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.

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!

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)

I am a Liar

Liar

Liar

I am a liar…

In day-to-day life there are so many roles we have to play. For me these are wife, daughter, sister, aunt, niece, employee, advocate and one I feel is a “dark mark”, patient.

Most of these roles depend on me falling into parameters and meeting obligations. I must do what I have to in order to fulfill my roles in life.

But I sometimes can’t.

 

I am a Liar….

I lie to myself, I lie to my boss, I lie to my parents, I lie to my family.

I lie…..

I tell myself that I can do it all alone.

I tell myself that no one cares about my problems, that no one will be able to handle them and be there for me. I tell myself that my parents and my family are too burdened with me and they would be better off without me. I tell myself that my husband would be more successful and happier without me around to bug him.

I tell myself that my friends would have more fun, and do greater and better things without me. I tell myself that my boss would be better served by an employee with a better skill set than mine.

I lie…..

I tell myself if I only would shut my mouth and be submissive people would like me more.

I tell myself not to complain so much because my problems aren’t important and my pain will not be empathized with.

I lie….

I tell myself that I am unworthy of love.

I tell myself I am unworthy of growth, professionally and personally.

I tell myself that I deserve the pain that I am going through.

I lie…

I tell myself that some unknown sin or past ill deed is why I am in this situation, that I am to blame for all my trouble and every tear on my pillow will not pay the price for my past.

I lie….

I lie because the truth is so hard to face.

 

In truth..

My Husband loves me dearly. He calls me beautiful and holds me when I feel weak.

In truth….

My Mom loves me more than the sun, the moon and the stars combined.

In truth….

I still have my Dad wrapped around my little finger at 28.

In truth…

My Friends are loving caring people who truly care, who drop whatever they are doing to talk on the phone and always seem to have some heartfelt advice to share.

In truth…

I rock at my job.

In truth…

I am loud and boisterous. I speak my mind. I laugh too loud and cry too often. I wear my heart on my sleeve. I feel deeply.

I love. I cherish. I empathize.

 

But yet I lie….

 

I lie because at some time or another we forget our worth.

We stray from seeing life as a miracle and start seeing it as a curse.

Less like heaven and more like hell.

I cannot put into words exactly why that is, because it is different for all.

For me, my self-worth has always been contingent upon how I think the world sees me.

 

In truth…

I am a miracle.

In truth…

I am blessed

In truth…

I did nothing that caused me to get CRPS.

In truth…

I am worthy.

 

My name is Christa Whightsel.

I am a recovering Liar.

It has been an hour since my last lie.

I will lie and I will tell the truth.

But I will not allow the lie to become the truth.

CRPS: The true cost of an incident?

CRPS: How can one begin to explain chronic pain?

For those who have never experienced constant chronic pain typically seen in CRPS, it is a foreign language, always just around the peripheral but never omnipresent. It serves a purpose to keep us safe, but it is never intended to stay for long. The injury heals,time moves on and so does the pain. That is the way it has always been.

Until one day it doesn’t, instead it lingers and invades every aspect of your daily life.

There are two different ages in my life that I mark as before and after being diagnosed with CRPS. Before diagnosis, I could outrun circles around a circle. After diagnosis, I am lucky if I am able to put my own shoes on.

It is hard for people who have never experienced this constant nagging, burning pain to comprehend this.

So many times that I have lost count I have been told that “These things take time, you will be better by (time frame).” That time frame always comes and goes as a minor blip on the calendar and I am worse, not in any way better.

I was made aware of an interesting case of a woman who claims to have been injured by a wine bottle whilst out shopping. She claims that a result of this injury is that she has developed CRPS. She says that because the wine was not placed in a double bag that the bag tore resulting in her injury. As a result of this belief and due to the nature of the injury, she has decided to file a claim against the store for 8.3 million dollars. 

Woman Sues for 8.3 Million

I shared this story with friends outside of the CRPS community and got reactions in a large range.  Many called her greedy and selfish and some commented that she didn’t need that amount of money. Some also said that she was making it look worse by complaining about the use of a crutch.

I will not deny for a lot of reasons we are a “sue for no reason” type of society at times, but this is the one time where this Author believes this is a justifiable number that covers the need.

Imagine that you are middle aged and you have been putting what little savings you have aside for retirement with the rest eventually going to your kids.
One day you do something you have done a million times before and go to the store. This is something we all do almost every week, only for this lady fate had another idea.
A wine bottle breaks through a plastic bag and lands on her foot creating a series of unfortunate events leading to the development of CRPS.

Suddenly all of your carefully laid plans are uprooted and dashed to the four winds. You can’t work, can’t care for yourself let alone others. A well provided family can turn destitute almost over night due to this disease.

Suddenly you have to account for paying for medications, doctors, co-pays and specialists that you never knew existed. Your days become a mix of taking medications for pain, having procedures just to keep minimal function, taking more medication for the side effects of the procedures and yet more medications for the pain. These are just the minor things and already the bill has steadily begun to increase, soon becoming very high indeed.  Eventually you have to move on to surgical procedures that often stretch to the tune of hundreds of thousands of dollars at a time.

All the while there is still the family to provide for,  but how is this even possible?
In today’s society we cannot go like our past ancestors and live on only one salary. More and more families now depend on having two bread winners to ensure stability in the home.
What if suddenly one of these crutches breaks?

Let’s do a bit of Math:

  1. Average Income of a Family in the United States- $51,939(1)
  2. “Annual premiums for employer-sponsored family health coverage $16,351 this year, with workers on average paying $4,565 toward the cost of their coverage” (2)
  3. Average Mortgage per year- $12,876 (3)
  4. Cost of Food (Low Budget, for One Year) – $7228– about $139 per week (4)
  5. Co-pays- Four Appointments a month (PT, GP, Specialist, and Pain Management.) Average is about $20 an appt.- $960 a year.

Let us start there. Let’s cut the average income in half since we are all for equality- $25,969.50

Minus Insurance-$21,404.50

Minus Mortgage- $8528.50

Minus Food- $1300.50

Minus Copays-$340.50

We are left with $340.50
That is $28.37 a month and we have not even covered taxes, car insurance, utilities and other necessities.
CRPS truth about income

Suddenly we can see the dire situation we are in and we are headed into the red pretty fast.

According to the article they say the lawsuit is:
“seeking non-economic damages for pain and suffering of $4.2 million, plus nearly $4.1 million in economic damages from $74,048 in medical expenses plus expected future medical expenses, loss of earned income and other expenses.” (5)

She is asking the highest number hoping to reach the stars below. I know I would do the same if someone asked me, “What is my life worth?”
She is doing the best thing that she knows how to do, with the ability she has left. Provide for herself and her family, it is just in a different way to somebody else.

What are your thoughts on this case and do you believe that the amount being sought is excessive? 

Please leave a comment below and let us know your opinion as we love to read your comments!

Sources:

  1. https://en.wikipedia.org/wiki/Household_income_in_the_United_States#/media/File:US_Real_Household_Median_Income_thru_2014.png
  2. http://www.ncsl.org/research/health/health-insurance-premiums.aspx
  3. http://www.fool.com/investing/general/2015/03/23/heres-the-average-americans-mortgage-payment-by-ag.aspx
  4. http://www.usatoday.com/story/news/nation/2013/05/01/grocery-costs-for-family/2104165/
  5. http://www.mailtribune.com/article/20160201/NEWS/160209975/101033/NEWS

Link between Enlarged Choroid Plexus & RSD/CRPS

Pain Taken Seriously

A New Study out of Aalto University

In conjunction with researchers from Helsinki University Hospital and Harvard Medical School , a study has shown a surprising connection that excites us here at RCDOM.

Pain Taken Seriously
When will our pain be taken seriously, the TIME IS NOW!

Their study consisted of 12 people with CRPS and 8 people with another form of chronic pain. Upon comparing their MRI’s, there was a strong similarity in all 12 CRPS patients that the other 8 lacked:

A 21% Volume Difference in the size of their Choroid Plexus.

For those that don’t know what your choroid plexus is: it is one of the major producers of fluid in your spinal cord and around your brain. This fluid protects and cushions the central nervous system and source for maintenance of the brain. It also is a point of entry for immune cells to enter the brain, so essentially it is a nervous system cosway.

In the past we have reported about glial cells. These cells are very important in the creation and maintenance of pathological pain state. If we can find out why glial cells are malfunctioning and why these researchers have found the choroid plexus is enlarged in patients with CRPS, we may find the cause and maybe even a solution to this pain that we are feeling.

This study is definitive proof that there is a connection between brain inflammation and chronic pain, such as CRPS. It also confirms suspicions that CRPS has connection to another well known autoimmune disease, multiple sclerosis. Multiple Sclerosis has been also found to be linked to a malfunctioning choroid plexus.

This new provides a large amount of hope to a community that needs it. I hope this opens many new doors for researchers to explore.

Study: 

Enlargement of choroid plexus in complex regional pain syndrome: http://www.nature.com/articles/srep14329

Additional studies of Interest: 

http://www.ncbi.nlm.nih.gov/pubmed/18354707

 May 25th, 2011
http://psychology.about.com/od/gindex/g/glialcells.htm

MAURY M. BREECHER Glial Cells and Pain Control
50th Annual Meeting of the American Headache Society  Boston, Massachusetts June 26-29, 2008

Maria – RSD Changes Everything, Even our Shoes

RSD Angel Express Newsletter

I’m Maria; I’m a wife and mother, fashionista and shoe enthusiast.  Not all of my days are bad, but no one knows about the really bad days because I hide them. Often, I feel like my CRPS has stolen my sense of self. I have a great doctor and on my good days I really enjoy life. My family knows what my battle with CRPS is like, but no one else really has a clue, until now.

I have Complex Regional Pain Syndrome CRPS. This is #myinvisiblefight.

When I worked for a school district, I  prided myself in my dress. I identified my inner self with sense of style and always being well put together. I owned stylish clothes, a mountain of shoes with cute heels; wedges, stilettos, strappy shoes, mules and all in different colors. I adore shoes. I love jewelry and always accessorized and coordinated my outfits with my jewelry. I could never wait for pay day!loved browsing my favorite local boutique and more often than not would pick up a new set. I wore my makeup tastefully to highlight my eyes and hair. I loved dolling  myself up everyday so that no matter what the situation, I felt like I was ready to tackle anything.

When I was diagnosed with CRPS in April of 2010, I was not prepared for the life changes ahead of me.

CRPS is the most pain neurologic disease that can be diagnosed. On the McGill pain scale, CRPS is listed above a first birth, kidney stones and having an amputation. This is daily pain, inflammation, and swelling that never lets up. It is always there. The symptoms never subside completely. CRPS typically occurs after an injury or surgery, although spontaneous cases have been reported.

CRPS is a non-discriminatory disease.

The sympathetic nervous system runs through the nervous system, the bones and all the organs. It puts the body in constant “fight or flight” mode so swallowing; digesting food and even the resting heart rate can be affected.
The first things that begin to happen to my body were severe allodynia, or extreme sensitivity to the lightest touch. Even the air from a ceiling fan would cause extreme sensations and pain. I had to change what clothing I wore, some fabrics were simply to harsh and uncomfortable and painful on my skin.  I went from tailored clothes to loose fitting because of the extreme sensitivity.

I did not yet know right away but CRPS was affecting my legs, it had started in my upper torso. My cute shoes turned into flat loafers and I could barely walk by the end of my work day. Still, I had to fulfill my contract through the first week of June with the school district. So on I carried, in my flat loafers as best I could, until summer break.

I spent the entire summer having tests run, and by the first week of August it was official that the CRPS  had spread and the symptoms continued to progress. It became painfully obvious that I would not be able to return to work. Within months I became homeboundand unable to drive.

Here is what I want you know about my invisible illness:

  • I don’t ever go out without makeup and a cute maxi dress or capris and cute shirt. I may look cute but I am always in pain.
  • When I am at home, I do not wear makeup. I wear a tank top and underwear.I am never cute or put together.
  • If someone drops by unannounced, I am embarrassed.
  • My once immaculate house is no longer pristine. I can not do housework. I can not afford to hire help. My daughter and husband do what they can when they get off work from their demanding jobs. Occasionally I put dishes in the dishwasher or a load of clothes in the wash.
  • My carpets used to be impeccably clean.They are now in desperate need of cleaning. 
  • I am on Medicare at the age of 46, and have been unable to receive SSI Disability because I worked for a school district and they paid into an alternative retirement system.
  • My 24-year-old daughter stepped in to help pay bills and support me. Everyday, I fear that I am halting the progression of her independence.
  • My son moved out at the age of 21- he could not stand to watch this disease progress.

You can not see the tears and heartache of a family that no longer depends on me for anything. They don’t call me for anything. They call to check and see if I am doing alright. My son calls and asks how my day is going.
You can’t know the toll this on taken on my intimate life. My husband and I have been married 26 years and are still very passionate about one another. Except, either I can’t or don’t want to be touched. It hurts.
You can’t see the days I can not bathe. I towel off, don’t smell fresh, hair unkempt, teeth not brushed because it hurts too much. The fatigue can be overwhelming and I sleep for 16-18 hours a day.
You can’t know the frustration of having a husband sleep in another room because I am awake 2-3 hours in the middle of the night watching tv, or on social media on my phone. Sleep eludes me or pain won’t let sleep so I am awake disturbing him.

It may sound like my marriage is unhealthy, but it is just the opposite. It’s better than ever. I never knew how much he loved me.

My husband has climbed in the shower to help me bathe, calls me to see if I have eaten and brings me food, he calls me from the grocery store to get a list. If I’m having a flare in the middle of the day, he or my daughter will leave work to be with me. They worry when I cry because I never cry. If I wake him at 2 am and I need to go to the emergency room, he is dressed in record time. That has happened a dozen times in the last 5 years. If he wasn’t able to take me for some reason there is always my daughter. She has given up days of work for me. Her boss understands and works with her.  For all of this, I am so grateful.
You can not see how much I miss driving to the store or taking myself to a restaurant. I have to wait for someone to pick me up be home. At this age I feel like a teenager waiting on my mom and dad.I have watched my daughter take on an authoritative role and I am the dependent. I hate this but at times it is what is needed. I am dependent on my family. They are #myarmy. 

You can not know how it feels not to be able to bathe myself or comb my own hair. This is not an all the time thing, but there have been spans of time where this is my reality. From totally put together to completely disheveled.

My despair is not constant, but when the depression settles in it comes with some dark thoughts. I have found myself thinking, Why am I here? What do I contribute? Am I a burden? Do I want to live?

That last question worries them the most. They assure me that I am wanted, loved….From what do they draw that conclusion? Don’t get me wrong, I am not suicidal but learning to be me in this skin has been tough. I will always share a smile, and a positive thought or phrase because I do believe better days are ahead. I do have faith and a belief that God and my family are reason enough to be here.
But my private thoughts aren’t always so bright.That is why you will never know how much I depend on a laugh, kind word, social media post a message on my phone….It is the simplest of gestures that get me through. They mean so much because someone took their time and energy to think of me when I can not always give in return.

So, that has become my purpose.  To be a beacon of happiness as best I can; to give back to others and to remind them of how they should be happy! There is so much to be thankful for and happy about. Lifting someone’s spirits because the same has been done for me is my mission.

“Never ever think your voice is lost in the universe….It is unique and needed…..You don’t know but I am listening for it.”
~Maria Anne Tripp Martinez

Reshared with Maria’s permission. Originally posted on patientworthy.com

CRPS UK Conference

CRPS UK Conference

CRPS UK Conference

CRPS UK is a patient led non-profit organization which is applying for registered charity status. As part of our aim to support people with CRPS we are hosting our 3rd conference on November 14th, 2015 9:30 am to 4:30 pm where people can meet others with CRPS, learn about current CRPS research and treatments and hear personal stories of living with CRPS.

CRPS UK Conference
CRPS UK Conference

Our distinguished speakers include:

  • Dr Andreas Goebel whose research into CRPS and immunology offers hope for new treatments.
  • Professor Candy McCabe who has focused her research on the relationship between sensory and movement systems and pain in CRPS.
  • Richmond Stace, a pain specialist physiotherapist with expertise in treating CRPS
  • Danielle Brown MBE, a Paralympic and Commonwealth gold medallist with CRPS
  • Julie Weymouth, an expert patient volunteer who works at the RNHRD with people in the hospital for CRPS treatment.
  • And many more.

The event is to be held at the Hilton Hotel Bath and costs £35 per person including lunch and refreshments. The fee covers the room hire, lunch and refreshments; all other costs are being met by CRPS UK.

For more information or to request a booking form please email admin@crps-uk.org
If you’d like to add this conference to your calendar, click here:

Remember:

We’re all in this together. We have one life, let’s make the best of it and work for a universal “CURE” as A.M. Styles called it.

You are the Cure – 1 in a Trillion
You are the “C.U.R.E.” It is within you to be the C.U.R.E. (Create Uplift be(silent) Resilient Everyday). Once you know and accept that you have the “C.U.R.E” inside then you are now rebuilding yourself to be the “T.R.I.L.L.I.O.N” dollar person like the Six Million Dollar man. You can rebuild your life by “Trying it, Remembering it, Investing it, Living it, Loving, It, Owning it, Needing it.” Which is all part of life. We all are valuable we just have to know “IT” and believe IT. So when asked about a “C.U.R.E.” tell everyone that you are the C.U.R.E. and that you are 1 in a T.R.I.L.L.I.O.N.

Posted by A. M. Styles on Monday, October 12, 2015