruitful and multiply.” But not in those exact words…

This entire sequence of events took less than 5 minutes to transpire. I never would have guessed at the time that it would change my life forever. After X-rays, CT Scans, MRIs without dye, with dye, with dye on the side and no croutons, it turned out that my dominant right hand and arm took one for Team Barry when I plummeted to the ground. My own personal big bang started with aches and pains, but soon expanded to a universe of orthopedic agonies that included trigger thumb, torn tendons in my wrist, and Cubital Tunnel Syndrome—which happens when the ulnar nerve that starts in the side of your neck and ends in your fingers is compressed where it crosses the elbow and needs to be relocated like a high performing employee to fill an open position in your arm.

The required surgery was a success and they sent me home with wound care instructions, a 5-day supply of Oxycodone and a 2-4 week healing prognosis. After working with occupational therapists for the next 6 weeks, my wrist was still very swollen and excruciatingly painful. My surgeon suspected I had a pain disorder and referred me to a specialist. The Pain Doctor gave me a thorough examination, using what he called “The Budapest Criteria”, which I thought was an espionage film from the 1970’s starring Michael Caine.

I was diagnosed with Complex Regional Pain Syndrome (CRPS) from my right hand to my upper arm. Like most people, I had never heard of it before. I quickly learned that the medical community doesn’t understand the underlying cause of CRPS yet, but generally believes it to be a malfunction of the peripheral and central nervous systems due to trauma or surgery. The brain becomes confused and nerves misfire, sending constant pain signals to the areas of the body affected by the syndrome. While there is no cure for CRPS, I was fortunate to receive such an early diagnosis because treatment within the first 6 months would lead to the highest probability of remission. Encouraged, I still held out hope that I would be able to return to work before my 12 weeks of FMLA expired. Now “The Rocky Theme” played on the soundtrack in my head as I fought with all my might to recover. Yet, despite my best efforts, I was no match for CRPS. There would be no “Yo Adrian” moment for me and not just because my wife’s name is Sarah.

Everyday it felt like I was shopping on the Sadism infomercial site. “If you order now, you will receive 7 unique types of pain, at any given time, without warning, 24 hours a day, 7 days a week—we’ve got burning, stabbing, shooting, crushing, throbbing, aching, and pins & needles. And this isn’t any ordinary pain; CRPS outranks childbirth, amputation, and cancer on the McGill University Pain Index. They don’t call it the suicide disease for nothing! And as an extra bonus, we’ll also include major depression, post traumatic stress disorder, irritability, short-term memory loss, fatigue, inflammation, physical hypersensitivity; muscle spasms and we’ll even throw in a free stress activator and a set of Ginsu knives!

I resigned from my job in June because there was simply no way for me to work. I’ve been fortunate enough to receive long-term disability insurance payments to help provide for my family. There is no single effective treatment for CRPS, so the first-line medication I was put on was originally developed for epilepsy because it has been shown to help with neuropathic pain. What they don’t tell you is that its main side effects are brain fog and weight gain. I gained 20 pounds in a month. The medication also exacerbated my CRPS symptoms, so I found it difficult to process my thoughts, remember conversations, recall common words, and do any simple chores that might cause the pain to flare. I was quickly becoming a cross between Charly at the end of Flowers from Algernon and Elvis at the end of the final tour. I felt so guilty about the burden that I put on my family, ashamed that I couldn’t work, and deeply depressed that my life seemed to be slipping away. I had suicidal thoughts, but they never got anywhere because I would immediately see the faces of my loving wife and daughter whose support continues to help me more than any treatment western medicine can provide.

It’s been 8 months since my diagnosis. My symptoms have continued to worsen. However, I have since switched medications, cleared my head, lost 30 pounds, and my routine now includes daily meditation, exercise, an anti-inflammatory diet, pain management classes, extravagant pity parties, weekly psychotherapy, good and bad days and I still occasionally binge watch 10 seasons of a TV show in 3 days.

I can no longer type, text or handwrite for very long, so I use the voice to text feature on my Macbook and iPhone. CRPS has taken away many things from me, but not my love affair with writing or my desire to share my musings in the hope that they will entertain, inform, and inspire others. Stories have the unique power to connect the writer and the reader, to help us see and understand each other, to feel and love each other, to cry and hold each other, and to remind us we are not alone, we are in this together.

Smoldering, fire licking the bottom of my feet like a hungry kitten with a saucer of milk, crackling, playful, gentle at first, fire flickering, flaring, leaping, spitting, plumes of black grey smoke and fire wind around me now, an inferno blazing, ash floating to the ground. Memories. Memories. Sobbing. Letting go. Mourning. Letting go. Tearing my clothes. Letting Go. I am consumed by flames.

Please consider making a donation to RSDSA today!

Written by Kelly Hodgkins for the RSDSA blog.

My journey with Complex Regional Pain Syndrome started in 2008. I experienced incredible pain in my wrist and it was interfering with my ability to use my right arm. I went to my general practitioner who asked my to see an orthopedic surgeon who diagnosed ganglions. I was operated on to remove them only to have the pain increase post-operation. I was then referred to a hand specialist in Johannesburg, who after a number of tests, scans and shots of cortisone, operated on me and removed 3cm of inflammation and prescribed six months of rest and rehab. I was on a cocktail of potent anti-inflammatories and pain killers, none of which made an iota of difference. My occupational therapist and physiotherapist worked tirelessly to regain my movement and try and relieve my pain.

Two years in I was in excruciating pain. I spent most days in bed or on the couch crying and was physically a wreck. I had managed to complete my degree by doing my exams orally as I could no longer write. I could not do any of my hobbies aside from spending time with Texie, because my horse is so amazing and does not need a rope or saddle to respond. I did my best to work, but it was a disaster. By divine intervention, an associate referred us to a neurologist who took the time to understand my pain and booked me into a hospital for two days of extensive testing. On the evening of the second night, a specialist physician / rheumatologist named Dr. Mohomed came and diagnosed me with Complex Regional Pain Syndrome (CRPS) formerly known as RSDS. 

When I came into the care of Dr. Mohomed the relief was astonishing! Just to know what was wrong, that I was not dying or crazy and someone in the medical world believed and understood me was an answer to prayer!

Since my diagnosis, enjoying hobbies has become critical. I love my horse and spending time in the field with him as well as with my dog at home. Grooming both of them calms me and does great rehab on my hands. They do not need me to speak as they just know what I am feeling and my horse in particular adjusts his behavior to compensate for my arm and my pain. He guards the arm for me and takes responsibility for me when I am riding and ensuring the I do not fall off. Reading, movies and audio books are such great distractions and when I am having a good day. Knitting, cross stitching, piano and drawing all form part of my rehab. 

Work wise, I have been limited to four hours a day, I regularly exceed this, but over time my clients, driven predominately by my mum (and co-member / boss), have adjusted to extending my deadlines, having meetings at my house and tailoring how we work around my condition. I was so fortunate as to get a mini iPad in January 2013 and it has rocked my world. I can do SO much more work SO much easier and apps have also improved my life.

Regular prayer, bible reading and soul searching have got me through the really tough times along with amazing friends and family. Having a support system that understands my needs and adjusts to my condition has been invaluable! I keep in touch with their lives through social media and instant messaging on days where talking or leaving the house is too much. 

Living with a chronic pain condition like Complex Regional Pain Syndrome is challenging. I want to remain someone who has a balanced life but by the time work is over, I can feel exhausted. Doing anything, in addition, can feel more like a burden than a joy. Finding ways to keep the balance and enjoy my off time is an ongoing exercise and consistently adjusting to what I can do is something others really battle to understand.

My heart commits to doing something but I cannot always physically do it when I want.

If I could talk to myself the day I was diagnosed, I would share these three thoughts: 

1. Keep fighting for the life you planned: You are worth fighting for, keep going, through the pain and the fear, through the doubt and unknown. Keep asking questions, keep doing your own research and challenging your doctors. The right ones will understand you and work with, if they do not, look for a different doctor. I am now able to draw, play piano, ride my horse and work. My pain is vastly reduced and the future bright. I am so grateful God saw that to be my healing and know that it is not for everyone, but every story I read of courageous chronic pain patients highlights the power of fighting and staying positive.
2. Build a team: You can not do it alone, and you cannot be everything for yourself. When you are the sick one, your perspective will be skewed. My mum was my warrior. She fought for me when I was not well enough to speak for myself, when I was tired, when the pain overwhelmed me or those treating me were not doing enough. She and I were supported by a network of friends and family who stepped up, prayed with us and loved us. My hœmeopath, specialist and psychologist, who were a part of my diagnosis, were amazing working together to help me find a balance. I added a fantastic biokineticist, Bryce Jackson, to this mix. We had to explore the right things to do, the research was scarce but, they listened, to everything I said from my chocolate cravings to migraine lifting exercises. I found support groups online and friends around the world to keep my spirits up. Find your tribe, find the people you connect with and who understand you.
3. Look for the blessings: I had always been a Christian and committed to my faith but being in chronic pain required more from my relationship with God. I was filled with questions, I interrogated what I believed with new vigour and found new truths, new depths to my faith. I found celebrating my small wins and appreciating the little things made a world of difference. Getting to spend time in the sun with my horse, reading a book, spending time with friends, completing a work project, they were all stepping blocks. A day with a pain of seven not eight was amazing as was being able to drink milk again! God is now more real, more present than ever before. Through CRPS, He has taught me so much about Himself, myself and living a balanced life. I am so grateful for the lessons.

I still get frustrated, scared, angry, tired, lonely and sad. Having a chronic pain condition reorganizes your life without permission and makes planning tricky. It takes a lot of explaining, forethought and effort to stay well enough. But, eight years on, I look back and am amazed at all I can do now, how much research is available, how much I have gained from it and who knows what the next eight years will hold! So now I am also hopeful, excited, faith-filled and joyful.

Additionally, I find reading medical journals, magazines, blogs, websites and Twitter feeds helps me feel active and part of a broader community. It keeps me in touch when progress is being made and not as alone with the problem. Sometimes others with the same problem phrase it differently to me, cast a new light on it or just allow me to empathize with them 

Since 2010, I have been balancing my meds and overall health programme. I take:

• Cymbalta 60mg once a day – around 7pm because it knocks me out and once asleep I can only really wake up 12 hours after I take eg: 7am. This is the most awesome drug, it has relieved my pain! It’s an anti-depressant which changes the chemical make-up of my brain (from which my pain emanates). It is generally effective so long as I don’t overuse my wrist, its effect diminishes when the barometric pressure shifts so I’m heavily affected by weather.
• Maxalt RPD for migraines which are a side effect of CRPS and triggered by hormone fluctuations
• Homeopathic Meds are essential, all the chemicals have harsh side effects: exhaustion, nausea, vomiting, headaches, dizziness etc and Dr Georgie Makris has managed to get rid of all of them through homeopathic medication and she even limits my use of the anti-inflams with drops.
• I also drink good, strong coffee and eat quality chocolate which makes me feel infinitely better on a bad day – both, again, change the brain chemistry and help relieve pain
• I am a vegetarian and have been for years but these meds put huge pressure on my liver and, whilst being fully functional, it can’t cope with certain foods so when I start going yellow-ish and feeling nauseous I cut back to a vegan no oil diet which immediately makes me feel better. I calorie count with the app My Fitness Pal which helps me balance my meals 

Other parts of my programme include:

My biokineticist, Bryce Jackson, has created a programme that is ensuring I maintain what muscle strength and mobility I have as well as stabilising weak points. He works slowly and within my capabilities, extending them bit by bit, so as to avoid a flare-up of my CRPS. Charting my progress is very rewarding and it’s given me a sense of control and hope that I can prevent deterioration and restore what has been lost. It also keeps the rest of me fit and healthy.

My psychologist helped me gain perspective and come to terms with needing to accept the help of others and share the burden. She is also a great resource to lean on when it feels like I’ve leaned on my friends enough. Every time I lean on a friend it increases their worry about my condition and sometimes it helps to vent at someone else who has a bit more distance.

To close, here are a few things I find rejuvenating and make life with CRPS better! 

Prayer, worship and bible study… as a Christian, I find it encouraging to frame my pain through the lens of faith. There is always a verse, song or prayer for how I am feeling and it guides my reactions. Finding Proverbs 31 Ministries was a gift. An online community focused on eradicating biblical poverty and giving real hope for real life is just what I need! Through their online bible studies, I have met so many wonderful, courageous women with whom I can do life. I have deepened my understand of the Word and I have had so many laughs and such fun on the journey. I really recommend finding authors (for me it is Lysa Terkeurst, Max Lucado and the like) who inspire and guide you and a community with which to share. When I can not hold a book or keep my eyes open, I find Summer Gross’ lectio divina wonderful relief as well as worship music from Kari Jobe and Ellie Holcomb. Guided meditation through the Word is great too!

Love… spending time with my mum, my friends and my fur-babies brings connection, comfort and gratitude. It makes enduring the pain worthwhile, helps distract from the pain and generally brings giggles and relief! My German Shepherd dog, Teddy, is always goofing about and ready with a hug! My American Quarter horse, Texie, makes me feel able and worthy, he is so majestic but so willing to listen to me. Whether I am sat upon the floor beneath his legs relaxing or out riding, he gifts me with a sense of security and joy! Mum and friends often listen and check in on me, but more than that, they love me for the person I am and not as someone who is ill. It is a fine line between being compassionate and making the chronically ill feel like a burden. I am so blessed to have people who achieve compassion and I encourage you to find your tribe of people who get you!

Exercise… Working through the programme created with my biokineticist and friend, Bryce, keeps my limbs mobile and prevents deterioration. The exercise also release endorphins which helps with pain relief. He has given me a mix of challenging exercises for good days and pain relief ones for bad days. The pain relief exercises have drastically reduced my use of migraine pain killers and anti-inflammatories. I have found that consistency is key, a little bit regularly keeps me feeling better. 

Distraction… I love to be absorbed into a different world far from the pain and decisions and these three all help with that!

Books… I read and listen to them. I find using a Kindle is the best way to consume books because paper books hurt my hands. When I am having eye trouble or have a migraine, audible.com has great books to distract from the pain. Favourites include:

• J K Rowling’s Harry Potter series
• Brene Brown’s The Gifts of Imperfections
• Gail Carriger’s The Parasol Protectorate series
• Jane Austen’s six novels – particularly Pride & Prejudice
• Daisy Dalrymple series by Carola Dunn
• Emily Bronte’s Wuthering Heights and Charlotte Bronte’s Jane Eyre
• The Peabody series by Elizabeth Peters
• The Reluctant Detective series by Martha Oakley
• Christopher Paolini’s Inheritance Cycle
• Movies and tv series… I love watching mini series and movies I love, over and over again particularly interpretations of the classics by BBC, action movies and period dramas like Downton Abbey and Miss Fisher’s Murder Mysteries.
• Music… A broad range of music keeps my brain at peace, from rock ‘n roll to classics. Favourites include Ellie Holcomb, Queen, Chopin and Taylor Swift
• Really strong, good coffee… not much more to say than that! But really, I live on Nespresso, it energises and soothes and there is all sorts of research to support the goodness of good coffee! We have a local artisan bakery and cafe, The Upper Millstone, about 1km from home and it is a great retreat on a tough day!

Apps… My iPad has revolutionized my life, it is awesome and the one device I can use with ease. I use it for work, relaxation and community! The apps I have added to usual ones include:

• A pain monitoring app: find one that works for you! Mine helps me keep track of medication taken, how I am feeling and what I have done
• A fitness app helps me keep an eye on what I am eating, how much I am exercising and of I have a healthy calorie count
• Recognise helps retrain the brain and helps identify left from right which is really important for CRPS

Nature… beyond loving my fur-children, spending time sitting on the grass watching the grass grow held NO appeal prior to my CRPS diagnosis. As I have come to better understand my body’s rhythm, I have found little that restores the calm as spending time in nature does. I have crossed over so far as to actually garden a little now. My home of just over a year came with a magnificent garden, if unkempt, that has yielded so many new flowers, trees and bugs to make several turns in it a day a joy. Breathe the fresh air and just be, it is wonderfully tranquil

Please consider making a donation to RSDSA today!

We always appreciate when Warriors of all ages take a moment to share their CRPS story with us.

During the 4th Annual RSDSA Long Island CRPS Walk & Expo, we heard 16-year-old Samantha Strasser, a CRPS Warrior for the last eight years, tell her story to attendees.

If you are interested in telling your CRPS story on the RSDSA blog or social channels, send us an email at [email protected].

Please consider making a donation to RSDSA today!

Written by Molly Clark for the RSDSA blog

Complex Regional Pain Syndrome, or CRPS, is a relatively uncommon condition that causes severe pain and other symptoms, usually after an injury. CRPS can last for a long time and make it impossible for someone to work. Anyone that expects to be out of work for at least 12 months can file a claim for Social Security disability benefits, including those suffering from CRPS. The money from disability benefits can help with living expenses while a person is unable to work.

Disability Benefits and CRPS

There are a lot of conditions that qualify for Social Security disability benefits. Those conditions can all be found in the SSA’s Blue Book along with the requirements that must be met in order to be approved for disability benefits. But that collection of conditions isn’t comprehensive. Sometimes people have conditions like CRPS that make it impossible to work but there is no Blue Book listing for their condition or they don’t meet the requirements for their condition that are listed in the Blue Book. When you can’t work because of a medical illness but that illness isn’t in the Blue book or you don’t meet the requirements, what options are there? The best option is to have a Residual Functional Capacity Evaluation done.

RFC and CRPS

When you submit your claim for Social Security disability benefits you can ask for a Residual Functional Capacity evaluation. This evaluation is done by the Social Security Administration to see if you are capable of doing any type of full time work. They will look at the skills that you have as well as your physical condition and the problems that you have related to treatment or the symptoms of your condition. You will need to submit medical paperwork to help them understand your limitations. If the SSA finds that there is no full-time work that you can reasonably be expected to do, then your claim for benefits can be approved even though there is no listing for CRPS in the Blue Book.

The key factor in the RFC is that the SSA must find that there is no work that you can reasonably be expected to do. If you were working in a job that required you to be on the phone frequently before you got sick but now you have CRPS and chronic excruciating pain in your arm you cannot be expected to be on the phone for 6-8 hours per day. That’s not reasonable, so your claim for benefits would be approved.

Filing A Claim for Disability Benefits

You will still need to file a claim for Social Security disability benefits if you want to receive benefits even though your condition isn’t listed in the Blue Book. When you file your claim paperwork, make sure that you check the box indicating you want a Residual Functional Capacity exam. You can apply online or you can apply in person at your local SSA office. If you are going to ask for an RFC, you should apply in person so that a staff member can help make sure you indicate that you want to have an RFC evaluation done.

Resources Found Via:

https://www.ssa.gov/benefits/disability/

https://www.disability-benefits-help.org/ssdi/qualify-for-ssdi

https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm

https://www.disability-benefits-help.org/disability-tips/understand-and-complete-residual-functional-capacity-rfc-form

https://www.ssa.gov/OP_Home/cfr20/416/416-0945.htm

https://secure.ssa.gov/iClaim/dib

https://secure.ssa.gov/ICON/main.jsp

This article was written by the Outreach Team at Disability Benefits Help. They provide information about disability benefits and the application process. To learn more, please visit their website at http://www.disability-benefits-help.org/ or by emailing them at [email protected].

Please consider making a donation to RSDSA today!

Written by Laura Hinkle for the RSDSA blog.

On August 24, 1994, I fell climbing up to Grinnell Glacier in Glacier National Park and had a minor break my ankle. My life changed forever as I was diagnosed with RSD.

I went through the common treatments in that time frame. The only thing that I found helpful was methadone and it became my answer to my RSD pain. But by 2013, the methadone was destroying my heart. In 2014 after 20 years on methadone, I was told that if I stayed on methadone I would not live much longer, or I could detox off methadone and live experiencing more pain. What a choice!

I opted to detox off methadone and had to do it cold turkey because I was allergic to the detox meds. It was terrible! After two months, I thought the pain would once again kill me. I returned to my chronic pain doctor and he wanted to put me back on methadone in order to give me some type of life until my heart gave out. I filled the script and went home. However, after taking the first set of pills, I realized what I was doing. I had just detoxed off it and now I was actually taking it again! Once again, I stopped taking methadone and returned to my pain doctor. That was when he told me that if I did not stay on narcotics that I would not be bringing money in for the clinic. I got up and walked out of my appointment and never returned.

But now what?

I began my search on what to do. I came across PEAPure and tried it. I had some good results. I also went into counseling and learned to mourn the death of my dreams through RSD. I learned how to make peace with my RSD instead of always being in a battle with it. I learned that I had been missing a very important pain coping mechanism called my brain. My pain was still there, just as intense, but I slowly started developing a new life.

Part of my new life was swimming. I have always enjoyed swimming, though I have never thought I was very good at it. My primary doctor encouraged me to go to this place called OPC and use their therapy pool. At first I could barely last even five minutes, but I kept going back. I started to meet people and develop friendships. By the end of the first year, I could tolerate a half hour or so. The following year, I increased my time even more. One day, I took a leap of faith and went into their lap swimming pool. I swam one length. Everyone applauded for me. I was shocked at the support. They knew what a milestone this was for me.

Fast forward to August 2018 and RSD is now everywhere in my body. I am still using my walker. I am often rescued from the pool by the lifeguard, because my legs, or my body in general, just stops working because the pain is too intense. Yet, I am so thankful that I am in a safe place and around understanding people. They help me out when I need it. I also met two people who were part of the Senior Olympics and they started encouraging me to go to the next Olympics. I started training yet took it as easy as possible for my RSD. And, I continued to be rescued monthly.

2019 has been a game changer for me. It started with me landing in the hospital because in January, I fell from the pain and didn’t regain consciousness for about eight hours. But in April, I felt strong enough to no longer use my walker. The pain was still there, but I was physically stronger. In May, I walked the first mile I had ever walked since August 24, 1994. This was a big deal for me as I could not even walk to my mailbox in 2017! I just started slow. Halfway to my mailbox, and kept increasing the distance.

I was still being challenged to do swimming in the Olympics. My problem is that my pain skyrockets with vibrations. In the water, the vibrations were bruising my entire body. I was scared that my body would give out and I would have to be rescued again. I was going to dive into the pool, and even though it was off the side, that “smack” into the water was sometimes paralyzing me. I also had never competed in any athletic event my entire 59 years of life. I was terrified. I had a long list of reasons not to participate.

My new friends, like Lisa, kept encouraging me. She told me that life has opportunities in it and it was up to me if I seized them and lived in that moment for all it had to offer or if I declined the opportunity. I knew that RSD had taken away opportunities in life, but maybe it was time to do something different like rely on people if my pain went out of control and seize the opportunity that was before me. Therefore, I signed up for the Olympics in July. I knew that if I decided not to go, the cost would be a donation to them. By the end of July, once again, my RSD was so flared that I could barely walk or do much of anything.

Fast forward again to August 12, 2019 at 8:00 in the morning. I was warming up for two swimming competitions at the Michigan Senior Olympics. It was all just blowing my mind. I dove in at about 9:15 AM for the 50-meter breaststroke. I dove in again at about 11:15 for the 200-meter breaststroke. I was high on adrenaline and competing in my very first athletic competition. Yes, I hurt like crazy. My RSD was not happy with me. And yet, I was still doing it. I was swimming in the Senior Olympics. Much to my surprise I received a silver medal in the 50 and a gold medal in the 200! I had won two Michigan Senior Olympic medals! I was blown away.

By the time I got home, I could barely move and by evening, I could not move. The last week has been filled with extra intense pain and I am smiling inside and out. See, RSD took a lot of things from me (as it does anyone). For the first time, since August 24, 1994, I am getting a life back. Yes, it is a different life than I ever thought, but it still is a life… a life that I can call good. The pain is intense, and I am learning how to have an intense life anyway. It blows my mind that I swam like I did. It blows my mind that I actually walked a mile even though it took me 24 1/2 years to do so.

This week, I will have had RSD for 25 years. Every day I hurt and wonder how I will get through the day. And yet, now I have learned how to challenge myself in small opportunities that accumulate into big adventures. I have been able to develop a new life with RSD that I keep tweaking daily. I keep looking for those opportunities now that I can work towards obtaining. I have learned my brain has just as much to do with my RSD as my body.

My newly found friends who are swimmers ask me what my goals are for next summer. My response was that I hope to try kayaking even though I have no idea how I will ever get my legs into the kayak. I also want to try paddle boarding, but I have no idea how I will ever be able to stand, and even fall into the water with my RSD taking over my body. My friends clarified their question by asking me what I would be doing for swimming. My response was simple: get physically stronger and swim faster by swimming more effectively. I was told that next summer are qualifiers to go to the National Senior Olympics where all the winners of each state come together to compete. My friends want me to attend the Nationals. I explained that my RSD does not permit me to travel more than several hours in a car, and there is no way I can go on an airplane as there are way too many vibrations. I live in Michigan and the Nationals are in Florida. They looked at me, smiled and said that I never thought I would be able to swim in the Michigan Senior Olympics either!

Please consider making a donation to RSDSA today!