RSD AWARENESS DAY/EXPLANATION

Here's a good explanation of RSD I found on facebook. I thought I'd share it with other RSDers and anyone else who cares for someone with the dreaded fire monster!  Please participate in the Orange awareness day. sounds fun. now I just need to find orange nail polish. lol.

Awareness of RSD/CRPS

Saturday, August 27 at 8:00am at ALL OVER THE WORLD.

Ok Ladies and Gentlemen it is time to do something to raise awareness for the little-known disease called Reflex Sympathetic Dystrophy (also known as Complex Regional Pain Syndrome). For one day (8 am till 8 pm) We are asking the Ladies to either paint/or get their nails done orange and for the gentlemen to wear an orange shirt. Please participate to raise awareness. Reflex sympathetic dystrophy (RSD), also known as complex regional pain syndrome (CRPS), is a chronic progressive neurological condition that affects skin, muscles, joints, and bones. The syndrome usually develops in an injured limb, such as a broken leg. However, many cases of RSD involve only a minor, seemingly inconsequential injury, such as a sprain. And in some cases, no precipitating event can be identified. Pain may begin in one area or limb and then spread to other limbs. RSD/CRPS is characterized by various degrees of burning pain, excessive sweating, swelling, and extreme sensitivity to touch. Symptoms of RSD/CRPS may recede for years and then reappear with a new injury. Types: Two types of RSD/CRPS have been defined: Type 1 - without nerve injury Type 2 (formerly called causalgia) - with nerve injury Both types express the same signs and symptoms. Incidence and Prevalence Millions of people in the United States may suffer from this chronic pain syndrome. RSD/CRPS affects both men and women, but is more common in women, and can occur at any age, but usually affects people between 40 and 60 years old. The National Institute of Neurological Disorders and Strokes reports that 2% to 5% of peripheral nerve injury patients and 12% to 21% of patients with hemiplegia (paralysis on one side of the body) develop reflex sympathetic dystrophy as a complication. The Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA) reports the condition appears after 1% to 2% of bone fractures. Causes and Risk Factors RSD/CRPS appears to involve the complex interaction of the sensory, motor, and autonomic nervous systems; and the immune system. It is thought that central nervous system (brain and spinal cord) control over these various processes is somehow changed as a result of the injury. Conditions associated with the onset of RSD/CRPS include: Trauma (e.g., bone fracture, gunshot and shrapnel wounds) Spinal cord disorders Cerebral lesions Heart disease, heart attack Hemiplegia (paralysis on one side of the body) Infection Radiation therapy Repetitive motion disorder (e.g., carpal tunnel syndrome) Surgery In 10% to 20% of cases, no direct cause can be found. Injury that precedes the onset of RSD/CRPS may or may not be significant. RSD Signs and Symptoms The symptoms of RSD/CRPS may progress in three stages acute, dystrophic, and atrophic although this notion is subject to debate. Acute: burning pain, swelling, increased sensitivity to touch, increased hair and nail growth in the affected region, joint pain, color and temperature changes; first 1-3 months Dystrophic: constant pain and swelling, limb feels cool and looks bluish, muscle stiffness and atrophy (wasting of the muscles), early osteoporosis (bone loss), 3-6 months Atrophic: cool and shiny skin, increased muscle stiffness and weakness, symptoms may spread to another limb Characteristic signs and symptoms of sympathetic nervous system involvement are : Burning pain Extreme sensitivity to touch Skin color changes (red or bluish) Skin temperature changes (heat or cold) Pain is usually disproportionate to the degree of injury and can be triggered by using the affected limb or by stress and can be spontaneous or constant. Symptoms associated with an immune reaction include: Joint pain Redness Swelling Accumulated immune cells in the site Frequent infections Signs of motor system dysfunction include Difficulty starting movement Increased muscle tone Muscle spasm Tremor Weakness Other symptoms include: Migraine headache Excessive sweating Fatigue Dermatitis, eczema Complications Patients with any chronic illness, including RSD/CRPS, often suffer from depression and anxiety. Skin, muscle, and bone atrophy (wasting) are possible complications of the syndrome. Atrophy may occur because of reduced function of the limb.

Mental Illness vs. Physical Disease

This subject is really getting to me, especially recently. First, a very dear friend, who I haven't spoken with for a year but who knows how much better I'm doing asked me if I was walking yet? I was very hurt by this. Because my Mental Illness is finally under control doesn't mean my Physical diseases are cured!  Also I've had several doctors who when they find out I have a mental illness, treat me like my physical condition isn't real, it's just 'All in my head'. I have been told that my pain is a somatization disorder, which, basically is the same thing as psychosomatic or in simple terms; all in your head!

I am so frustrated!  Don't these idiots have enough education to know that mental illness is a completely different animal than physical disease? I mean, yes they are intertwined in some ways, but, they are also very different. It is possible for a mentally ill person to develop physical diseases!Until my current doctor, I couldn't get a doctor to treat my pain, I suffered for a year, feeling like I was going to lose my mind ( even more, lol) because of the intense, severe pain.

I have a condition called RSD/CRPS: (Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome)  It's been a recognized condition since 1865 when a doctor in Philadelphia started noticing the symptoms in some of the soldiers he was treating in a hospital there.  It was then and for many years called; Causalgia which is latin for: Burning Pain'. The burning is just one, but the most awful, of a myriad of symptoms.

 It is not curable, though on rare occasions some people have gone into remission. I did, back in 2001.  I was diagnosed in 1998. I was in remission for 4 1/2 months. it was heaven!!!!

Then, the RSD Monster began to rear it's ugly head in an even feircer manner. Not only did the pain return but all of a sudden my legs would just give out on me and I'd just fall. This would happen on various occasions, without warning. Then, on the last day of 2001, I was in a car accident. I only got whiplash, but this disease can spread or get worse from the smallest thing, even just a needle prick, so within 2 months, the symptoms, especially the pain and falling got ten times worse. I couldn't go for the long walks I loved anymore, every time I walked I'd fall at some point, so we decided I should be in a chair to get around, after  I had fallen into a busy street and just missed being hit by a car.

That was 9 years ago and I've been in a chair ever since. For the first 6 1/2 years I would get around the house, holding onto things but now I can't walk at all.

What really sucks about RSD- I should say one of the many things- is that it's unlike any other condition. Like Fibromyalgia, which I also have and have had since I was 16, the more you move the better it is for you. But with RSD P.T. and movement only make it worse.  So, what do I do? I went to a physiatrist (A doctor of Physical Therapy) who knows alot about RSD, which is the first doctor I've met in Oregon who has even heard about it, had prescribed me a power chair because all the years of pushing myself caused carpal tunnel in both hands.

Back to the mental illness issue:

I have bi-polar type II, which is referred to as bi-polar depression. I've been depressed my whole life. but I have moments of either really happy and outgoing, even loud. Or moments of intense anger and frustration. but, mostly I'm just depressed.

When I began using a wheelchair, I took to bed and spent 8 years there. My son; Vincent helped me alot and all his friends knew me from visiting bedside.

Over a year ago, My stress at home was just out of this world! which only made things worse! My caregiver wasn't doing her job and my house was a complete mess most of the time, which due to a little ocd on my part, drove me crazy as I couldn't do anything about it. the depression got worse and the state came in and moved me into an adult foster home. the final decision was mine, but I was so bad off, I just agreed.

Something happened to me about 3 weeks after moving, I had no more stress, I had a new companion dog; Buffy ( my neice gave her to me for christmas) and I had someone to care for me and for the first time in years, I was calm and not depressed so much.

I decided to start fighting back against the desire to give up and got myself out of bed, I even put my laptop on a desk, where it still sits today, so I would have to sit up and use it, I wouldn't allow myself to lay down during the day, except for short periods to help alleviate the pain. I began taking pictures, crocheting alot, reading and just keeping busy.

Today, I'm still in the foster home. I'm quite happy, though I still suffer, of course, from the intense pain and fear I will never walk again, I get out of the house and go for rides to the store, or whatever.

The only thing missing in my life is my companion. she passed away last november and I'm still heartbroken and lonely for her. But, my caregiver wont allow me to have another dog. I just need to adjust.

I spend hours outside reading. I have found that as long as I have enough distractions, I can do one thing until the pain gets too bad, then move onto another thing, etc...

I like my life now. Whereas a year and a few months ago I was just wanting to die. that's all I wanted! now I want to live, I want to see my grandchildren someday, I'd like to transition into my own place again sometime.

I have hope! but more importantly I have a strong faith in the Lord! I plan on going back to church soon.

I want everyone who suffers from a IPS (Intractable pain syndrome) to know there is hope, just take the bull by the horns and refuse to give up and give in to the depression! Fight, fight, fight!

Blessings to all!

Margot

Up until February of this year, I had spent the previous 8 years in a self-imposed prison, of sorts!  When you're living it, you don't know why you're there, you just know that the pain and depression are all-consuming!

In july of 1998 I was diagnosed with RSD (Reflex Sympathetic Dystrophy) or it's new name: CRPS (C omplex Regional Pain Syndrome)  This was brought on by a simple, yet painful fall at work in which I sustained a mild contusion in my left knee. No biggy right? Wrong! The pain just kept getting worse. Workman's Comp. sent me to a Orthopedic Surgeon, who did  minor surgery, followed by alot of testing and Physical Therapy. 6 months later, the pain wasn't just in my left knee any longer, but in both knees and feet.  Not only that but there was a variety of pain, depending on the moment, the body part and sometimes the temperature outside.  The worse of which was the deep burning in my feet.  This is where the diagnosis came in.

I, then started seeing my PCP, who tried to help me control the constant pain with Morphine, tylenol #4 and Soma.

One day in March, 2001 my whole Church prayed over me and within 2 weeks the pain was gone!  I thought the Lord had seen fit to heal me! I was ecstatic!  Of course, I still suffered from the much less severe Fibromyalgia pain and continued with the tylenol #4 and soma for this. I immediately, got a job in the local hospital in apple Valley, Ca. where I lived at the time.  It felt so good to be 'almost' "normal" again! 4 months later, the pain started again and along with it came another very strange symptom; Falls!

I'd be walking along, minding my own business and BOOM! down I'd go! No warning, nothing!

I ended up getting fired from the hospital because I was missing too many days!

That's when I got one of my hair-brained schemes and talked my husband at the time, into selling everything we owned and moving to Oregon!  Actually, this scheme is one that, nine years later, I don't regret!  I love it here!  It is so beautiful and green!  

On December 31, 2001 we were in a rear-end collision and I sustained whiplash. No biggee, right? WRONG!  For some reason it caused the RSD to spiral out of control.  The pain was so much worse and I was falling a lot more!  By March, 2002 I was in a wheelchair and 8 years later, still am!

It's been so difficult to get Doctor's up here to treat chronic pain, even RSD, which is known as the worse chronic pain known to man!  All I could do for the pain, even when I was prescribed meds, was lay in bed.

In August of 2003, my husband left us and moved back to California.  My son and I were all alone up here and the poor guy had to take on the responsibility of caring for an invalid mother.  I hated it!  I'm sure he didn't care for it either.

In December of 2004, we got accepted into Government housing.  We got a nice little duplex. However, we had no help to move.  The Church Vincent had been going to for 3 years was too busy to help!  One lady, who had been giving Vin rides to church brought one load over, which is how we got our beds, couch, etc... then my brother and nephew brought a couple of loads over in his van, but it ended up we lost most everything!

For the 5 years we lived there, I dug myself deeper and deeper into my 'Cell' and rarely came out.  It was such a difficult undertaking just to get myself ready to go somewhere, just to be stared at with either; pity or dislike, that I gradually stopped going anywhere.  Actually, that had happened a few years before.  By the time we lived in our duplex, with the vertical blinds on my bedroom window, that looked just like a cell, I had stopped going outside at all, unless I had an appointment, but I even missed most of those.  I was dropped by specialists, counselor's and Psychiatrists due to my not showing up for so many appointments.

I always had one caregiver or another, who I relied on for almost everything!  The only things I did myself was get dressed and shower, and sometimes even then I got help. ( I did all my own pottying, lol thank God!)

In January of this year, 2010, Vincent moved down to No. California with my Neice Rossi and her family.  I kind of wigged out and the stress of running my own place, with a constant mess my caregiver wasn't taking care of and the worry that I would be kicked out due to some of  "The Kids", (friends of Vincent's who I kinda adopted) staying there without permission from the state, when my Caseworker suggested I move into an Adult Foster Care Home, I jumped on the idea!

I do kind of regret it now.  If I had been better able to handle things, I could still be in my own place, with all the things that meant so much to me, still with me.  But, on the other hand....it was the best thing I ever did!

I'm not sure if it was the removal of all the stress, the new combination of Psych Meds, the having to go outside to smoke or a combination of all of the above, but over the first 2 months I lived out here,  My life changed completely, for the better!  I started staying up, out of bed all day, besides the brief respites to lower the pain level.  I stopped watching T.V. during the day, for the most part, when for the 8 years prior, my T.V. was always on.  I began to do my Crocheting and working here on the computer.  I have a laptop, but I moved it across the room to my desk, so I'd have to sit up and work on it.  

I began keeping my room clean, making my own bed everyday, taking more baths, brushing my teeth and washing my face and doing my hair, every day!

I have to admit, I really let myself go in the 8 years prior.  I was in a state of almost continual deep depression.  Now, even on bad days, I take care of myself and my buddy: Buffy

I haven't missed an appointment in 6 months now.  I see my counselor every week, without fail, whenever I make an appointment, I go to it!  That is a huge deal for me!  I've realized that, although it is quite normal for Intractable Pain Patients to seclude themselves from the world, it's not necessary!

It helps my pain so much to function this well, to be self-sufficient.  My caregiver doesn't have to do much for me anymore.  All she really needs to do is: my laundry (but, I fold and put them away and make my bed), Cook and distribute my Medications.

I look forward to my future for the first time in many, many years!  I no longer am just waiting to die, but enjoying (for the most part) living!  I can't wait to see what's next for me!

I'm grateful to God, My son; Vincent and everyone who put up with me for so long, for sticking by me, although I must have been a real 'downer' to be around!

I've discovered a new hobby as well,  Photography. Just me, my dog and my $15 ebay camera and I start snapping.  I don't know anything about photography, but it's fun to try to find the right lighting and angles to make the best shot, not to mention the fact that it gets me out of the house and keeps me distracted from some of the pain!     Hobbies are important for anyone, they relax us when we're stressed, give us a huge boost to our self-confidence, not to mention self-worth and for those of us in chronic pain, they distract from the pain, if only for a short time!

I recommend everyone find a hobby. One of my favorite things to do is color posters.  You can buy the posters online, at different skill levels, buy some markers, I use gel pens and go to town! It's creative and gets those creative juices flowing.  Another thing is paint by number.  I've done a couple that were drawn by my favorite artist: Thomas Kinkade, they're a lot of fun!

The biggest lesson I've learned over the past 81/2 years is not to give up and don't think about tomorrow. Just live one moment at a time,  because otherwise, it becomes too overwhelming and it can overcome you all too quickly!

The Road to the Cell...

I've been in this current cell for almost exactly 4 years. But my sentence was handed down 11 years ago this Wednesday. it started out as a usual day at the county school i worked for as a medical assistant to the nurse. what's kind of interesting is that i had been diagnosed with fibromyalgia, almost exactly 11 years before that day. the date was; November 19, 1997. it was only about 2 hrs. into my day, when the nurse said she had to leave for a while and was expecting a call, to make sure i listen for the phone while out of the office. i was about 75 feet outside the office, rearranging a supply closet, when i heard our line ringing and quickly put down a box and ran to catch it. (never run at work, lol) the plastic mat that was under the desk had been pulled out about a foot for some reason, i always assumed the janitor had done it while cleaning and just forgot to put it back. the heel of my shoe caught the edge of the mat and in the blink of an eye; BAM! i was down. My full body weight came down on my left knee, and we're talking a full 5'7", 165 lbs. of me. i did manage to reach up and get the message for the nurse, lol! Within 5 minutes the nurse came back and saw me sitting on the floor behind the desk chair, my hose were torn and my knee had already swollen up pretty huge and was a purple/blue color. if you do happen to get hurt at work, it's always a good idea to have a nurse, lol!
She had me iced & bandaged in record time. Of course the supervisor was there in record time also! She had me off to the insurance's doctor for the obligatory x-ray's and chat with the hack. Sorry doc's, no offense but any of you who lie to the insurance co. for the extra dough is a lot worse than the word i used.
the xray tech saw a hairline fracture, so did the doctor; at first! instead he diagnosed it as a contusion! what is that anyways? a glorified bruise?
I had gone back to work the same day as the fall, on limited duty, which was just my regular job without going to check on the classrooms or any other miscellaneous work.
i was in the process of fighting for my job. I had been hired on as a temporary employee and now, after 7 months on the job, they opened my position up to be a full-time position. But, already being in the position didn't matter, they were accepting applications and I had to apply and be interviewed like everyone else.
Amazingly (NOT!) they interviewed me a few weeks after the fall, and I was not hired! Gee! I wonder why? ha!
My husband at the time; Donovan, was a big, dark and very good-looking man, 4 years my junior. He was getting ready to lose his job at the same time, (again!) He never could keep a job.
But, thankfully we had my workers' comp. checks, though it was hardly enough to live on, especially for 3 people; My son, Vincent (from a previous marriage) was 8 years old at the time. Although I may be biased: He is and was the greatest kid ever! He's always been so sweet and way more intelligent than myself, thankfully! We ended up moving into our best friends' apartment. They had a spare room and the 3 of us moved into it. They had one of those bunk beds, where the lower bunk is a double and the upper a single. So, it actually worked out well for us. Though those living conditions are difficult in any situation, so we were able to move in less than a year.

In the following 8 months (from January - august, 1998)
I was sent to a specialist because my "Contusion" wasn't quite healing the way it should. After many tests and extensive history given, the doc performed a relatively minor surgery on my knee called; Arthroscopic. This was June 30, 1998. About 2 weeks following the surgery I began a horrid 6 week regimen of Physical Therapy 3 times a week.
by the time that torture (too melodramatic?) was over with the pain in my left knee had escalated to near intolerable levels. Not only that but, my left foot and right knee were joining in too! It's true~I swear!
When I went in to see the specialist for our final visit, after P.T. was completed I decided to be honest with him about the strange spreading pain. I really expected to be told to go to a Psychiatrist, it sounded crazy even to my friends, family and myself!
But, I gotta admit, even over 10 years and 7 really bad doctors later, he was kind and understanding. He asked me more questions, examined the other joiners and stated to his nurse; (paraphrased) 'it looks to me like Sympathetic Dystrophy'. His nurse agreed and I, the drama queen stated through tears, "I'm not crazy"! Then Dr. K told me that I was far from crazy that this condition was very much real and the sympathetic part of the name meant that it was some kind of dysfunction of the sympathetic nervous system. I was floored!
Dr. K. told me that it needed to be treated right away, therefore I should see my primary doctor and get the ball rolling, so to speak.

As I lay here after moving from California to Oregon, being homeless for 2 months in very rainy, cold, wet weather, then wrecking our only vehicle, (not to mention the whip lash which, I believe to have played a large roll in causing the spread to include all 4 limbs) going from a 165 lb. walking, self-reliant fairly young, wife and mother to a 220 lb.,(who knew all the drugs and sedentary lifestyle would cause weight gain? not me!) divorced, wheelchair-bound, bed-ridden mother of: (( still a wonderful, but now an almost 19 y.o.; (his birthday is this Thursday) first year college student.)) totally dependent on others to do almost everything for me-----10 years later.

Wow~! that was a wordy bit, huh? Well, if there's anyone left reading this background nonsense, I will now begin my intended story of;




my life alone in my cell......