The Real Story behind RSD/CRPS Doesn’t Own Me.

Posted by Christa Azbell on Saturday, April 17, 2010
To Celebrate a Thousand Members I wanted to share the story how RSD/CRPS Doesn’t Own Me came about.When I was told I had RSD/CRPS it really struck me hard. I was only 20 at the time and very immature. In order to deal with my life I ended up pushing everyone I ever cared about out of my life because I thought I wasn’t worthy of their friendship or time. I went into a dark deep depression and couldn’t quite find my way out of it.One day I decided I needed an outlet, something to distract me and or to spend my time doing. I created a twitter and started seeing if anyone was talking about RSD. I ended up finding some of my closest friends and RSD Angels through this. It soon became my goal to research and know everything I possibly know about RSD/CRPS. My doctors kept telling me that this wasn’t a good idea that it would get ideas into my head and cause me more pain in the long run. So I somewhat gave up for a while.

This past summer I met a great group of people that truly cared about me. They took their time to get to know me and they started taking me back to church. I started learning that my life wasn’t over and that despite my disability I still had something to offer. So in August I decided to get baptized and I finally was able to do so the end of that month. The day I was baptized I felt a pull on my heart to do something about RSD and the lack of knowledge that I had encountered within the medical community and within the world in general. When I was able to be near a computer I started up RSD/CRPS Doesn’t Own Me, which just began as a fan group. I never thought that it would ever go farther then my small group of RSD Angels that I had met. I really wanted to spread awareness about RSD/CRPS world wide, but it truly started to help me and my fellow RSD Angels to stay inspired!

Since August RSD/CRPS Doesn’t Own Me has turned from a simple phrase to a way of life. Although I have RSD/CRPS I have realized how strong and how much of a wonderful woman I am. It allowed me to grow in my confidence in myself, and to start to love myself for who I am. Over the short 8 months since the birth and conception of RSD/CRPS Doesn’t Own Me we have grown into a website, we have sponsored and put on an RSD Angel Awareness month, and grown to an amazing 1000 members.

I come here to say that life is not over once you are diagnosed with RSD/CRPS. Life is only just beginning! Today is the first day of the rest of your life. Since starting down this positive road of letting RSD/CRPS know it Doesn’t Own Me I have met and become engaged to the most amazing caring man I have ever met in my life. I never thought a year ago, let alone two years ago when I became diagnosed with RSD, that I would be planning to get married in July. I have met the closest friends that I have ever met both here at home and online. My fellow RSD Angels who help run this group and website are truly the closest friends I have. I truly couldn’t have done any of this without the amount of support. Also I hope that anyone who is a part of this group and all RSD Angels that will ever be apart of this large group of amazing supporters and friends, will be inspired to spread awareness of the truth about RSD/CRPS.

Together we can keep chinking and breaking down the armor that RSD/CRPS has and we will eventually have our day in the sun. Someday we will be able to say there is a Cure for RSD/CRPS!

Again I say thank you to each and every one of you! For it is because of you we are here today!

Hugs and Low Pain Days,

Christa Azbell
Founder of RSD/CPRS Doesn’t Own Me

P.S. “Reach for the Stars Eventually Your Arm Will Stretch. If you fall short, reach with another person. Even then you are that much closer!”

The Battle: The True Face of RSD/CRPS

In comparison to the many people I have met through our organization, RSD/CRPS Doesn’t Own Me, I feel very much like a baby when it comes to how long I have had RSD/CPRS. It is just barely my 2nd year anniversary and I sometimes wake and wonder how I made it thus far.

We make it little by little, day by day, moment by moment. We sometimes can’t grasp how we get through but we should know that it is worth it.

So many of us who have RSD/CRPS know how hard the struggle is. So as a testament to each and every one of you I wanted to compile this article.

 Why do we fight?

“Why do we fight?” you may ask, and to that I answer, because although we strive to live our lives amidst the down pour of our pain, we are still amazing and beautiful human beings. We go through every day and we may have a bad or good pain day but we are still here. That is a real sign of courage and strength. We are put here to help each other through, and this is what I hope to accomplish through this article.

Leiana Jones from the UK writes:

“I have seen so many posts on my Facebook updates but really haven’t had a chance to get in touch until now, as stories go I think I am pretty rare in the world of RSD. I had five years of battling RSD, getting it diagnosed and finding a treatment that worked.

I tried everything from TENS to drug therapy, pain management courses, Gwenethadine Blocks (which worked for two days longer each time I had one), Bylateral Lumbar Sympathectomy ( winning treatment) just to name a few.

My story is somewhat remarkable as regardless of all of the research my family and I had done on treatment’s the reason I am still alive now came from my dinner lady at primary school. We all live in a small village and most people were aware of my deterioration. This wonderful lady mentioned me to her next door neighbors daughter who was visiting from Scotland; and who just happened to work for a pioneering pain management unit for children and within days I was an inpatient for three weeks for trial treatments. It wasn’t without its trials and tribulations but I was walking for the first time in four years and pain free!!!!

The diagnosis was the toughest most traumatizing part of the whole process, being accused of being a school refuser, attention seeker, abused by my parents, CRAZY! Dreadful!! Living on a small island is also not great as there are very limited resources. I have over the last three years become less involved with RSD awareness as I have focused on my education and career but am very interested in becoming more involved in the work you guys seem to be doing.”


As RSD Angels we are consistently bombarded by nay-sayers or negativity from a lot of different sources. We are told that we should give up just because Doctors don’t have the wherewithal to help our pain be diminished.

I was always told that too much education on one subject can end up hurting you in the long run. I am here to say that this isn’t the case with RSD/CRPS. Education and Awareness is the key to knowing what to do and in some cases not to do when diagnosed with RSD/CRPS. It is very hard to wrap your head fully around something as life changing as this disease is but the more we try sometimes the easier it is to come to grips with it. I cannot tell you how many times my pain management doctor or his GP have told me something incorrect about RSD/CRPS. They don’t live with this pain like we do, sometimes it will be the only thing we can focus on, and we are usually the first to notice if something is wrong.

This doesn’t give us license to be upset and go off the handle whenever someone gets it wrong. They are not us, they can only go on the information they have at the moment.

Furthermore never believe that your treatment options’ are few, because there are more treatments becoming available everyday. Just to show you an example of the amount of treatment there are our RCDOM Staff Member Kylee Black has been so kind as to share what she has tried and what has or has not worked for her.

“High dose ketamine – 800mg to 1200mg over 4 hour stints in theater in hospital – helped a lot

Low dose ketamine – 32mg an hour 24/7 for 14 days in hospital… No side effects, limited benefits.

Lyrica – horrid side effects…

TENS – would bed bound me for days after each use.

Injections – my pain turned to brain maintained to quickly for blocks to be able to work

Narcotics – am on them now – they help to a degree – allow me more function and less pain.

Neuropathy meds – help heaps

Warmth – heating pads – electric blankets etc… Help heaps – saving grace!

Ketamine coma – haven’t tried – know patients who have been though – I think too many risks…

PT – helps but in some ways regressed me

Mirror therapy – helped heaps

Cognitive therapy – helped a lot

Pain management – helped

Relaxation techniques – I already had them – helped to revise…

Brain retraining and awareness — helped quite some!”

These are just a fraction of the treatments that are sometimes used for RSD/CRPS. I know it is very hard to fight insurance or workman’s comp. but if we don’t try to get some form of treatment we may never know if it could have helped. There will always be that nagging question and that “What if?” floating around in our heads.

 The Challenge

I challenge all RSD Angels to not only stay strong but to try to educate and spread awareness as much as possible. If we stay quiet and do not share our struggles and stories then no one will begin to help us find a cure. We aren’t saying you should go out and make everyone in the world pity you or feel sorry for you lot in life. Instead allow them to have a greater understanding that they shouldn’t take life and their health for granted. One day it could be them that are the disabled ones and if they learn now it may help them to go down the correct path of treatment and ultimately remission.

We also have to remember that we are not the only ones effected by RSD/CRPS it is sometimes as hard for our families and friends to watch us struggle as it actually is having it yourself. People sometimes think that isn’t true but of mothers, fathers, siblings, children, spouses, and/or extended family do care for you and they wish as much as we do that it would go away. They may not understand fully but that only creates a form of frustration, that they cannot take away or ease our pain.

The following is a story from an RSD Angel’s Boyfriend, Joseph Whightsel, about how his girlfriend’s RSD effects their relationship.

“I have been dating a girl with RSD for several months now and I just wanted to share my story with the rest of the RSD angels and supporters here. When I first meet her, I thought she was like any other girl, except for the fact the she was the most beautiful and stunning girl I have ever seen. I meet her over the internet, where we found out we had bumped into each other before. It was not until our date she told me she had a incurable disease called RSD/CRPS.
At first I thought “Hey, no big deal it’s cool! I can handle it!” It’s wasn’t until I heard about the excruciating pain she lives through daily that I gave it another thought. She explained it to me as someone draining the blood from her veins filling them with gasoline and igniting it then wrapping barbed wire around her leg. She told me that it’s likely that in several years she won’t be able to walk and have to get around in a wheelchair.
It’s difficult to hear about that kind of thing and say, “I’m still committed to you babe!” It’s hard, the simple things you take for granted in a relationship become very difficult to perform. Things such as being able to put your hand in her lap, giving her a foot rub, rubbing her leg all became very painful for her. She finds it hard to walk long distances and travel in a car for more than an hour takes much of her energy. I found that she is a strong a capable women with lots of strength.
I pray to God for her every day that the pain is mild and that she has a good day. I help her when I can or when she lets me, she can be stubborn and refuse help at times and pays for that later but I love her with a passion. I will be there for her whenever she needs me and I’ll offer her as much help as she needs. For anyone out there, RSD does not have to be the end of everything. You can find someone out there who understands what it takes to love you. You can live as normal as a life as you can when someone who loves you stands beside you. I love my RSD angel and I will never let her RSD get her down!”

This really shows the kind of fear that accompanies taking care or loving someone who has any disease let alone RSD/CRPS. We never think it would happen to someone we know but it takes strength in character to stand by and be supportive. Do not give up when the going gets tough. You are priceless and also not just anyone can say they walk through fire daily and are still alive to tell the tale. Be proud of yourself!

I pray that we continue fighting and spreading awareness together. Together we can go so much farther than going it alone. You are never alone amongst friends.

Christa Azbell

Founder of RSD/CRPS Doesn’t Own Me

A Letter to Family and Friends of RSD Angels

Posted by Christa Whightsel on Thursday, February 11, 2010
Borrowed from:–friends-of-crps-patients.html


written by Keith Orsini


(For those of you who don’t have RSD but suffer from any other form of chronic pain (CP) you could probably substitute your disease everywhere you see the letters RSD in this article and share it with your families as well)

Dear Loved Ones;

The other day a friend of mine asked me if I would share with her loved ones the experience of being an RSD patient; what we go through on a daily basis, the struggles we face, and the importance of medications and therapy in our lives. I thought the best way to do this was to share what a typical day in the life of an RSD patient was like.

I myself have had RSD since 1974, over thirty years now. I also have Degenerative Disc Disease, Failed Back Syndrome, Ulnar Nerve Entrapment, and Fibromyalgia so Chronic Pain (CP) and I are old friends. I first developed RSD when I was 14 years old. Over the last 30+ years I have talked to tens of thousands of RSD and other CP patients of all ages and we all experience pretty much the same things with some minor differences.

As an example for those who do care but are unsure what a typical day is for us, I will try to explain. Please don’t take this letter as mean-spirited in any way. I know some of it may be hard to read, to actually see some of the words in print, but it is not an attack. Your loved ones just want their voices heard.

Over the years I have actually had people tell me, “Gee, it must be nice to not have to work and just sit home all day”. If I thought they were really interested in a reply to that ridiculous statement I would tell them that having RSD and/or other CP Diseases, however severely you have it, is much more work than any full-time job! Plus, we don’t get to call in sick, get vacation days, and our work day is 24 hours long, 7 days a week!

Now understand that quite a few RSD patients (also known as RSDers) and CP patients have other diseases as well as RSD, such as Fibromyalgia, Spinal Stenosis etc., and that some RSDers have RSD in one limb while for others it is more. Some have less movement while others have quite a bit. Some take only a few medications and some take quite a lot.

I myself have taken over 20 pills a day(not different ones, but altogether). Contrary to some people’s opinions taking a pile of medications does not make us “”druggies”. A “druggie” is someone who takes drugs for recreation. A pain patient is someone who takes medication because he/she has no choice and who probably cannot fathom someone who takes narcotics for “fun and/or recreation“!

There are patients who use different types of machines, have Spinal Column Stimulators, or Pumps installed in their bodies in an attempt to reduce their pain. Some deal with the wheelchair issue as well. Most patients, the lucky ones at least, also do some form of physical therapy such as swimming, weights, or massage, to help them continue to be able to do the basics things like walking and using their hands, feet, and arms.

First, let‘s start with the sleep patterns, or lack-of-sleep patterns to be more accurate. Unlike “normal” people, CP patients are prone to insomnia and do not reach REM sleep; this is the healing sleep our bodies need each day. We either wake often or are in a drug induced sleep. When we do wake, it is often physically painful to actually get up and out of bed. So, why don’t we sleep?

It is because RSD cause changes to the Limbic System of the brain. The limbic system is that part of the brain that controls insomnia, short-term memory, concentration, irritability, ability to find the right word when speaking, and much more.

We start our day with medications of course. The first of many such times per day. To “look fine” we take 10 to 30 or more pills a day for various symptoms. Then there are the side effects of those medications to deal with; upset stomach, drowsiness, diahhrea, constipation, headaches, and many others. Many of us also have to fight the “Dry-Eye Syndrome” and must use eye drops two or more times per day.

Understand that these pills do not take all of the pain away. They just enable us to get up, move around, and have some semblance of a “normal” life. They simply allow us to function.

Then many of us head to Physical Therapy such as pool exercise, range of motion therapy, massage therapy, and even acupuncture. For the patients for whom these things work, they are lifesavers. Like the medications they allow us to function, to be a part of our families, to enjoy part of each day, and for some they actually give us a reason to get up in the morning.

These aren’t luxuries but necessities for those of us who can physically handle them. There can be month’s, even years, when the allodynia is too high to do even these simple things. (Allodynia is when even the lightest touches or sounds cause extreme pain.) Maybe the person sitting next to you at dinner touches your RSD arm, or your foot gets accidentally kicked at the pew at Church, or your leg gets bumped into at school; all these things seem harmless to the average person and they may not understand how they could ever cause pain to an RSD patient, but trust me, they can and do. Some people can even have a slight breeze cause them excruciating pain.

I know what you are thinking, “that is crazy”. No. That is RSD. If you think it’s crazy, and I am telling you from a knowledge background, think how a patient who knows nothing about the disease feels when they start forgetting things, especially when their pain is high? Or when the slightest touch, even the caress of a loved one, the kiss from a spouse, the touch of the sheet on the foot, the tightness of a sock, sometimes even the very breeze itself blowing over the body, can cause such pain to the patient it will bring tears to their eyes. Think of the confusion and terror that brings into their lives.

And when their friend and loved ones sit there, make fun of them and disbelieve them when they try to explain how it causes pain, well, that hurts them even more. When a disconnected Doctor doesn’t believe you that is bad enough but when a loved one doesn’t believe you it hurts almost as much as the pain. And let me set the record straight here on the pain, there is no pain like the pain of RSD/CRPS. That isn’t just from a patient or an advocate, it is documented. RSD pain is ranked higher than any other form of chronic pain known today.


To put that in perspective, you can visit a page we have on the website that shows some other diseases/conditions and their rankings.


As you can see on the scale, Arthritis pain is ranked about a 18, Cancer pain a 24, Chronic Back Pain a 26, and then RSD/CRPS is ranked a whopping 42! The only thing close to RSD pain is the amputation of a finger and thankfully, that is quick, while RSD pain is 24 hours a day, 7 days a week with no let-up.

Does that bring it home to you?

It is a pain like no other. When people ask me to describe it to them the best I can do is say “Imagine you had RSD in your hand and arm. Empty the blood from your blood vessels in your hand and arm, then refill them with lighter fluid and light them on fire. Keep them lit 24 hours a day, 7 days a week.”

Let that sink in for a moment.

“Now imagine no else can see the flames or will believe that you are in pain no matter what you say”.

That is what RSD feels like.

Whether we patients are walking for therapy, which I assure you is as painful as it is necessary, or doing things that remind us we are alive there is always a price to pay in extra pain directly afterwards, or even the next day or week.

RSD patients are cognizant of that every day. While the average person can sit there and tell us “Go ahead and enjoy the day, you can’t let your pain control your life!” What they don’t realize is that we are controlling our pain and not the other way around. We control our pain by controlling what we do.

What do I mean by doing things to remind us we are alive? When we spend a few hours tending the garden, spending time with our children, playing with our pets, going to a movie, grocery shopping, running errands, attending a family gathering, or even just going to church. Things that make us feel normal, if only for a few hours.

Unfortunately some people who see you during these “good times” believe that is how you are the entire day. What they don‘t see is the pain you experienced that night and/or the next day because of what you did. Nor do they take into account all the medications you took before or afterwards to be able to do those things nor the fact that you probably had to spend a great deal more time resting afterwards.

The same is true for patients who go to the computer to get support from others with RSD through cyberpals, listservs or websites. Many non-patients do not understand that it is the time we spend there that keeps us going each day . It informs us of new procedures or medications and educates not only ourselves but also our loved ones and sometimes even our Doctors about how to cope/treat RSD.

For most of us it is our lifeline, not our toy. The time we spend on the computer is absolutely necessary to our general well-being for it is there that we can talk with others who truly understand what we deal with every day and every minute.

Many of us have to sneak in a nap in the afternoon to rest our bodies, especially those of us who also struggle with Fibromyalgia. One of the problems this leads to is when our loved ones try to do something nice for us and plan a whole days activities. It is just too much for us. You have to change your whole way of thinking to include doing things in moderation. For many RSD patients that means scheduling things in the morning when we are at our strongest and our pain is at its lowest.

For others, it is much easier to do something in the late morning or early afternoon but typically by early evening we are done for the day. You also have to factor in your physical therapy and Doctor appointments as sometimes these things will wear us out for the entire day.

Another strange symptom that has to be factored in to our daily lives is that many are bothered by vibrations or noise, and for a small percentage, it can actually make the pain skyrocket! A simple ride in the car over a bumpy road can cause a spike in pain.

Due to the noise and vibrations causing me extra pain for instance, there are a lot of things I cannot do, places I cannot go, and again, I am just one example of many out there. These are places most people take for granted and may wonder why we are not there. They may think we are shutting ourselves off by not going, places like my Church, my Masonic Meetings, going out with friends, etc.

If there are a lot of people making noise for example, even if it is simply singing or clapping, it can cause our pain to spike. Visits have to be cut short sometimes due to all the typical regular noise generated or we have to go off to another room. Don’t even start on things like thunderstorms, whew!

Imagine saying to your boss, “Sir, I have to go home, the thunder is causing me great pain and the strong wind blowing is hurting me as well.” Oh yeah, they would love that. Sorry I can’t come to your birthday party because there will be too many people having fun and enjoying themselves and making noise. Yeah, that makes sense, especially to my 10 year old niece. I can only imagine the restrictions parents with kids have to place on their children so as not to hurt their RSD limbs, after all kids will be kids.

I was lucky when I was a teen with RSD because, despite many a day spent wearing dark glasses due to the pain of the bright sunlight or the days when the pain of my RSD made the ordinary things extremely difficult, my friends were always there. So many teens I talk to on our Teen Corner aren’t as lucky. They have schoolmates who take pleasure in pushing them in the hallway to see them fall on their bad leg, or purposefully hit their RSD arm.

Why, even their own siblings hurt them or taunt them about their RSD, as if it is something they have a choice in. Who would choose RSD? Do they think if we just decide to smile it will go away? It would even be a little more understandable if it were just the kids. Unfortunately it isn’t, as many of you personally know.

I have heard so many stories from our teens with RSD/CP whose siblings, Aunts, Uncles, even parents, who tell them they need to “Just get over it, deal with it, move on already”. Great advice from the uneducated and seemingly uncaring. Instead of saying things like that, why not read up on the disease, go to the websites like ours, see what the truth is regarding using the limbs, talk with the Doctor about it if you really care that much about their well-being. You don’t know how much it would mean to the patient if you took just an hour here and there to do that.

The bottom line here and the points I have tried to get across are that;

* When you suffer from chronic pain, you have to constantly think about how, whatever you are going to do that day, will affect your disease and your pain level.
* Being in chronic pain is a full-time job.
* One with no vacations, terrible benefits, and no way to quit.
* RSD is the most painful form of chronic pain that exists today.
* Chronic pain affects the entire family, not just the patient.
* Chronic pain is an invisible disability. Even other pain patients will sometimes forget that they cannot see YOUR pain and make assumptions based on what they can visibily see.
* A chronic pain patient may have a good hour or even many good hours a day where they can “appear normal” to everyone else but most don’t realize the price that is paid before and after.
* The positive involvement of their loved ones means the world to the chronic pain patient.

I am still surprised at the number of fellow pain patients who forget that not everyone with RSD, and/or other forms of chronic pain, shows outward signs of it ALL the time so it is understandable when our loved ones forget. Never assume you know someone else’s whole story at a glance.

Over the past three decades plus with this disease, I have spent a few years being stuck in bed unable to walk, I spent over a year being confined to a wheelchair and having to learn how to walk again. That was the second time in my life I have had to do that, despite being told by Drs that I may not ever be able to walk again. Good thing I am stubborn.

I remember one year where the only time I was able to leave my room was to go to physical therapy five days a week. I have spent many years having to use a cane to go even ten feet and despite this, I still have people who don’t know anything about my past struggles, even some who are fellow RSD patients, email me and tell me I have no idea what it is like to be stuck in a chair or be unable to walk! That I don’t have it as tough as they do.

I am blessed in that currently,(2005) I am doing better than many other years. That doesn’t mean I am “cured”. I take my 15 pills a day. I have to do my physical therapy every day. I have to walk every day. Nearly every afternoon is spent having to lie down because of exhaustion, partly due to the RSD and partly due to the Fibromyalgia, in combination with the medications. But I am not complaining. I have been much worse in my life and I never forget it for a minute.

But NEVER compare your pain to someone else’s. It is a lose-lose situation. It hurts you both. Instead encourage one another and support your fellow pain patients! We all deal with pain in different ways and we all have different levels of tolerance.

Our medications, our therapies, and our friends are what get us through each day. The value of none of these things can be minimalized. Not just for the physiological changes that they bring to our body but for the psychological ones as well. That doesn’t mean our lives end, they just change. And RSD/CRPS patients require tools to make those changes possible. Tools that include medication, various therapies, exercise, diet changes, and lots of familial support. You can be a positive part of it or you can be a hindrance, it is totally up to you.

Now some may view this as being obsessed with the disease, that we think of nothing else but our disease, our pain, that we are too focused on it and that is why we are so depressed, so sad, we hurt so much. Gee, you mean if I didn’t think about it so much I wouldn’t hurt so much? Hmm, let me give that a try. No, seriously, the fact is that for us, RSD/CP is a major part of our life. It has to be factored into every decision we make, if it isn’t we will pay for it later, as will our loved ones.

My family and I often worry that our friends will get tired of our talking about CP too often. After all, not only have I had it for years but most of our family is involved in running this organization and getting the word out about this disease. Many times we have to force ourselves to take a break from RSD talk for a day.

But then we think it is no different than if we had cancer, MS, or MD, (which some of us have). People are just used to hearing those words more. Yes, we will lose friends along the way, that is inevitable But we will also gain some new wonderfully supportive friends and they will be amazing, true friends who will be in it for the long haul.

I cannot tell you all the incredible people from all over the world I have met in our journey, with whom I have become fast friends. Some I see often and some I see only at our National Conferences on Pain yet it is as if I saw them just yesterday; many I talk to only on-line and I know them best of all. These are amazing people who have overcome obstacles you wouldn’t believe and yet still come out on top. And you know what? They could care less that I have RSD.

So now that YOU know what it is all about … which type of friend are you?

I hope this has helped you better understand a day in the life of an RSD/CRPS patient and that you didn’t take it as a slap in the face or something hurled at you but as a teaching tool. Sometimes we have to be forced to confront things in our lives in a harsh manner in order to accept that they are real; both the patient and the loved one in the case of the chronic pain patient. Thanks for listening.

Peace, Keith Orsini
American RSDHope

On behalf of Chronic Pain patients everywhere, thank you for taking the time to read this.

It means a great deal to them that you would take the time to do this and just because they asked you to read this does not always mean they feel they have a problem with you necessarily, they just wanted you to have a better idea about what they have to deal with. They NEED you in their life; they WANT you beside them in this struggle. They know they can do it; they can beat this with YOUR help.
PS: For more information on Chronic Pain, please visit AMERICAN RSDHOPE This link leads to a website that is not part of RSDHope

A Rallying Call to Arms Against RSD! By Christa Azbell

Posted by Christa Azbell on Thursday, February 4, 2010

It has come to my attention that there is a lot of gossiping, slander, and hate among our RSD Angels.

When I made this Awareness Group and Fan Page I never would have believed I would hear that my wonderful Angels were fighting among themselves.

We deal with horrific pain everyday. Wouldn’t we want happiness in our life? You are the only one that can control what you say and do!

I hoped not to have to write a note about this topic. But apparently some people need to be reminded that WE ARE ALL in horrid gut wrenching searing pain 24/7.

When you are an RSD Angel you need to think of all of the RSD Angels. We are fighting for each and every one of us to someday have a cure. Not just one!

This isn’t a one person fight or dream. It takes team work, and who can work as a team when we are divided?

If we are allowing ourselves to be catty or go around spreading lies that is making our fight for a cure and awareness of RSD/CRPS that much harder. Instead of taking that much needed 2 steps forward we have brought ourselves 10 feet back.

I don’t care who started any of the gossiping, slander, or hate, I want it to end here and now.

As I said a couple of days ago. Let us start anew! This is the first day of the rest of our lives. Are we going to let our emotions, or this horrid RSD control how we act? I say no!

Let us stand up and say we are RSD Angels we walk through fire, hell, and brimstone everyday and we still are here. We still are smiling. We are victorious and we will overcome RSD/CRPS! Now Who is going to join me and put aside everything else and fight against our only common foe……….RSD/CRPS!

Christmas Tends to Remind You…..

Posted by Christa Azbell on Monday, December 28, 2009

As I was hobbling through the mall cane in hand dodging the millions of people that decided to come out on this chilly day after Christmas. If you have RSD and I know most of you do that will read this, you know how much I was taking my life in my own hands stepping foot into one of the biggest malls on the day after Christmas! My boyfriend was very nice and walked slowly with me as we made our way to the restaurant. I suddenly felt like I knew how a snail felt in a fast paced forest. Except my forest creatures were blood thirsty consumers with small ankle biters by their sides. Finally we made it to the restaurant! Woohoo! Food!

We sat down at the table after waiting for a little bit. Everything around me was fast paced and overwhelmed me. It suddenly reminded me why I kept to low populated areas since being diagnosed with RSD. Sitting at the table waiting for them to bring us our food felt longer then it should have. The vibration of the walking around me suddenly felt like everyone in the mall was marching in step and stamping their feet hard.

These little things are something that I have noticed since getting RSD. I wonder if it is because I have slowed down but I can notice just little things and I adjust to keep from getting hurt.

RSD is definitely eye opening. Needless to say I grew up with an elderly grandmother my whole entire life. Sadly I used to get impatient and tired of walking slow and staying at her pace. It is weird with the shoe on the other foot. Other people have to remind themselves or I have to yell out to them…. “Wait for me guys!”

I am only 22, I may not be in college anymore but I live life like a normal young adult my age. I spend time with friends, I have a boyfriend (Which is AMAZING!), I go to Church, and I have hobbies. My RSD effects how I go about doing things. I have to be patient. It is a test of my endurance I joke, if I am doing it slower it means I am doing it better than normal, cause perfection takes longer.

I never thought that I would be disabled , battle with workman’s comp before age 20 and then stare into the long scary face off SSI before the ripe old age of 22. It scares the living poo out of me most days. But I am lucky, very lucky, I have been blessed with the family and friends that I have and they help make that future not as scary. I and my boyfriend talk about the future and he reminds me that he is willing to do anything for me. Disabled or not he loves me for who I am. That is very rare. He is determined to help me fight RSD as long as he is humanly capable. *Collective “awe!” can commence now*

My friends that I am closest to now have only known me with RSD. They don’t know how I was before and I am sometimes thankful for that. I believe I was a very shallow person before. I didn’t think about anyone else and always wanted the lime light. (I was an actor…..yeah) All in all RSD has changed my life for the better in ways.

My future sometimes looks and feels unstable but we can try our hardest to make it the best present and future we can. I for one look forward to maybe getting married within the next 8 months or so. I look forward to becoming more active in my church, and also to growing in Christ. Also to being the person I want to be. To look back on my life when I am older and say I have no regrets. I lived my life and it made me stronger for today.

I never knew at 22 I would have such a plate full of problems or medical bills, but all in all with the people I have met, both RSD and Non-RSD related, since the diagnosis I couldn’t see a better way to be living my life right now.

I pray that your pain is low and your heart is full of love. I pray that you take things slow and don’t get too hard on yourself, because you are amazing. RSD isn’t what defines you!

Now live life to the Fullest!

“Tender Strength in Pain” by Jessica Cantrell

Posted by Christa Azbell on Monday, December 14, 2009

“Tender Strength in Pain” by Jessica Cantrell

I turned over for the hundredth time that night, screaming on the inside from the pain I was forced to endure. When you walk through hell there’s no one there to hold your hand, and this was most certainly hell. I was on fire, a fire that can’t be put out.

They say that it is like dousing your hand in gasoline and then lighting it. Imagine that the flame never goes out and there is no hope that it ever will. As if things couldn’t get worse, rub the raw flesh with sandpaper mixed with salt. I was surprised that no one could see the flames jumping off of my arm. In an interesting twist I lay in my bunk on the tour bus trying to keeping warm. It was a requirement to keep the temperature in the bus below thirty. I lay there hoping to die, hoping to keep my dream alive for I knew that as soon as I left that bunk I would never come back.

What began as an amazing opportunity of a lifetime spiraled downward into the days and nights of endless pain. I was on the Ministry Team, a feat that few attained especially after the week long “try out” called Josiah’s Road. This was what I had dreamed of; touring the country and putting on Christian conferences for teenagers. I wanted this more than anything and I had worked hard for it.

Climbing aboard the bus is what did it. It wasn’t until I climbed aboard that bus that the nightmare began. The bus rocked back and forth as it rattled down the road. Every bump in the road caused more and more pain. I didn’t realize it then, but that pain was nothing compared to the fire that was to come.

My sprained wrist seemed to be hurting me more as time wore on. The doctor said that it wasn’t broken and would be better in a few days. It had been a few weeks by the time we arrived at our first event. It had only taken a couple of days on the bus to create the monster that still devours my arm almost five years later.



I was taken to a urgent care clinic and, after hardly looking at my wrist, the doctor diagnosed a sprained wrist. I felt like pulling out my hair. How dare he tell me that it was just a sprained wrist when it had been weeks! I was angry and hurt but I had to pull myself together and take the medicine he prescribed. I couldn’t let my team see me crying or blubbering. I had to; no wanted to, stay strong for them. They had an event to put on, they didn’t need to be worrying about me.

At the event the sound from the band was painful and so they put me in the cab of one of the trucks so I could rest where it was quiet. The Vicodin kept me sedate, but the pain never went away. I lay there in the dark with tears streaming down my face and no motivation to wipe them away.

Continuing on tour I would stop at two more clinics before winding up in a hospital in Georgia. “You have RSD”, the doctor told me. I was sitting on a cold metal table but the chill I felt didn’t come from that. I froze. My breath caught in my chest and my heart skipped a beat as I waited for her to continue. “That’s reflex sympathetic dystrophy; it is a problem with your nerves. We don’t know what causes it, and there’s no cure. A nerve block might help the pain.”



I sat there dazed. I had what? No cure? A what block? I had too many questions floating through my mind and my mouth had suddenly stopped working. I just stared back at her, where to begin?

Soon I was flying to Colorado to get a second opinion. I would go through a string of doctors, none of which had even heard of RSD. I finally gave up. What else was there to do? Not one doctor would give a diagnosis. Life at home became unbearable.



While the pain was still sucking the life out of me my family began criticizing me.



I was finally diagnosed; four and a half years later, with the very same diagnosis I had received in that night in Alabama. The years of pain have made me strong, and the years of suffering have made me tender; Strong enough to keep pressing on in spite of the pain, and tender enough to help others through theirs.

Pain: My Life on CRaPS

Posted by Christa Azbell on Wednesday, December 2, 2009

Living in Pain but still have hope

I am starting to think my body has a mind of its own. When I was in 7th grade a week after my birthday I was walking down the hall and started feeling weird and before I knew it I was on the ground being shook by my math teacher. I had fainted. The called a squad but when they Came they said all seemed fine. This went on and on for months. I would faint 2 sometimes 3 times a day and sometimes they wouldn’t call the squad. My fellow students and worst of all the adults and staff at my middle school started saying I was faking it. They thought that I was just a lost little girl trying to get a lot of attention. I even went blind one day and the nurse told me to walk around the office to probe that i was really blind. I walked into a sharp-edged table and put a gash in my knee. She still didn’t believe me. This went on for 7 months, no help nothing but judgments. I finally went to a neurologist who asked my mom if she knew my pituitary gland was being squished by fluid. He told us to go to a specialist in the matter and she finally told me what I had. Pseudo Tumor Cerebri which is a buildup of fluid in the spinal Column and the brain. In my case the fluid was trying to get out and it was trying to go out my optic nerves. I ended up losing my side vision (peripheral) and the pressure on my pituitary stunted my growth and messed with my hormones. I finally got that under control, there isn’t a cure for that either but there is a high rate of remission. I went in and out 2 times finally in for a while.

Flash forward to April 7th, 2008. I was working at Build a bear and I had just thought about quitting because I went out and got my nose pierced and they threatened my job if I didn’t take it out. I almost wished I had walked away but hey….anyways. I was taking out the trash at work and my coworker was behind me and I was pulling the 1/2 ton metal trash kart down a small wheelchair ramp. I found out after that the kart was broken and I had been trained to pull a broken kart….big no no. It went rogue and ran into the back of my left heel….I blacked out and it felt like it hit a nerve and I almost threw up. I hobbled back after throwing the trash out…..blood in my shoe wasn’t customer friendly so the let me go home but I went to Urgent Care. They said I sprained it and might get something else and to follow-up with a different Dr. So I did. Went to a “mouse” of a Doctor he put me in a walking boot. My foot started hurting….more then I would think a torn ligament and a sprain would be. I kept telling the Doctor but he said it was normal. We went back after 14 weeks of being in this boot. He thought I was just being a big baby. He told me that I needed to get out of the boot and into a brace…..he went to look at the swelling in my foot and he barely touched it and I flinched and pulled away. He finally said… might be RSD…but nothing was really said after.

I stayed pretty laid up for about 5 months. No one said RSD again to me and I thought nothing of it. We did different tests and they all said nothing. I wasn’t getting a paycheck so I was stuck at home with my parents. About the 7th month he finally said that I really had RSD. I was so pissed and frustrated by this time that I wanted to spit. My mom talked to a Doctor friend of hers and he pointed us in the direction of the best RSD Doctor in Ohio and he was 10 miles from my House. Dr. Deshpande worked real hard with me. We tried a lot of different things. He did a Sympathetic Nerve Block and did different narcotics. I ended up in the hospital after the Nerve Block with double the pain. Nothing really helped. So about November of 2008 he finally said that I should get a Lumbar Stimulator or also called a Spinal Cord Stimulator. It is a machine that sends out electronic impulses in hopes that those pulses will block the pain getting to my brain…..It works to a degree but I still got about 50 to 80% pain most days. I got it in January 2009 and around May 2009 it died and wouldn’t recharge. So finally in October of 2009 they gave me surgery to give me a replacement battery that didn’t have to be recharged. Since the start of my RSD it has spread from just being localized to just my left ankle to taking over most of my left side and all of my left leg.
People always ask me if my life is still worth living because of all I have been through. Of course life is still worth living. I have met so many people after I was diagnosed with RSD. People I wouldn’t have met in a million years. Also RSD/CRPS Doesn’t Own Me wouldn’t be also. It is my baby and I never realized it would blow up as big as it has. It keeps me hopeful that someone else who has been diagnosed with RSD/CRPS will find and hear about the information that we try to put out and goes into remission all the faster. We want to see that happen to each and every person afflicted with this horrid disease. We want to see every person’s family to support them and try to understand because without support we feel lost and hopeless.

I am so glad to be a part of this wide world of awareness and I pray that I will continue to be a part of it!

I pray all of you are having a low pain day and that everything is low stress.


Coming to terms with RSD: Living unwell in a well world

Posted by Kylee Black on Saturday, November 28, 2009

RSD: Living unwell in a well world

RSD spreads in up to 80 percent of cases with only 8 percent of these cases being full body or systemic. (Lucky me being in the 8% huh?? Jokes!)

I’ve been working and pondering over this for a while now…Well, it was more just thought, but I thought I’d share it none the less since I say I’m all about being real and honest and since this is my space for chatting and getting my thoughts and ponderings out I thought I would……. Hopefully it makes sense..

See this is a strange journey filled with many twists and turns and ups and downs… Of course really I’ve just described life for each one of us in a nutshell…. Sometimes though…. It appears… Different… In some form…. Somehow lines aren’t as clear-cut anymore, like when you start dealing in chronic illness, which is, lets face it, is exactly what RSD is… To add to that point its INVISIBLE ILLNESS!!!!!!!!!!!! Which can be so much harder to deal…..

And here’s my dilemma…. How do you deal?? How do you figure it out? When sick doesn’t equal flu, function doesn’t equal wellness and a smile doesn’t mean I’m pain-free?? Where are those lines that have somehow been etched away? Where does one start and the next begin?? How do I present myself? How do I fit into the worlds ideals and concepts? Or do I even bother??? How do I learn to function in a well world??

I sent this email to a friend who has suffered CRPS/RSD for quite a long time and with permission wanted to share some of her thoughts with you too …… Her responses to my struggles and ponderings… Shes so darn right! Maybe it will shed light for others too……. Bring some understanding to how you deal with this stupid disease…………. (Written in colour so you know which is which)

“How do we learn to function in a well world… How do you function in an unwell world in a manner that others will understand… If I had the answer to that life would be infinitely easier. Personally I function by being purely and simply bloody minded and pig-headed and by laughing at myself and the bizarre world I now live in. Why do I bother?? Because it makes me feel ‘normal’, or at least what I think normal should be…. What I vaguely remember normal to have been but its been so long that my view may be a little skewed now. I smile because I can and if I don’t I’m afraid I never will again. I laugh because I can and sometimes it’s all I can do to stop from crying. The absurdity of it all can be overwhelming and sometime you just got to laugh.I cry when no one is watching, so they don’t know how much of an act I put up. Sometimes I cry with others who actually know, because they are crying too.I cry tears of pain, anguish, grief for what I’ve lost and desperation. Tears are healing… snot nose ministry. How do I function in a well world…. Some days I don’t!””

People look at you and see a smile and a clear face (covered in acne but that’s a side issue) and think things are well not knowing you spend hours before and after to prepare yourself in a manner that shows you somewhat decent… That you put on a mask as soon as someone enters the room to show you are OK, and it happens without you even realizing it, yet they leave and you fall back into a deep breath to pick yourself up again…….

RSD has I think five different fingers to the disease… Function, pain, brain, autonomic symptoms, and sympathetic nervous symptoms…… They are all connected to each other yet at the same time also all very separate… Improvement on one level doesn’t equal improvement on another just as set back in one doesn’t necessarily equal set back in another… Of course sometimes you get thrown a tail spin and you fall flat back in every area… But I digress…

See… There is a level on which I find myself struggling… And I’m being very honest here because it’s in no way reflective to anyone – it’s just the world we live in – its me coming to terms with RSD in the world I’m trying to re adapt to… In a normal world, in normal settings as people understand things to be function = improvement, and in fact it is! One I’m truly thankful for but function would also appear to mean I’m getting better and this is where the hiccup happens…… This is where all of a sudden the lines in ease of understanding disappear in RSD…. It’s so far from the truth.. And yet it spins even my head out to understand this…….. How can I be regaining function on some level when I’m not doing well in others?? When I am struggling with my body?? When its so flipping complicated? And here’s what it boiled down to…. Here’s where I’m stuck……..

How do I respond to people when they tell me I’m looking so well or getting so much better all the time – that I’m on the up and narrow now when I feel like I do?? Smile politely and say thank-you? Nod my head and agree? Cant you see how Ill I feel??”, “Cant you see my legs burning like flames???”, “Don’t you know how hard I work to put a smile on and appear like I’m normal??” , “Don’t you see the price I pay for this chance encounter?” Why do I look so well when I feel so crap inside or I know what the price will be that once I stop I will crash hard…………

Of course this isn’t about sympathy, and it isn’t about vying for attention either…. Its simply getting my head round adapting to an invisible illness that’s barely heard of let alone understood….. I’m crazy lucky to have supportive friends and family who have been willing to learn, read and try to understand… But it’s still an insanely ridiculous ride! Being bed ridden or caregiver dependent is one thing…. I think easier for people to “get it”, but the more function I fight back for the harder I realize in other areas it will be……. What do you do when function is only a co part of RSD??

Do you know most RSD sufferers are able to fight for most of their function back yet they are all still fighting no less of a journey? Your body learns to adapt and it also come to terms with the high level of pain… You learn to push on stubbornly in spite of….. You learn to put on a mask as you walk (hobble or roll) out the door that hides the suffering and how you really feel… You surprise yourself at how well you can present yourself given enough time, preparation and make up… You learn to adapt to the feeling of walking or standing on broken bones, you learn to hide the pain, you know when to leave and hide away and yet you crave and cry for more of a chance to live life as easily as others…….. To go out without a second thought and not have to worry about concern for pay back….. You know you will have good days, better days and bad days, your better months and worse… There will be days you can not get out of bed of lift your head and days you function with the ability to get out and about… I liked what my friend said…

“Function is what you make it! Today it is movement, tomorrow it may be the ability to roll over in bed, next week it might be the pool, the week later, the ability to smile and lift a finger… And I never know day-to-day or hour to hour what it will be… that’s the guessing game that is RSD.


It never leaves me.

Sorry to burst your bubble.

I know people in remission, it has never been me. … The cause of depression, anger and envy.
I’ve had good months but it’s always there, nagging away, grinding at your will, but it’s always there in some form or another and it is EXHAUSTING.

Unless you’ve been there you will never understand so don’t expect others to. They might think they do, but they can’t even begin to grasp how all-encompassing it is.They see pain as a scrape or a muscle strain. They can’t understand being on fire, touch equaling pain, movement, no matter how minor being agony. They can’t. Save yourself the torment and accept that they can’t understand.


Well mine checked out years ago, its one of the more frustrating things to deal with. Why can’t I do today that which I found easy yesterday. Why can’t I even remember yesterday?

Autonomic response…
I can’t fathom, I want to know more, but when the best in the world can’t explain it how am I to understand how surgery to my left ankle now affects my temperature regulation in my ENTIRE body? I’ve studied neurobiology and I still don’t get it. I just don’t. I understand the theory but not how that converts to what I experience. There is so much I want to understand, so much I want to know, but short of a massive research grant and some PhD students to do the work for me, I will have to rely on the work of others…

And when they (all the different fingers of RSD) all crash at once it feels like you are dying, here and now. (Seriously true!). Some days its ok to admit I DON’T GET THIS, and roll over, pull the covers up over your head and admit defeat. Metaphorically just walk away. You don’t have to understand it to know it’s really happening to you.

I remember in the first couple of years thinking that if I just pinched myself hard enough I would wake up to find its all just a bad nightmare. Yes, it’s a nightmare all right, but I’m not going to wake up anytime soon. I might as well accept that this is what it is and I CAN FIGHT, I will never be the same, but God willing, I will come out the other side a bigger and better model and, by God, I’ll have one hell of a testimony.”

Does it matter what people think?? Probably not…. But comments hurt and sting all the same don’t they?…. Maybe I’m to vulnerable? Maybe its still to raw? Maybe I’ll learn to brush things off without a second thought…Those both said in love and in spite………. I don’t want to be a sick person… I don’t want to have this as my deal…. Yet at the same time there’s a level of acceptance I have to come to before I can really move on but with still a sense of hope and deep belief for healing……………….


So lucky to have others that actually get it and understand! People that are further down this track than me… It sure is a mind full…….. I am seeing benefits of Ketamine and can nearly take a hobble step… One step at a time while I continue to get my head around everything and do what I can to keep making steps forward —- And that’s without any help or support through PT, OT, rehab…….. I think that’s pretty cool!

Love Kylee xx

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