Sunday, November 22, 2009

RSD/CRPS Flare-ups and Flare up protocols



RSD/CRPS Flare-ups and Flare up protocols

We often talk about Flare-ups, but what does it mean exactly? Some are unaware of the meaning or feeling, others aren't sure how to use the word to describe the hard, fast, usually short term inflated pain. When I say short term I'm meaning the pain you already endure hassuddenly jumped up, spiked, heightened.

The definition of a Flare-up is defined as as sudden outbreak of flame or light: a flare-up of
the embers. An outburst or eruption: a flare-up of anger.

A recurrence or an intensification: a flare-up of rheumatism (RSD/CRPS)

A Medical Dictionary would define it as a sudden outburst or worsening of a disease or an
area on the skin surrounding the primary site of infection (injury) or irritation.

I've altered some of the words to include RSD for better understanding for those unsure of
it's meaning. The precise definitions are located here
http://dictionary.reference.com/browse/flare+up

Most of us undoubtedly know what a Flare is though there are a few that are unsure of how
to associate the word with the meaning or their pain. I've had a handful of people ask me
what it is and so I wanted to take this time to help them understand the meaning and ways
of possibly easing them.

A young boy may have a flare up, we usually call these growing pains. Those with arthritis
may flare by intense cold. Asthma patients might flare because of allergies.

RSD patients might flare for a number of reasons from light to moderate activity, weather
changes, cooking dinner, playing with their children or grandchildren to nothing at all. It's
important to make every moment count despite the pain or be faced with bitterness, anger
and frustration all our days.

A flare for me is the fire which already burns steadily (7+) on a daily basis to a raging
inferno (10) and isn't limited to a single sensation.

For others it may be a pain level of 2 that springs to a 5 or a 6 that becomes a seemingly
unstoppable 10. These flare-ups might last an hour, can last a week, and some have been
known to last much longer. I am blessed to feel moments of 4/6.

I've been through several flares that was either one very long flare or one rolling right into
another with minimal break in duration or intensity. It becomes hard to tell if it ever ceased
at all until it eases enough that I know I'm through it for the time being.

I've learned to help myself during these times. Duration, frequency and intensity is
something that I have to take control of. We all have to. We truly have to. The tools I use
during these times are called my "Flare-up Protocol". My flare up protocol includes the 3,
20's.

The 3, 20's are:

Exercise (ie, Yoga, stretching, walking, if able, light weights, activity, etc)

Modalities (ie, anything that can be placed on the body for pain relief, such as a tens, heat,
hands, etc)

Distraction (ie, Memory master system, games, meditation, relaxation, fun, etc.

These can also be considered coping strategies.

My favorite is laughing.

The 3, 20's mean 20 minutes of exercise, 20 minutes using modalities and 20 minutes of
distraction.

These should be done whether or not one is experiencing a flare, but especially during. And
up to 3 times a day.

While it's easier said than done, the worse thing to do for a flare-up is to do nothing at all.
Bringing us back to the use it or lose it theory which is quite accurate. Doing nothing can
cripple us just as much as the pain itself.

I imagine a few of you might be thinking "You've got to be kidding me?! You want me to
exercise when I'm hurting this bad? You must not understand" Oh but I do, I've said it and
thought it a hundred times over myself.

While some will not want to take this to heart, we have to take responsibility for our own
pain, everyone has to learn to and implement their own Flare-up protocols to get through
these extra overwhelming, overbearing, debilitating flares.

As people we expect our doctors to take our pain away and we become discouraged when
there aren't any answers to satisfy our questions. We become depressed and insecure, yet
We have to remember that RSD/CRPS is an incurable illness. Classified incurable because
there isn't a cure to it. There really isn't anything the doctors can do to fix it. If the injury is
correctable, it probably isn't RSD. Our health care professionals can help us with
medications and procedures, and that's it really... just help us along.

We're usually directed to pain management when our other doctors are at a loss. Pain
management is just that, management. Again, not a cure. An area of practice that helps us
manage our pain, not make it disappear. They are intended to help us live some sort of
fulfilling life when nothing else can be done. Pain management is usually a last resort and the rest is up to us.

We might not like it but we have to take primary responsibility for managing our own pain
because there isn't enough knowledge or medical and scientific certainties out there to do it
for us.

Flare ups are apart of having RSD/CRPS or a chronic pain condition. They'll never go away,
we have to learn to accept this. But, with practice, we can better learn to control them.


Do you have a Flare-up protocol? If so, would you share it with us? For those who do not,
it's our hope that through this thread the sharing of idea's and coping strategies become
helpful to one another.

Please feel free to offer your thoughts and comments on the above written as well.



©2009 Twinkle V./rsdcrpsfire


Feel free to link to: http://www.crpsadvisory.com/rsdcrps_flareups_and_flareup_protocol.html

2 Days Down and Up Again

I've been down for 2 days. The price I pay for activity, even a few hours up and about in the home. Sometime yesterday the man brought me in 2 pillows that were suppose to be xmas gifts, we propped one between my legs. I was laying on my left side, we slid it in close to my crotch so that my right leg was elevated as well as part of my butt cheek. I've had butt damage since my original injury but when RSD spread to my butt after my last SCS surgery, I've had a new struggle to deal with. I often sleep sitting up on my left butt cheek. The family often comes in to lay me down, I rarely know I'm sleeping that way. Just another obstacle I'll defeat. I do worry a bit about my next SCS surgery. My battery needs to be replaced. Don't want to think about it too much because then I won't dwell. It's just one of those things.

I'm just glad that pillow helped me or I'd still be in bed now and I'm not. Instead I've been up since 5:45 a.m.

He gave me permission a couple of weeks ago to get my hair cut. (He likes long hair) and my hair is long and covering my scar on my lower back. But.. it's also unhealthy from the meds and the damage that comes from the illness itself, so am thinking a cut may help.

Going to have it long layered. Right now there are no layers other than upfront where bangs use to be and which are now near my shoulders, way past my chin.

I'm not allowed to have more than 2 inches taken off the back length though. I was thankful right away. And since he will be there with me, he can keep an eye on the stylist.

I'm not having it styled there and all that. Just cut. I've had bad experiences in the past with cuts. Tell them 2 inches and they take 6. Oh was he pissed!

I've applied for an advocacy position at MDJ. A seperate position from Leading. Don't have to be one to be the other. (at least I don't think). I didn't over do myself. On the application I said I would put in 5 hours a month. A month! I can do that.

I already do that. I already do all that the job entails.

We've been (okay not me) been chopping wood for days. A man gave us tons of wood, some of it isn't cured yet, maybe next year for those. But he's also letting us go back to get more as needed. And initially we got the van filled twice for two trips.

This is going to help us a lot this winter. Won't have to use the heater. We do have to be careful for burn days though. So on the days we can't burn.. we snuggle up.

Home schooling our son is going okay. There really isn't anything to it, but making sure each of his 6 subjects are completed each Wednesday when he meets with the teacher to turn in and get the following weeks work.

His PE includes chopping wood. lol

Trying to get up the energy to go xmas shopping today. Last years xmas was whoohooo all around, this year much much less, but it's all good.

Gonna have to use the wheels today, but am getting use to it, plus there are times when I don't have to at all anymore.. I can push myself, it's just that doing so knocks me off my ass for a few days after.
Some times have to make it worth it.

Off to do some promoting...

Wishing you all warm holidays to come,

Until next time..



Thursday, November 12, 2009

Military Surprise and Updates

It's been quite awhile since I've written. Our daughter is home from the Army. I was awoken to an early birthday surprise. We expected her home in December. 3 days before my birthday I was called out of our room with my eyes closed, I was led by the man, told to open my eyes and there before me was our daughter in her military wear, with a bouquet of balloons and holding a cake. I was so happy.

She came home with a certificate as an IT specialist. The Army is paying for 14 more months of schooling. GI bill, Health insurance for a time being, 2 more years of using the PX, she can continue to honor herself and the Army wearing her ACU's when appropriate, etc. We're really proud of her effort and achievements.

A few days before, on Monday, I was gifted another early present. A baby kitten. He's adorable and we bonded closely right away.


On my actual birthday, the 26th of October, I was in a terrible flare and rested the early part of the day. They made me a spaghetti dinner. Loved it!

I've been busy at MDJ, but we hired 1 co-leader approx. 2 months ago and 2 more approx. 2 weeks ago.

I've managed to pry myself away from our bedroom and am out in the living room much more that I had been the last several years. My laptop hasn't been in our bedroom since our daughters return home. Had already planned on making that change and did that same evening.

When I turn in for the night, I'm no longer near a computer. If I nap, I'm also not near it.

I've been playing Wii with the family and Guitar Band (I'm the singer) It's fun!

I'm still only taking 2 meds from the 7 I was on for many years. I went from 20mgs of Suboxone a day to my current 12. 8mgs in the morning and 4mgs in the evening. 1mg of Suboxone is the equivalent of 25mgs of Morphine. I used to take 30-45 mgs of Morphine a day. Suboxone would be as if I was taking 300 now and when I was taking 20 it would equal 500. eeps! I still get a lot of break-thru pain and some days I still can't budge so I turn to relaxation, breathing and meditation.

So that I didn't have to go back on Zanaflex/Tizanadine (24mgs of muscle relaxer, I was on for 5 years) I opted to try Calcium and Magnesium supplements instead this last Monday. It's for the Dystonia and myoclonic jerks and spasms. It's worse when I'm laying down or about to fall off to sleep, but it started back in my entire body which was previously eased by the relaxers.

I continue to use the tools and coping strategies learned in the FRP aka my Flare-up protocol.

Phase 2 is Monday evenings.

Beginning yesterday, We're home schooling our son. It's actually Independent Study (ISP)

We created his daily subject schedule of 6 courses last evening.

Am staying as busy as possible even through the crashes.

I know there's much more, but think that's it for updates... cannot recall much more going ons at the moment..

Hope you all have been well..

Until next time...


Tuesday, September 15, 2009

Holding My Head High/Myoclonus

My head is held high as I move up and forward in life. I've been spending hours upon hours job searching. Compiling several possibilities, shortening my list to the even better ones, applying, etc.

I have a lot of experience, in a lot of areas, none expertise. The last 2 days I've been focusing more on work from home positions, but I really want to work outside the home a few hours a week. I've already hit brick walls and I knew I would. It's the working outside the home jobs I'm not yet having any luck with. So far, my legs are the problem in these. While I believe I could do it with a sit/stand station or reasonable accommodations I'm not what they are looking for.

I'm in one of those damned if I do damned if I don't situations even applying. The application process.

The law doesn't require me to reveal my disabilities, but if I'm not honest how does that work establishing honesty with a prospective employer from the get go? It doesn't.

I am extremely uncomfortable about this. I have to tell enough for a chance at accommodation that would better enable me to work or I'd be fired the first day as I would not be able to perform my duties.

Sitting is the less of my worries, but I cannot sit longer than an hour a straight either. I could push it to an hour and a half and would, but I'd be screwed in body doing so.

Standing in one place is for 5 minutes is just as bad as walking and pushing myself to 10 minutes, when I can go 7 minutes fairly well putting pain aside.

I'm trying hard each day to be able to wear shoes for a fair amount of time, but none of it would even equal a 4 hour work day. I had not worn shoes in nearly 9 years prior to my FRP. During desensitization therapy I started with sandals that covers the top of my feet and made it to about hour finally during the last 2 weeks of the program. I can could wear tennies for approx. 30 minutes. Since being home I've increased my sandals to 1.5 hours at a time, and a few times twice a day. Tennies close to an hour and longer if not walking.

I have 3 pair of sandals now. Yay! I love the look of all of them. They are totally me!

I have NOT been released to return to work, but I have been okay'd to search. My docs will approve or disapprove when an opportunity for hire has occurred.

This all seems complicated for me.

What if someone hires me? I still need it to be approved by the docs. I would feel disgraced to to have to tell the employer.. oops sorry Doc said nopers. I feel like they would think... then why did you even apply and waste our time? That would make me feel bad.

I have Myoclonia or Myoclonic seizures/jerks now. I fall into 4 of the 8 separate types of this. It's extremely scary when it's happening, but so far it only happens when I'm lying down or trying sleep. I can't imagine it happening when sitting up or out and about. As it is, it briefly causes my heart to stop, skip, and pound like in fear or sudden fright, and I have to remind myself to breathe again.

Doc did say my new med should help this in a few weeks. I do hope so because this happens at least a half dozen times a night.

So that there is no misunderstanding, these are not epileptic seizures of my brain. It involves my nerves and other factors. I was diagnosed with Dystonia a few years ago.

We got a new puppy that was delivered from Los Angeles last night. I'm raising him for our daughter until she comes home from the Army in December. He's 9 weeks old and she named him Sergeant. He's a feisty lil shit. Already commanding my attention and all. Am already potty training him and I'm feeding him by our daughters schedule for him.

He's already chewing on things.. like.. um me! And that's a no no. Will bite him back if he keeps it up. Am not kidding. ~smiles

Until next time..

Thursday, September 03, 2009

As the weeks comes to an end

What a very busy week it's been and in so many different ways. Dealing with people changing names thinking they can have a brand new start or be someone different. Others being mean to one another. Never thought people in pain could be so awful to their peers. Cat fights all week. I had to ban 1 person for the time being if not indefinitely, hired an assistant the week before that. I'm managing to get my own self situated and as soon as I do I'll start my driving lessons back up. I had to take a break during my med changes the last 2 weeks. I'll find out at my next appointment when I can move forward with this.

When I lay down to try and sleep at night I play my Kitty Cannon game on my Iphone. The original game is called Kitten Cannon and it's on addictinggames.com.

This is the lite version but it's still just as fun. I'm in the top 10 of the highest scores in all of CA. And for all of the United States.. 16th or about. It's my sleepy time sport. ~grins

I've become so un-trusting that those I really do trust I think will hurt me some how. I suppose because of those few that did in the past in the name of friendship.

Most people won't remain having anything to do with you if they aren't getting something bigger out of it. Ulterior motives and then some.

It reminds me of why I like to be alone. No one can hurt me and I can't hurt them.

Even in my work I keep a distance. I do what I need to do and bounce right back out of there. For one, I don't thrive on drama. I'm don't care to be sucked into the he said/she said stuff, yet I also worry that I'll get pulled in some how.

The Senior Leader is back from months of vacationing now. Yay! In a few days and after some rest, he should be taking over most of it again. Being lead Leader in charge all this time was exhausting.

I did my Yoga every time I felt stress coming on. It helped a lot! I don't take pills for anxiety, stress or fear anymore. I use my own resources that I was taught at the FRP.

I go to Pain Management every 2 weeks now instead of every month. Not sure when it will shift back to the normal schedule.

I'm off to play my game some more...

Until next time..

Wednesday, August 26, 2009

OMG! It's true!

I am 4 days off Morphine. Last night was terrible. I couldn't hold anything down, I was freezing, I was hot, I kept ending up in the bathroom and I was as high as a kite.

I did my induction yesterday afternoon. I was given 2 halfs about 20 minutes apart in the office. When I got home I was to take another half. 4mgs every couple of hours until midnight and start the full 8mg tablet in the morning. They dissolve under the tongue. YUCK! It's been compared to being 100 times stronger than morphine and 10 times stronger than Fentanyl. (I really don't know about that).

It is though without a doubt the strongest med I have ever taken. I've been looped since yesterday at my induction. I imagine I'll stay this way until my body gets use to it. Could be weeks, months, or years just like any other med if a tolerance is built up. Don't like the feeling... I mean I went to pet the dog at the end of the bed and it wasn't the dog it was a pillow. ~blushes

BUT LEMME TELL YA... OMG! It's true! My pain is so much better. Already!

My pain level hasn't been higher than a 5 since I started it. And there have been times it's held at a 3. I go back to pain management on Monday, when I switch to full Suboxone pain relief is suppose to be even better.

and know what? Moments.. just moments....I didn't feel anything. Nothing!
It was like a reverse scared! I was scared because I didn't feel anything. Can you believe that? It didn't last long.. but it was there. I mean it wasn't there...

Because of those seconds.... those minutes.. I'm not even sure if it was real or not.

~inclines my head...
For a few broken up minutes..

I didn't hurt at all.

Until next time...


Saturday, August 22, 2009

My Next Big Day- tommorow

Tomorrow is my next big day. It's the last of the Morphine. The man picked up my meds and I'll be taking Catapres/Clonidine HCL and Ativan/Lorazapam to help me through the withdrawals. I've never taken either of them. On Tuesday I'll take my first 8mg of Subutex in the presence of my Pain Manager's. I'll take it twice a day and 1/2 tablet as needed. I have a weeks worth and will move from it to Suboxone the following week.

I hired a co-leader for my MDJ RSD group. This comes at the perfect time since I'm not sure how I'll be doing from tomorrow to Tuesday until I get home.

The man who I call the lead leader or senior leader has been vacationing for months now. I am glad he is.. we all have to live and have fun in life. Yet I've also been beyond busy. I'm looking forward to having an assistant. The girl who was chosen will be a wonderful asset to our team.

My driving isn't too good yet, but have been practicing.

I figure in the next couple of days if my bark or bite becomes too much..

Just yank my chain. lol


Until next time..