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

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,

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

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:

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...