Compass Functional Restorational Center

I went to the doctor yesterday for my post op appointment. I was also re programmed by Medtronic, my new lead is working down farther in my foot as it was meant to do, but still not as far down as my toes which was the target. I seen Medtronic first and then my Pain Manager. I'm healing well and few more weeks and I should be completely healed from the surgery. It can take up to 6 months for my lead to take to the spine, it has to grab onto it and stick into place. This is why it's so important not to do anything too physical, or move abruptly.

My pain Manager is putting in a referral for me to begin the Compass Functional Restorational program. http://www.sacpainclinic.com/compass.php

My doctor heads and leads this program and it's located next door to my pain clinic http://www.sacpainclinic.com/ (The man in the photo is my pain manager himself)

The program is 7 hours a day, 5 days a week for 6 weeks. It scared me. Seriously.
So scared I came home, rested, and then ate 5 peanut butter cookies. Diet goes bye bye.

My vocational rehabilitation eventually became home schooling. I was going to the actual school quite a bit away from home. I couldn't handle 4 days a week for 4 hours. Then I went down to 2 days a week for 6 hours or as long as I could tolerate. A few times I was able to put in an 8 hour day, when pain was lower and I became consumed in my studies. I only graduated from the pre requisite course. I have a Microsoft Office Certificate, but never graduated from the full curriculum which was Corporate Publishing.

In order go through the Compass program I have to pass a phycological evaluation, just like when I was first considered as a candidate for my Spinal Cord Stimulator. You have to be referred, considered and pass.

Of course I want to do this program, I told my Pain Manager I did. It's not being forced upon me. But God I'm scared to fail. I would be happy to not be on the internet all day, I am more than eager to learn new techniques to control pain, I'm looking forward to understanding flare-ups more than I do now and how to get through them.

I can't wait to pass what I learn onto my website and my pain groups, or anyone in chronic pain. This isn't only for people with RSD/CRPS. It's for people who live with Chronic Pain in general.

I don't want to let my Doctor down and they know I have volunteered to do clinical trials and more. To learn from me. I want my body to be studied and used while I'm alive rather than when I'm dead.

I want to go back to work I really do, but it will be a miracle in itself if I manage to get through so many hours, a full week, for 6 weeks. We have to set 3 goals for ourselves. I've been thinking about that since last night. Most people's goal is to return to work or volunteer. If I was able to volunteer outside the home, I would choose work. If I could handle being out and about, I would rather bring in some income for my family.

Unless it was to volunteer at the program, similar program or help others with RSD. Then that would be my pay, I would feel richer than any doing that.

Maybe my calling lies in this somewhere...

I know in my heart this illness was placed upon me for a reason...

A reason I just don't understand completely yet...

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"One can never consent to creep when one feels an impulse to soar". Hellen Keller
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And no more peanut butter cookies
sheesh

Until next time...

The 4 Stages of RSD

What RSD/CRPS looks like in some- These pics are of my right foot in 2007.


The Four Stages Of RSD/CRPS


Stage One

Stage one is called the acute stage and can last one to three months.

Some characteristics are warmth, coolness, burning pain, edema, increased sensitivity to
touch, increased pain, accelerated hair/nail growth, tenderness or stiffness in the joint,
spasms, limited mobility, some bony changes may be visible on X-Ray, abnormal amount
of pain for the injury. In this stage there is decreased sympathetic activity. For the patient,
she, typically a she, may feel as if their limb is on fire and is amazed when it actually feels
cool to the touch (this is due to the lack of blood flow to the extremities).

Stage Two

Stage two is called the Dystrophic Stage and can last three to six months.

Pain is constant, as in stage one, and throbbing, burning, aching, crushing in nature and is
exacerbated by any stimuli. The affected limb may still be edematous, cool, cyanotic
(discolored), or mottled (different shades). Nails are brittle and ridged. Pain and stiffness
persists. Muscle wasting may begin.

Patient usually starts experiencing short-term memory problems, as well as increased pain
from noises and/or vibrations, and other changes in the limbic system; these include the
inability to concentrate, find the right word when speaking. X-Rays may reveal signs of
osteoporosis. Patients may start to repeat themselves.

Some Doctors will try and use tools such as x-rays, Bone Scans, thermograms, and
others during Stage 2 and Stage 3 to confirm a diagnosis of RSDS. **Understand that
while these tests MAY show the presence of RSD, they are rarely conclusive and they
should not be used as the sole determining factor in whether a patient does or does not
have RSD. The only positive way of diagnosing RSD/CRPS is a physical exam by a
Doctor knowlegeable in RSDS.** These other tests should only be used as one of many
tools to aid in that diagnosis. They are also useful in tracking the progress of the disease
over the course of the time.

Stage Three

Stage three is called the atrophic stage and can last an unlimited amount of time. Pain as
usual is typically constant but can increase or decrease, depending on the person, and the
RSDS may spread to other parts of the body. At this stage irreversible tissue damage
may occur. Skin becomes cool, thin, and shiny.

Contraction of the extremity may occur as well as atrophy of the limb (decreased joint
movement). Skin atrophies (wasting away) and loss of movement or mobility may also
occur. X-Rays may show marked demineralization and increased osteoporosis.

At this stage many RSD patients are not likely to be effectively treated with blocks as the
percentage of SIP (Sympathetically Independent Pain) is now much greater than the
percentage of SMP (Sympathetically Mediated Pain), meaning the majority of the pain
signals are now originating in the brain and not at the original RSD site where a local block
would help.

Pumps are usually discussed at this stage but there are other treatments available
and more are coming all the time.

Stage Four

Most patients will never advance to Stage 4.

In this Fourth Stage, RSD is resistant to many forms of treatment and many
Physicians would now recommend a Pump or a DCS/SCS. However, there are a
great many problems associated with the use of SCS units for RSD patients, even
though they work well for other pain problems.

Also in this stage there is an involvement of the inner organs.

Please do not allow any Doctor to amputate the affected limb unless it is a medical
necessity due to gangrene or the like. While it is infrequent, there are some uneducated
Doctors out there who are performing amputations in an effort to eliminate the RSD pain.
This is not only barbaric it is ineffective. It not only does not work but it also in most
cases will exacerbate the RSD and increase the spread rate.

Always ask to speak to a Doctor's other patients before undergoing any type of implant or
surgical procedure. Educate yourself on the internet. Talk to other patients. In the end,
YOU are most responsible for what happens to your body. It is the only body you get, so
treat it with the utmost care. You deserve first class care always!

In Closing

THE PROBLEMS WITH STAGES

While being able to divide patients into neatly defined stages is seen as a plus by some
diseases, it has always presented a problem for Doctors who are trying to make a
diagnosis, and for patients who are trying to understand it, for the following reasons:

- Most patients have symptoms from multiple stages at the same time making a definitive
diagnosis difficult.

- Stage 1 and Stage 2 are so brief, sometimes less than a few months total, and very few
patients are diagnosed within those first few months

- Depending on which Type of CRPS you develop you may not develop many of the
symptoms listed for each of the stages, again making for a confusing diagnosis.

- Some patients may never advance to Stage 3 and only a very few patients will
advance to Stage 4.

- It may be difficult to determine your stage due to the combination and/or lack of
symptoms.

- A better benchmark of where your RSD/CRPS is may be mapping your percentages of
SMP and IMP over a period of months. Like diseases such as MS, RSD is a progressive
disease, meaning it advances over time. Placing a patient into a clearly defined Stage with
a highly fluid disease like RSD just doesn't make medical sense, as we are learning.

- Please note that not all Doctors agree on the existence of a Fourth Stage and is considered end stage 3.

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