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.

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!

letter to the "Normals"

A Letter to the Normal’s from a Person With Severe Chronic Pain"

 




 
Having chronic pain means many things

change, and a lot of them are invisible.

Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, it applies to everything. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it", may frustrate me to tears, and is not correct. If I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.


By: Skip

Body/Mind

Yesterday I saw my counselor: Sandi, she is so awesome!  I've been to a lot of Counselor's in my life, but she is by far; the best!  And she came along at the right point in my life.  My meds(for mental health) are finally at the right doses and the right combination of drugs.  I actually feel "Normal" for the first time in as long as I can remember.  Now, I have this Counselor who is not only working on my emotional state, but is working on my physical state as well.  She believes strongly in Holistic approaches.  Yesterday, I actually went into a mild state of hypnosis, (something I never thought was possible for me) and met up with my 8 year old self.  We had a long chat, it was so awesome!
I know to some people this all may sound very strange, I know it did to me at first, but it's really, truly helpful for Chronic Pain Patients with all our Depression, etc..  I recommend we all see a Counselor and try to find one that is interested in ALL of you! As I'm sure we all know; The Mind and Body are interconnected and in order to heal one, you need to deal with the other as well!

Yesterday I started doing laps up and down the ramp after dinner.  This is no small task as it's a fairly steep ramp! (pic at right).
I have been doing laps throughout the day every day for about 2 months now.  But, they were never consistent, so I decided to make myself do it every day, after dinner and increase it by a lap a day.  So, yesterday I did 2 laps, today I did 3.  It felt so good!  I have gained a lot of strength in my arms but the pain in my arms/hands is worse? I still can't hold my arms above my head either for more than a few seconds. much.  I just pray it will be the answer to these symptoms going away altogether!  I wonder how long it will take, though?

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......