Life With RSD
Living With Chronic Pain
My name is Joey Lee, I am currently 49 years old.
On February 18, 1992, while working as a Counselor for Sexually/Physically abused Children and Teens, my life took a drastic change.
While working, an accident occurred which left me with several injuries to my right knee.
After undergoing an Operation to reconstruct my Anterior Crucial Ligament (known as an ACL Reconstruction), which was unsuccessful, it led the way for another series of Surgeries all, in some way, related.
In 1994, I was diagnosed with a bone marrow disease called Avascular Necrosis (AVN), in both of my knees. This led to an additional two surgeries, again, unsuccessful.
After undergoing intense rehabilitation, the pain began to worsen, instead of getting better.
The Doctors at the time were unable to find any reason for the additional pain I was experiencing. As a result, I went from Doctor to Doctor, looking for some kind of answer, or reason. Just about every Doctor I saw, undermined my complaints of pain. Many even told me that the pain was ''Psychological'', or ''in my head''.
It wasn't until 1997, that I finally met with a Rheumatologist, who's goal it was to find out what was causing such excruciating pain.
I had pretty much given up all faith in the Medical Profession by this time, as ''it's in your head'' seemed to be the diagnosis, time after time.
The Rheumatologist was persistant. She ordered test after test, sending me to one Medical Professional after another, all in her quest to find the origin of the pain.
It was about eight months to a year later, when I was eventually diagnosed with RSD/CRPS, Reflex Sympathetic Dystrophy.
There are still only a very select few known treatments for RSD; aside from attempting to control the pain, most only have a positive result if caught in the first few months of onset; injury/trauma, of the Disease. Unfortunately, this leaves the majority of those with RSD with very few options, and even lesser treatments. Struggling just to control the pain is a very common, and much too often, fight in which many have to suffer for way too long.
As difficult as it is to put these past several years into words, I'll try my best.
Although the pain originated in my lower extremities, my knees to be specific, over time, RSD has spread to other parts of my body. And, with each level of progression, the pain became that much more intolerable.
In 1999, I was referred to a Pain Management Specialist, in an attempt to find the right medication, or combination of medications, to try and control the pain.
Approximately one year later, I had a Medtronic Morphine Pump implanted into my lower left Abdominal area. The Pump induces Morphine/Fentanyl epidurally; via my spine, and directly into the spinal fluid. In early 2004, after reaching the maximum dosage possible of Morphine, the medication has since been switched to Fentanyl. It was, and still is, the most successful treatment for the pain that I live with each and every day.
More recently, in November, 2007, I had to have the pump replaced with a newer model. Most pumps have a five to seven year battery-life expectancy.
RSD also affected many other areas of my life. As time went by, friends seemed to ''drop like flies''. And, as time went by, even my own Family chose to simply ignore my physical condition, as well as shunning me.
The pain of my ''so-called'' Family disowning in me, for lack of a better term, has caused almost as much pain than that caused by RSD/CRPS and the other diseases that developed afterwards..
Unfortunately again, this is all too common amongst those with RSD. The support of Family and loved ones is almost crucial. Yet, the lack of understanding often causes ignorance, just as it does in so many other facets of life and society.
I guess I'll never truly understand how so many of us that have RSD/CRPS, can receive the very same, cruel, unforgivable treatment from those we love; our brothers, sisters, and even our fathers/mothers, that we thought loved us, unconditionally.
How can any family member, or in my case, my entire family just not care?
With one exception, my Mother*, whom I've loved more than anyone, and whom I was closer to than anyone, passed away in 1991, one year prior to my initial injury. I'm forever thankful in many ways that she never did have to see me deal with all that I have.
My Mother* continues to be my one true Angel*. I know she lives forever in my heart and in my soul. I believe, without a doubt, she gives me much of the strength I have to simply continue on living.
Many people wonder why I put asterisks (*) after their names. The ''answer'' being; it's just a small symbol or gesture I use in remembering Her*.
Aside from a select few true, and real Friends' MANY ON Facebook, Jane*, and ''Life-Partner'', David*, is truly the only person that has stood by me throughout this entire ordeal, and continues to.
David* and I* celebrated 22+ years together this past August 7th.
Along with the extreme physical pain caused by RSD; RSD also affects many other facets of my life; extreme changes in my so-called ''social life'', my physical relationship with David*, and many other things in which we all take for granted.
Fighting depression is a constant struggle. Finding the ''want'' to live, literally, is also a constant struggle. Even with the implanted Morphine/Fentanyl Pump, there is still such an extreme amount of constant pain, as Well as the side-effects, the countless medications needed, everything from eating to drinking is affected, leave every part of my daily life different than it's ever been.
If it were not for David*, and as mentioned above, a very few close personal friends, I honestly believe I'd have ''called it quits'', a long time ago.
Although some days are better than others, I just do my damdest to live my life, one day at a time, some times; one hour at a time.
Having been a Counselor prior to getting ''sick'', about 20 years ago, I decided that I wanted to try and help other people, to live with RSD, or any other Chronic Pain Syndrome. I had no idea how, but hoped that through the internet, I'd find a way for those seeking help, to find me.
So, I partcipated in other people's online Support Groups, and eventually decided to create my own Group, along with a website. Having never had and training in website creation, I learned through ''trial and a LOT of errors''.
*Most recently, in January, 2015, I have been diagnosed with Lung Cancer! This diagnosis is still too new, and raw, for me to discuss, just yet.*
*update*In the beginning of my ''story'', I touched on how I had to go from ''Doctor to Doctor'' until I finally met a Doctor willing to treat the Chronic Pain of my RSD.
The ''frustration'' I encountered during those years almost caused me to give up. For me, and I am sure like many others reading this, the ''psychological torture'' can be just as horrific as the physical pain itself.
So, I have decided to add a bit more to this ''pain journal'';
Aside from the constant, chronic pain that one has to live with, there is also the complete frustration of the constant fight just to find a Doctor that truly understands, and cares.
For about 5 years prior to finding my Pain Management Doctor, I had seen at least 15 to 20 Doctors and Specialists. I canï¿½t count the times I was told, ''It's all in your head'', ''It's psychological'', or, ''You're a drug addict, that's your Problem!''.
The System is "broken" and NEEDS our attention! This is one of the many reasons I chose to share the story of "My Life With RSD" on-line, with anyone wanting to learn about it.
The ''System'', to me, seems a bit too caught up in the small percentage of ''fraudulent'' patients, and leaving those of us with true and real Chronic Pain to suffer.
Since sharing my story of, ''My Life with RSD'', I can't count the number of Emails I have received. Almost all from people still in that search, still in that frustration, of finding a doctor. Some even willing to come to Pennsylvania to see MY own personal Doctor! Yet as extreme as that may sound, had I read one these stories of Chronic Pain, during the 4-5 years of Hell, or Frustration, as I've called it, I might just as well have been as desperate myself.
I will continue to Fight and to Speak Out as long as I can, and as long as there are others out there, like me, just trying/fighting to live from One Day to the Next. The Pain never does go away completely. However still, as there are days that are better than the others, I choose - To Live!
Aside from letting others know that they are NOT alone, if there were anything else I'd wish to gain from telling my story, it would be to get others to tell their stories as well. The more of us True Sufferers of Chronic Pain that get out there and Speak Out, the more attention we just might get and The more POSITIVE Treatment we just might receive!
We NEED to reach our Congressmen, our State Legislature. We NEED to tell them our Stories. Then maybe, just maybe, OUR statistics might be counted, and more attention paid to those of us that truly DO suffer from day to day.
Contact Your LegislatorsTo locate YOUR State Representatives, use this easy to use Government site:
U.S. State Representative Locator
To locate You State Senators, use this easy to use Government site:
Resources and Contact InformationTo learn more about RSD/CRPS, click on the link, ''What is RSD?''; created by the National Neurological Association, just go to What is RSD?
I have also created a ever-growing list of Resources and Information pertaining to RSD and Chronic Pain. Just click here.
Also PLEASE, click on the link below, it is a Yahoo! Group run by a Good Friend, Bruce. At this Group, Bruce collects stories of those ''Living With Chronic Pain''. He'll be using these stories to assist in Proper Legislation for those of us that DO suffer from Chronic Pain.
Go To: ChronicPainStories at Yahoo! Groups.
And Please, Tell YOUR Story.
Please free to contact me via Email at joeylee.com
RSD National Awareness Campaign
|Please help raise Awareness of Reflex Sympathetic Dystrophy|
to learn more on what you can do, please visit and join ''For Grace's National Awareness Campaign'' by clicking on the graphic below.
creating awareness for RSD/CRPS
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