Life in Pain: Moving Forward

Life in Pain: Moving Forward

Having any disease can be frustrating.  With my Complex Regional Pain Syndrome (CRPS), I have exhausted all of the treatments that are available in Portland, Oregon.

The only thing that I’ve not tried is a spinal cord stimulator (SCS). I’ve been apprehensive about trying that one. My doctors have been pushing it a ton, but from what I’ve read, it doesn’t have a great success rate. Most people that have an SCS device still have to take strong narcotics to make it through the day.

The risk of CRPS spreading up my back is also very high, which would be awful. Right now, the only position that I can be comfortable in is sitting up in bed.  It would be awful if I lost that one comfort.

For those that don’t know what an SCS device is, let me describe it.  Basically, there are two electrodes that pass up the spinal cord to the thoracic spine.  The electrodes send an electric current down the spinal cord to block the peripheral nerve sensors. You don’t feel pain, but instead feel a messaging/humming throughout the affected area of my body.

Theoretically.

With the odds of it failing, spreading my CRPS (which is already spreading a ton), infecting my spinal chord, and having a battery pack installed in my side… I just don’t think it’s something I want to try.

Part of the reason that I’m reluctant is that I want to have another baby.  There have not been many studies on women with SCS devices that want to get pregnant, from what I have seen.

When I asked the SCS representative about the questions and concerns I have, he told me to speak to my doctor about them.  It was not reassuring hearing that, since my doctor had told me to ask the representative my questions.

I like having as much information as I can get before I enter a major procedure and, right now, I don’t feel like they have answered my questions.

800px-Seattle_4So, since there are no other treatments in Portland for me, we picked up yesterday and moved up to Seattle, Washington.

It’s so nice to get a change of pace. Being outside the four walls of my apartment is wonderful enough, but add the beautiful view and the big windows in my new place… and I feel like I’m in heaven.

The goal to moving up here is that I get into Washington Rehabilitation Institute, which has an 8-16 week program for patients specifically with CRPS.

How this program works is that they put an epidural catheter in my back for several weeks.  This allows me to work out and use my legs without being in horrible pain.  The goal is not only to reset my brain into thinking that my affected area doesn’t feel pain, but also allow me to detox from my pain medications.  During the time, I’ll be working out and taking classes eight hours a day, six days a week.  It is intense, but I welcome the challenge.

Part of me still has hope that I’ll get back to firefighting or working as an EMT, but the logical part of me knows there’s no way that will happen.  It’s time to find a new dream.

I guess, in a way, writing has become my new dream.  It was something that I never had the time for before the onset of my CRPS.  Had my CRPS not happen, I would still be working 55+ hours a week, never see my family, and never would have time to write.  Now that’s almost all I do.  I love it.  It has become a form of therapy for me, and a way to coping with all of the life changes.

I’ll never “get over” the life that I lost, but now it’s time to start thinking ahead to the new life I have.

Amanda Siebe

Amanda Siebe

Amanda Siebe lives in Seattle, Washington with her husband and son. She writes about her daily battle with chronic pain and CRPS in her blog “Life in Pain.”

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

For more information, read our User Agreement and Terms of Use.

 

newest oldest
Notify of

If you are truly concerned and afraid of the cord stimulator spreading your disease further or having another child and having your disease spread further. It is double jeopardy and the ones who will be suffering for this selfish decisions in this situation in the long run is the new husband and your current young aged child that you already have. Their quality of life is already revolving around you and your needs and will continue to grow even more, as they have to give up even more as your disease digresses. The new husband will now not only be your primary care giver, he is raises the young child and now a baby? So looking at it cord stimulator may improve your quality of life now where you can actually be a participating member again of the family unit and enjoy your time with your new husband and do things physically now with your current child and watch him grow up with your own eye, instead of from a bed where you state that you are currently at almost every hour of the day. Or have a child, be in the same current situation or even worse. My wife has RDS/CRPS and is now currently in a wheelchair. When I married her, she was at the beginning of the disease and had a young child, as you do now. We sat down and weighed the pro’s and con’s of having another child, as I always wanted to have my own bloodline, an son to pass on my family name or a daughter that I would have the honor to walk down the aisle and dance with her during a father and daughter dance on her wedding day. At first, we wanted the child, but the disease progressed and the pain she was in and missing the special and daily events of her own child’s life that I got to enjoy, but she did not because she was in bed in pain; I found myself being selfish one. I married the package and my eyes were open when I initially married her. I was projecting my dream on to her that was causing her physical harm, pain, and taking away from a blessed family we already had. After she got the spinal cord stimulator, we got to enjoy at least eight physically active years as a family and never resented any minute or moment of watching her be with our daughter and sharing the moments together. Although, she is in a wheelchair now, she got her law degree, drives, and is every part in participation in our family all the way down to soccer practice. We would never trade out decision that we made together when we were at the crossroad that you are at now, as I still get to walk my daughter down the aisle and dance with her during the father and daughter dance at her wedding in the future. However, I know myself and if we… Read more »

Mari Anne Roberts

Hello. Like you, I have tried all possible CRPS treatments and continue to look for something new. I have recently been researching Calmare therapy and will be giving it a try next month. Good luck to you!

ann

Hi Amanda, very nicely written. I have also heard that childbirth can cause CRPS to spread, not sure that that would be a deciding factor in having another child, however, it is good to investigate. I have also heard of the intense program that you are getting ready to embark on. It’s awesome that you are able to do it! I wish I could do it, but, because of my fibromyalgia, it would be counterproductive. Anyway, looking forward to how it works for you.

joni

Hi Honey
It is very scary, but as we CRPS people know one step at a time.
Funny how we both are starting a course. Mine does not supply the pain free part. Just the suck it up part.
Alsways know you are in my heart.
Love and hugs your friend Joni

Stefanie Lee Berardi

Amanda,
There was a recent article by Vallejo et al reporting on a multi-center clinical study of a new Medtronics SCS device that I designed specifically for back pain. The novel part of this device is that it does not produce any sensation in the user. The device is not on the market yet, but is in development. I can send you the article if you are interested.