I have been living with CRPS for about 4 years now. CRPS is the most painful disease known to mankind. More painful than unprepared child birth, stage 4 cancer, and even amputation according to the McGill Pain Index. The pain never stops and when it flares up I can be in bed for days or… Continue reading CRPS FACTS!
Recently a lot of people have been asking me what is CRPS/RSD and how did I get it. I never realized that I didn't share how all this came to be. So without further ado here is my story! ------ A horse and having a bunion surgery! I was stepped on a 900lb horse in… Continue reading How It Happened!
“We are not meant to be boxed in. To be labeled. To be defined by the outside world so that it may feel more comfortable when it looks at us. So that it feels like it has us figured out. We are multifaceted. We are MANY things.” Sophia Bush What are the MANY things that… Continue reading I AM MANY
Having CRPS you have no idea what the day will bring! CRPS is an EVERYDAY thing! It’s been a long day! I’ve been in and out of one urgent care clinic to be sent to another for a full work up. I left the house at 9:30ish this morning and didn’t get back home until… Continue reading CRPS Is An Everyday Thing!
The stories we want to hear the least are the ones we need to hear the most. To my fellow Sister Survivors and Army Of Women. I’m so proud of every one you! You showed no fear and looked evil in the eye for the very last time! As a former USA Gymnastics gymnast, who… Continue reading Dear Sister Survivors
Dear World, My name is Margaret Twitty and I am a 27 year old suffering with Complex Regional Pain Syndrome/ Reflex Sympathetic Dystrophy also called (CRPS/RSD). You may know me personally or you may not, but who I am is not really important, only the fact that I live in chronic pain. Having chronic pain… Continue reading A Letter To The World
Let your pain empower you, Not all of us are destined to break. And if you find yourself broken, Allow for each broken piece To faithfully make sense I would never put public speaking on my "special skills" list, but over these past years I have been called to do just that more than a number of times.… Continue reading Pain Makes Us Who We Are
Chronic Pain: A Burden Often Shared By JANE E. BRODY Chronic pain is a family problem. When people experience unrelenting pain, everyone they live with and love is likely to suffer. The frustration, anxiety, stress and depression that often go with chronic pain can also afflict family members and friends who feel helpless to provide… Continue reading Chronic Pain: A Burden Often Shared
So often we find ourselves in situations where people are trying their best to help us when in reality they very well may be hurting us. I can see how being a loved one of someone with CRPS can be challenging in more ways than one. You may find yourself not knowing what we want… Continue reading 5 Do’s and Don’ts When It Comes to People with CRPS
"We’re big believers in Margaret Twitty’s favorite saying,"Know The Person Not The Disability.” But sometimes, learning more about a disability is an important way to understand what others around us are going through. With that in mind, we asked Margaret Twitty, founder of the 2/17 clothing line and Complex Regional Pain Syndrome sufferer to share… Continue reading She’s Fit To Lead Article
“I am 24 and performed gymnastics practically my whole life. I was recently diagnosed with Complex Regional Pain Syndrome (CRPS), a rare neurological disorder. It began after I had suffered trauma to my right foot when a horse stepped on it. A few months later I had surgery on the same foot to correct a… Continue reading Move Forward PT
Hi my name is Margaret Twitty and I live in Connecticut. For 18 years I was an Athlete more specifically I was a Gymnast for 18 years. But that all changed on February 17, 2015 when I was diagnosed with CRPS. CRPS is a rare illness/diagnosis called 'Complex Regional Pain Syndrome' (CRPS). CRPS is… Continue reading Sharing My Story
YES, CRPS/RSD IS A TYPE OF CHRONIC PAIN! Chronic pain is a serious problem but is often made worse by misinformation, negative attitudes and beliefs, outdated ideas, negative emotions. It is recognised that chronic pain is often mismanaged, not because we lack adequate treatments, but because of fear and ignorance. These steps are designed to… Continue reading Ten Steps To Overcoming Chronic Pain
MCGILL PAIN INDEX - WHERE IS CRPS PAIN RANKED? Did you know that Causalgia is Latin for "burning pain" it was the first name coined for CRPS. The McGill Pain Index was first developed in 1971 as a way of gauging the quality of pain. It was developed at McGill University by Melzack and Torgerson. … Continue reading The McGill Pain Index Scale
RSD/CRSP will impact your everyday life style and make it increasingly stressful for the caregiver to remain focused on his/her loved one daily, says Alabama liability attorney Keith T. Belt. Caregivers NEED to have personal time and activities for themselves and to avoid burning out and becoming frustrated with providing for the needs of a RSD/CRPS patient… Continue reading Support Our Caregivers!
How to help a love one who is struggling with CRPS/RSD. The best way to help them is to follow The "LESLIE" Method. LOVE: An RSD/CRPS patient needs to know that regardless of what they are going through, how much they are able to do, or the pain they are feeling they are still loved. They… Continue reading The “LESLIE” Method
Imagine what it would be like to endure an external numbness with such an internal burning sensation with pressure so incredibly intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire, ready to implode any moment. You lose the ability to tell… Continue reading My Battle With CRPS/RSD
Confused, Forgetful, Limited Concentration, Mixing Up Words, Complete Loss of Speech, Severe Short-Term Memory Loss... Many of the millions of people across the planet with severe pain complain of these cognitive difficulties, some even saying that this is one of the most debilitating (and embarrassing) symptoms, referred to as "Brain Fog" when it occurs in… Continue reading Why Am I So Confused?
A Doctor's Letter to Patients with a Chronic Illness As chronic pain patients, we often get frustrated and even angry with doctors. We just want a doctor who will understand how much pain we're in and will try to help us get some relief. But sometimes doctors seem like they'd rather not be bothered with… Continue reading A Letter to Patients With Chronic Disease
SMILING THROUGH THE PAIN: Paula Abdul maintains a positive attitude throughout her battle with chronic pain caused by RSD. Pop icon, Paula Abdul, opens up about her daily struggle with Reflex Sympathetic Dystrophy. Mediaplanet: What is RSD and how does it manifest itself? How would you describe RSD? Paula Abdul: RSD stands for “Reflex Sympathetic Dystrophy.” It’s… Continue reading Paula Abdul: Putting the Spotlight on Rare Disease
CRPS/RSD is called an "invisible disease" because the signs and symptoms are often just a pain that lasts longer than the initial injury and is more intense and continuous. It makes for a unique situation that places a burden of proof on the patient and often doctors or others who have not heard about CRPS/RSD tell… Continue reading Uncovering “Invisible Diseases”
CRPS: The Silent Injury Exposed There are many types of injuries and conditions that can afflict us, and nerve damage can be among the worst. There may be no way to find out if nerve damage is caused by something major or minor, and in some cases, you simply have to go through many tests… Continue reading CRPS & The Legal System
HAPPY NEW YEARS! I just want to let everyone know that I’ve been getting a lot more emails recently from people that are struggling with CRPS, I’m trying to email everyone as fast as I possibly can. So if I don’t email you right away that’s probably why. If it's taking me a few… Continue reading Reaching Out
What is "The LiftUp Lifestyle" The LiftUp Lifestyle is a community that helps you Connect, Encourage, and Support one another. Their Value is- "To put meaning behind everything that you do. To look at the people to the right of you and to the left of you with compassion. To see others as an extension of… Continue reading The LiftUp Lifestyle
#IAMAVOTER! It has taken me 26 years to realize that my voice does matters, that my vote does matters! I was one of those people who never fully understood the way government works or how it applies to me. It took me being diagnosed with CRPS a very rare, very painful chronic diagnosis that I… Continue reading WHY I VOTED
A few weeks ago I was contacted by Diamond Headache Clinic, the oldest and largest headache center in Chicago, Illinois. They asked me to help raise awareness about invisible illnesses by sharing their Slideshow. This incredible Clinic created a presentation about the different types of migraine headaches and symptoms in children. Children between the ages of… Continue reading Diamond Headache Clinic
Some are teachers, some are musicians, and some legacies are in themselves dynasties. But my family’s legacy has a number of things. For instance.. Girls have ALWAYS been born first on my dad’s side of the family, my ancestors come from slavery, my dad, my brother, and I can’t read music but we know how… Continue reading Every family has a legacy, and this is mine