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.

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…..

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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

CRPS and the Snowball Effect

With CRPS there are so many systems that can be effected and so many ways it can manifest uniquely for each patient. Making identification and treatment plans to be difficult to identify.

According to Wikipedia the snowball effect is:

a process that starts from an initial state of small significance and builds upon itself, becoming larger (graver, more serious), and also perhaps potentially dangerous or disastrous (a vicious circle, a “spiral of decline”), though it might be beneficial instead (a virtuous circle). This is a very common cliché in cartoons and modern theatrics and it is also used in psychology.

One system that can be affected that has been asked about recently is the optical. The eyes can be affected in varied ways. Everything from just blurry vision, to reports of early onset of cataracts, right down to needing 20% or less full wrap sun glasses to address severe light sensitivity.

The reason I mention the snowball effect is that while we might not want to accept or acknowledge our decreased vision. We are putting ourselves at risk and not even realizing it. If we have decreased vision, we might purchase or prepare food that is moldy. We might wash dishes and not see the food remains that have not come off the dishes.

Life is full of different challenges and we must find ways to overcome. Even if we don’t know we are dealing with them yet. So consider this a little reminder

  1. Make sure you have REALLY good lighting when washing and inspecting dishes both. Suds (invisible to us but other family can see) can hide debris when rinsing is completed as far as we can see.
  2. Soak your dishes before washing to help get off anything that might be dried on, off easier.
  3. Consider keeping a magnifying glass by the kitchen sink.
  4. If you have glass dishes, consider switching to plastic.
    1. Many get shaky hands and makes easier to drop.
    2. Many have difficulties identifying where their hands are and might grip too tightly.

And lastly you might want to consider doing this for yourself, because if we eat bad food, on dirty dishes, we increase our risk of getting sick.

And for those who have heard rumors, soon we’ll be launching our recipe site. Things you submit to us that you have found making is easier for you, or that can be bulk prepared and made for those REALLY bad days where even microwaving is the bare minimum you can do.

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.

Dear Workman’s Compensation

Offering a Helping Hand

Dear Workman’s Comp,

Yet another night goes by since I won my case and still my medication stays locked away in the vault called the pharmacy.

I was injured seven years ago. It wasn’t even my fault. I had to fight and prove I was really hurt. I had to go out and get a lawyer. Was forced to see multiple IMEs that had never heard of RSD/CRPS let alone how to spell it. Was told that although I am in pain I was only worth so much in your eyes. 

Everytime I called my nurse case manager I felt as if I were, in her eyes, no more than a pest. Begging and pleading for her to help me rebuild my life but instead got told I was a lazy unproductive member of society.

Yet, I trudged on.

Did what I needed to do and danced like the little puppet they wished me to be.

For WHAT?

So I could get medication to be able to function in my pieced together hodpodge life.

What happened next?

You deemed that frivolous spending and took it away.

If my pain medication were insulin would you still treat me in the same light?

Just because I won’t die without it doesn’t mean something inside me isn’t wasting away.

Your evaluators never gazed upon me or examined my physical complaints.

Yet they saw me as a number and words on a page.

Never stopping to wonder the damage this would engage.

On a beautiful young lady of almost 28.

Did you stop to think of ripple effect?

The tear soaked pillow or the pain in my chest?

No, you cast me aside without no thought or regard on how without my medication my heart was turning hard.

The hardness in my heart is becoming a daily struggle.

I am becoming Sisyphus and I’m always falling. The rock is forever hitting me in the face. Pain coursing through my body and I wake face down on the ground.

So please take this note and know you have been served.

I’ve had enough of being a number and being unheard!

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