Are you in search of Support?

Do you have crps, and in search of support?

Have you had trouble finding a support group for Crps?
We here at Rsd/Crps Doesn’t Own Me know exactly how that feels.
Our staff all know what this is like because we all live with crps ourselves, and we know how important gaining support from others really is.

So knowing all the we began searching for a safe, non-hackable, private text and voice service for ourselves and fellow Crps patients, and even their families to find much needed support.
To become part of our support chat please check out this link and answer a few short questions.
https://goo.gl/forms/zyedJyS8zSGQKQF22

Once approved you will get an email with directions and a link inviting you to our discord chat server.
If you have any questions please email rsdcrps@gmail.com

 

Life after Diagnosis

Not a single veteran of the RSD/CRPS community can say their diagnosis did not change their lives in some way. Many faces uncertainty, job loss, hobbies no longer joyful or even possible dependant on the activity.

But finding life after diagnosis, be it with CRPS, cancer, diabetes, or really anything else, can be there greatest gift we give ourselves. Can change our treatment approach and even our treatment SUCCESS.

While there will still be the bad days, the better days will grow to out number them because we have something to look forward to. Our founder loved the theater. Loved acting. Loved making people smile and laugh.

And for years she thought it was behind her after she was injured. It's been over 10 years since her injury. Is this the life she expected? No. But the life she has now is different, but still good.

Not only did she take on the challenge to create a new way to enjoy her love the theater, but to bring those smiles and laughs to others. She became a podcaster on YouTube for a game called Minecraft as RSDAngelOnFire.

She has grown a small following both here and in her new approach to get hobbies with CRPS. And like us all, she still has her up and down days which means while she's very busy making those amazing and fun videos, she is still one of us. And today is her 8 year anniversary of being RSD/CRPS Doesn't Own Me's founder.

So let's give a HUGE round of applause for Christa and her fight to live by her own advise, that there truly is life after diagnosis!

Way to go Christa!

CRPS & the Snowball Effect: Sleep

Effects Of Sleep Deprivation

When you pull a rubber band to its furthest point, what happens? It breaks. But what if our bodies are that rubber band and our pain is constantly pulling our bodies needs and our lives we try to live in, in two different directions. Eventually something will give.

And at first, it’s painfully obvious to our friends and families that live with us. Our ability to sleep is going, going, gone! But what we don’t always see, is the full impact our sleep really has on us in our every day lives before having RSD/CRPS.

On healthline.com, they highlight what a lack of sleep can cause. And it isn’t a short list. As a matter of fact, a number of things we frequently refer in chat to as being part of the CRPS itself, but not only can some of the issues be blamed on the medicines we take, but many can be blamed often directly on the sleep we aren’t getting.

Deprivation
Effects Of Sleep Deprivation

Sleep is a critical part of our bodies healing process. It helps it regulate our metabolism, helps our brain recover from all that we put it through during the day, helps our body stay stronger, and fight against the worlds many colds, flu, and viruses out there.

So if you haven’t discussed your sleeping issues with your doctor, maybe put this on your list. Because while the avalanche might start with someone yelling called CRPS in the mountains, much of the snow, is that sleep we aren’t getting.

Athens Teen Struggling with CRPS

Sydney Jones

Posted by Bobby Shuttleworth, Reporter on 

ATHENS, AL (WAFF) – Imagine your child being in excruciating pain, and nothing you or her doctors can do will give her relief. That’s what the parents of an Athens High School athlete were dealing with.

Not too long ago, 16-year-old Sydney Jones was in the hospital for some stomach problems when her feet and legs became numb.

“It felt like snakes were wrapped around them, just squeezing them,” she said.

Her mother, Bernadette Jones, said she initially thought her feet were just asleep from being in the same position. She said the nurses thought it could have been some sort of reaction to the medication they had given her.

She said her daughter wasn’t walking normally when she was discharged. Days later, the pain went away.

“It flared back up a couple of weeks later. The pain was excruciating,” said Bernadette.

Another trip to the emergency room followed.

“So they did ultrasounds and everything came back normal,” said Bernadette.

They then took their daughter to Children’s Hospital in Atlanta. Her mother said Sydney was diagnosed with complex regional pain syndrome, or CRPS.

“The body can experience an injury or some kind of traumatic experience, and even after you’ve healed from that illness or that injury, the brain keeps sending pain signals to random parts of your body,” Bernadette said.

They eventually landed at the Cleveland Clinic for three weeks, which has a program for children with chronic pain. Her dad says it was not a cure.

“It was more of teaching her how to cope with the chronic pain that she was going to be experiencing,” said Lester Jones.

It’s a challenge for any parent.

“My role as a father is not only to be a provider but also a protector, the one that’s supposed to help my children feel safe,” said Lester.

“And as a father and you feel helpless and there is nothing, there is no source or remedy that I can give to that,” he said. “That is the worst type of experience a father can have.”

Sydney is a junior at Athens High School. She used to play basketball, but this condition caused her a lot of pain even during games.  She tried to push through it but eventually she had to stop.

Her parents were told that sometimes children grow out this condition, but there are adults who still struggle with chronic pain.

Sydney is leaning toward a career in health care as a forensic nurse.

“I also just thought about being a physical therapist because physical therapy helped me at one point. And I feel like doing that can also help others,” Sydney said.

The prayer for Sydney is to have a productive life and not let pain be in control.

Copyright 2016 WAFF. All rights reserved.

Disabled: Superhero in Disguise

This weekend I got to enjoy the movie Doctor Strange with my family. I have always been a major comic book nerd and when there is a Marvel or DC movie I am all over it.
superheroes
Benedict Cumberbatch’s portrayal of Doctor Strange was amazing but not because of the character’s heroism but because of the character’s disability.
In the beginning of the movie, you meet an overly capable Doctor, who borders on egotistical, top of his field in the medicinal arts. One rainy night he is speeding along a two-lane highway in the mountains and loses control crashing down the mountain side.
He awakes with titanium rods in his hands, rendering them completely useless, broken and nerve damaged.
Strange finds himself hopeless and searching for healing within his field.
All he wants is to be healed.
He meets a man who shouldn’t be healed, and from him learns of a place that teaches how to heal oneself. So he sells off all of his possessions and leaves in search of this place.
His journey brings him to a foreign land with nothing to his name and no friends in sight.
An ancient magical power is shown to him in and he doubts his ability to harness it.
Strange does not believe that his pain riddled and nerve damaged hands are capable of anything. He has lost all faith in himself.
It isn’t until he has no choice but to make a miracle happen that he learns what he is capable of.
We hold power inside of ourselves.
Our power may not be the ability to conjure strands of glowing matter that can bend all of time and space, but we are able of more so than we give ourselves credit.
Our lives have been turned upside down due to some unfortunate turn of events and suddenly we were stricken with life changing heartbreak. Should we just give up and believe that life is over? Should we hang up our capes and believe that we had a good run while it lasted?
No! We have a cape for a reason!
We are superheroes! We are able to mold our world around us through our superpowers that live inside our words and our actions.
We are far from powerless. The disabilities we have before us are a challenge but they teach us to become creative and innovative. The path is never straight or smooth, but it is rocky, steep, and horribly lonely. Yet we walk. We are still heroes in spite of it all.
At the end of the movie, after the bad guy was vanquished and the world set right, Strange looks down at his hands. They are still a mangled, shaking mass of damage flesh. Yet he was able to do all that I mentioned before.
We are able to do just that, we can live life in spite of our disabilities.
They don’t win, we live, we Thrive!
And through us, millions more will be inspired to be the heroes of tomorrow!
Excelsior!

Greetings…. My name is…

Hi my name is...
Hi my name is...
Hi my name is…

Hi my name is Complex Regional Pain Syndrome… some friends who have known me for a very long time call me RSD or CRPS…… I’m an invisible inflammatory disease that attacks your sympathetic nervous system.
I am now velcroed to you for life. If you have CRPS you hope for remission but there is no cure.
I’m so sneaky–I don’t show up in your blood work, in x-rays, MRI’s can’t detect me, basically there is no test to prove you have me. There are only test to rule out other things.
Others around you can’t see me or hear me, but YOUR body feels me.
I can attack you anywhere and anyway I please. And, I will. Constantly.
I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.
Remember when you and energy ran around together and had fun?
I took energy from you, and gave you exhaustion. Try to have fun now.
I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can cause one limb to change color, look bruised, feel super sensitive randomly for seemingly no reason.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.
OH, and just because I started off in one part of your body, don’t think I can’t travel and effect other limbs or any other part of your body I so choose to torment. I can, and likely I will.
I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That’s me. Crying for no reason? Angry for no reason? That’s probably me too. It is hard to not feel hopeless when you have me beating your body up constantly.
I can make you scream out loud, anytime of day or night, anywhere you are because I can create pain that makes you sure someone just stabbed you with a knife. Making you look crazy is fun for me.
I can make your hair fall out, your nails become dry and brittle, cause acne, cause dry skin, the sky’s the limit with me.
I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don’t discriminate.
Some of my other inflammatory disease friends often join me, giving you even more to deal with.
If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me. I chose you for various reasons: That sports injury, needle stick,, or that car accident, or maybe it was the surgery to correct a bone problem.. Whatever the cause, I’m here to stay.
I hear you’re going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can even try to help you effectively. Most of them will make you feel like you are to blame, or worse, it is all in your head. I’ll convince them that you are crazy because normal people know that you can’t have all those symptoms all over your body and still walk around looking normal.
You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
There are so many other ways I can make you sick and miserable, the list is endless – If your body is all of a sudden dealing with things that were never issues before…yep…. that’s probably me.
Shortness of breath or “air hunger?” Yep, probably me.
Bone density problems?
Can’t regulate body temp and poor circulation?
Constant ‘electric jolts’? Yep, probably me.
I told you the list was endless.
You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.
You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you’ve seen, just how debilitating I am and how ill and exhausted you really feel. In all probability you will get a referral from these ‘understanding’ (clueless) doctors, to see a psychiatrist.
I will make you question your own sanity at times. I will make you contemplate unthinkable scenarios.
Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.
Even after explaining to those you interact with regularly that I’m the most painful disease known to man, and there is no cure, they will say things like “I hope you have a speedy recovery”. Those who don’t know me well have no idea how cruel and unusual my punishment can be.
Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago.
They’ll also say things like, “if you just get up and move, get outside and do things, you’ll feel better.” They won’t understand that I take away the ‘gas’ that powers your body and mind to ENABLE you to do those things.
Some will start talking behind your back, they’ll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a “normal” person, and can’t remember what you were going to say next. You’ll be told things like, “Oh, my sister had that, and she’s fine on her medication” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that sister is fine on the medication SHE’S taking, doesn’t mean it will work for you.
They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ can be effected.
The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.

Author Heather Gilmore… But kindly shared with the RCDOM community by Gaylynne Gale

Be Like Bill…..

3843727 (1)

This is Bill.
Bill isn’t part of the CRPS community but he told that his Aunt had CRPS.
Instead of judging her for her sudden inability to join family functions he is empathetic.
He calls his Aunt and asks how he can help.
He asks her questions about her condition. He makes others aware of CRPS.
Bill is helping and making a change.
Please Be Like Bill!
Please share awareness of CRPS.
No Judgement! No Hate!

Just Hope!

The Wings of Strength

The tough week found me back to back for about a month. I became angry at myself, the world, the flares. They took me down into a dark place that I hadn’t visited in years. My anxiety flared. My anger became worse. I began to hide from everyone.

I experienced my first “freeze”. My left leg engulfed in ice. My right leg engulfed in fire. I began to realize this is a sign of the monster getting worse. The almost falls at home or in the store. The pushing myself through my day because I wouldn’t accept what is happening. Only to find myself laying in my bed on weekends and not wanting to move.

But last night I realized that while my anger and sadness are justified as I reel from losing my old life. My new life which is full of pain is also full of strength. Because everyday I win even if I feel like I am losing. I win because I keep moving. I win because I keep getting up. I win because when I am about to fall or I do fall, I pull myself up and keep going. I win because I laugh. I win because I am alive.

We all have those Wings of Strength. Let them help carry you through the day and keep fighting my fellow Warriors!riseabove

And a Gold Medal for Team USA (& Pain Warriors)

Paralympics USA Gold

On September 8th, the U.S. Women’s Wheelchair Basketball team started the Rio Paralympics with a record-breaking win. And yesterday, they took their trip to Rio another step further, they also took the GOLD.

Paralympics USA Gold
USA Women’s Wheelchair Basketball Team takes the GOLD

With every team are individuals who excel in their particular aspect of the games. And with individual of that team is a person who came to participate in the sport for one reason or another. And one of those who participated in this years US Women’s team this year, is Abby Dunkin, a fellow pain warrior from Texas.

Both Abby and Rachel Morris have done something that most American’s are brought up to identify as being the best of the best in their sport. They became part of an internationally recognized event and they have CRPS. Now maybe this was not what they expected to do when they grew up. But as Rachel discussed just two years ago after getting bronze in London weeks after her injury during training,

“They believe I can do something in the sport. I’m on the talent transfer for the first six months and then hopefully after the Worlds I can go through as a rower to Rio 2016.”

 

We will fall down, we will have challenges, but we can keep fighting to make that change in our lives. So remember these two. That they are proof when someone gives themselves a goal, they can achieve greatness. And while it takes time, effort, dedication, and most of all a great team of people supporting you for when you fall down, we can do amazing things.

Now, I may never win the gold at the Olympics, but I sure will win the gold of achieving my goals of helping support others. And that is all the winning I need.

Morris shines as Britain claims 3 rowing golds

CRPS Gold Medalist

Britain enjoyed a golden morning in the Paralympic rowing, picking up three gold medals. Rachel Morris is a Paralympic champion in a second sport after claiming rowing gold in Rio yesterday, while Lauren Rowles and Laurence Whiteley also won the double sculls, before the mixed coxed fours completed the run of success, to make it 18 gold medals at the Games for Paralympics Great Britain.

CRPS Gold Medalist
Rachel Morris celebrates after winning the ASW1x Final A gold in Rio de Janeiro yesterday. (AFP)

The 37-year-old Morris, from Guildford in Surrey, won a road cycling time-trial gold in Beijing eight years ago. She was third in the road race on her hand bike at London 2012, six weeks after being hit by a car in training.

Four years on Morris won the women’s arms-only single sculls with a perfectly timed surge in the second half of the 1,000 m race. Farnham’s Morris, who had both legs amputated because of complex regional pain syndrome, finished ahead of China’s Lili Wang, while Israel’s Moran Samuel took bronze.

She switched to rowing in 2013 and now has three Paralympic medals across two sports, adding to the hand-cycling time trial gold she won in Beijing in 2008 and bronze at London 2012.

Rowles and Whiteley then led from the start and held off China in the double sculls, before Pamela Relph won a second gold in the mixed coxed fours, having won the same event at London 2012. James Fox, Daniel Brown and Grace Clough, plus cox Oliver James, celebrated with her on a memorable day for British rowing.

Theirs was a fourth British medal from the morning at the regatta, after Tom Aggar had to settle for bronze in the men’s arms-only single sculls. Aggar won gold in Beijing and was unbeaten in four years until London 2012, where he was bitterly disappointed to finish fourth. He dug deep to return to the podium in Brazil.

Para-triathlete Steadman, who was born without a lower right arm, had been favorite to add Paralympic gold to her 2013 and 2014 world titles. But the 23-year-old former swimmer from Peterborough lost out to the USA’s Grace Norman by one minute and four seconds.

In the velodrome, London 2012 gold medalist Fachie, who has a congenital eye condition, and his pilot Pete Mitchell clocked a time of one minute 0.241 seconds to take silver, 0.419 seconds behind winner Tristan Bangma of the
Netherlands.

Originally posted on Gulf Times September 11 2016 08:25 PM (Author not credited)