Life in Pain: Great Expectations

Life in Pain: Great Expectations

We live in a world where seeing is believing.

This can be a challenge, especially when you live with an invisible disease.

My Complex Regional Pain Syndrome (CRPS) has caused very few physical changes, and is mostly characterized by intense, unrelenting pain. My pain is invisible to you, but is very real to me. I am the only person who can quantify it and knows that it’s actually, physically there. It is like air, invisible yet ever present.

Having a condition that people cannot see is truly a curse. People look at us and do not see the disease that we live with. Instead, they look at us and see the same person that we were before we were plagued with this condition. They don’t notice that our smiles no longer touch our eyes. Instead, if you look into our eyes, you can see the pain that resides just below the surface.

Amanda SiebeMost of my friends know that before I got CRPS, I was very active. Now, I feel like a shadow of the person I use to be. I look in the mirror and barely recognize the person looking back. What I miss now is living life. Spending the last eight months trapped inside the four walls of my room is not living.

Because people cannot see the fire that rages inside of me, they still expect me to behave the same. To do the same things that I used to. They don’t understand that I cannot go to the store or play outside with my son. I cannot even have an intimate relationship with my husband because I am in so much pain.

I know that I’m not the only one that feels this way. I’m a member of several online support groups, and everyone has the same story. We are all our biggest critics, and are hardest on ourselves for not being able to do the things that we were once able to. We feel like we let down those around us. We feel like we let down our children, our spouses, our family, and our friends. The amount of guilt we feel, coupled with the pain that we feel; it is no wonder that CRPS is also known as the “Suicide Disease’.

Many who suffer have not only their life stripped from them, but also their dignity.

I can no longer drive, clean my house, take care of my family, or do many other things that people expect me to be able to do. They don’t understand when I tell them that I cannot. They look at me like I’m lying and exaggerating in order to get out of participating in life.

That is not the case.

Intellectually, I’ve come to terms with this. Emotionally, I still have a ways to go. Of all the people that still expect me to live a normal life, I’m at the top of the list. Every time I feel even the least bit okay, my disease is at the back of my mind. Being able to sit in the living room or at the kitchen table is a big step for me.

Anything outside of the four walls of my bedroom is.

I try to get my fill of normal things I used to take for granted — smelling food being cooked on the stove, sitting on the porch in the sunshine (or the rain), coloring at the table with my son. All surprisingly difficult.

The simplest pleasures of life seem just out of reach for me. Every day seems harder than the last. But the life I want to have, and the life I expect myself to be living, keeps me going.

Amanda Siebe lives in Portland, Oregon 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.

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joni

You say it all girl friend. We have to keep going, our families need us. Even though we feel the guilt just reading a story is amazing for little ones.
I felt reaching out to other has literally saved my life. I get support, understanding and energy from our talks. No person without the pain can give to us. Hugs from around the world and thanks for making my life that bit easier. Love you xxxxx

Amanda,
I absolutely loved your story! Thank you for such honest and thoughtful insights into this horrific pain disorder. I volunteer with RSDSA in some of their communications initiatives. I you would be interested, I would love the chance to talk with you about potential opportunities for us to collaborate. Contact me at slleebe@gmail.com.
Best, Stefanie

Chris Decapua

I have had CRPS for over 5 years. I tried nerve blocks, physical therapy, pain medications (which I can’t tolerate), and acupuncture. I used to say if they told me I could jump off a cliff and survive it, but eliminate this disease I’d do so happily. The upside of this disease is all the wonderful people I’ve met who also suffer with it and can so easily understand how difficult living with CRPS can be. Keep the faith; glad to see you’re trying acupuncture!! Praying for a cure, but til then you describe it so eloquently maybe you can bring more attention to our plight!! Sending soft hugs via internet to you; hold your son close when you can every moment that makes you smile is like erasing seconds of pain:)

Hello Amanda, I’ve seen you on other pages. If you would like more traditional and nontraditional insight into a possible way out of your complex pain, here is some helpful information. I’m a family doc who started using Acupuncture in my daily practice and found it helps a lot of pain and nerve issues. There is a possible link between myofascial diseases and neuropathic pain. Janet Travell, MD/Simons, Edward S. Rachlin, MD and C. Chan Gunn, MD and Devin J. Starlanyl have spent their careers studying these issues. The culprit maybe myofascial tissues/Trigger Points. They have viable therapy protocols that could help reverse the nerve and tissue damage.

To begin the healing of the damaged tissues, one has to begin daily therapy. Myofascial tissue release therapy is on a spectrum from simple stretching, massage, yoga, Pilates, hands-on manipulations, acupuncture, dry needling to finally Travell trigger point injections.

Cerridwen Kucera

Dear Amanda, I , too, have CRPS and like everyone else experiencing this very debilitating disease, I get so sick and tired of bowing out. I so understand and wonder if this will ever be addressed in the proper way. Will they ever come up with an answer. Just to let people know what this is like makes me feel like I am whining, or complaining and I KNOW that is NOT the case. I try everything I can to keep going. To the point of Overdoing everything. I do not have any miracle herbals or pain meds to tell you of. I can only offer you my continued support and let you know that You are not alone and You are Loved. One day at a time seems to be it. Be Blessed in all you say and do dear one. Just keep filling your head with all of the blessings in your life as best you can and try to laugh at everything. Your new friend, Cerridwen

It is story’s like your own that encourage me to continue. It’s knowing that there are other people that struggle with this ghost disease that they have been stricken with, most people have never heard of and nothing about, unfortunately it makes this disease more difficult to deal with. Society dictates if we’ve never heard of it quiet simply, it doesn’t exist. This disease is all to real, it is painful, debilitating and affects every part of your everyday life. Determined not to give up hope that society will become more educated and Dr. will find answers, until then one day at a time.